My Life as I "StandUP2ME" + OI/POTS

#125~ ME/cfs: Emily's Last words ~ RIP

noreply@blogger.com (ME_CFS_unite) — Thu, 22 Mar 2012 18:11:00 +0000

Well folks, That "Invisible Illness" ME/cfs has just claimed another loving soul.
Another that fought long and hard and did her share of Advocacy..
Please share this with as many as you can that think this illness is STILL "All In Our Heads."

RIP~ dear "Emily Rose Collingridge" 1981-2012

Maybe something will make them finally realize that this could be their friend or daughter or son or grandson..... NO ONE is exempt.

May 12th, our 20th Anniversary of Advocacy is coming soon....
Please speak to your local Support Groups and make plans NOW.
We can NOT sit still any longer or again..

Please ASK your friends to HELP if they care for you "at all."
Other illnesses have "Walks" done by friends and families...
WHY Won't OUR's do the same ???

ASK THEM WHY ???
After they read this.... Thanks.

********
Emily's mother Jane has asked for these last words from Emily to be reposted. They were written over many weeks – while her daughter still had the strength in her body to do so. Please repost as this is Emily's final wish.

Jane Collingridge: "It has been said that the following is hard to read. But that is all we ask you to do: to read it, to forward/re-post it and to pledge your support for the many thousands of people like Emily who have to LIVE it"

Emily’s Appeal:

“My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old.
In April 2011 I turned 30. I still have ME.
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease. My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion.

If you met me you may well think I was about to die now – it’s like that every single day. After all these years I still struggle to understand how it’s possible to feel so ill so relentlessly. My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor’s visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I’ll go mad with the suffering. Of course it can also be as bad as this for no particular reason – and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music – the list is long.

ME has made my body an agonising prison. My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I’m on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable – this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration. Many days I feel utter despair. But, unlike some sufferers, over the long years in which I’ve had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going. My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong.

As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it.

This is something that must change. And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope.” By Emily Collingridge 2010-2011

Thank YOU for taking the time to reading Emily's "Last Wish."

May you HEAR some of her heart thru her words and know that
there are over 17 million people with this "Invisible Disease" that has
now been ignored for 3 generations, and our Memorial list is Way TOO LONG.....

NOT ALL DISEASES "ARE VISIBLE," but that doesn't mean they are not REAL.

http://www.severeme.info/about-emily.html
http://www.blogistan.co.uk/blog/mt.php/2012/03/20/emily-rose-collingridge-1981-2012

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#124- APA Bullying RE: DSM5 Watch site.

noreply@blogger.com (ME_CFS_unite) — Fri, 06 Jan 2012 10:59:00 +0000

Please note that Suzy Chapman's blog, DSM-5 watch, has moved to
http://dxrevisionwatch.wordpress.com/.
The reasons are Orwellian, Suzy says here http://www.psychologytoday.com/blog/dsm5-in-distress/201201/is-dsm-5-public-trust-or-apa-cash-cow

"Until last week, my website published under the domain name
http://dsm5watch.wordpress.com/ .

On December 22, I was stunned to receive two emails from the Licensing and Permissions department of American Psychiatric Publishing, claiming that the domain name my site operates under was infringing upon the DSM 5 trademark in violation of United States Trademark Law and that my unauthorized actions may subject me to contributory infringement liability including increased damages for willful infringement. I was told to cease and desist immediately all use of the DSM 5 mark and to provide documentation within ten days confirming I had done so."

"Given my limited resources compared with APA's deep pockets, I had no choice but to comply and was forced to change my site's domain name to
http://dxrevisionwatch.wordpress.com/.

Hits to the new site have plummeted dramatically and it will take months for traffic to recover - just at the time when crucial DSM 5 decisions are being made."

Please spread the word.
***
PS: added by a friend:

Will the APA please recline on the couch?

When I attempt analysis of a situation or occurrence, I include questions like; ‘how else could things have gone’ or ‘how else could x have behaved’. Seeing alternatives often highlights the choices that have been made.

The APA letter to Suzy Chapman (see http://dxrevisionwatch.wordpress.com/) appears to be written in legalese to my untrained eye, so it may have been written by a lawyer acting on behalf of others. Therefore the wording of the letter does not give clues about motives or processes. The fact that it is legalese and is threatening does give information.

How else could it have been done? Perhaps a friendly email from someone asking if Ms Chapman would mind corresponding or having a telephone conversation about her website may have been an option. Or if more purposeful action was thought appropriate, a letter could have requested changing the domain name and pointed-out that the current name infringed copyright. It might have been nice if the APA had offered to compensate Ms Chapman for any costs and inconvenience incurred in helping with their request.

In other words, a collegial and civilized approach was feasible and threats and other heavy-handed tactics could have been saved for a last resort. They were not.

Therefore it appears that a choice was made to be heavy-handed. A major organization versus an independent citizen. It looks like bullying from any angle.

The APA are fussing about anyone using their branded ‘DSM’ name. Naming a thing is always symbolic of understanding something about its nature. Renaming is indicative of change and therefore changing its nature. This results in loss of the old identity. That the APA is in some respects reinventing itself with DSM-5 seems quite likely. The comfortable old identity, partly bound to DSM-IV is being lost so the organization is thrown into uncertainty. Rather like a person experiencing a significant change of role. They may be excited by new possibilities but at the same time feel the loss of the old way of being. This can lead to insecurity and any challenge to the identity – old or new, is felt acutely.

So here is an organization which represents perhaps the stodgiest of all the health specialities, conservative, authoritarian and awkward in relating to others that is having an identity crisis during its transition from DSM-IV to DSM-5.

Little wonder they are behaving somewhat hysterically as they appear to be in neurosis. The longing to cling to the known and trusted good-old-ways seems to be in conflict with the desire to modernize, get hip, and start relating to the real world rather than living in the deep and cosy recesses of its own bottom. The good-old-days when patients did what they were told and didn’t answer back are gone. The times when a few highfalutin 4 syllable words daunted commentators is past. It’s a brave new world.

Take heart APA. There is a valued place for psychiatry and psychology in this frantic modern world (as I hope my light-hearted ‘analysis’ shows).

Change will happen. Try to identify the unavoidable losses and make them a conscious sacrifice. Be accepting of uncertainty about who you are and what you are for – you cannot completely control these; only discover them on your journey into the future. Try to avoid imposing your own fears on others along the way.

Permission to Repost.

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#123~ Email- FaceTheNation, ~ ASAP Please

noreply@blogger.com (ME_CFS_unite) — Sun, 11 Dec 2011 12:12:00 +0000

How would YOU like being referred to as "a descriptive phrase in a political discussion that has absolutley NOTHING to do with your
illness ?

Please think about it... You or your child have now been reduced to an adjectivce in the gramatical lexicon of this society...
Are you Happy to let this continue ? Or will you Help and Be Part of the Solution that Encourages the "Press + Media" to "Actully THINK" before they spew out words and phrases that are not accurate and actually do harm to Millions ?

Time for Phone Calls, and emails folks !! PLEASE THX

♥from Robert Miller~ another ME/cfs long time patient...

" I have been speaking with Rob at programing of Face the Nation, who has assured me that he would pass on to John Dickerson who made the comment, that ME/CFS patients are offended. Rob did give an apology over the phone and we agreed that Mr. Dickerson had no idea of what he was saying and his ignorance of ME/CFS would be the reason why. I also filed a complaint with CBS corporate headquarters. I should get some reply Monday.

I encourage all to write emails and send them at least once daily, until we get a proper response. Also call the number listed 1-202-457-4481 and if you get a live person, just tell them you are a chronic fatigue syndrome patient and you were offended by John Dickerson's remarks on Dec. 4, 2011 on the "Face the Nation program". If you get a machine please leave the same message. Send emails to
"John Dickerson"
and it will be forwarded to Mr. Dickerson. "

*Offending Paragraph from the Transcript where
"WE become a descriptive phrase" in a political discussion !
on Page 4 ~

"Face the Nation" transcript: December 4, 2011 - CBS News
www.cbsnews.com
http://www.cbsnews.com/8301-3460_162-57336330/face-the-nation-transcript-december-4-2011/?pageNum=4&tag=contentMain%3BcontentBody

"Face the Nation" transcript: December 4, 2011

JOHN DICKERSON (CBS News Political Director): Well, it's like there's a chronic fatigue syndrome about-- about Romney in the Republican Party. I mean, the-- the voters just do not want to move to him. And what's extraordinary about the Gingrich rise is both that he's come back to-- to live here. But it says something about Romney's weakness. If Gingrich is the nominee, and the fact that he's ahead, he is going against two fundamental tendencies of Republican politics in recent history that we had the Tea Party which doesn't like establishment politicians. That's what Gingrich is. Social conservatives, another major force in Republican politics used to say the moral character of the candidates was fundamental to their being President. Well, we know Gingrich has a past. If he is the nominee, he runs in the face of those two major trends of Republican politics.

PLEASE Stay Polite and let them know from your heart how this made you feel...
If you send an email, then send them some links for resource...
Maybe some videos or other articles that could ENCOURAGE gthen to also
write some artivles or delve fruther into this illness so we can get more GOOD Coverage.

Possibles are the ME/CFS Alert Lewellyn King videos with either Bob or L. Jason.
Maybe the Davod Tuller article on the History of abuse by the CDC of this illness.
Maybe the New "2011 ICCriteria for ME" to understand HOW many Dr's around the world ARE also changing thre name/definition and attitude.

If you need exact references, please leave a comment and let me know which ones you are looking for and I will try to provide you with the appropriate URL address....in my reply to you.

Please do it THIS weekend or this Week for MAXIMUM EFFECT before the article gets too old and the Holidays are here and take over the News coverage, OK !

Thank YOU for any Help that you can procvide...
every email and phone call DOES Help Our Cause...
Numbers DO Matter in thids age where TV stations are Fighting for their Existence
Fighting up against the internet and even the Cable stations..

If WE do NOT Speak UP for Ourselves than WHO Will ??
NOW is the Time...
Do NOT Let Our Coverage DISAPPEAR...
Stay Active and Enclourage your firneds to do the same..
If some call and some write.. we CAN Make a Difference~
Bless you all that choose to a Help and speak UP for yourself
and those that are unable. Please remember The Children
and those unable to speak up...

We may not have a lot of money to give to Charities at this time of year
or at any time actually.. but we can give a few minutes of our time
now that we have been givem the blessing of this internet
or making a quick phone call..

End the year by Feeling GOOD about Yourself and what
you have been able to do to Help others around the world..
*****************
Also, at the same time, please do NOT forget out op-going Help
for those in the UK tpo Help them Build
a BioMedical ME Research/Hospital Facility....

The U.K. Campaign is called "Let's Do it for ME"
Here's their blog with many links and info for you to
familiarize yourself with them and get to know
how you cna help no matter where you are...
This after all IS a World Wide Illness of Millions...
and sadly the patients have ben theones that have been doing MOST
of the PR to help get the Medical World and the Pubic World
and the World's Economies "Take NOTICE."

Let's Do It For ME
http://letsdoitforme.blogspot.com/p/about-us.html

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#122~ Restoring ME/CFS Research, Education, and Patient Care to New Jersey

noreply@blogger.com (ME_CFS_unite) — Tue, 08 Nov 2011 23:59:00 +0000

Restoring ME/CFS Research, Education, and Patient Care to New Jersey
CFSAC Public Testimony, Nov. 8th, 2011
By Kenneth J .Friedman, Ph.D.

I wish to inform the Chronic Fatigue Syndrome Advisory Committee and other stakeholders in the ME/CFS Community that there is a window of opportunity to potentially restore ME/CFS research, education, and other, related, scholarly activities to one of this country’s most populated states: New Jersey. The Governor of New Jersey has formed a UMDNJ Advisory Committee the purpose of which is to advise him as to the future of the University of Medicine and Dentistry of New Jersey (UMDNJ). The options range from doing nothing and keeping UMDNJ, the largest, free-standing, academic healthcare University in the United States, as is, to completely dismantling the University and dividing its components and assets amongst other New Jersey academic institutions. The Committee is now willing to accept comments from the public.

The impetus for the establishment of the UMDNJ Advisory Committee may reside in the corroded image of UMDNJ, forever charred into this nation’s psyche, by its purposeful, $35 million dollar, double-billing of Medicare. However, of equal or perhaps greater concern to the ME/CFS Community is the February, 2010 decision of the University to ban ME/CFS research, education and related scholarly activities from the University using the pretext that such activity is not “professional” but rather “personal.” According to that policy, any and all scholarly activity related to ME/CFS may be performed performed by faculty only outside of regular, normal business hours. The policy further forbids use of the University’s portal to the internet for any ME/CFS-related research, and denies use of the University’s email client server for correspondence with anyone about anything related to ME/CFS.

The University’s policy to ban ME/CFS scholarly activity came after two, related New Jersey Medical School attempts to minimize the professional nature of ME/CFS related activities: (1) the New Jersey Medical School refused to consider the Consensus Manual for the Primary Care and Treatment of Chronic Fatigue Syndrome a peer reviewed publication despite its having been reviewed and approved for publication by the Senior Editor of Harvard University Medical Press, Dr. Anthony Kamoroff, and its translation into two foreign languages, and (2) the New Jersey Medical School maintains that five years of service on the CFSAC did not constitute professional, academic service at the national level since individuals without scientific background, such as Magic Johnson has served on Advisory Committees.

UMDNJ controls all three of the state’s medical schools, as well as the state’s only dental school, school of nursing, school of health related professions, school of public health, and graduate school of biomedical sciences. This ban of ME/CFS scholarly activity in the University is, therefore, impacts patient care in the greater New York metropolitan areas, as well as the advancement of ME/CFS research, and healthcare provider education and training throughout the United States. Equally important, however, is the precedent that this establishes for other medical schools and schools training healthcare professionals throughout the United States to establish similar policies.

UMDNJ’s actions are clearly an attack on academic freedom – the right of college and university faculty to pursue their academic interest – and should be opposed on that basis if for no other reason. If UMDNJ wishes to continue as a university, then it must behave as such and afford its faculty the rights afforded to University faculty elsewhere. For UMDNJ to continue as a healthcare university, it needs to comply with the principle of academic freedom.

Of particular concern to the ME/CFS community, is the failure of UMDNJ to honor the CDC’s ME/CFS policy as articulated by its Director in 2006, Dr. Julie Gerberding, who stated, “We are committed to improving the awareness that this [ME/CFS] is a real illness and that people need real medical care and they deserve the best possible help that we can provide.” Why does the Department of Health and Human Services’ continue to provide funding to UMDNJ when UMDNJ maintains that faculty who engage in scholarly activity related to ME/CFS are engaging in non-professional activity? The Department of Health and Human Services continues to give money to a University which knowingly and deliberately obstructs one of its agency’s mandates. Why?

Governor Chris Christie’s UMDNJ Advisory Committee has received testimony from UMDNJ employees expressing the belief that UMDNJ be retained in its current configuration. Current employees may have a vested interest in retaining UMDNJ in its current corpus. Stakeholders of the ME/CFS Community may have a different opinion, since dismantling UMDNJ would remove the ban and restore ME/CFS activities to New Jersey’s healthcare centers. The CFSAC may wish to make a recommendation to the U.S. Secretary of Health based upon the facts conveyed herein and, perhaps, after its own, further investigation.

According to what was published by UMDNJ, comments may be submitted via email to:

The window of opportunity for submitting comments is not specified.
I would not wait long.
Thank-you for your attention.
*************************
Thanks for your Testimony and for supplying the typed copy for the committee.
Send those emails.. Here's a Place WAITING to be Used Properly...
and if used for ME/CFS the Revenge would be OH SO Sweet !!

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#121~ CFSAC this week-Please Read~ THx♥

noreply@blogger.com (ME_CFS_unite) — Sun, 06 Nov 2011 15:04:00 +0000

Please Share and Post Widely

CFSAC Demonstration NIH & CDC
ME/CFS Patients Advocate for Patients

Time:
Tuesday at 8:00am - Wednesday at 5:00pm
Location:
Holiday Inn Hotel Washington-Capitol
550 C Street, S.W.
Washington, DC
___________________________________________________________
ME/CFS Patients Advocate for Patients :
Email me at bobmiller42@msn.com if you will attend CFSAC for more details
Please SEND an email and let us KNOW you WILL attend either from HOME or in Person.
__________________________________________________________
WASHINGTON, D.C. – On Nov. 8, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) will protest against 25 years of neglect by the National Institutes of Health and the U.S. Centers for Disease Control. The protest will greet members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) just before they begin their bi-annual meeting at the Holiday Inn Capitol, Columbia Room, 550 C St. S.W., Washington D.C.
___________________________________________________________
Patients attending CFSAC Protest will be provided with Shirts and Props:
We will also have access to Wheel-chairs for those needing assistance
___________________________________________________________
Patients unable to attend CFSAC can be with us via the Web:
Make your own signs, shirts and Banners then post pictures on your own Facebook Page and on the Facebook Page for this Event.
We will update you with video from CFSAC as possible, Watch for updates on the websites that will be posting video & information:
____________________________________________________________
Contact via email the representatives from DHHS listed below starting after 5 pm on Nov.7th Eastern and by Nov. 8th. at 8 am Eastern, so we will have their undivided attention AT the meeting.
____________________________________________________________
TO:
nancy.lee@hhs.gov,
BCC:
howard.koh@hhs.gov, and at ash@hhs.gov,
wanda.jones@hhs.gov,
kathleen.sebelius@hhs.gov,
francis.collins@nih.gov,
afauci@niaid.nih.gov,
BCC: to me at hebs1reel@yahoo.com to track the numbers
Thank You !!

Let them KNOW you resent their descriminating against OUR RIGHTS to be able to access the meeting LIVE since SO Mamny of us have Sensory overlaod and Must turn the Audio DOWN and READ the closed captioning~
Have then NOT been listening to the Testimonies for the last many years ???
WHO are the DEAF ones here ?

1) Let them KNOW we will NOT be Silent for another 25 years and it's TIME to PUT these patients First and 2) get some ACTUAL Correct info out to the MDs that treat us out in the REAL World and 3) to start addressing the issue of Disability for those that have Fallen thru the cracks because of their 25years of lack of addressing this disease, 4) and time for the NIH
to Fund some CLINICAL TRIALS NOW~
5) Treat those w/o Disability that have been sick for 20+ years and STOP this Genocide that is in it's 3rd Generation.. 6) and tell the FDA to leave our Supplements alone !!! 7) Adopt the 2011 CCCriteria for M.E. and 8) FIX that CDC website that is an International Embarassment and source of Abuse for aboit 15 million people.
__________________________________________________________
Those that are able to attend will do our part. We know you will Stand with us, YES ?
____________________________________________________________
Together we will move science forward,
United We Stand, Divided We Stay home for another 25 years.
So get your signs ready in Person AND ONLINE ♥ Thank you All
************************************
Agenda – CFSAC Fall 2011 Meeting
November 8, 2011

9:00 am    (Eastern Standard Time, USA)
Call to Order
Opening Remarks

Roll Call, Housekeeping
Christopher R. Snell
Chair, CFSAC

Nancy C. Lee, M.D.
Designated Federal Officer
(Wanda's replacement)

9:10 am    International Classification of Diseases-Clinical Modification (ICD-CM)
                by Donna Pickett, RHIA, MPH
National Center for Health Statistics
10:00 am    Public Comment    Public
11:15 am    Break
11:30 am     Welcome Statement from the Assistant Secretary for Health
                Howard K. Koh, M.D., Ph.D
12:00 pm     Agency Updates: AHRQ, CMS, FDA, HRSA    Ex Officio Members
1:00 pm    Subcommittee Lunch = Subcommittee Members
2:00 pm    Public Comment by Public
2:45 pm    Break
3:00 pm     Future Interdisciplinary Research for CFS Utilizing a Variety of Scientific
Disciplines: lead by Gailen Marshall, M.D., Ph.D. and Committee Discussion
4:00 pm     Committee Discussion
Past CFSAC Recommendations    by Committee Members
5:00 pm    Adjourn
*************************************
Agenda -- CFSAC Fall 2011 Meeting
November 9, 2011
9:00 am    (Eastern Standard Time, USA)

Call to Order
Opening Remarks

Roll Call, Housekeeping
Christopher R. Snell
Chair, CFSAC

Nancy C. Lee, M.D.
Designated Federal Officer
(Wanda's replacement)

9:15 am    HHS Office on Disability    Rosaly Correa-de-Araujo, M.D, M.Sc.,Ph.D
Deputy Director, HHS Office on Disability
10:00 am    Centers for Disease Control and Prevention Webpage
Eileen Holderman, Nancy G. Klimas, M.D., and Ermias Belay, M.D.
10:30 am    Break
10:45 am    Agency Updates: CDC, SSA, NIH-Ex Officio Members
11:45 am    Minimal Elements for Papers-Leonard A. Jason, Ph.D.
12:15 pm    Subcommittee Lunch = Subcommittee Members
1:15 pm    Public Comment-Public
2:15 pm    Break
2:30 pm    Committee Discussion
Finalize Recommendations by Committee Members
4:30 pm    Adjourn

****************************************************************
INFO from the CFSAC below, proving they are NOT accommodating patients with "sensory overload" for this meeting that MUST "Read the captions" let alone those with "Hearing Disabilities." THIS is just ONE Reason we are Protesting.... NO LIVE VIDEO this time !!
****************************

Audio Call-In Information
PLEASE Call in and SHOW them the NEED that we ARE Listening.. and we NEED the LIVE video!

The Meeting of the Chronic Fatigue Advisory Committee will be available via AUDIO Lines. The following call-in information will provide access to the meeting via audio lines:

Please dial the participant dial-in number:

Participant Dial-In Number: 1-(866)-395-4129

Please use the following passcodes for each day:
Passcodes:
Tuesday, November 8: 24756185
Wednesday, November 9: 24759937

Please note, each caller can press *0 at any time during the call to contact the operator for support.

There will be an operator on the line to welcome you and each caller will be asked their name and email address (this is NOT a requirement). You will be placed into the conference.

During the lunch hour, callers may hold the line or choose to call back to access the conference.

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#120~ Nevada Newsmakers Annette Whittemore Interview–Transcript

noreply@blogger.com (ME_CFS_unite) — Wed, 02 Nov 2011 04:11:00 +0000

Following is the transcript of the October 26, 2011 Nevada Newsmakers interview with Annette Whittemore, for those of us that have difficulty with online video:

Sam Shad: There have been a lot of things swirling around and one of the reasons I wanted to have you on this program today is to clear up from what are rumor and innuendo to what are actual facts concerning the institute, and concerning the publication in Science Magazine of the study of a couple of years ago. Bring us up to date on exactly what’s going on.

Annette: Well first of all Sam thank you so much for letting me come in and talk to you today because I know so many of the people out there that are suffering want to be reassured, and I think that that’s the most important thing today that we talk about from a very calm perspective of the work that is still going on at the institute. And you’re right, there have been, a lot of questions that have, that still remain unanswered about whether or not there is a retrovirus that’s associated with individuals who have this disease and many other diseases. And, I can just tell you that the work is still promising, that we are still headed down that direction very very methodically, and in an attempt to actually prove ourselves wrong. And so far we’ve been unable to do that when it comes to human tissue. But there’s several experiments that are left to be done, and so I can just say that we are still thinking along those lines, still looking very much at all pathogen possibilities, looking at the immune system deficits, and also characterizing the information. So, we’re very very much involved. There’s a study that will be starting November 1^st in which we will literally be testing one lab against the other, looking at different methods, and determining which methods are actually the most accurate when looking for pathogens such as a retrovirus.

Sam: Now, when the article first came out in Science Magazine, the first study, since then, it wasn’t completely retracted. There was one person out of many that retracted a portion of their work. Could you explain that for us?

Annette: That’s right. Dr. Silverman found in his laboratory that there was contamination of the samples that he had worked on, and therefore he removed his part, and I think he had one figure in this entire paper. However, there still is a lot of confusion about what we think we’re seeing in the actual patients. And what some of the doctors have described as XMRV, that was actually created in a laboratory. And so, at the end of the day, is there just one XMRV or are there several? And are we looking at a virus that’s completely different in our subset of patients versus the ones that were looked at in the tissues of prostate cancer. So far we’re saying “not completely different”…

Sam: …and that was what was originally found..

Annette: Right, right. It was originally found in Dr. Silverman’s laboratory, and Dr. Silverman originally found it in prostate cancer. And the connection that Dr. Lombardi eventually they ended up looking at this together along with Dr. Mikovits and so it’s still an incredible puzzle. But we’re really excited about the fact that what has happened as a result of this has been so much more attention, so much more funding and a very very serious validation of this illness that just hadn’t occurred before the WPI came along.

Sam: One of the things that I always like to refer to so the people who are not as familiar with this as we might be, that this is kind of like when they came up with, not a cure, but a way to control AIDS through the retrovirus. It wasn’t a one simple thing. It developed over many many years. And now, AIDS is not a death sentence.

Annette: Absolutely, and it does take time. A process like this takes so much time to go from discovery to actual medicine within the doctors’ offices. But you know, that is what the WPI is all about. We are very much patient centered. We’re here to provide ultimate treatments that are going to be effective for patients, and we’re here to find the truth. So whatever it is, there..I have..I think we’re really trying to keep our egos out of it, and be able to say that t he most important thing, and to keep remembering it, is the patient, and getting effective treatments. So we need to understand exactly what’s causing the problems, and then we can figure out how to solve those problems.

Sam: One of the problems is that in the field of medical research, there are tremendous egos.

Annette: (laugh) yes. And it’s been very very difficult as a result. Sometimes the politics and the science…I think we talked about this before…can be extremely difficult. But in this case I really do believe, and I think the majority of people out there are very very sincere when they say that they’re concerned now about these patients. They’re concerned about getting these answers right, and we’re looking forward to working with them.

Sam: Alright, let’s take a break. With Annette WHittemore when we come back.

Sam: And back on Nevada Newsmakers we continue our conversation with Annette Whittemore. She is the founder and president of the Whittemore Peterson Institute. Your research director left who’d been on this program many times. What does this mean for WPI and who is the current research team?

Annette: Well right now we are moving forward with the same research team that we’ve had all along, but I think a lot of people didn’t realize the depth of that team, and the number of people that are working there. So we’re still doing the exact same thing that we have been doing, in a very organized and collaborative fashion. We’ll miss Dr. Mikovits but Dr. Lombardi is stepping in and taking control, organizing and reprioritizing our studies.

Sam: Now, you’ve been doing a lot of testing over the last couple of years for XMRV, so I mean, this is a real thing. It’s not that you’re testing for people and it’s not showing up.

Annette: Well this is, absolutely. And you know, Harvey and I were always very very interested in continuing to ask that question every other month pretty much…is it real, is it infectious, has anybody changed their mind at the NCI, for instance. And I recently was up in Ottawa in a conference and asked two researchers up there, not ones that work with us directly. And they both said it’s real and it’s infectious. The question is, where is it in this population. Is it in this population of individuals, and more importantly, how do we develop the most accurate test that we can, so we can look at this particular virus. But I think again that we don’t want to limit ourselves to one particular virus strain, or one particular virus. We want to continue to keep looking at the question..is there an active retroviral infection in the patients that is coming from outside, rather than is there an actual endogenous or internal retrovirus that is becoming active. And you know this is exciting, it’s very very very complicated, and I don’t want to pretend at all to be a scientist. I get the, I’m so fortunate to be able to listen to all of this and be able to talk to you about it, but you know I’m a wife.

Sam: You’ve become a sponge for this information. You’ve absorbed it and passed it on. But it’s interesting as time has developed now that you’re seeing that it may take more than one form.

Annette: Absolutely. You know we see that, I like to tell some of the patients this, that we see the head … my understanding is that we see the head, we see the tail basically, if we were to see an animal…as a virus…but we don’t see the entire body. We’re not sure what’s going on, so the next step really is to get this material and get it deep sequenced so that we can fully characterize what it is that we’re seeing.

Sam: One of the things, you know, in this economy obviously everybody’s taking a huge financial hit. But NV Energy, the power company in Nevada really stepped up to the plate with a huge donation.

Annette: They absolutely did. They were phenomenal. Recently they donated a hundred thousand dollars to the cause. We’ve had Vivint and Chase Community Giving which are online community voting grant programs. I think we’ve raised about a hundred eighty five thousand dollars through that. And then just recently we had our fundraiser at the Atlantis. The Farahis who hosted that event were just phenomenal and they even donated back the proceeds from the event.

Sam: That was here in Reno

Annette: That was here in Reno, in September. I’ve got to say it was one of the best events we’ve ever had. There was so much love in that room. And even all the way down to the individual who came out from Nashville, Suzi Oravec, and gave her time, donated her time to provide music for all of us. It was an outstanding evening.

Sam: Now, you started out as an ordinary mom. I shouldn’t say ordinary mom..a mom..
Annette:…Mom of 5 children

Sam:…you were a spectacular mom. But your daughter Andrea contracted this. And when you were last on the program, you were saying that the treatments that are coming from the clinic are, were helping her. Is she still progressing in a good direction?

Annette: She is. And you know we’re just really very very thankful that that’s occurred. And we’re trying very very hard to take a look at that, and Andrea thank goodness is willing to be a donor so that we can frequently check to see what are the differences between the times that she’s ill and the times that she’s well so that we can determine what is it exactly that’s going on, what are the treatments that are being most helpful, and why. We really don’t have all those answers yet. Those are things that we’re studying and I guess I’m just happy that she’s close by and she’s willing to donate her blood to that particular research.

Sam: How are you being helped at this point by the National Institute of Health? Are they being helpful at this point?

Annette: Well I think they are, because they’ve got a lot of researchers internally that are taking a look at this. And beneath all of the controversies that are going on in this particular virus, there’s some really good work. There’s some solid work that’s coming out. Not long ago there was a paper that said XMRV can infect neuronal cells for instance, or neurons, in the brain. And that was a key paper. I think there was a paper that also explained how easily it was transmitted, which would be, it’s very very unusual that a retrovirus could be transmitted potentially airborne. So there are some very interesting facts, and some good research is going on inside the NIH on this particular virus right now.

Sam: Alright, so I always like to ask you to tell the folks out there who are watching, literally all over the world, what your advice is to them about where everything sits at this point in time.

Annette: Well I think my best advice is to be able to remain calm, and to be reassured that the changes don’t mean that anyone’s going away, or that any way our commitment has been lessened. Or that the commitment of others has been lessened. In fact, it’s just the opposite. So there are more federal dollars today going into research in this particular disease. There are more individuals committed. An individual by the name of Glen Hutchins just committed ten million dollars to what he calls the Fatigue Initiative, and he’s brought new researchers into the field. Dr. Peterson has started a foundation and brought additional researchers into the field. So we’ve got some outstanding retrovirologists and virologists and immunologists that were never in this field before, that committed to helping us discover the answers. That is really the message…

Sam: What’s your level of optimism over the next couple of years?

Annette: Oh my goodness. I’ve got to say that we are making progress at a rate that is phenomenal. And ..on the one hand. On the other hand, we have to be patient. This is not an overnight process. I don’t expect it’ll take 20 years. I’m too impatient for that and I don’t think that’s appropriate. But it’s not going to happen tomorrow. So people need to sit back, take a deep breath, be reassured, and be hopeful. But, you know, let’s watch, let’s see what happens. Let’s be right about this. Let’s be good about this.

Sam: That’s the most important thing, to be right about it. Always a pleasure. Thank you so much for being here.

***
Reprinted with gratitude and permission from Khaly:
http://cfsuntied.com/blog2/2011/10/27/nevada-newsmakers-annette-whittemore-interviewtranscript/

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#119~ Urgent: November CFSAC concerns:

noreply@blogger.com (ME_CFS_unite) — Wed, 19 Oct 2011 06:02:00 +0000

Occupy the CFSAC via EMAILs ASAP ♥

Subject: Urgent November CFSAC concerns:

a) It has come to our attention and was confirmed that the CFSAC arrangements next month are concerning for a number of reasons, some of which seem to indicate that the government is once again marginalizing people with ME/CFS:

b) Thousands of us have UNITED over the past 2-3 years via watching the CFSAC meetings LIVE online and Sharing the info. Now they are Stating this
"LIVE-Streaming will NOT Occur at the November meeting"...

Please ASK as many of your friends as possible to Join Us and send an Email ASAP so that there will be
"NOT ONE WORD ABOUT US WITHOUT US" !!

This is violating their "accommodation for rehabilitation for people with Disabilities" and their past agreement to LIVE STREAM the Video AND the Audio. Many must listen, many can only watch IN SILENCE and read the text captions.
BOTH ARE VITAL !

This is an URGENT Vital Plea regarding Our knowing what OUR Federally Designated Committee and the attendees are saying about us LIVE !
Please Help PROTECT "OUR RIGHTS"~
"NOT ONE MORE WORD ABOUT US w/o US" !!

They ARE moving it to a Larger Room in another building so more than 50+ ppl can be accommodated, which IS a good thing.

If you have ME/CFS/FM/HGRV or any NID, Please share this info with EVERYONE YOU KNOW and ask them to Help by sending an email, with the link to this blog.
Here is the Official Notice for the Next CFSAC meeting and they are violating our 508 Rehabilitaion Act agreement to "stream it LIVE" so we can all SEE + Hear it LIVE !!

CFSAC Bylaws State:

"All materials posted on the CFSAC website shall be 508 Rehabilitation Act compliant to provide equal access to people with disabilities.

To the extent possible, meetings are broadcast over the Internet as real-time streaming video. Meetings "also" will be recorded and archived on the CFSAC website for viewers to watch at their convenience."

In MY book "also" means IN addition to....

The meeting will NOT be broadcasted live on-line like it has the last 2 years. Again, it is not clear why it will not be. Instead it sounds like audio will be available only with possibly video available later on. Certainly, this cannot be for lack of viewship -- Wanda Jones announced that several hundred people watched it live -- nearing 1000 at the May meeting. This is a huge increase as before the videocasts, had less than 100 people usually. CFSAC meetings are near impossible for the majority of ME/CFS patients to attend due to health or financial reasons. It should be noted that many, many NIH and DHHS meetings are videocasted live and probably with a lower number of people watching. The number of testimonies has also gone up over time and we believe this is partly due to patients better understanding what CFSAC is.

"NOT ONE MORE WORD ABOUT US w/o US" !!

c)
People who have not presented at the meeting before will be given priority to present. Although this is done prima facie for fairness, it might also mean that people who are knowledgeable/ experienced about ME/CFS and the gov't's history of dealing with it might be shut out from testifying. Does this apply to reps from groups also ?

d)
Please FLOOD her/their inbox with emails
immediately using the layout below to:
Dr. Nancy Lee is the new designated
federal official and her e-mail is:

In the "TO" section:
"Dr. Nancy Lee"
"Dr. Nancy Lee"
and copy that name/address EXACTLY, Promise ?

Then in the "BCC" section: add

Howard Koh ,
Howard Koh ,
Kathleen Sebelius ,
Fancis Collins ,
Dennis Mangan ,
Wanda Jones ,

The last one in the BCC: section~ the one to bodieangels, so we can tabulate how many were actually sent, OK ? ♥ If you want, send a "BCC" to yourself so you can see what it looked like.

Be SURE to use the "quotes" then a Space and the to make the address Correct ♥ with a comma in between each one, OK ?

"NOT ONE MORE WORD ABOUT US w/o US" !!

and for:
"President Obama"

http://www.whitehouse.gov/contact
(it's a form to prevent spamming)

I suggest you create your Letter in a plain text program FIRST ( NOT "Word" ) so you can simply Copy + Paste it into the email. It helps me when I do that.♥

--> Let's SEE if we can get 1,000 emails sent
                                BY the End of this week, OK ?

d)
Please click "attending" if you Promise to just even send one short email stating some of what we've written here requesting that they STAY Consistent and ask for "NOT ONE WORD ABOUT US WITHOUT US" and that they Accommodate the needs of the Disabled as in the past. Also, Please ASK as many friends as you can to just the same simple email. ♥

♥Hugs♥ and Thanks from Around the World !!
        ---->   WE CAN DO THIS !!! <-----

e)
PS: For those submitting written Public Comment or doing the same LIVE in Person~

Finally, in terms of preparation for CFSAC, the CDC website is currently under review. I suggest that we encourage people to mention what negative impact the CDC website has had on their lives (e.g. how their docs took the information, how it might have skewed media perception of CFS, etc.) and how the website could be modified to make the situation better and educate GPs/MDs "properly" by providing Quality videos for them to watch for their CEUs to maintain their licenses.

Until they get THAT in line with the
2011 CCCriteria for ME, we will NEVER make any progress..IMHO.

Let us "Occupy the CFSAC via Email" this week, OK ?
Luv ya all for helping OURselves and staying ProActive ♥

If you are having any problems creating a ltter there are a few samples in the comment section of the FB Event that you may use.
http://www.facebook.com/event.php?eid=233487310041319
PLEASE be sure to send one to Pres. Obama also.. SEE the notice BELOW !!

UPDATE:

Dr. Lee clearly received a lot of complaints. The email many of us received is now on the CFSAC website.

I say we need to continue to write letters and apply pressure to let her know this "accommodation" is not acceptable.

KEEP SENDING THOSE LETTERS AND REPLY TO THEIR CANNED REPLIES ALSO, OK?

http://www.hhs.gov/advcomcfs/notices/n101811.html
FYI> RE: Section 508 ~

Office on Disability

Section 508 Update

Acknowledgement: Office of Equal Employment and Diversity Management, FDA

The goal of the Section 508 law (part of the Rehabilitation Act of 1973, amended in 1998) is to reduce electronic and information technology barriers experienced by people with disabilities. Under this law, the Federal Government is required to purchase and deploy new IT and other electronic products that are accessible or compatible with assistive technology used by people with disabilities.

In a memo to all HHS employees dated August 30, 2001, Secretary Thompson called this law an exciting opportunity to help close the digital divide for individuals with disabilities in America.

"Section 508 affects every employee within the Department, not just those who work with technology or procurement. Every HHS employee has a collective responsibility for compliance with Section 508's mandate to make our information accessible to individuals with disabilities. This means that HHS employees must take proactive actions to ensure that all electronic and information technology developed, procured, maintained, or used, and all new or revised information made available on the Internet and Intranet meet the new accessibility standards."

The accessibility standards provide technology access to members of the public and Federal employees who have disabilities. Lawsuits may be filed in federal court or administrative complaints may be filed with Agencies or the Department of Justice for non-compliance with the law.

Successful implementation of Section 508 requires the support of every Federal employee who may be responsible for incorporating Section 508 into the design or development of IT systems requirements, or the development of web pages and their content. Any time there is a purchase request of any electronic or information technology, or at any stage in the procurement or IT development process, Section 508 accessibility requirements must be implemented.

For more information on Section 508, check out www.section508.gov, contact your agency Section 508 Official, or call the HHS Office on Disability.
******************************************************
THE WHITE HOUSE
Office of the Vice President
______________________
FOR IMMEDIATE RELEASE
February 12, 2009

VICE PRESIDENT JOE BIDEN ANNOUNCES KAREEM DALE AS SPECIAL ASSISTANT TO THE PRESIDENT FOR DISABILITY POLICY

First Time a President has had a Special Assistant Focused Exclusively on Disability Policy

BOISE, ID – Vice President Joe Biden today announced Kareem Dale as Special Assistant to the President for Disability Policy. The Vice President, who was leading a Presidential Delegation at the 2009 Special Olympics World Winter Games in Boise, Idaho, made the announcement during a stop at the Special Olympics’ Healthy Athletes Event, a worldwide program in which athletes receive a variety of health screenings and services.

"The commitment that the President and I have to Special Olympics and people with disabilities is deep and abiding. And we are backing up those words with real action at the White House," said Vice President Biden. "This is our first step to ensure that we have a strong advocate for people with disabilities at the highest levels of our Administration."

Dale, who is partially blind, will have direct access to the President in this role and he will coordinate the Administration’s efforts to see that people with disabilities are on a level playing field with all Americans.

>>>>Think DALE would want to HEAR the CFSAC meeting LIVE ?? <<<<

**************************

ORIGINAL NOTICE:

http://www.federalregister.gov/articles/2011/10/05/2011-25739/meeting-of-the-chronic-fatigue-syndrome-advisory-committee

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#118~ Why VIVINT "IS" Important NOW !

noreply@blogger.com (ME_CFS_unite) — Thu, 21 Jul 2011 12:21:00 +0000

Before I go into what needs to be done and how, I would like to give a little background to those that may have either forgotten OR are new to this Battle and history OR are stuck in one mindset and need a new perspective.

Dr. Jamie Deckoff-Jones is resuming her OWN Practice and has moved back to Hawaii and her opinions are ONLY that, and she even states that.. Many KEEP ignoring the rest of the patients all over the world that do not live in the USA ?

Please ask WHY many pretend like this is still ONLY about Incline Village and "the non-defining and everchanging naming" done the CDC ?

This is NOW a WORLD ISSUE .. Why would we still be only looking for "regular pneumonia" if many others had "pneumocystis pneumonia" and then they discovered that they also had a retrovirus ? Not everyone is still stuck in Incline Village and diseases/viruses of whatever kind mutate with time, esp. 30 yrs, and YES just like illegal immigrants can cross country borders and even hi-jack a ride on a plane or in a mosquito or tick. If a mosquito can tramit Malaria and West Nile Virus, why should it not be able to pass on a retrovirus after it bites someone that is XMRV+ ? Many methods are being tested and there is a lot more to learn about this very fruitful path that is ALEADY Helping Many.

There is also a thing called new tests and new research resulting in new results and findings.. It's like testing out a new dish to eat and then going home and 30 yrs later trying to re-create it w/o the recipe. IF Elaine DeFreitas had continued her work, whose to say where we would be now ?

Also, we now have this new Retrovirus in 9 countries, testing positive in different labs... with patients with many of these co-infections. IMHO, that is a "game-changer to anyone's immune system" AND how it will respond to any other incoming disease.

DESPITE ALL OF THE NEGATIVE BS RESEARCH PAPERS THAT EITHER ARE ALL NEGATIVE OR THE ONES THAT COME OUT 0/0......

Science and Research IS moving beyond CFS and working on The Bigger Inter-Connected Picture. That can also be called Progress and may be Finally getting closer to the REAL Truth~ No matter Where the origin of a particular version/branch of the disease came from.

Many ONLY want ME or Original description of CFS cured, BUT the Original description of CFS despite newer info and research joining many NIDs together showing a connection and now even MORE involvement to a retrovirus FAMILY ! But THAT is not the issue right now.. THAT's the part we have moved on from, because MORE Evidence is showing how much more this interconnected web of diseases is effecting our many organ sysyems and many of these illnesses are really triggered by a Master Puppet that then allows the Domino effect and we catch more other things like the things the CDC considers "experimental or not relevant for CFS testing"... BUT they ARE when you are looking at the Bigger PIcture with a Retrovirus in that picture..

Sometimes Research locates the tail of the elephant before it locates the trunk. What matters is that they finally locate the elephant in the room.

SOOOOOOOO, with THAT said.. it is of UTMOST Urgency that anyone that REALLY Cares fo Help us FIND Trreatment and Cures ASAP after the last 3 decades we have already waited...

Please keep voting. We are up against "Invisible children,"and the "It Gets Better Project", the "Trevor Project". These are all very large charities with huge fan bases. Invisible children won Chase Community Giving 2 years ago. We are in the pacific region with stellar competition. They haven't begun to get out the vote yet. OK ?

Help WPI by not ONLY VOTING Daily in the VIVINT FB Contest, but then ALSO Helping to donate up to $50/£30 per TOTAL during the Contest ...

"Matching Periods" and VIVINT will Match monies up to $2,500 total.
First period starts July 21st NOW !! = 5 hours ago !
thru tomorrow July 22nd at midhnight.

You Vote DAILY BY~
Going here Daily until thr END of August~ PROMISE Now.. OK ?
(1)http://www.facebook.com/VivintHome (click LIKE)

(3)http://www.vivint.com/givesbackproject/charity/769 (2) click "Login to Facebook", then click (VOTE)

Really~ Help NOW !! today and tomorrow !!

Please consider donating to the Whittemore Peterson Institute between midnight on July 21 ( 5 hours ago) and 11:59pm on July 22. If you do this, Vivint will match your donation up to $50/£30. You can donate here :http://www.vivint.com/givesbackproject/charity/769

Please Help advance Research into ALL of these NID illnesses and Help people from ALL over the world benefit from the New Research that is being done and the New Clinic that will be OPENING August First ♥

Remember that the WPI needs your daily vote! Please post your vote for family and your friends to see.
We NEED them and ALL of them to Vote also !
Please ask them, pretty please ♥

If they have co-workers that will also Help US because it's the PROPER THNG to do the Help ERADICATE THIS DISEASES, because ONLY this Private money right now has the ability because of the World's money Deficit issues to help with this MOST Important Research.

You KNOW the "Talking Points" and how to deliver them in a polite way that will make them realise that this is to also be Helping them so they con't get these diseases..

Remind them of the MANY Diseases that are being Linked and ALREADY Helped.
Thank you!!!!

*********************************************
Beyond that~ PLease "Mark Your Calendars" for Sept 15th for the 7th Annual
"I Hope You Dance" Gala FundRaiser Benefit for the WPI.

Now **GO TEAM GO**

Thank YOU ALL and Bless you ALL ♥

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#117~ "The FINAL Betrayal"

noreply@blogger.com (ME_CFS_unite) — Fri, 10 Jun 2011 22:18:00 +0000

Posted with the permission of the author Danny Ze-dog.

I'm too sick at the moment to start my own blog, and even if I had one I wouldn't be able to say what I'd really like to the way I'd like to. But in light of months of following the scientific (and anti-scientific) developments in the XMRV story, and given that it is XMRV Blog Week, I feel the need to say something. So here it is.

I don't know for certain whether XMRV and any related MRVs cause ME/CFS, or are co-causes or co-factors, but neither does any other scientist. I don't know what role it plays in ME/CFS, but neither does any other scientist.

I know this: I will not spend the rest of my life sick or die young because some researchers and research journals made a political decision to "close the door" on the MRV-CFS association before it was appropriately investigated.

I want a true replication study NOW.

I want 'science' journals to stop publishing negative studies by authors who haven't used clinically validated assays to detect XMRV. I want 'scientists' to stop claiming that non-replication studies ARE replication studies. I want any researcher, journal editor, or 'science blogger' who claims that true replication isn't necessary in science to be forced to seek alternative forms of employment. I want an investigation by the Department of Health and Human Services into why the NIH's tiny CFS grant review panel has turned down a series of grant applications by the WPI.

I want at least one sliver of justice for millions of sick people who have had none. If nothing else, we should have the benefit of supposedly dispassionate, objective science. We were raised to believe that science is the backbone of modern civilization, and the last pure thing left in a world rife with politics. If we cannot even get THAT without political interference, then even the highest court of appeal is corrupt.

For well over two decades we have trusted that, at some point, the system that was ostensibly built for us will finally work in our favor. At what point do we decide as a community that it clearly will not? And at what point will we protest en masse that our rights as citizens and as human beings are being denied by medical, "healthcare", political, and scientific establishments?

The most blatant recent example, and the most immediately crucial issue, is the organized attempt to bury XMRV-CFS research. With whatever energy we have, we need to fight to stop that from happening. NOW. We need to let those who would bury it, or let it be buried, know that we will not tolerate this. We need to let 'advocacy' organizations know that they should either support us in this endeavor or stop posing as advocates and get the hell out of the way. We need to strategize ways that we as patients and their carers can have a real impact on the scientific institutions and policy-makers that are normally walled off from us, and on the media that increasingly serves only as a mouthpiece for the 'official sources' with the best media connections. If the high-profile discovery of a potentially pathogenic gammaretrovirus that may infect at least 4% of the population can be whitewashed from the memory of science and history, so can - and will - that of any other pathogen, be it HHV-6, Lyme, or anything else.

This isn't just an issue for people who support the XMRV hypothesis - it is an issue for everyone who wants good science to be done on this disease, now or ever.
*************************************

"Well said" Danny, and Thank YOU for letting me post your statement here.. There is MUCH Truth IN it ♥

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#116~ URGENT- Get Out The Vote for WPI NOW !!

noreply@blogger.com (ME_CFS_unite) — Sun, 22 May 2011 06:01:00 +0000

CRUNCH TIME IS HERE !!!

We NEED at Least 4,000 MORE Votes, folks !!

We are in 7th place ~ that will NOT do.........

In case you haven't yet looked under the rugs and rocks and begged every friend and friends of friends and every orgnization ou have ever belong to ~ to Help us and if they Belong to Facebook to Vote for WPI for the Chase community Giving to Help us win the $500,000.00 that will be put towards research and develpoping treatments for millions of patients with the many neuro immune diseases.....

NOW is the time to do it, NOT Tomorrow...

The illnesses that all seem to be linked together under this umbrella include many things with ME/CFS being only ONE of them... and there are 17 million of them. Also included are those with Autism and Chronic Lyme Disease and Asperger's, Atypical MS, Fibromyalgia, and they have also been linked with many cancers including lymphoma and some cases of prostate cancer and breast cancer...

Anyone that CARES about Human Life should be VOTING "Right NOW" on Facebook for the Whittemore Peterson Insititute as they are the ONLY one in the Top 7 that has anything to do with Saving and healing Human LIVES that are in danger and people have been suffering for decades... and now a Generation !

While we are doing this, the President and Founder of the WPI, Annette Whittemore, and the Head Translational Medicine Researcher, Dr Judy Mikovits, have both been in the U.K. in London attending the 6th "Invest in ME" Conference whose sub theme this year is

International ME/CFS Conference 2011

The Way Forward for ME - A Case for Clinical Trials

but before there can be clinical trials there must be MORE Research $$$ and as we all know thegovernments and states and contries are broke, so this Wonderful Opportunity to WIN this $500,000.00 must NOT be taken Lightly~ Please..

THIS IS HUGE

Today the team went to Belfast for a Conference on Sunday and then they will be returning home on Monday... Please while they are away make them PROUD of us and what we did while they were away... There going around the world Literally to Help us..
Can we do Less to help them Help US ?

They have dedicated the LIVES to Helping us....

Can we not find ways to be EXTRA Creative these next few days to help get another 4,000 Votes ~ Please.. ?

The directions to help are Easy..
Here is a little paragraph that explains how and when you ask your friends and families to even ask their exteneded families and friends please ask them to watch this video that you can include. Here are the directions and the video link ...

Please Help MILLIONS with Neuro Immune Diseases "with 2 clicks."

Voting is open to anyone on Facebook.

You can vote by going to http://apps.facebook.com/chasecommunitygiving
Click "like" then locate the Whittemore Peterson Institute by clicking on this link http://bit.ly/mrWckA and Simply VOTE.
Your vote will help them possibly WIN $500.000.00 for Research.

"Please share this" with others and Thx♥
http://www.youtube.com/watch?v=uM8Hs1nuk5I

The government is spending $3.64 a year on just one of these co-infections called ME/CFS... is That what your life is worth ?

Ask Rober Miller, this was his testimony last week at the Federal CFSAC meeting:

Maybe you need to hear a few more testimonies about just this ONE co-infection and WHY we NEED this Research $$$ SO Desperately ~~~

In closing I will wrap up with one more video to show you that people HAVE DIED FROM THIS Illness that is NOT all in their heads.. Please Help us by getting every teenager you know that is on Facebook to VOTE for WPI because children are getting these illnesses also... I know we can DO THIS but we must REALLY work HARD these next few days... PLEASE....

Remember although thesae videos might only be speaking about ME/CFS and XMRV, that the WPI is also helping Autism, Gulf War Illness ( get every Vet you know to VOTE ALSO) and chronic Lyme of which there are also Millions...

Lest we forget all of the lymphoma cancer patients and all of the families and lives effected by these illnesses which is a LOT MORE than Just the Patients...

PLEASE Remember we need a MINIMUM of another 4,000 Votes to WIN this...

If there are Millions of us sick, WHERE are these votes ?? Find Them Please ~

We BEG you..

More Research can NOT Proceed if we do NOT get this funding...

We must NOT let this Opportunity to Win this Grant slip right through our hands because we did not
"Get OUT The VOTE."
This is a Vote for our Very Lives..

Please everyone from Around the World...
Help us and Vote NOW on Facebook for the Whittemore Peterson Insititute for Neuro Immune Disease on the Chase Community Giving Contest...

Human LIVES are at Stake here...

Please do NOT Let a floral society beat us !!

I love flowers but we must be alive to enjoy them also....

Thank YOU ♥

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#115~ VOTE: Help WPI + us at Chase Giving

noreply@blogger.com (ME_CFS_unite) — Tue, 17 May 2011 23:24:00 +0000

PROJECT: GET OUT THE VOTE FOR WPI
May 18th 9pm (PST) thru May 26th 9pm (PST) USA

Dear Family and Friends and Yet-to-Be friends~

I have a Huge Favor to ask of all of the readers of this blog. Please know that this next week is very important to millions of people that need WPI to be able to continue helping us and doing their research.

I sincerely beg each and every one of you to participate and "call in" any favor you can from all friends and family and ask them to ask their friends and family so we can get as many votes as possible to help the research continue.

These are indeed dire times and the opportunity of this Grant has been placed before us, which ONLY takes a FREE VOTE aka ONE CLICK is Incredible and it is now our turn to step up to the plate and just do this one this one thing from around the world to help WPI and all of us with any Neuro Immune Disease.

I personally will be sending out this blog, emails, tweets and phone calls to my friends "that I Know Care" and even those I don't and ask them to participate and send out emails and post on their FB page about Voting for WPI and the directions in a brief paragraph, after we have created it once the contest officially opens.. Ask them to look for it and please help.

If you belong to a church ask your friends to help, make an announcement, talk to your minister/priest or any clubs you might belong to, and even all of your local support groups.

Get Creative and ideas WILL come to you of people and places to enlist for this one little thing we can do from around the world to help WPI the Facebook.

Thanks and bless every one of you that decides to help and participate. ♥

The Whittemore Peterson Institute (WPI) is 1 out of 100 charities that won a $25,000.00 grant during the first round of Chase Community Giving. Now, WPI is competing for a $500,000.00 grant, and you can help! Please cast your vote, ask your Facebook friends to vote, and spread the word about the important work of WPI. If you have a Facebook account, please cast your vote for WPI by following the instructions below beginning May 18th at 9 pm PST through May 26th at 9 pm PST.

STEP-BY-STEP Instructions:

1. From your Facebook page, go to Chase Community Giving:
http://www.facebook.com/ChaseCommunityGiving.

2. Join Chase Community Giving by clicking on the "Like" button.

3. Do a Chase Giving "search" for Whittemore Peterson Institute for Neuro-Immune Disease. (only including this in case Chase chages the link for the 2nd Round..
I know how to spell "assume" and always like to Have a Plan B in case the link below doesn't work for some reason, OK ? )

4. Cast your vote for WPI by clicking the "Vote Now!" button.

5. Please remember our neuro-immune disease community and share in the Love and Giving by voting for other organizations who speak to your heart -- you can vote for up to 5 organizations per Facebook account.

CHASE COMMUNITY GIVING: BIG IDEA

The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain. These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and Autism, have too few medical solutions. WPI continues to make significant strides through the work of our innovative research program. Translating novel research into effective patient treatments for millions around the world will begin with the opening of our 10,000 sq. ft. medical facility. Here we can engage in revealing clinical trials and provide onsite care to those who are unable to afford care. We require funding for initial expenses and to establish a patient fund.

WPI’s commitment to discovery has already inspired much hope worldwide.

*** Now it is time to put hope into action by offering meaningful patient care to these under-served populations.***

Please place this message at then end of each email for the whole next week:

Please take a moment to vote and ask your friends and family to vote too!!! Chase Community Giving is giving us a chance to win a $500,000.00 grant for the Whittemore Peterson Institute.

Here are two links.
Voting begins May 18th at 9 pm PST and ends May 25th at 9 pm PST, so mark your calendars.

Current FB- WPI - Chase Giving page
http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-fo?m=410af99a

A shortened link to use for Tweeting that will also take you to the same WPI @ChaseGiving FB site as above, so Use this for Tweeting, OK

http://bit.ly/mrWckA

Please share this video with your friends that don't know anything about ANY Neuro Immune Diseases and Help them understand it's about MANY diseases and maybe this will help them Understand the URGENCY of this Chase Giving opportunity we have been given This WEEK.

Bless you ALL and Thanks for anything you can do to Help...

TOGETHER, we can Help WPI and WIN this one, I just feel it...

So **GO Team GO** and ♥Hugs♥ to all.....

We have this ONE Week to Help Create this Miracle of Funding that will mean SO Much.... Let's DO it ♥

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#114~ CFSAC Testimony- Mary M. Schweitzer, Ph.D.

noreply@blogger.com (ME_CFS_unite) — Sun, 08 May 2011 20:47:00 +0000

This will be the first of a few "Special Guest posts" I will make, with the permission of the authors, of their CFSAC Testimony for this May 2011 meeting. I am doing this in the hopes that many of you that are not even able to view the meeting on the web and don't belong to Facebook or a forum will be able to read these and know what we are telling the CFSAC. I am attempting to include a cross-section of the different testimonies so you will get to see the big picture of this illness and the dialogue that will be taking place May 10+11th, 2011, in Bethesda, Maryland, USA.

Testimony
Mary M. Schweitzer, Ph.D.

First, I want to thank Wanda Jones and this committee for giving us a chance to speak, and in particular, for livestreaming this meeting so that patients who cannot travel (which would be most of the ones I know) and patients who are housebound (which would encompass too many of those I know) can view the meeting from their homes, both in the United States and abroad.

I also want to thank Dennis Mangan, the NIH committee that I was privileged to be a part of, and all the participants, for the outstanding State of the Knowledge workshop on such short notice.

I want to focus on the Centers for Disease Control and Prevention (CDC) today. CDC has been studying this disease for over a quarter of a century, and haven’t gotten very far. It is time that they caught up with 2011.
First I want to make clear that when I refer to CFS, I mean the Fukuda definition (1994), and when I refer to ME/CFS, I mean the Canadian definition (2003). When I refer to M.E., I use the Ramsay and World Health Organization definitions.

1. CDC’s Portrayal of the Disease
Suppose you broke your leg really badly. You knew it, your family knew it, your friends who were with you knew it. Somebody called emergency, and the ER techs came out. They had already been told by your family that you had a broken leg, but they said they had to find out for themselves. They came up to you and said, “Why do you think you have a broken leg?” Startled by the question, you said, “because it is obviously broken!” (Selfreported, one says to the other.) How about you stand up and we can see what’s going on with that leg. “NO!” you responded! “That’s going to hurt!” (Catastrophizer, they murmur among themselves. People who catastrophize about pain are more likely to feel pain.) Then they write a prescription for Prozac, say “Take this until you feel more comfortable about the prospect of standing up,” and they leave.

Now, of course that was a silly story. But it is exactly how I was treated by the first specialist I saw for this disease. “Self-reported” is an insurance term that is used by British psychiatric “experts” on CFS; and there is a published paper out there about CFS and fibromyalgia that uses the correlation between these diseases and fear of pain to conclude that people who fear pain are “catastrophizers,” and “catastrophizing” causes pain. There is a large body of psychiatric research on this disease that is just plain silly.

So don’t be surprised if patients are a bit worried about what researchers say about them, or what the government does about them. If you had a badly broken leg and nobody in the medical profession would believe you, you’d be a little cranky too. Indeed, when scientists injected lab monkeys with HHV-6, Variant A, the poor things hid in the corners of their cages looking supremely miserable, and one would drag his left arm and leg when they made him walk. Poor baby. Been there. At any rate, the scientists working with the monkeys said that they got a little cranky toward the end. No kidding.

Ever since CFS was abandoned by NIH, CDC has been the central agent of promoting views that are diametrically opposed to our experiences. For 25 years they have insisted this disease as caused by some sort of “stress,” – at first the stress of yuppie women “trying to have it all.” Today they claim the stress is caused by having been abused as children – but they’re still saying the same story. It’s just caused by an inability to handle stress.

Something else I have faced when coming here or when at a conference on my disease, is the phrase “Oh, I don’t believe that.” I recently wanted to talk with a well-respected virologist about HHV-6, Variant A, which I is a vicious disease, and which I have in both my blood serum and spinal fluid unless I am on Ampligen. The researcher stopped me as soon as the words came out of my mouth, “I have HHV-6, Variant A.” “Oh, no you don’t,” he said, cheerfully. “There’s probably just some artifact in your blood that makes it look as if you have HHV-6, Variant A.” That’s pretty much the same thing Stephen Straus said to me when I testified here twelve years ago about HHV-6, Variant A. And my response is the same now as it was then: I was part of a study of a handful of CFS patients conducted by Dharam Ablashi, the co-discoverer of HHV-6 and its two variants, while looking at samples from AIDS patients at NCI. Ablashi saw the virus in my lymphocytes. It was no artifact. But …”Oh, I just don’t believe that” is something I often hear. Hardly a scientific response, don’t you think?

In the meantime, we remain sick. So let me offer my first suggestion: if the approach hasn’t helped anybody with the disease in a quarter of a century, time to change the approach.

2. When is CDC going to begin to identify subgroups using biomarkers?
The Fukuda article from 1994 that gave us the most commonly used research definition also strongly urged CDC to begin identifying subgroups using objective biomarkers. That was 17 years ago. But if you look on CDC’s website, when they discuss biomarkers or microbes associated with The Disease, they always put them in the context of “The Cause” of CFS. No, that’s not the point, guys. A biomarker does not have to be “The Cause” to be useful. It just has to correlate. And when we are trying to identify subgroups, it doesn’t have to correlate with everybody who has ever had a diagnosis of CFS.

I belong to an identifiable subgroup. When in relapse off Ampligen, I have, among other things, immune biomarkers and activated opportunistic viruses. There is a
subgroup of patients who have precisely what I have, though I have more viruses than many, and some have viruses I don’t.

My immune biomarkers would be the 37kDA Rnase-L defect, which always shows up when I am off Ampligen and disappears when I go back on it, and natural killer cell dysfunction. During my most recent relapse, from September 2008 to the summer of 2010 (after having been on Ampligen for several months), I had a natural killer cell function of 2%. I also have an abnormal cytokine profile.
During relapse, I had active viruses in both my blood serum and my spinal fluid. I hold a flush in herpes viruses – Human herpesviruses 4-7. My relapses usually start with Epstein-Barr, which comes and goes while I am really sick. I test positive for active HHV6, Variant A, cytomegalovirus, and HHV-7. I also have Coxsackie B. I have friends who have parvo or an adenovirus, and I have friends who do not have HHV-6 or cytomegalovirus. As for the immune biomarkers, there’s a pretty strong correlation between those who were in cluster outbreaks and natural killer cell dysfunction.

I think we’re a subgroup, and I’d be very grateful if that could be recognized. The researchers who work with HHV-6 have been asking for years that Variant A and Variant B be recognized as different viruses, with one renamed HHV-9. CDC has turned a deaf ear to their research and requests. Intriguingly, Variant A is found in AIDS, CFS, and in the lesions of MS patients. Variant B, which causes roseola in children, is the virus that reactivates when patients are put on immunosuppressant drugs. While Variant B is endemic (it is the childhood disease roseola), in 90 percent of the adult population, Variant A is found in only 7 percent of the population. These are different diseases, but we need CDC to recognize that.
Finally, outside scientists at the NIH State of the Knowledge workshop strongly urged researchers to adopt the VO2 MAX score as an objective marker of the disease. Mine were significantly abnormal during the relapse – 14.5 – and even now, at 16, not a whole lot better. I have a lot of recuperating to do.

3. NCHS, within CDC, is overseeing the development of ICD-10-CM. We need to keep CFS in the same code as in ICD-10 – under neurology, at G93.3. That’s where it is in WHO’s index to ICD-10 – adopted by over one hundred nations. It’s also under G93.3 in the tabular versions of the clinical modifications produced by Canada, Germany, and Australia. It should not be placed in R53.82, under “vague signs and symptoms.” We would be the only nation to have CFS in R53.82. Why?

4. CDC needs to stop using British psychiatrists as consultants and guides to the definition and treatment of CFS. I am speaking specifically of Simon Wessely, Michael Sharpe, Peter White, and nurse Trudie Chalder. The latter is a specialist in “factitious illness” and “factitious illness by proxy.” Is THAT what CDC thinks of us and our disease?

It should be noted from the outset that the British psychiatrists do not use the Fukuda (1994) definition. They use the Oxford definition to diagnose CFS. The Oxford definition requires six months of debilitating fatigue and NO physical conditions that could explain that fatigue. Conversely, psychiatric conditions are NOT excluded from Oxford. I had an email exchange with Simon Wessely in 1996 when he told me that I did not have CFS because I have NMH and Hashimoto’s thyroiditis. They also consider a failed Romberg test as exclusionary because it is a sign of neurologic abnormalities – in contrast to my original specialist, Dr. Marsha Wallace, who used my inability to pass a Romberg test as diagnostic for The Disease (as is also true for the Canadian Consensus Definition of ME/CFS.)
The British psychiatric view of CFS is that it is an “inappropriate illness belief.” That is why they prescribe Cognitive Behavior Therapy – not to help patients adjust to the disease, but – in their own words – to “reverse” the disease, to cure the disease. Graded exercise is recommended to get these poor women who have been deconditioned by their inappropriate illness beliefs back into shape and able to return to work and household.

Is THIS what CDC thinks of our disease? If not, why does CDC’s website suggest cognitive behavior therapy and graded exercise, perhaps with an SSRI added and something to help patients sleep, as the appropriate treatments for this disease? Why is there a direct link to the website for Peter White’s psychiatric practice at St. Bart’s hospital in England?

#113~ 2nd Chance: Pres. Obama Can you Hear Us ?

noreply@blogger.com (ME_CFS_unite) — Sun, 24 Apr 2011 13:43:00 +0000

Pres. Obama, We want you on "Our Dream Team"
Please Help make Our Dream a Reality ♥

Hello everyone~

We NEED to Build Our PR "Dream Team"~ Let's start at the Top with this campaign, OK ?

The other day we the ME/CFS, Neuro-Immune Community of patients, family and care-givers have been given a "rare opportunity".. The wife of a ME/CFS patient actually "got the ear" of the President and a Promise from him that he would contact the NIH about ME/CFS when he got back to Wash. D.C.

So this request is for "ALL of you Everywhere" on ALL Continents, OK ?

OK, "NOW is our Perfect Time" for us to FLOOD President's "inbox" at The White House and make SURE that he either ACTUALLY gets to read one of our written letters, emails, faxes or phone calls, OR if Not then at least his STAFF WILL Definitely KNOW that We ARE out here.. and when he asks them to call the NIH, they will also tell him that he has been receiving TONS of correspondence from ALL of the Neuro-Immune Community regarding ME/CFS.

We have been give this chance and we must NOT waste it.. Especially when if we get our letters to him this next week, Send them ON April 29th, OK ?

That should give his Staff time to read all of them and get him something just in time before the 2 days of the CFSAC start on May 10+11th, and there will be a delegation of people (from the "early onset" ~ "Stand UP for ME" group with children meeting with Congressional members to "put some faces on this" on May 11th and Our International Awareness Day is May 12th.

Recent News and background~

Courtney Miller asked President Obama
"Q Mr. President, my name is Courtney Miller . And I want to thank you for returning science to the national priority. And I need to ask for some help for my family. My husband has chronic fatigue syndrome, which is an illness very much like multiple sclerosis. And we spend billions of dollars in this country on roughly a million patients for disability and Medicare and lost tax revenue and lost productivity, and we spend less than $6 million for NIH research on this illness. And I’m asking you for my husband and my kids, who want their father to be able to go to their baseball games, if there’s a way to make improvements on that."
......
Answer snippets:
“I am a Christian and a person of faith and I believe that God gave us brains to figure things out,” Obama said when asked by a woman in the audience what his health policies could do to assist her husband who is suffering from Chronic Fatigue Syndrome. (1)

"Now, I will confess to you that, although I’ve heard of chronic fatigue syndrome, I don’t have expertise in it. But based on the story that you told me, what I promise I will do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and start seeing if they can do more on this particular ailment. Okay? " (Applause.) (2)

Here is the video of that event:

Listen for his comment at about 11:45min. about medical research.
Courtney Miller is at around 47 minutes time,
asking Pres. Obama for funding for Chronic Fatigue Syndrome...

Why we are asking YOU ALL Now from ALL around the WORLD to Help us let him KNOW that this indeed IS a Worldwide PANDEMIC.. He needs to receive letters from all over the world, OK ? So USA, UK, Iceland, Belgium, Norway, Sweden, Canada, Australia, New Zeland, Spain, everywhere you know there is ME/CFS please watch and understand WHY we want to FLOOD the White House with Mail so we can STAY "ON his Radar" and maybe we can Help him Understand that BY Helping US, it will SAVE the country and world's economies money because once well again and on meds like Magic Johnson, a basketball player he will know of , we can then get some jobs back, get our lives back, and will be HONESTLY "Happy to Pay Taxes" and not be broke or on disability any more...

This is also WHY we want to DO this~

How Mail is Handled at the White House.

***********************************************

Talking Points for your Letters:

*** This Category of Neuro-Immune disease includes ME/CFS, Autism, Chronic Lyme Disease, Gulf War Illness, mitochondrial disease, and has also been linked to Atypical MS, and numerous cancers including an Aggressive Prostate Cancer, Lymphoma, 25% of Breast Cancer and can include many serious conditions such as MCS Multiple Chemical Sensitivity, OI/POTS Orthostatic Intolerance/ Postural Orthostatic Tachycardic Syndrome, which drops your Blood Pressure in half when you stand up and makes your heart work 4 times harder to help circulation so it can pump nutrients and oxygen to your body and BRAIN, otherwise you will pass out in 5 min if standing STILL . They also usually become VERY sensitive to many meds which makes even treatments harder. It's a complete long term progressive disease that devastates families, while it bankrupts them and the insurance companies DO NOT pay for any tests that are required and thus they pay for NO Treatments... What's wrong with THIS picture ?

*** The CDC must be made to IMMEDIATELY change their website so that will include testing for the co-factor infections many of us have, like EBV, HHV6, etc. Eliminate the Treatments of GET + CBT, because it has been PROVEN that for many of us with OI/POTS "any GET" is yes Literally Harmful to us..and the ONLY CBT that we need is what Dr Lucinda Bateman of Utah uses which is to "teach us the limitations of what we can and should NOT do living within the confines of our illness so we do NOT do anything to cause us to be worse or cause will cause us to Flare or Crash."

Please check with Dr Chris Snell, Current Chair of the CFSAC with regards to the P.E.M. (Post Exertion Malaise) and his Stacey Protocol for testing us for this that has been legally accepted in courts to PROVE that this exercise hurts us and causes us cardiac harm, and also check with Dr. Leonard Jason, CFSAC member who along with Snell testified at the NIH State of Knowledge ME/CFS Workshop April 2011 and also validated that we do NOT have ME/CFS because we are Depressed. Quite the Opposite actually. Thus the CDC MUST be made to Change their TOO Inclusive numerous changes made to the Original Definition to what CFS meant when First "coined" when the symptoms listed matched MUCH MORE the Canadian Case Criteria Definition which if you check with the Dr's that have been treating the serious patients for 20+ YEARS.. THAT is what we Truly HAVE... is ME.

And Yes, Dr Cheney found spots on the brain scans he did on his patients in the 1980s that matched the spots on the brains of HIV patients.. which again tends to lean towards evidence of a retroviral connection.. The CDC's insistence that a disease will recognize a countries boarders is about as 18th Century medicine as I have seen ~ WAKE THEM UP ~ Please... They are currently an insult to this Country.
They are sent Positive samples of Positive Viruses and "Can't Detect CR*^", as far as we feel. It's Truly embarrassing...

*** Please let him know that there are also 7 cohorts in 7 countries, tested by different labs, that have also tested Positive for the 3rd Human Retrovirus, and there has been NO definite other reliable research done to PROVE that this is NOT an actual human pathogen or why thousands of people ARE sick with this retrovirus and other co-infections of which ME/CFS is one, and that these people "NEED Clinical Trials NOW," NOT in 3 yrs or when ever the Lipkin & other studies are done... These people Testing XMRV+ "HAVE are retrovirus AND co-infections" and that alone SHOULD automatically make them eligible for Some sort of Help~ immediately !!

***One year has already passed since even the Emory University published a paper that listed numerous ARVs that could be already considered for usage for those with XMRV/HGRV. That was a YEAR ago ~ Where's the Clinical Trial... We have been sick FAR too long already with NO medicine from anyone!!

*** "Anyone Positive for XMRV and just one co-infection" should be immediately eligible for 'Care and 'Caid/'Cal and compassionate care should be granted to them IMMEDIATELY !!. TOO many of them have been sick and denied any medical care or coverage for 20+ years due to lack of research, postponement of research, diverted research funding, esp. since a retrovirus had been linked back in 1990 and because the CDC chose to not pay for 2 plane tickets they shot down the research and let it die.. NOT Again. !! All care, all meds, all long term care and hospice, the same as the HIV/AIDS patients get. Deja VU all over again 20 years later ~ NOW on the 3rd Generation.. Shameful and WorldWIDE.

***$150 Million NOW, for research that includes the Whittemore Peterson Institute, of course, with "non-blinded" clinical trials of any patients that "test positive for XMRV and one-co-infection" ...paid for the same way HIV patients get their meds (whatever that is)...'Caid? 'Care?

**** "A Separate NIH SEP for XMRV and all it's

co-infections" is a necessity given the 30 year neglect that the CDC has given these millions of Americans, the fact that there are estimated to be 10 million asymptomatic XMRV carriers in the USA alone either donating it into the Public Blood Supply or passing it on via bodily fluids, that is IF it is ONLY Infectious and not Contagious which has NOT been confirmed YET. Get ME/CFS and XMRV "OUT" of the CDC... they can't detect anything.

*** For goodness sake's Educate the Doctor's that are ON the Front Lines as right now they KNOW NOTHING and all they do is want to give us anti-depressants when we are NOT Depressed, except for the ACT that they do NOT Believe us cuz NO ONE has Educated them... This was a HUGE Point made at the NIH State of Knowledge Workshop April 7+8th.

***Educate the Dr's that XMRV/HGRV's ARE indeed Retroviruses and they should have continuing CME Units Immediately REQUIRED so that they "do NOT tell" their patients that a "Positive XMRV Serology" means they do NOT have this retrovirus IN the DNA "For LIFE". Dr's should NOT give test reports unless they KNOW the Seriousness of what the heck they are telling their patients.. The peer-reviewed "Science" published paper that announced the CFS link with XMRV was in Oct. 2009, yet in Dec. 2010 my Dr STILL did NOT know ? Must they wait for a Personal Telegram ? In the USA I finds this appalling. Do they not have required Yearly CME's that required ?

*** This also is Important as it effects not only the adults but "the SICK CHILDREN effected" and being taken awake from their parents (which is SINFUL) but the (DSS) (at the age of almost 17 years old ) and placed in their custody in January of 2009.... because they they then blame the parents for Munchausen By Proxy when they have NOTHING Else to resort to and THIS is but ONE recent example even those they have even had Help from Dr. David Bell, Dr. Paul Cheney (25+yr EXPERTS in this disease) and after 25 years THIS OF> Proof that This is STILL going on and it MUST STOP !! My goodness, Dr. Bell went thru this back in the late 1980's and it took him 10 years of legal court battles to get back one child home to their parents and the money wasted was not spent to help the child's health in the meantime. Sinful. Because of Lack of Knowledge and education about this illness.
http://www.bringingryanhome.com/

Pres. Obama would YOU want Shasha and Malia taken away from YOU if they were sick just because the Dr's could not help them YET or had not been educated YET ? This IS INSANITY !!

***Given the Family Trees that are showing up now cuz we Literally ARE on our 3rd Generation of this set of neglected illness by the CDC that continues to tell us "It's ALL in our Head"~ Please have a look at what the first evidence of Family Tree medical history is showing re: descendant generations......

In each of the 6 clusters, the top 2 are the parents with the children underneath them. LIGHT BLUE = FIBROMYALGIA, DARK BLUE = CFS, GREEN = AUTISM. Under each shape is their XMRV result. V= virus found in culture,
Av = antibody test, NT=not tested

Family 1, upper left corner – One parent XMRV + for virus by culture and XMRV + for antibody, one parent XMRV + for the antibody. Neither parent symptomatic. Child with Autism, XMRV + for the virus.

Family 2, top row, middle – One parent with CFS and XMRV+ for antibody. Two children with Autism; one XMRV+ for virus by culture, one XMRV+ by antibody.

Family 3, upper right corner – One parent with CFS and XMRV+ for virus by culture. Child with Autism, XMRV+ for virus by culture.

Family 4, bottom left corner – One parent with CFS and XMRV + for virus by culture. Two children with Autism, both XMRV+ for virus by culture.

Family 5, bottom row, middle – One parent with CFS, Fibromyalgia and XMRV+ by antivody. Child with Autism, XMRV+ for virus by culture and by antibody.

Family 6, bottom right corner – One parent with CFS and XMRV+ by antibody. Child with Autism, not tested for XMRV.

A quick summary regarding families. Confirmed here, there is XMRV in children under the age of 5. To date they have confirmed XMRV in 16 of 17 families with Neuro-Immune disease amongst multiple members. Finally, that more work needs to be done to confirm pathogenesis and transmission.

*** "I'm worth more than $3.64 a year"

That was the TOTAL that has been spent on Research for the patients with ME/CFS over the past decade and until the patients got Vocal enough because it was costing our lives and families and countries TOO MUCH, we just FINALLY had the First Ever NIH State of ME/CFS Knowledge Workshop that show many of the FLAWS and Gaps and blind spots and ways that time and money has been wasted. It's TIME
to Get Serious President Obama.

STOP the Generations of Ignorance, Lack of Serious research, and to Help ALL of these people, Help get treatment for those with the retrovirus and Get the FDA to Pass Ampligen as it is our ONLY thing that has helped so far.. until someone does further Quality Research..
TOO Much time has passed..

This IS effecting the children...

What would The First Lady suggest be done I wonder ?

CFS History~
How an old disease got a New Name

Presidential Contact Info:
Please use as many as you Can, OK?
Put them IN the mail NO matter where you ARE
on either April 29th or May 1st, OK?

Mailing address:
President Barack Obama
c/o The White House
1600 Pennsylvania Avenue, NW
Washington, DC 20500

President's email:
"Pres. Barack Obama" president@whitehouse.gov

White House Phone Number:
202-456-1111 (EDT)

FAX: 202-456-2461 (24hours)

************************************************
reference articles:
(1) http://whitehouse.blogs.cnn.com/2011/04/21/obama-invokes-his-faith-and-a-g-in-nevada-town-hall/

(2) http://www.rgj.com/article/20110421/NEWS/110421028/Update-Obama-ends-talk-Reno?odyssey=nav%7Chead

http://www.enewspf.com/latest-news/latest-national/23735-remarks-by-president-obama-in-a-town-hall-in-reno-nevada.html

http://content.usatoday.com/communities/theoval/post/2011/04/obama-will-root-out-manipulation-of-gas-prices/1

http://blogs.suntimes.com/sweet/2011/04/_washington--i_drove_by_a.html

#112~ "If this was HIV, it would be 1983"

noreply@blogger.com (ME_CFS_unite) — Thu, 21 Apr 2011 07:21:00 +0000

For those that do only have dial-up and can not watch videos I wanted to post the text of one statement that needs to be heard Around the World. I would like to also thank the person that did this transcribing and gave me permission to repost it for everyone to read.. cuz this needs to be known..

I am one of the SeroPositive XMRV plus co-infection people that has been sick since 1987 and maybe before because I have NOT had any vaccinations since the 1970s and you can't grow antibodies to something you have never been exposed to.. so any lab contaminations that may have taken place after 1992 had nothing to do with my blood or what antibodies I have created.

The fact that there are also now literally 3 generations of sick people and some have them within one family, and some even have adoptions so that would rule out bodily fluids.. so the Real Question here also is.. is this merely Infectious or also Contagious ???

And Now~ Here's Judy ♥
from the NIH State of Knowledge April 8th, 2011
*************

Mikovits: I would like to say that what I've seen here this week says that, clearly, XMRV at best, what we originally set out to do 5 years ago was a systems biology approach. We used those genomic technologies by Gene and Mary Carrington. We used a microarray from the NCI to screen all the pathogens. And what we saw was what we heard from Mary Schweitzer, that a lot of active pathogens and things like shingles, things like enteroviruses, things like EBV, CMV, HHV6--they're all totally on in that microarray. In NCI's infinite wisdom, it didn't put XMRV on it, so that's how we ended up going back. But we didn't look with a hypothesis for retroviruses.

We took the systems biology approach, collected samples from patients who had the well-defined characteristics that Tony Komaroff talked about and that were in the Lo Study and Dan Peterson had done--these patients--had data on them for decades. We took samples over three years. So it wasn't that we found the virus in every sample. It was like the macaque study, where it quickly went into the tissues, like the mouse study that came out this week that said the antibody responses were weak and transient. We don't know everything about this virus.

But HIV does not cause AIDS. The CDC definition is HIV and one of 25 co-pathogens. So the Lyme, the EBV, the enteroviruses, Martin Lerner's patients who don't get better with Valcyte. This is a reasonable hypothesis because we see the same thing. We've developed a cytokine signature that is distinct from Nancy's cytokine signature and from Ben Natelson's. So this is a marker to follow on clinical trial improvement, but there's no doubt these people are infected. With HTLV-1, if you're seropositive and you're sick, you can get some kind of treatment.

I'm not saying antiretrovirals. I'm saying immune modulators. So the patients that are found to be infected now--and there are thousands of them--need something now, not three years from now when Lipkin decides there is an association. Whatever their disease is, they're sick. And I know John--Chia--has patients who are co-infected and they don't treat the same way, so we can get together with the physicians who have co-infected patients. Even Lyme doctors, whom we are working with across the country. We can start doing something now. Take it out of CFS. It's not about CFS. It's about a retrovirus we don't understand very well. As Frank Ruscetti said at a meeting a month or so ago, "If this were HIV, it would be 1983." That's all.
*****************************************************
Thank You Patricia Carter of the http://www.mecfsforums.com/ for permission to repost this transcription for the World to read. ♥
*****************************************************

If THIS is not a Call to Help the Thousands of us that ARE sick and Need Help NOW I don't know what is... Thank You, Dr. Judy, for "Caring About us" and for taking on this extremely HARD job during these challenging times while

"The Band Plays On"............................................

Next on Deck is the CFSAC meetings on May 10th + 11th and then the International Awareness Day on May 12th.

May everyone Please "Help Raise Awareness" ~This YEAR, HERE and NOW ♥

If XMRV proves to be Contagious... you might be Next.

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#111~ Dear CFSAC~ One last time- Getter' DONE !

noreply@blogger.com (ME_CFS_unite) — Mon, 18 Apr 2011 21:21:00 +0000

Dear Dr.'s Wanda Jones , Chair Chris Snell and all CFSACommittee members and attendees,

I HAD wanted to be Polite and respectful in this letter but the NIH meeting has brought out my "Outside Voice"

cuz the WE patients are ticked off and as the Movie "Network" says~ "We are Mad as Hell and are NOT going to Take it ANY MORE" Got it ? Is that Clear ?

Do you need it in a few more languages ? Is everyone putting down the blackberries long enough to even read this??

Remember you ARE on Camera and all nose-picking Will be ( and has been) observed.... Wake UP you ARE on Camera and this should NOT be another version of the World's Funniest Videos of 2011."

I had been wanting to be in a Happy Mood when I wrote this letter but after the actions of Dr.'s Coffin and Vernon at the NIH State of Knowledge Workshop, I must say I am extremely Upset and in disbelief that #1~ Dr Vernon does NOT represent us in ANY WAY and the patients do NOT want her to utter "ONE WORD" to us or ABOUT US. Period. We have even created a Petition to that effect that has already gathered many signatures..

Who died and made her the MC at the end of the meeting ? And she demonstrated her lack of courtesy when she was interrupting "what the viewing audience was seeing as a VERY Important discussion between 2 researchers"... How DARE Her ?

We have waited almost 30 years to HEAR these discussions.... Shame on Dr Vernon........... "Black Mark Given." by MANY !!!

Dr. Monroe of the CDC's "poor Joke" at the NIH about not wanting to miss his plane was NOT Lost on the patients...

Especially, since it was the CDC that shot down Elaine DeFeitas in 1990 when another Retrovirus was in the early stages of being linked with ME/CFS.

Elaine made her BLT with Best Foods Mayo and the CDC decided to use Miracle Whip> Guess what> Garbage IN Garbage OUT> Then, they claim that "they can't replicate her findings".so... . She invites them UP to her lab to watch every step she takes.. and their excuse is that "they can't afford the 2 plane tickets to get up there." PALEESE... How Lame> When they ARE the ones that have the Name" Centers for Disease CONTOL and Prevention. Did they FORGET THAT ???

Hey, CDC, Dr Monroe, How MUCH IS YOUR LIFE WORTH? A plane ticket ???

Give me a fricken break.. and for THAT we go another 20 years without Help or Treatment ?

Right now the CDC is an acronym for us that stands for "Can't Detect CR*#" = until they start acting with INTEGRITY toward their citizens... They TRULY ARE a Worldwide Embarrassment to the USA.

And I am equally dismayed and repulsed and almost made physically SICK, by Dr. Coffin's wish to discontinue all XMRV Research... How DARE He...??
A REAL Research Scientist would WANT to Keep Looking > when they already have Thousands of patients that ARE Testing Positive, either by PCR or Serology or Culture and DO have antibodies and> Hello many were sick before Dr Collins 1992 date, whatever that was about... We have been sick since the mid 1980's~ Was he NOT even listening ??? There are NOW 7 cohorts, in 7 countries that have tested XMRV+ from different labs... So his arguments are MUTE points... Maybe he needs to buy a Hearing AID> poor baby should we chip in to buy him one ??

I think NOT, he has wasted enough of our money and can't replicate anything because HIS fricken lab is the one that is contaminated..

I respected him in the beginning, but he has now lost all of our respect... Until IF and When he chooses to EARN it back...

by Continue Researching what we already Have> a retrovirus called XMRV, and starts doing the proper tests and using the proper proteins.

I don't think he had his hearing Aid ON "At ALL" during the NIH SoK unless someone other than Dr Judy was talking...

Not too much Prejudiced there, especially to have the cajones to call for Research to STOP when we are sick with it... Disgusting !!!

Maybe it is True ? That "That Takes Ovaries" and that is WHY Only Elaine DeFrietas and Annette Whittemore and now Dr Judy Mikovits been the ONLY ones to NOT worry about their cajones and have learned to Speak UP FOR THE Patients...

Which is what you, the CFSAC, SHOULD BE DOING NOW.......................................

We are getting the feeling that either:

#1) "Some of these Researchers" do NOT Care about the Truth...........Thank you Dr Coffin> aptly named I might say.....

Those that DO Care, we could Easily tell who they are and "We Thank Them Whole-Heartedly" ♥

#2) That our Government and this committee does not really care about us or the millions around the world being effected.

#3) that this government is being penny-wise and pound Foolish, because we DO want our Lived Back like Robert Miller Said and we would LOVE to be paying Taxes and helping the deficit.. but many of us because the lack of knowledge after YOUR and YES I mean ALL of YOU> is literally embarrassing and you have NOT Cared one iota about REALLY Helping us~ or you would have Meant what you have said and Done something about it !!! All we get here, until NOW, literally IS Empty Words..

Where ARE your Consciouses ? You very well KNOW How sick we are and you Demand NOTHING >>>>>>>>>>>>>>

You KNOW as Dr.'s Leonard Jason and Chris Snell pointed out Extremely Well at the NIH> that we DO HAVE

"Post Exertion Malaise".. that is a HUGE Part of what sets us apart from those that only have depression..
The Canadian Case Criteria KNOW it , We ALL Know it, Many Drs KNOW it, now its time for the CDC to KNOW it and OWN it, Period.

Was Anyone Listening ???? Did you listen about the OI/POTS parts that effects our Oxygen intake and our ability to stand UP ?? and YES>effects our hearts ??

I hereby not only request, but a an insulted 17 year hospital worker that had to quit my job because of this illness

and now cant even get Disability because it took TOO Fricken Long to get a Diagnosis, which was NOT MY Fault cuz no Doctors have been educated about us,

but I DEMAND that this committee Send a message to the CDC in their STRONGEST Language to Cease and Desist with the infantile psychobabble that they have

on their website about this illness and start acting and behaving like REAL Scientists and Take DOWN THAT "GET" junk that Physically HARMS our hearts and

many of us have already had therapy because of the abuse of our Dr's and the CDC "not believing us" for 20+ YEARS... SO THEY HAVE ALSO INFLICTED

PTSD on many of us, Yet we Fight ON, because we KNOW the Truth and the world is also learning the Truth... that the CDC and NHS are Puppets

of the Psych Dept and the Insurance companies... We have had enough of this.. and you WONDER WHY our the Health Coverage in the country sucks ?

Emory University wrote a paper A YEAR AGO about those of us infected with XMRV+ and co-infections and What Meds would help us...

Where the Bleep are these Drug Trials ??? Magic Johnson is FINE on his meds and God KNOWS you are NOT letting us have any meds to get better so we can Have our Lives back and be Functional citizens again and get jobs and Pay taxes... What are you hiding ???Who are you covering-UP ??

WHY DO YOU WANT US to be SICK ? OH, so you can carry on this charade of doing non-relevant research for another 25+ years... WRONG !!!!

Like Dr Ruscetti said a month ago... If this were HIV this would be 1983.......

Wake UP> The Band IS Playing ON......... and you are NOT getting us any help NOR cleaning the blood supply...

You should all be ashamed of yourselves that you have let this Crime against Humanity GO ON THIS LONG>...

It is now World-wide and not only within the confines of the USA.

I was was Proud working in a hospital for 17 years that REALLY Cared about their Patients like Dr Bateman does..

and like WPI and Dr Judy Mikovits do.... but I have seen NO medical ethics displayed here recently..

I have felt NO Urgency to Help those with a RETROVIRUS and co-infections Get Treatment... NOW

Shame on ALL of you>>>>>>>>>>>>>>>>>>>>

You are literally watching as Rome burns or better yet as this Holocaust plays out and kills another Generation...

We ARE on our 3rd Generation now and the Family Trees are showing up things like Lymphoma

and Autism..Breast Cancer and oh yeah > Thanks My mom died from Lymphoma and I have XMRV...

and you play your fiddles..... and yet YOU collect your pay checks..

GIVE YOUR PAYCHECKS BACK TO PAY OFF THE DEFICIT OR "DO SOMETHING TO HELP US" > NOW

YOU HAVE 2 DAYS TO GET IT RIGHT, THIS TIME... PLEASE....

EARN YOUR PAYCHECKS... Speak UP and actually DO something to get the Huge Ball Rolling to get the CDC off their Butts

and the FDA off their Butts and get us some Clinical Trials... We have "ToDo Lists" we are NOT simply depressed

like the CDC website seems to think.... That website is an atrocity...and an embarrassment to the citizens of the USA.

If they have NO Respect for us, WHY on God's Green earth should we Respect them ??

If they don't believe XMRV is Real ? are they willing to receive a transfusion of blood tainted with it ???

This ostrich game everyone is playing is getting really OLD>...Older than I am... and the World IS seeing Right thru it..

The DHHS>NIH can't Afford any Centers of Excellence> Hello> The WPI already Exists... Help them dang it !!!!

I also hereby "Officially request that the NIH Create an Additional SEP for the study of XMRV~ NOW" >
Cuz otherwise there is NO Place that Grants can be written and sent to study this,... unless they come in

a back door thru some other of the MANY co-infections and that is BS> to the Hilt...

PLEASE Tell me> HOW MANY PEOPLE BEING SICK CONSTITUTE AND EPIDEMIC OR PANDEMIC ??
NOW answer truthfully here ??? Please....

There are at least 17 million worldwide in this new 21st, Airplane bug hitch-hicking era Century and that's

ONLY including the 20% that they say HAVE been diagnosed...

How about the Millions with Lyme that are testing XMRV+ ?

How about the 25% of Breast Cancer samples that are also testing XMRV+ ?

How about those with OI/POTS and XMRV ?

How about those with NO adrenal function or Thyroid function and XMRV ?

How about those on our Family Trees that now have Autism ?

How about all of the families brought to Bankruptsy trying to care for their "sick member" ??

How about the thousands that not ONLY do not HAVE any medical coverage OR Disability,

but have NO ONE to care for them and are Bedridden ?

Is the USA ~ Really a 3rd World country again ??

That seems to be the way you treat your citizens...

Dr Jones, How much is your Life worth to you ?

Dr Snell, How would you feel if you were bedridden for YEARS but your brain STILL worked fine ?

Where are the "Job Fairs" for the bedridden ????

We can't get Disability cuz the Dr's didn't know what we had..

We can't get jobs that aren't scams from home in bed..

WHAT do you expect us to LIve on and How do you expect us to Exist ?

And we were Hospital workers, professionals, professors, etc, Please Help us..

Where is your consciouses ???

We Demand a NIH SEP for the Research of XMRV and all cohorts connected with it NOW< Period.

If you do NOT make this a recommendation to Sec. Sebilius than we WILL KNOW where the CFSAC stands

and how much they Care NOT about the thousands of us that are NOT getting ANY Treatment or medical care

and are being simply left here to die.... so put THAT on your conscious... OK ?

HOW MANY YEARS MUST WE BEG FOR THE SAME THING ??

Do your salaries NOT Pay you enough to Buy Hearing aids ???

At this point , I really do NOT give a Rats A*# where or How we got it, but we HAVE IT and are testing Positive for it and HAVE Antibodies> Hello !!!

YES OLD ANTIBODIES> so not obtained after 1992....capiche ??

Sick Before Coffin's 1992 date = a Mute Point.. What's your Next excuse ?? For NOT Helping us ??

Continue your other Research, but for Gosh Sakes, "KEEP Researching the thing we ARE and Have antibodies for" = DUH

The poor Medical MDs that that you put on the front lines to treat us are the ones that catch ALL of the FLack ALL Year Long...

SHAME ON YOU> EDUCATE THEM... WITH OUR BIO-MARKERS SO THEY CAN KNOW WHAT TO TEST FOR...

My CD4CD8 is off and backwards, I have had HSV since I was 5, had EBV/Mono when I was 19, but to went away

and I was able to get married and work in the hospital for 17 years until I had my Triggering Event...

I had HIGH Fever "Sudden ONset" with a low grade fever that last for over 2 years....

I was on the couch living alone during that period. I could not even go to the hospital to say Good-bye to

My closest thing to a sister that was dying from AIDS as NO ONE could tell me what I had...

My EBV at the tome was very LOW> so NO it was NOT EBV> Get it ??

It had taken me 23 years to even obtain an written letter from my Dr that says I have > OH yes.. CFIDS and it is Spelled out... as well as OI< but she forgot the POTS part... and YES I have my own BP cuff and I use to work in a BP clinic, so I know how to take it. My thyroid gland is shot and so are my adrenals now.. so I must take expensive meds to supplement what my body can not make.... Where is ANY Mention of the deterioration of the body that THIS ILLNESS COSTS us so we can KNOW "what NOT to do" or "What to do to Help ourselves" = NO Where !!!

If you had DONE or Listened to Elaine DeFreitas maybe many of us would NOT even BE this sick now...

So you NOW have a Second Chance to get it Right... Your Center of Excellence is WPI>

Get that through your Brain Please.. They are the ONLY one to already be using Translational Medicine

which Dr Vernon to her detraction, tried to adopt and claim and a New idea, when WPI was already set UP that way 5 years ago !!! Vernon, maybe YOU need some Hearing Aids also, cuz we will NOT put up with your Revisionist History either.. capiche ???

Vernon talk about Everything that XMRV has done to bring ME/CFS into the Light of the Press and Scientists was done by the WPI not simply XMRV... sheez.... XMRV did not research anything. XMRV did NOT bring together the NCI and Cleveland Clinic, and it was the WPI that with them got the Science paper Published.. Vernon you can NOT claim what is not yours and you jealousy of them is showing as Green and your lack of knowledge and Expertise...

Last time I wrote you, I thought it might be my last, but NO Thanks to YOU I have found HOPE in WPI and learned a few things to help and my money has not quiet run out YET
so I am not on the streets YET, but I do NOT have enough to last until I am 66, so I will either die, or get meds, or lose the house I PAID for like a good citizens, and will probably have to go live in my trailer God knows where cuz I can't even drive to pull it anymore.. I use to travel to do my Nature photography in it.. to take me away from the stress of the hospital politics during the early days of HIV and AIDS....

but here we are again.... "And The Band PLays ON...

PLEASE REMEMBER THE

WORLD IS WATCHING YOU AND ALL OF THESE MEETINGS AND THEY KNOW WHETHER YOU CARE OR ARE ACTING SPINELESS.

For God's Sake DO something to Help us... Help those NOW that are XMRV+ Plus co-infections and Please get the Psychobabble OUT of the CDC's website and let's start acting like Adults here and Clean the Fricken Public Blood Supply NOW> NOT Years from now..

You are continuing to commit Crimes Against Humanity by your "Lack of Action." Period.

Own your Cajones or Ovaries and STand UP for what is Right... This Time NOW

Even Dr's Bell's Lyndonville kids tested 70% Positive for XMRV~

You want our blood FINE we'll donate it to you Personally~

You ARE Taking our lives... so what else do you want ?

We will NOT shut up for you or anyone at this point...

We have had enough > Got it...

We will speak up until our dying Day or until you get us some Meds to Help us as you are suppose to do !!!

It's Your choice... Give us Meds and DO More Research including a SEP for XMRV or we WILL start being heard in more ways than Egypt planned for...

Many around the world are not taking what is handed out bay their dictators any more and you have been not representing us effectively for the last 20 years.. nor the CDC/NIH for the last 30 years.......while "The Band IS PLaying ON>.

So HERE"s your chance NOW> Do it and show us what you are made of....

Cuz your actions will show more than your mere lip service

that we have been getting for decades.. while children die and the 3rd Generation gets infected...

WAKE UP and PLease SPEAK UP> NOW

The world is watching you and what you say and DO.............

Sadly, I remain, w/o hope unless you create a XMRV SEP and get us Help........

I might remain a while longer but I will NOT go down quietly and will broadcast to everyone, everything this government, AND every other Gov't has NOT done to take care of this NOW worldwide PANDEMIC. Wake UP !!

I had the Test, Now I need the meds..........

"Kill/Incapacitate the BIG BUG, then deal with the co-infections"

or does THAT make TOO Much sense ?

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#110~ The EYES of the World Have it- NIH SoK

noreply@blogger.com (ME_CFS_unite) — Tue, 12 Apr 2011 18:53:00 +0000

2011 NIH State of Knowledge reCap

There WERE people watching from ALL Over the World in all time zones via LIVE webcast even as after the 2 FULL days a midnight possible
Government Shut-down was looming near...
Dr. Francis Collins, Head of the NIH was in attendance.

Monroe from the CDC was afraid he would miss his plane ~
...a joke that was NOT wasted on the patients that already
KNEW the CDC's history as they dismissed and discarded the First Discovery of a retrovirus connected to ME/CFS 20 years ago by Dr Elaine De Frietas and chose to let it go UnResearched for the mere monetary cost of the 2 airplane tickets they would not buy to Validate the Discovery.
Meanwhile "The Band Plays ON"...

For those that missed the 2 day webcast
NIH- State of Knowledge ME/CFS Workshop
a few things were made very clear..

Here are a few short videos of some of the highlights..

It is now Painfully Clear that there are 2 separate camps now battling
~ one 4 the patients that are XMRV+ and have one or more co-infections,
and those that are ignoring multiple positive labs and thousands of patients XMRV+ over 7 cohorts around the world in 7 different countries.

One camp calls for MORE Research on XMRV and providing treatment for the patients that are already testing positive.

The other camp could care less about the suffering of the patients testing positive for the 3rd Human Retrovirus + one or more co-infections.. and they are calling for XMRV research to STOP.

I ask you~ if people have already grown antibodies for something they have had for 25+ years.. way before any lab contaminated anything... WHY can these patients NOT receive some treatment ? The fact that they had already pre-exisiting antibodies proves that their body had already been fighting the 3rd Human Retrovirus before and labs or scientists started arguing over it. Many have been sick since the 1980's NOT after your 1992 date.

NOT to treat them is tantamount to medical negligence and the medical profession WILL be held accountable and the medical health agencies NOT allowing treatments to be given to these patients will also be considered guilty of inhumane treatment of patients that have been very sick for Far Too Long and ignored by you. You will be held accountable for their suffering and for causing them HARM by your Lacking to Act now that6 you have been Formally Informed~ Period.
You can NO Longer play ostrich while the World watches....

As is stated in some of the videos here below~
This lack of treatment is INSANITY.
The CDC even states that HIV does not cause AIDS.
that AIDS = HIV plus one of 25 co-infections..
Even if you only have HTLV-1 and present as "sick" you can receive treatment...
Thousands of patients are testing XMRV+ and have numerous co-infections.
WHY are they NOT receiving some treatment NOW ?
Many have waited 25+ years and we are on the 3rd generation of people
dying from this illness.

The World is appealing to you..
If not NOW, when ?
How many MORE Generations must get sick and die
BEFORE you will give them Treatment ?

Keep researching for something else if you want,
but for Gosh Sakes HELP THESE PEOPLE and
Treat them NOW !!!
To NOT Treat them is a Crime against Humanity~ Period.

The ONLY thing they are depressed about is your ignorance and refusal to treat them with respect and give them appropriate medical treatment.

If a patient has Cancer do you give them an antidepressant ?
WAKE UP and Treat them with adequate medicine to Help them...

There are many in the medical profession that have this illness now and even they are ashamed of the way the current medical professionals are acting..
Especially when the GPs do not know the difference between a rhinovirus and a retrovirus. What med school did you go to?
Med School for Dummies ?

HOW MANY MORE MUST SUFFER AND DIE BEFORE YOU WILL LIVE UP TO THE HIPPOCRATIC OATH AND "DO NO HARM" BUT RATHER STOP PLAYING OSTRICH AND HELP THESE PEOPLE ??

If you do NOT Provide treatment to those that are XMRV+ with co-infections you are Guilty of letting "The Band Play ON. AGAIN...

Hemophaeliacs be warned, they are NOT screening or cleaning the blood supply.

Anyone receiving a transfusion, "Bank UP your own blood donations" so you can receive your OWN Blood if you are planning an elective surgery like a knee or hip transplant... and Make SURE you tell them to KEEP your Blood for YOU ONLY until AFTER your surgery !!

As one Dr was quoted~ "If this was HIV it would be 1983 now."

For those NOT Familiar with the history behind the Fight for HIV and the blood supply please watch this clip and then you will see for yourself how INDEED~
"And the Band Plays On" is taking place ALL over Again...

Those with XMRV and a co-infection do Not even HAVE a Name YET !!! yet it Kills....

Here is Dr. Leonard Jason's GOOD case definition for ONLY those with
actual ME/CFS because they Get Post Exertion Malaise and are NOT Depressed.
They are just VERY Sick and want their Health and Lives back.
While they are arguing over symptoms Millions are just trying to Stay ALIVE !
Even so more varied discussion takes place..

The following 3 patients are ONLY able to be there and testify because they
traveled across the country to receive the ONLY drug under clinical trial that is ONLY offered in 2 locations and costs $12,000 plus expenses for 6 months.
That buys "some of them" 3 years if it helps them them must start over and repeat.
They speak for the thousands of us that are in the 20-30+ year group and need Help NOW.

Please note the decrease in funding and grants approved in the last decade while patients are getting sicker, and the 3rd generation is getting infected.
Pat Fero:

Robert Miller:
Answering the Question: What kind of help/treatment do you want for which symptom?
(BTW~ This is NOT A woman's disease !!)
Retroviruses do NOT CARE what sex or race you are !!

Mary Schweitzer presents the list of her co-infections and makes a case for
treatment NOW~ Adults AND Children and Educate the Gen. MDs and Public.
What part of Serious and Urgent do you NOT Understand ?

Dr Judy Mikovits also makes a Case for Treating those infected with XMRV ~NOW !
They can not WAIT another 3 years...

We ask you- WHAT will the COST be if you do NOT choose to Treat these patients?
Are you waiting for their Families to sue you?
Give them Treatments NOW~
They WANT to work and pay takes and have their Lives back..
Many were professionals that can Help society again and our economy
if you will only treat them with compassion and respect.
Treat them while you work to STOP this PANDEMIC !

The Cerus Intercept System CAN clean the Public Blood Supply.
What are you waiting for
Everyone to Die and go AWAY ?
That will NOT Happen because new generations are getting infected.
Get a Clue and WAKE UP~
President Obama we Beg you... Help them get Treatment NOW. Please.

Look how good Magic Johnson is doing on treatments...
Why do you NOT want these professionals to be working and paying taxes ?
Why do you WANT them to Suffer and bankrupt their families ?
If you not choose to Help then you ARE Part of the Problem.
It's TIME to Lead, Follow or "Get OUT of the WAY" of their Treatment~ Period.

Is this AIDS 2.0 ??

What ever you do, no matter where you are, if you have ME/CFS or XMRV, or care for someone that does, or know someone that does, PLEASE write a letter THIS Week to cfsac@hhs.gov by Sunday, April 17th to speak on their behalf and let your concerns KNOWN so they can be received and Let Your Voices HEARD at the next CFSAC Meeting May 10+11th, (webcast LIVE) with the day after being our International May 12th Awareness Day Worldwide.

The world Thanks You ♥

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#109~ The Birth of "Advocates 4 Answers"

noreply@blogger.com (ME_CFS_unite) — Fri, 01 Apr 2011 10:13:00 +0000

OH Happy Day ♥ Happy Birthday Dr Judy

and for the birth of "Advocates 4 Answers"

Happy April 1st everyone... and it's NO Fools Joke !

Please Help us wish our very own, Dr Judy Mikovits' Birthday today !!

Birthday Greetings for Dr. Judy maybe emailed HERE

Also, Congratulations to Dr. Judy in her New Position at WPI as the
Director of Translational Research. What a perfect fit for her and blessing for WPI and the patients.

What a Perfect Day to Launch the New Website and New Advocacy Campaign
for Neuro-Immune Diseases.

Dr. Judy and WPI epitomize the essence of real

science, passion and compassion~ along with now a new advocacy campaign ~

The website is UP and Available NOW for you to Sign the Guestbook, so you can Help be one of the "Advocates 4 Answers" and becoming a part of WPI's "May Awareness Month" for neuro-immune disease.

Throughout the month of May, we are inviting you to join us in raising awareness and funds for the important research into the underlying causes of neuro-immune diseases. Every day there will be an opportunity to show your support. By signing our guest book, you are pledging that you want to be a part of our movement and will participate at a level you are comfortable with to show your support.

You will receive an email prior to May 1 to help get you started.

You will also be show the link for the New Facebook page link for this Campaign also...

Be an "Advocate 4 Answers" and sign up today~ by going here ~

Please SHARE this post and get everyone you know
friends, family, and care-takers to help and participate.

http://anida.com

We look forward to an Exciting 2 months of Advocacy and Beyond......

Mobilize and "Join Our Energies TOGETHER" so we can be Positive Source for advocacy at this much needed time with all of the recent research developments thanks to WPI and our Heroes "on the Reno Hill."

I sincerely look forward to Joining with you ALL and taking part in this

"much needed" long over-due United Campaign for the millions that these illnesses effects..

Its it TIME to Unite behind the diseases and drop any political illusions of us being separate and work with the one place that we already KNOW and TRUST ♥

We are as Powerful as our United Voices.

Our time HAS come.. Let's Grab this Brass Ring and Run with it, OK ?

We are now on our 3rd Generation that is being effected with these illnesses and it is Time NOW for us since the Universe has seen fit to unite us with this technology to help Be "Our Own Voice" ~

Please Come Join us... 30 years is long ENOUGH

It is TIME for the People to USE their Voices..

XMRV will NOT Quit and Neither will WE or WPI, OK

Heartfelt Thanks for Participating and Joining us

on this New Campaign of Advocacy !

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#108~ RE: Problem with Trine Tsouderos's reporting on XMRV

noreply@blogger.com (ME_CFS_unite) — Sun, 27 Mar 2011 08:59:00 +0000

I attempted to comment on another bloggers post, but I guess today I must resemble Jerry Weintrab's autobiography, "When I quit talking then you will know that I am dead." Needless to say, it frustratingly kept telling me my reply was too long but instead of having a functional character count, as some reply boxes have so you could know how many characters you had left to use, it would only tell me at the end that I was over the limit.. I gave up and said I would reply over here..

So I urge you to read the Original blog First, so you will know what I am replying to , OK? If you have a short comment to leave to Help the blog get ratings it would be appreciated. That blogger doesn't usually post often but when they do, they usually have put a lot of time into their research and are ON Target. Thanks for caring about this topic and helping to Stop the Inaccurate Biased reporting.

Original Post

I am adding my longer comment below:

Let's start with the ongoing Dr. of the Original Incline Village cohort and his opinion as expressed in this short audio interview.

Dr. Peterson about XMRV, Oct 2009

If Trine somehow missed Dr. Alter's slide, this might clear up any confusion of the facts..

Let's not forget to show her the video about Dr. Bell's kids and how after 20 years later ~ 70% of those tested on the first go-round, came up XMRV+. Gee that kinda matches the Science paper 67% I think ? Maybe upon further testing the numbers might also go UP higher ... Another specific cohort testing positive.

And Dr. Bell thinks this will cause a Paradigm shift. Maybe she missed this tiny tidbit.

Trine can hear and watch the video here:

Dr. Bell's Lyndville Video

Maybe Trine also skipped Dr Cheney's report last year about his cohort of patients that were also testing XMRV+ ?

I was also married to an Investigative Reporter that was a Capitol Correspondent which is why I am living in my state capitol and I know the difference between "valid legit journalism" and rag paper writing. Obviously both the writer and the editor are at fault here cuz the editor must not be informed and is MIA or asleep on the job like that Reagan airport traffic controller.

Either way the result is a sloppy job.

And since I have also tested XMRV+ by antibody that lets me know that I really am, cuz "you simply can not grow antibodies from any lab contaminants" .. unless the lab contaminants were in the lab that was preparing the vaccine you were given as a young child maybe ? humm

I also worked in a hospital for 17 yrs in the 70's-80's and was on our Hospital Health + Safety Committee and was our Rep. to go to the Conferences in San Francisco at at the height of the HIV outbreak.. so many of us know what a RV smells like, acts like and I have never yet seen one to cause health, quite the contrary. By the way, XMRV has even been shown to be linked to Lymphoma

(and originally Prostate Cancer) and that was what my mom died from.

Dr. Singh's patents are also building up and it seems that 25% of the breast cancer patients tested also were XMRV+. I can't wait for her paper to come out.. the spin rag writers will be going wild again... Think we are joking ? Here is a slice of her "dark colored breast tissue" that shows which parts are XMRV+

Oh yeah, it's also time for "The Band Play On" and Deja Vu for us 20 years all over again.. Let Trine read this and see just why we are so skeptical, because we have already seen this rerun and there really needs to be some new better factual reporters. Currently we seem to have only 2 that are after the truth. LOOK at the date on this one, please.... and check the Dr's names~

20 year Deja Vu article

The evidence is building up here, but where the "original contaminant" came from is what is in question. It was certainly NOT in any of the studies that resulted in published papers with positive results.. Whether it was a lab accident way back when possibly with the vaccines~ gee funny that many Gulf War Vets got ME/CFS after all of the vaccines they were given, even a number of those that never actually went abroad.. Hummm

OR, even worse, maybe there was actually some biological scientific studies being done for bio-warfare purposes and the ticks and fleas that were meant to be the "carriers" accidentally got blown the "wrong way when a low barometric pressure came in and they were blown from Plum Island back onto the Mainland near New York where there have been documented Lyme outbreaks that are now testing XMRV+... Hummm

Whatever the fricken reason.. the bottom line is that we "are testing Positive" and legitimate medical research to help us needs to be done because a retrovirus, no matter how you got it, is a dangerous thing and needs to be treated ASAP. Got a headache take an aspirin, but what do people with retroviruses get currently ? Nada, unless they choose try some of the old HIV drugs because real current serious research to help us has NO Place to be budgeted for and done. Only HIV and HTLV-1 and 2 seem to be legit. Humm funny.. Wonder why ?

If Trine or Dr. Oz or any other wealthy politician had a new human retrovirus how much you wanna bet that the research money would suddenly show up ? Think they would wait for 25 yrs and for 17 million to get it ? I would not want to wish this illness on anyone, but seriously folks, someone had better start "getting REAL" pretty darn fast ! The lives this thing is costing, the $20 billion a year it is costing our economy, the families it is bankrupting, all of this because the CDC has watered down the definition that was only meant to be a description of the Original Cohort, and they have done nothing but water the real biomedical symptoms with psychological symptoms that might be side effects but certainly are most not primary causes of this illness. Had they cared to even follow the first 2 rules of good medicine at the time this would have not happened :

#1~ Take a good medical history

#2~ Do NO Harm.

They have violated both of these..

They did not even care to talk to the patients in that original cohort, nor examine their symptoms, they only cared to look at the sterile negative test results, and because you can't test Positive for a test that has not been invented yet, they chose to make up new symptoms and funnel everyone over into the Psych dept. when they were the ones that should have been receiving the counseling.

Obviously, they are not capable of disease control or prevention if they are not even willing to honestly evaluate the original patients of a particular cohort.. oh that's right.. they wanted to call it hysteria which would have no cohort.. another attempt to make this a woman's illness which it is not. The men that are testing XMRV+ take exception with this and I don't blame them.

(root word: hystera)

Origin of HYSTERIA

New Latin, from English hysteric, adjective, from Latin hystericus, from Greek hysterikos, from hystera womb; from the Greek notion that hysteria was peculiar to women and caused by disturbances of the uterus

First Known Use: 1801

Viruses and retroviruses do not follow the rules of countries and obey "do not cross" any country borders. Why would M.E. be in Canada but not be able to cross not the USA ? Especially with today's convenient modes of distant travel for humans let alone birds or other insects.. why would a virus behave according to CDC limited thinking beliefs, duh ?

CDC the cohorts are showing up and now testing positive for XMRV.

World wake-up.... I had 5 close friends die from AIDS, but even with AIDS only one life is taken. With ME/CFS and now with a retrovirus showing up in 4 of the original cohorts and many others that are being tested now, guess what? This IS contagious and you have been negligent for the past 25 years.

The joke amongst we the patients is that "the Good News is: You don't have AIDS.

The Bad news is you don't have AIDS."

This disease will kill you 25 years earlier but will give you many other diseases along the way, cost you and our medical system a lot of money and frustration, you will be belittled and treated like you do not have any biomedical illness.

They keep telling us "it's all in your head", but actually just like the scans Dr Cheney had done originally with his own money up at Incline Village of the the brains of the Original Cohort, when showed to a friend of his that was another Dr., that Dr. told him, "These look just like the scans of my patients.. and they have AIDS." So guess what, it's not all in our heads, close.. it's IN our Brains... Isn't that where M.E. goes ? Why have you not been looking there if you keep thinking it's in our heads Then SCAN THEM darn it... Enough of your double-talk and enough of this poorly researched reporting...

Either "get the facts correct" or keep your computers turned off and do not publish any more pyschobabble cuz we have heard it all before.. and sadly for you we are not dead and we do remember things and the internet and laptops became mainstream and your errors have been documented whether CDC or reporter.

As another saying goes..

"It's either time to lead or get out of the way"..

To the CDC is say:

"Take DOWN that CBT and GET junk off of your website." You are showing that you are still functioning in the 17th century by doing so. This is the 21st century. Please start behaving like a First Class Medical Research Facility or we will make sure you are replaced with one. You are digging your won grave and playing ostrich in the meantime. Discard that abomination that you call your "5 year plan" and put someone in charge of rewriting it that has some functioning brain synapses and dendrites. I think you have been "buying your own BS for far too long."

We even have many in the medical profession that have it because we have been on the front lines of where all of these viruses were.. Trust me, these people believe "really FAST" that this is not "all in our heads," because they like most of us were active and not depressed when we were suddenly struck down by this virus.

ALL of the Dr's that have Seriously worked with these cohorts have "Always Believed" that a virus was involved, and its time that everyone start waking up, before someone in your family gets it next.

The first job of a virus is to infect, duplicate and spread. Guess what~ Retroviruses are excellent at doing this because they get into your DNA. I believe that the CDC forgot this or does not want to face another retrovirus that they ignored and let spread. Their hands were full with HIV and so they let this one go because people were not dying "instantly."

Clearly, there are only a few leaders regarding this topic both in the medical research field and the reporting arena... and we know who they are.. and who they are NOT.
At this point~ Trust MUST be Earned.

Those that want to have any serious honest constructive conversations with us on any topic know how to find us and we will be very open and willing to discuss things realistically.

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#107~ Guest post, "Laurence's Rant"

noreply@blogger.com (ME_CFS_unite) — Sat, 19 Mar 2011 05:09:00 +0000

Having this blog, I am lucky enough to have a place where I can also give space to those that do not have a blog or a place to use their Voice to Speak UP and Be Heard.. For THAT I am Very Grateful.. We ALL deserve to Be Heard. This weeks guest is from the UK and a retired Veterarian so very familiar with medicine and how it works and how those who influence that profession behave appropriately or not.

Thank you for your post...
I wish we ALL could have a little pill for MECFS/XMRV/Lyme etc.
***********************************

Yeah, I'm fine thanks. Keep getting little health problems but my doc says, what do you expect, you're getting to that age? Oh thanx very much. I know my hair's going a bit grey, but I didn't vote for
infectious arthritis in my knee (sorted now with antibiotics - was likely to have been Lyme, what else?), bad ears (OK now), ringworm on my chest (had it years), skin tags on my neck, need for stronger
reading glasses, high blood pressure, breathlessness, chronic cough (I’ve never smoked), weight gain and balding - then to be told it's all down to age. Really? I'm not retirement age yet - well, not for another 10 months.

I still have ongoing problems with my M.E. since Feb 1995 like irregular sleep patterns and need for daytime rests. Not to mention a degree of impotence/ED brought on by prescribed (never again!)
antidepressants which have long-term or permanent effects, impotence or ED being one, added to the similar effects of M.E. and general age processes. Can be fixed temporarily with those "blue diamonds" but I
have no need presently as I don't have a functional girlfriend. I'm seriously wondering whether it's a good idea to consider inflicting my problems on a new partner, so I cancelled my subscription to a dating
site on the internet after just one date. We met & chatted over a cup of coffee. She was disabled, a leg amputee, nice enough but I didn't fancy her anyway.

A new virus has been found in virtually all M.E. patients, no surprise, we really knew all along. We’ve known ever since MRI brain scans showed lesions the same as in HIV/AIDS - in 1985 - that it was a
retrovirus. Then a retrovirus was found and a paper published in 1991. This showed the virus inside mitochondria, which are the “batteries”
or power-units inside each cell. If they don’t work, you get very tired and weak. That explains everything. Then, just over a year ago, a retrovirus, presumably the same one, was found in ME patients in America. It’s named XMRV - too complicated to explain why.

Nasty things, retroviruses. They’re never good, usually harmful. They cause lots of cancers - breast and prostate, to name but a couple. People have been studying them for over 100 years. There’s one going
round Australia killing hundreds of koala bears right now. We have two kinds in our pet cats - Feline Leukaemia and Feline Immunodeficiency Virus (AIDS in cats). A Retrovirus is an RNA virus that splices itselfinto the actual DNA of your cells by transcribing itself into DNA. It never goes away.

XMRV affects up to 250,000 people in Britain alone and is the biggest cause of children being absent from school. Thousands of people have lost their jobs, their marriages, their houses, and are dependent on state disability payments, a huge drain on Britain's economy. But the Government won't take it seriously. They could have saved the taxpayer MANY BILLIONS of pounds over the years, and we could have had tests for the virus, proper antiretroviral treatments, and possibly vaccines, by now, if they'd invested money in the necessary research 20 or so years ago.

Instead, the virus has been pinpointed by a small private foundation in the USA, started by a couple whose daughter has been a sufferer for years. The wealthy husband put up the cash and they employed
experienced retrovirologists. They have done very careful research to extremely high standards, high enough to get their paper published in “Science” magazine. Meanwhile, here in the backwater of Old Blighty,our Medical Research Council (MRC) has been persuaded by thepsychiatric profession into promoting the idea that the disease is a mental one and has only been funding research into psychiatric treatments, so we are now well behind the real world. This Government attitude has led to several deaths directly from the disease and dozens of suicides.

I attended an All-Party Parliamentary Group on M.E. at the House of Commons in December ‘09 and the star turn was the Health Minister, who stated that he has no power to dictate to the PCT’s (primary care trusts, local medical services), or to the MRC as to how it distributes its money to researchers! Incredible. So what exactly IS his job? All State research funding is channelled through the MRC.

In the UK we are censored. We’re not even allowed to talk about ME or XMRV in the Press. Or rather, they’re not allowed to print it. All scientific material has to go through the “Science Media Centre” (SMC), a British Government body set up deliberately to censor it. The
Psychiatrists (called the "Wessely School") can of course publish any rubbish they like - and they do.

One group of "researchers", involving the psychiatrist Simon Wessely who selected the patients, published a paper saying they couldn't find the virus at all. Even though it's present in a lot of normal apparently-healthy people. Surprise surprise. They completely refused
to use the same techniques in the lab as the US group. Obviously, they didn't WANT to find it, as Wessely is a well-paid advisor to the insurance giant UnumProvident, and is due to retire with a good
pension from them. The psychologization of the disease has been good for the insurance companies in the US who can deny paying out for mental diseases, but this has been hoodwinking our Government, who
have had to cough up for disability payments and for carers instead, not to mention the loss to our economy of people who once were perfectly functional and working taxpayers. Then there’s all the intolerable pain and suffering.

Personally I'm a lot improved over the past sixteen years but still need to rest a lot. I can think straighter and can now cope with easy crosswords!
♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥
Thanks Laurence for "Speaking UP."

For those new to this blog, please be sure to check out the new link I have added up at the Top Right for Helping the Research....Please Share and as usual Comments are Always Welcomed."

XMRV Chronicles
If you need a place to post your thoughts on current Research on ME/CFS/XMRV Please leave me a comment and then we will be in Touch, OK ?

I have also added some new blogs on the Right side and a few Petitions that might be worth a look if you are so inclined.

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#106~ Beyond "Coffee-Talk" Time

noreply@blogger.com (ME_CFS_unite) — Fri, 11 Mar 2011 10:11:00 +0000

"Brave are simply those with the clearest vision before them and not withstanding the obstacles go FORWARD in the direct of their goal."

I have read numerous posts, comments, and now blogs that have disturbed me lately, yet a few had a grain of inspiration in them. I would like to cover a few topics in this post that have been brought up recently.

In the USA, the DHHS, NIH, CDC, and FDA have let us down as citizens for the past 25 years. ENOUGH is ENOUGH.
Let us take a lesson from the cyber generation that has emboldened the youth of the world that DEMANDED "Respect AND Accountability" from their Governments OR those NOT willing to be accountable MUST GO. PERIOD.

After watching the events in the Middle East during the last few weeks, it makes me even more committed to us working as a group of united individuals as strongly and constantly and persistently as we can, but to also stay non-violent in our verbage. I feel like we are also Egyptians/Libiyans that have been held in prison for 25+ years and are fighting against a dictator that rules our lives....

The Middle East is now venting 40 years of pent up emotions on many levels in many different areas of their Governments and they ARE getting results.. How many years have you had bottled up ? Do you NOT think that "Holding IN that Anger" has not hurt your health ? It is NOW Time to go "Beyond Coffee-Talk" and make sure our government agencies and individuals HEAR US LOUD AND CLEAR. But PLEASE ~ Speak from your Heart, let them know you are NOT going to take it any more, that they ARE and WILL be Held Accountable and do NOT Threaten anyone, whatever you do, OK ? Keep a copy of every thing you send so you have PROOF that you were NOT being threatening and were ONLY speaking from your heart. The Cancer INSIDE our Very own Health Agencies MUST STOP !!!

The Republicans want to save $100 Billion dollars, OK< just our ONE illness (ME/CFS) not even accounting for the costs of how XMRV is in reality undermining our immune systems and thus laying us OPEN and Vulnerable to MANY Diseases and Cancers, just like a house built on sand> like in Haiti does NOT Stand, We DEMAND our Government that has effectively DENIED us "Equal Health Representation" for the last 25 years NOW and IMMEDIATELY "WAKE UP" and acknowledge that their sleeping at the wheel has not only cost us 20+ years of our tax-paying lives, but is also NOW at this time costing OUR Economy $20 Billion a YEAR and "It is Now Time" for them to Validate this Pandemic and Stand UP to this and the other diseases in our complex and HELP US "RECLAIM OUR LIVES" so we can NOT ONLY "Have our Lives Back, but also become tax paying citizens again which will help the economy, Period." Their lack of accountability (please do NOT forget that Pres. Obama was the FIRST to add the cost of the 2 Bush wars INTO the Budget, previously they were NOT added.) Talk about previous lack of Transparent Accounting ??? If they had been Encouraging Proper Research on MANY Levels not just psychological we would be reaping the benefits of that research NOW instead of being further in the hole. Their FAILURE to do so is COSTING not only our lives but our economy.

I have always Voted for the issues and the person, NOT by any party... What is going on NOW is making me even more Happy that I have had this mindset, because NO one Party or even Patient Org. has ALL of the Answers.. We must BE "Informed Citizens AND Informed Patients" if we expect to STAND UP for OUR Rights on ALL Levels and Hold ALL of them Accountable. So that is why I feel I have the Right to mention any party or org in my blog because I will take the Best ideas of all and I will reject the bad Ideas from all... That is part of critical thinking.. Do not accept anything ANY Group says as Gospel and ingest it like pablum. Question EACH item and research it or as one of my grade school teachers once told me, " You do NOT need to know all of the answers and are not stupid because you do not know all of them, BUT, be sure to at least KNOW where to go to get them." THAT is the Strength AND Beauty of all of us Patients and Patient Advocates because we CAN help educate and Inform each other so that we CAN Speak with an Informed VOICE and Speak in LARGE Numbers.. WHO says AARP is the ONLY Loud Voice to be Heard in Wash. DC. We CAN be the same way if we mobilize our laptops and computers and our networks amongst us....

I also have been questioning why there is not a SEP or place where XMRV grants can be submitted to for approval. ME/CFS or whatever name you want to use aside, isn't XMRV already linked with prostate cancer and lymphomas also, with suggestions of a 25% link to Breast Cancer and a much larger link to Lyme ? Why is there not a place to study this new retrovirus ? Since there are so many of us are testing positive for it, maybe this should be one of the issues we jump on to and campaign about. just a thought..

All I know is that we MUST start getting more focused and pick out targets and then act up in as many legal ways as we can, and I know there are many ways we can do this. We just need to make sure that no one flies off the handle and starts using violent threatening verbage. They seem all too willing to throw the baby out with the bath water.

"Why Movements FAIL"
A dozen people complaining with a dozen people defending is not a “movement in a world wide forum." Perhaps ME/CFS has struggled because we are not as united as a community as we would like to think. Perhaps our elitist attitudes, our groupings, our unwillingness to co-operate and work together for the greater good keeps us from embracing “community.” If we are not willing to get the information out there, to work together, to involve everyone …. then factions who decide to play with us and destroy our hard work and thumb their noses at the reporting process succeed not because ME/CFS is such a failure … but because WE are. (1)

*YOU are as STRONG as YOUR WILL to be Heard.*

The DHHS, the NIH, the CDC and the FDA have been charged with caring and guarding the Health of the People of the USA and Preventing illnesses.
They ARE NOT doing that. They are and have been part of a GRAND Cover-up that includes inept sloppy redefining our illness so it does not even resemble our original illness, but also sloppy research that is trying to undermine now the 3rd Human Retrovirus that IS in ACTUALITY "In the USA Blood Supply. Period

Speaker of the House of Rep. Boehner claimed on 'Meet the Press', Sunday Feb 13th, 2011, that "he wants to hold his members to the HIGHEST STANDARD."
I respectfully say, Bull Poop, unless he ALSO acknowledges that he is PART of the Government NOW that is he is actually effectively NOT Representing the MILLIONS and their Families that have "Fallen Thru the Cracks" of this ineffective penny-wise and pound FOOLISH attitude to Health + Disease Research. Unless he is part of the Solution , He is INDEED PART of the Problem.
Trust me, if one of his family members had Cardiac Dystolic Dysfunction caused by ME, which was an opportunistic infection that they have because they were XMRV+ the Research would be ON THE SCHEDULE

Egypt went thru 30 years of being ignored by a Dictator with a Police State. We, those with Chronic Fatigue Syndrome (Known in the REST of the WORLD as Myalgic Encephalomyelitis), or Lyme, Atypical MS, Prostate Cancer, Lymphoma, HHSV-6, HHSV-7, Cytomeglovirus, have also tested Positive for many other tests, when our Dr's and coverage would even run the tests, such as abnormal Holter Monitor , VO2 MAX, Thyroiditis, EBV, Low Natural Killer Cell Function, Abnormal SPECT Scans, and NOW to make matter WORSE ~ MANY of us are testing POSITIVE for the 3rd Human Retrovirus called XMRV. (2)

There is no HISTORY of our disease besides CFS, that CDC or NIH has "EVER" been recognized. You can find a sentence stuck in here or there about M.E., but the SCIENTISTS and policymakers don't believe in it. Except, of course, for psychobabble. It's not just XMRV.                       We can't even get funding for HHV-6 either.

Right now, "THERE IS NO FUNDING CATEGORY FOR XMRV." Period.

If you were Appalled at CROI Conference as Many of us were the please Help us and Demand "CROI-AIDS 2.0" aka for XMRV.
Do you REALLY think there is a Legit reason for them ignoring the 3rd Human Retrovirus, when the scientists are SO Scared that they are testing themselves for it ? Seems to me someone is working "awfully HARD" to cover up something here...

Conference Mission
"The mission of CROI is to provide a forum for basic scientists and clinicians to present, discuss, and critique their investigations into the biology and epidemiology of human retroviruses and the diseases they produce with the ultimate goal of translating laboratory and clinical research into progress against the AIDS epidemic. "

Dr. Jamie has already explained HOW all of this most likely happened...
The cat is clawing its way OUT of the Bag...
It's TIME for the NIH to "Get REAL" about this Retrovirus and Take it SERIOUSLY~
The CDC + UK MRC have a LOT to be worried about NOW...
http://treatingxmrv.blogspot.com/2011/03/cover-up-and-contamination-theories.html

XMRV and Family will NOT QUIT and Neither will WE or WPI.

The NIH State of Knowledge Conference meeting in April will show the colors of the NIH and then we will know where to expend our energies at that point. Here is the supposed agenda.
State of Knowledge Agenda
How it pans out will let us know where we stand.
Please do NOT Wait to start your Letters for the CFSAC..
Please start gathering your thoughts NOW, because by the time the SoK is finished we will either be Very Happy OR Very Angry... Either way we ill have, I promise you, expended a lot of adrenaline and energy and many will crash. The due dates for our CFSAC Letters will be published about the same time and if we are crashed we will NOT be able to think clearly.. so Start NOW, so you can already have MOST of your thoughts ON paper/computer and then they will just need last minute tweaking before you sent them in "in time." OK ?

For our one disease alone, that the government is ignoring and underfunding research, the numbers are getting staggering. In effect, we ARE Indeed the New form of "AIDS 2.0" patients ONLY we are in that phase where our Government HAS NOT BEEN WILLING to do the REAL "Quality-ERROR FREE Research" and collaborate with the Researchers that HAVE Excelled in this Research, such as not only their very own branches of the National Cancer Institute, NIH, FDA, and the Cleveland Clinic, and the private Whittemore Peterson Institute.

Many of us that had Wonderful lives before we were stuck down with these illnesses were living Happy lives, contributing to Society and many were Doctors and Teachers among other leaders and active honorable tax-paying citizens. Now not only have our LIves as we knew them been wiped out in heartbeat, but so have our careers and incomes and our abilities to pay taxes. HOWEVER, Try as they Might~ The days of ignoring us and trying to demean us and undermine our UNITY as MILLIONS of wronged citizens that have been FAILED by our country is coming to an end. We have WORTH. We DEMAND "Proper Representation."

Since the Governmental health Agencies have ignored all of the diseases that are showing up to have XMRV+ in common... will YOU or ANY Scientist PLEASE Tell me what other discovered Retroviruses have been shown to Cause HEALTH ? This is flatly absurd. The list of associated diseases is growing weekly.. as more studies are being done.. The diseases downline thru the familial family tree is growing exponentially. We now have people that are XMRV+ that have Prostate Cancer, ME/CFS, Lymphoma (from which my mother died), Autism, Atypical MS, Lyme Disease, and even Breast Cancer. How many more Diseases need to be linked and how many more bio-markers do we need to have for this Government to STOP abusing our Civil Rights and to DO Their Transparent DUTY by Funding STUDIES for this 3rd Human Retrovirus ? To date there are approximately 17 million ME/CFS patients worldwide and that is NOT by using the Reeves CFS definition. I can not even begin add up the numbers of citizens whose lives, jobs and quality of life are being effected by the other diseases already linked to XMRV.

We WILL ACT UP in our own ways, our version torn from the pages of the ACT UP History lessons ESPECIALLY as we have been using our INSIDE VOICES > "UNTIL NOW" as we have playing "sweet and nice" for 25+ years and it is getting us NO WHERE~ Enough is Enough. ENOUGH IS ENOUGH. The Governmental agencies by their lack of integrity has left us NO CHOICE but to not only Speak UP for ourselves, but also for the Public Health that they are now and have been endangering.. AND FOR OUR CHILDREN AND FUTURE GENERATIONS, just as the HIV/AIDS activists did for us.

The Congress is worried about the deficit. I am worried we will not be ALIVE to be worried OR Fix the deficit.

The USA and UK Governmental Health Agencies, and the other countries that look at these two to follow, are undermining the Health of the Millions of Americans and citizens worldwide, and we are literally talking about it being the 3rd generation of these illnesses that is now mutating and causing even more new illnesses that will cause more grief, family destruction and economic hardship to the people and countries of the world.

It is TIME "Our Activism" GET SERIOUS ~
Gang of 25+ years> Take a fricken' lesson from the younger generation..
Younger generation> the Long Time holders of History of these sins of the past "CAN be Valuable Resources to you," Please --> TEACH THEM "How to Tweet" and use the newer Social Media, if they do not know HOW. Teach them How to do an online Fax.

Hello to those younger that are relatively NEW to This Cause > The bedridden Gang of 25+ years are the experienced folks that KNOW the History, but YOU still have the strength to HELP "Save YOUR Futures." We can work together.. We NEED to UNITE and form a Real COMMUNITY. Get your Families and Friends that Care involved NOW. The Gang of 25+ can do the CFSAC "call-in" testimonies, and YOU the younger generation are the ones that MUST attend the meetings IN PERSON for us and speak in Person, Hold the signs and wear the T-shirts. Stand UNITED Behind those that are speaking and REMAIN There.. As long as you are quiet and still, but SIMPLY within the camera view, you are not doing anything illegal and you have a Right to Show Support for those speaking for you. Learn from the Brave HIV/AIDS "ACT UP" generation and the citizens of Egypt that stood UP 'peacefully' to their 30 year Dictator with the Police and Military ready to END Their lives. How far do you think the CFSAC will go that far to Silence us ?

We will form our OWN "Tea Party" for the lack of a better name, and we WILL FIND a Better Name, trust me.      Maybe the "XAND Tea Party" ~ taking suggestions.. Please....

I hereby SUGGEST that WE Design a FLAG to represent our XAND Cause, (for lack of a better name~ suggestions PLEASE) since it is not only a female or male or straight or gay or adult or child, but a HUMAN PANDEMIC that I feel we NEED a Flag so they will KNOW us by our Flag.. and then any individual or .org that believes in our cause when they are speaking about our illness, not necessarily FOR any of us, but expressing THEIR opinion about OUR illness and ANY injustices that need to be addressed or during any XAND ACTUP Actions anyone may display this flag... So Let's UNITE Behind a FLAG that will represent ALL of us.. with ALL of our Invisible Diseases that OUR Government has ignored like they did HIV/AIDS for the First 5 years until they Started ACTing UP !! anybody Game ? I would be willing to work with anyone to help create a Flag that we could them printout, maybe a few can sew a BIG ONE, make banners, what ever we can think of.. Put it on stationery, on our Faxes and emails as jpgs, etc.. Let's CREATE our OWN BRAND that can be used Worldwide, OK ? So ideas from around the world will be accepted. I want this Flag to be as well known as the Rainbow Gay Pride Flag, OK ? What can represent all ages, sexes and nationalities ??? Help me here Please..... I KNOW we have many Beautiful CREATIVE Brains out there... Some are good at letter writing and some are good at artistic things. Let's all work together to RAISE AWARENESS and use the Best of EVERY Person and .Org out there.. We will be dictated to by NO ONE, but we WILL UNITE to create the STRENGTH in NUMBERS as Individuals, across 3 generations around the world, that is needed to do things en masse "that will be required" to get this job done. If Not NOW, WHEN ?

I here by Put a Call OUT to all Tweeters and Facebook members to start making a List of All and Everyone to which we need to get our message. Whether they be a Political Person, a Celebrity that has Hollywood that has experienced the devastation of HIV/AIDS, or some PR folks, basically ANYONE in ANY walk of life that you feel could or may listen to anything we have to say~ even if we are just informing them.. Maybe along the way we might Find someone willing to Get some Extra PR that does not have a CAUSE yet to garner them more PR and we can find a WIN/WIN that would serve BOTH of us.. Then make a list of all the FB users that ALL of us need to Friend that are movers and shakers and Celebs that might need a CAUSE or that have sympathetic ear.. Every Celeb needs a Health CAUSE to get GOOD PR nowadays.. "it is the IN thing" ... Let US be the latest IN thing.. Help us CREATE a list. Then we can work on Tweet & Facebook Campaigns. Put all of your lists on an easy to create a blog and then send me the link in a comment here and then we can ALL disseminate the list for everyone to use.

I respectfully request everyone write a letter to the NIAID requesting "studies of XMRV+ patients"- NOW,
"NOT After" millions more have died and lives, families and economy are even in worse shape.
Here is a quote from their letter below:

"NIAID is soliciting input from the infectious diseases research community to help identify potential high priority research areas to be addressed by the NIAID Leadership Group for a Clinical Research Network on Infectious Diseases other than HIV....it should address high priority research areas that are opportunities not presently addressed by NIAID’s infectious diseases clinical research portfolio and that would be accelerated by a multi-site clinical trials network. Currently, NIAID supports a wide variety of infectious diseases clinical research activities in areas other than HIV." These activities are described on the NIAID website at the following link:
http://www.niaid.nih.gov/about/organization/dmid/clinical/   ;
a more detailed listing is available by request from DMID
(send email request to: NIAIDClinicalRFI@niaid.nih.gov )
Let's make the PROVE that they "support research in areas other than HIV and make them GET BUSY."

Topics they would like you to cover:
~high-priority research areas (e.g., pathogen, disease, syndrome) and rationale for their high priority
~examples of potential studies and intended populations within the research areas proposed.
Please mark responses with the above RFI identifier (NOT-AI-11-029) noted in the subject line.
Responses will be accepted through April 4, 2011. Please limit each response to two pages. " (3)
*******
30 min talk by Dr. Eric Klein, & Robert Silverman MD. ~ Please watch and Listen (5)
*Eric Klein's speech in front of the president and secretary of state, regarding XMRV and prostate cancer. From Feb/March 2011, but a very compelling video, with many juicy quotes that can be used.
Snip-its from the above~
MORE XMRV evidence: "Only the 3rd Authentic retrovirus to cause infections in Humans." endQuote !!
"Viruses cause Cancers and Neurodegenative Diseases."
"XMRV= It turns ON a cellular oncogene" to cause Cancers !
"It is a Genuine INfectious Agent"
"XMRV CAN be transmitted by blood or transfusions"
"The research can not YET prove that XMRV causes cancers, but the Research CERTAINLY Points to that direction."
**********************
WHY are ME/CFS and XMRV still so Under Funded ?
According to the National Institutes of Health, ME/CFS is down for $5-million in 2011, and FMS is getting $12-million. Compare that to multiple sclerosis (MS) -- $144-million. Even Tourette syndrome research is better funded than ME/CFS. (4)

I would like to suggest that EVERYONE start composing their letters for their CFSAC Testimony NOW including a HUGE section about the CDC and their history of not only the insulting naming of our illness which is NOT accurate, in which they have over the years continually changed it to fit their whims without even giving due consideration to the REAL symptoms of our illness but simply broadening it to include simple depression which the chronically ill have, but is MOST DEFINITELY "NOT" a Cause of our illness and is not the MAIN VALID symptom of it either.... and was NOT there as a symptom when the illness started. Additionally, besides the current on-going scientific and court validated P.E.M. research that has been taking place at the Pacific Fatigue Lab, which is part of the University of the Pacific in Stockton, California, and whose own Chris Snell, PhD. is the current Chair of the CFSAC, we NOW have an additional study that has come to this conclusion. This MUST be acknowledged and recognized.

"The experiments reported here show that 25 minutes of moderate exercise generates large and rapid increases in gene expression in leukocytes of CFS patients but not in control subjects. Increases in mRNA were found for genes that can detect increases in muscle produced metabolites (ASIC3, P2X4, P2X5), genes that are essential for SNS processes (adrenergic α-2A, β-1, and β-2, as well as COMT), and immune function genes (IL10, and TLR4). These findings confirm previous hypotheses suggesting that alterations in all parts of the HPA axis may mediate and sustain the symptoms of CFS and FMS. These gene alterations suggest a potential role for alterations of peripheral sensory signaling in the symptoms of CFS, as has been proposed for FMS. They also suggest that a blood test could be devised as an objective biomarker for sensory muscle fatigue and muscle pain in CFS." (Complete link below) (6)

The CDC has NO Factual Legitimate REASON for excluding P.E.M. as one of the Hallmark Symptoms for CFS ANYMORE and according to this latest study also includes FMS. It is TIME for them to hereby QUIT their FALSE psychobabble because here are NOW Legit studies that this HAS testable legit biomedical markers and this pain and P.E.M. is indeed NOT "all in our heads" BUT in theirs, and furthermore GET will NOT help eliminate any of these symptoms, so get them OFF the dang website and suggested treatments because they will actually are hereby PROVEN to actually HARM US. And CBT is absolutely different than regular pain counseling or counseling to deal with ANY chronic illness that could leave ANYONE with a chronic illness depressed, but OUR ILLNESS is NOT Depression. If anything has caused ANY of us to be Doctors and Governmental Agencies that have taken our taxes for the many years we did work. They KNOW the new UK PACE Trial results are as our UK friends would say is a "bunch of bullocks." Those of us after many years already have cardiomyopathy from the dyastolic dysfunction that has resulted in OI/POTS and Hello ~ that is HEART DAMAGE and Exercise and Lack of oxygen to our brain and heat WILL KILL US ~ PERIOD.

I request that EVERYONE start making A LIST of companies that are advertising in ANY Online medical article in any publication ANYWHERE in the World that mis-speaks the TRUTH about our illness, will NOT correct the mis-naming of our illness, eg. like that ABC.go, the many UK articles, etc.. This MUST STOP, and their Advertisers MUST know that we will Boycott their product if they do NOT make the Publications they advertise in publish CORRECT Information. Editors are suppose to screen the info BEFORE these things are Published. Period. Let's gather the info: name of publication, date, incorrect info, make a screenshot of it, note the advertisers, and send them to me. We will in the meantime form a committee of folks that are good at letter writing and we can then start Petitions to these advertisers/publications with our request for their INFO to be retracted and corrected or we WILL Boycott their products and blog Around the world about not only the publication but also the advertisers that pays this publication. Most of these companies are Worldwide now so we can maybe have letter writers to create and speak to the specifics in each country so we have our facts CORRECT, but the campaign and boycott will be worldwide, OK ? Ideas to clarify this "Mis-Information Campaign" and it's strategies are also VERY Welcomed and desired.

We have just had a week of some great inspiring articles published that should give you all plenty of enthusiasm to help 'kick start' your letters and get your juices flowing.. Please USE that Positive Energy to start working on some of these ideas and gathering information and making notes for writing your letters not only to the NIAID, but for the soon needed CFSAC letters, OK ?I only mention this so we can start now getting organized and start planning our next CFSAC campaign which IMHO should be the CDC, since the CFSAC members want to target them this next meeting anyway. I know I need to start my testimony now, cuz after the SEP results and the NIH results, I will be so exhausted I will not be able to compose a cogent pointed argument for my CFSAC public comment.

Amy Dockser Marcus WSJ article
                                                                  http://online.wsj.com/article/SB10001424052748704005404576176823580854478.html

Leonard Jason's WSJ article
                                                                                                                                                    http://online.wsj.com/article/SB10001424052748704507404576179031979295592.html

David Tuller's NYT's article
                                                                                                                                                  http://www.nytimes.com/2011/03/08/health/research/08fatigue.html

I hope you also WATCHED the video about Dr Bell's, Lyndonville kids, that 70% of which have already tested Positive 25 years later now XMRV+. Please WATCH this basically 4th study that validates the Original Science findings..

The video may disappear in the next day or two so Please watch NOW> OK?

AND get everyone you know that has NOT YET seen it to watch, Family AND Friends, OK ?
http://online.wsj.com/video/rural-ny-town-becomes-chronic-fatigue-laboratory/D80B17A7-B6C5-4B33-8356-F92C8751A93F.html

CFS + Lyme : "spinal fluid"
http://blogs.wsj.com/health/2011/02/23/a-step-closer-to-tests-for-chronic-fatigue-syndrome-and-lyme-disease/

Hemispherx Biopharma Announces 9th Clinical Investigators Conference: Ampligen Clinical Trials Highlighted

Conference Explores Potential Relationships Between Chronic Fatigue Syndrome (CFS) and a Novel Retrovirus

article link in full below (7)

*******************

We are also gearing up for all of our Annual May 12th International Awareness Day Campaigns that will include MANY different activities on all levels, something for everyone from Tweeters, letter writers, on location demonstrators in the USA and UK capitols and others around the World. Please gather ALL of the ideas you can make note of from the Forums and Facebook and email them to me so I can post about them and you can then know about everything that everyone else is hearing about, OK ? We want this one to be a BIG YEAR and we want them to HEAR Our OUTSIDE VOICES...

Send your emails to <mecfs may awareness month at gmail.com> OK ?

I will gather them and keep you informed of everything I receive, OK ?

We EACH will have our own little part to do "to pull off" this HUGE May 12th Awareness World wide EVENT, so let's Agree to AGREE to Help INFORM each other, OK ? I will NOT "Judge" the Pros or Cons of any planned Action.. I will simply report them to you and you can choose which one/ones you want to participate in, OK ?

I would like to apologize for not blogging as much recently, but I have been reCouping from a really BAD Crash that also Flared EVERYTHING and it has taken me longer than usual to slowly regain some strength and any stamina. Sometimes trying to stay "on top" of everything ~ we that are 24+ yr XMRV+ ones tend to pay the price when we over-do our enthusiasm even when it is only from bed on a laptop.

Hope that you will ALL in the USA, except AZ +HI, remember to change you clocks this Sat. nite as Daylight Savings starts this weekend. Color me HAPPY. Maybe we can get outside and even just sit in the sun for 15 minutes a day and get some "natural" Vit. D that we all need SO much... Meanwhile, Please take care of yourselves and make notes when ever you feel a little moment of clear-headed Inspiration, OK ?

Happy Thought for the day: At least I don't have to fill my bed tank with gas/petrol at these prices~

♥Hugs♥ and love + kindness to you all...
whether you are still buried in snow, helping your neighbors after a flood, fire, earthquake or volcano, we send you love and Positive thoughts everywhere ♥

PS: Thought for the week~

"Brave are simply those with the clearest vision before them and not withstanding the obstacles go FORWARD in the direct of their goal."

********************************************************************************************
(1) "Why Movements Fail"
http://womenwhodancewithfrogs.com/2011/03/05/why-movements-fail/

(2) Mary Schweitzer's Blog~"Slightly Alive" re: Civil Rights from Today ~ Please READ:
http://slightlyalive.blogspot.com/2011/02/civil-rights.html

(3) NIAID Announcement Please READ:
http://grants.nih.gov/grants/guide/notice-files/NOT-AI-11-029.html

(6) "Moderate exercise increases expression for sensory, adrenergic and immune genes in chronic fatigue syndrome patients, but not in normal subjects"
http://www.ncbi.nlm.nih.gov/sites/ppmc/articles/PMC2757484/

(4) Underfunding of Fibromyalgia & Chronic Fatigue Syndrome Research
http://chronicfatigue.about.com/b/2011/02/09/underfunding-of-fibromyalgia-chronic-fatigue-syndrome-research.htm?nl=1

(5) Dr. Klein's talk ~ Enjoy !
http://webcasts.prous.com/webcast_viewer/preview.aspx?enc=q1jaeoTahUQpJdbzgTeEs8xcC6zOxanITToOP4sn+Gq2PkGuHyMqxHqtCAyjU/yO30ZRmDV/fspBfPMn3C0veXmtp3aYSa+82YiVh/Zzgxce7O0caInZp8x1BlrXwMxu1qwE1eVOlUxVQXZXkecU7SwqWKNo49bPkQ60C1rTMvQ=

(7) Hemispherx Biopharma Announces 9th Clinical Investigators Conference
http://www.globenewswire.com/newsroom/news.html?d=215608

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#105 ~ The Transforming Faces of the CAA

noreply@blogger.com (ME_CFS_unite) — Thu, 03 Mar 2011 07:39:00 +0000

The Transforming Faces of the CFIDS Association of America

Posted on March 1, 2011

Guest blog: RePosted with Permission of the Author :
by John Herd

In the early years of the CFIDS Association of America (CAA) the organization was a dynamic organization, doing its best to represent and help patients.

As Kim McCleary became more entrenched in the CAA, taking over increasingly more control of it, their [her] advocacy still began to change. Instead of acting as a diplomatic advocate trying to make advocacy headway with government officials and agencies, her actions and statement about health department activities and/or lack there of were becoming increasingly anemic.

Effective diplomacy is one thing, but increasingly respected advocates and informed patients were talking about McCleary being “in bed with the health department.”

At the same time it was becoming increasingly evident that (A) McCleary was not willing to work collaboratively with other CFS organizations or advocates, (B) that the CAA was no longer interested in providing any kind of services to aid or assist patients, and (C) that the CAA’s actions were all about what was economically best for the CAA, in McCleary’s mind.

McCleary was consolidating her power within the CAA and in the governmental CFS arena. She made a point of selecting various CAA board members who would accept her views about matters and back her up. So too was she making sure she had an inside track to health department committees and officials while doing nothing to assist other advocates, activists or patient organizations with advocacy initiatives. She was not what one would call a team player, unless of course the team one is referring to is the health department.

A high level health department official when speaking to a group about a CFS advocacy said, “When (_____) speaks (this person) speaks for the patients; when Kim speaks she speaks for her organization.” That clearly defines what McClearly has been about.

Due to personal matters the founder of the CAA, Marc Iverson, had less of a hand in running the organization. Additionally, McCleary had consolidated so much power on the organization’s board that Marc found he had diminished influence upon getting the organization back on track. Marc had his ideas about CFS advocacy and helping patients, McCleary had hers, and the differences were vast.

I can not reveal the details because they were shared in confidence, but the internal wrangling within the CAA got very ugly. Marc eventually composed a resignation letter and left the organization.

In 2004 Jon Sterling, who had become the CAA’s Chairman of the Board and several other people resigned for similar reasons. What lead up to that event seemed like a tactical carbon copy of the playbook used against Marc Iverson. Again the conflicts came down to doing what would most effectively be representing and acting on behalf of the CFS community or following McCleary’s strategies for building CAA’s sphere of influence with the health department.

McCleary’s style of impotent advocacy was taking a profoundly negative toll on the organization’s membership roster and donations to the organization. The organization’s excuse for declining membership was that much of the information it had once furnished was now available on the Internet. That excuse was nonsense; people did not feel the organization was adequately representing them.

The CAA had never made enough money from membership funds to run the organization, and clearly not enough to fund the large salary McCleary wanted for herself. She desperately needed a revenue stream and the answer was health department contracts.

For those of us in the CFS advocacy trenches that immediately reeked of conflict of interest and we said so. Given the CAA’s economic dependence on those contracts the CAA was not about to bite the hand that fed them. The messages coming from the CAA increasingly sounded as if the health department had written them. The CAA had become the CDC’s puppet.

When it became clear to McCleary that the CDC contracts were ending she needed to find a new revenue stream. Since the contracts were ending anyway she made the tactical decision to distance herself and the CAA from CDC with a series of critical statements about the CDC. Such distancing was important for her next metamorphic transformation of the CAA, that of becoming an administrative medical research network.

The CAA brought on board Suzanne Vernon from the CDC to act as their Scientific Director.

Having read the CAA’s “Research Grants Program, Request for Applications” http://www.cfids.org/profresources/2008rfa.pdf and the CAA’s “Research Grants: Guidelines, Guidelines for Conducting CFS Research Studies” http://www.cfids.org/profresources/grants-guidelines.asp it was evident that McCleary and Vernon were trying to make the CAA an administrative medical research network.

Cort Johnson, the most outspoken, ardent supporter of the CAA immediately was highly critical of me when I publicly pointed this out. He said there was no evidence to support my analysis of what the CAA was doing.

When one CFS advocate not long ago referred to the CAA as being an advocacy organization to an NIH official, she reportedly was immediately corrected by the official that the CAA is not an advocacy organization, they are a research organization. The official most likely would not have stated that if that were not the way the CAA were portraying themselves.

It would not surprise me at all to see the CAA eventually applying for government funding directly, and if need be changing their incorporation type in order to do so.

So here we are today. The CAA was not only luke warm at best about the Whittemore Peterson Institute’s (WPI) XMRV findings, they have reportedly been very aggressively speaking and acting behind the scenes to blackball WPI from meetings, government committees and grant funding. The only logical conclusion one can draw from this is that the CAA views WPI as a research competitor. For this advocate, I have far more faith in the WPI and the medical network they have been forming than in the CAA and whatever directions they wish to steer CFS research.

I do not feel the CAA is adequately representing the bests interests of the CFS community as an advocacy organization or a research organization. The vast majority of those I speak to do not want the CAA to convey that that they are representing us when they are not doing so. While a small number of people have been critical of our speaking out about this, claiming we need the CAA because they are the only national organization, my position is that having no organization is better than one that is doing harm. If the CAA went under that may clear the way for patients to get behind creating the kind of advocacy organization we need and getting the kind of support and funding the WPI needs.

© John Herd, ’11
johnherd@johnherd.com
Original Article

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#104~ PROTEST: McClure in USA- CFS "NIH" SEP

noreply@blogger.com (ME_CFS_unite) — Fri, 04 Feb 2011 14:30:00 +0000

♥ URGENT PARTICIPATION REQUESTED ASAP ~ Please ♥

Please feel free to copy and paste this letter or any part of it to send to anyone you want.

Everyone~
Please send this letter below to Kathleen Sebelius, Francis Collins, Dennis Mangan, Dr. Anthony Scarpa ( CSR Director),

If you are in the USA then ~
also send it to your two US Senators from your state and your Congressional Representative.

You can see discussion of this issue here: http://www.mecfsforums.com/index.php/topic,5276.0.html

**************************************************

Letter:

Myra McClure, Ph.D. has been appointed to membership on the Center for Scientific Review, Special Emphasis Panel, ZRG1 CFSH80 2/22/2011-2/23/2011 meeting.

I protest this appointment for the following reasons:

1) Dr. McClure is not a United States Citizen. Why should a United Kingdom resident be deciding which applicants receive research grants in the United States? In addition to questions of legality which arise from this, there are further questions of expense, since Dr. McClure's travel expenses will, of necessity, be higher than those of a United States resident.

2) Dr. McClure has publicly stated that she has no interest in research in the area of Chronic Fatigue Syndrome.
    “Nothing on God’s Earth could persuade me to do more research on CFS.”

Source is this article http://www.sciencemag.org/content/329/5987/18.summary
3) Dr. McClure has publicly stated that she is biased as to study of the XMRV retrovirus, which is an
"active area of research in the area of Chronic Fatigue Syndrome."

    "Professor McClure was a co-author of the paper published in Plos One in January 2010 titled, “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” As the paper’s name suggests, this study found no evidence of XMRV or MLV in CFS patients or controls. This study can be found here: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0008519
                                                                                                                                                                                                                           Professor McClure has publicly stated on many occasions that there is a high possibility that "the XMRV/MLV related virus findings being implicated in CFS are a consequence of contamination."

See http://livingwithchronicfatiguesyndrome.wordpress.com/2010/09/27/conversing-with-professor-myra-mcclure-about-xmrv-and-contamination/

She fits NONE of the Requirements shown in the NIH site: "Fairness and objectivity"...is the most important criteria, which we all know she does not have.

SEE:

http://cms.csr.nih.gov/PeerReviewMeetings/StudySectionReviewers/HowScientistsareSelected+orStudySectionService.htm

I ask that Dr. McClure be removed from this committee and that a qualified retrovirologist who is a resident of the United States be appointed instead.

Cordially,

*****************************************************
Wanda Jones' name has been removed from this list because she has replied to an email saying her position at the Office of the HHS Secretary has nothing to do with the SEP Committee.

kathleen.sebelius@hhs.gov

francis.collins@nih.gov

dennis.mangan@nih.gov

toni.scarpa@nih.gov

hoshawb@csr.nih.gov

Let's send HER a copy also just for grins ;-) m.mcclure@imperial.ac.uk

...
http://www.whitehouse.gov/contact/

President Obama's Science Advisor, John Holdren, at AskDrH@ostp.gov

Find your congressperson https://writerep.house.gov/writerep/welcome.shtml

Find your senator http://www.senate.gov/ (search in top right corner)

*********************************************

♥ Thank You EVERYONE for helping us keep Quality People in this Important SEP, and

Thank YOU for helping us in the URGENT APPEAL at this time.

Please share this notice with anyone you feel needs to know this info

and would be inclined to help us. ♥

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#103~ XMRV-Bloggerama Report

noreply@blogger.com (ME_CFS_unite) — Sun, 30 Jan 2011 17:30:00 +0000

Howdy all ~

Sorry for my delayed response.. I have been in the middle of a BAD FLARE for the last 2 weeks, all viruses flaring and unable to hardly do anything except sleep and barely get my food to eat in between 15-18 hour blurs... losing track of what day it is let alone what time of day.

The other day since it has been dark during the daytime recently, I also most gave Thanks thinking I was waking up during the day and was about to call a friend so I could actually HEAR a Human Voice~ TV and radio do NOT count...as there is no REAL PERSONAL INTERACTION THERE~
Only to find out that it was NOT 10 after 8 in the evening.. but *Sigh* it was actually 20 minutes before 2am~ Oh well.. there went another day...

My internet connection is SO slow that I can barely do anything while I am awake.. and doing this blog will use up my ENTIRE TIME of being awake tonight..
Never the less, I give Thanks that I HAVE an internet connection as slow as it is..
(while I write the Egyptians have had their internet connect CUT-OFF)
Life and our attachments to physical things is SO Ephemeral..
Please Be Appreciative for what you DO Have and acknowledge the difference between what we NEED and what we like,
and what is Necessary for Life and what is an added blessing..

Honestly, it is rather bizarre living in the Center of a HUGE City, yet feeling and existing,
like I am living the life of a hermit in the mountains.. as only getting new food ONCE
every 3 months makes it feel like that.. and makes getting anything FRESH a Real Treat and Rare.. Life goes on outside of my existence...
I hear about it on the news and from the occasional friend that does call..

When conscious, I do try to be an advocate for those with my illnesses, but all the while.. knowing I do NOT have the family, or money or medical coverage or back up system, let alone energy to allow me to take advantage of any of the new clinical trials that may be coming out soon...that might be able to stop this illness in its tracts..

ALERT: Our society and health delivery system "Does NOT Deliver"....
They would rather HIDE the fact of our existence, drop us OFF the unemployment rolls so we are NOT counted. The Health CARE System does NOT Care about YOUR Health. NOTHING has changed since Pres. Obama's mother was dying and fighting the insurance companies on the phone on her death-bed. Today we have not only been ignored, but the HEAD Governmental Agency of numerous countries is denying that our illness EXISTS.

Science is about ready to catch up with the Truth, but the "Flat-Earthers" are STILL in DENIAL of the existence of the 3rd Human Retrovirus and the part it plays undermining our immune systems allowing us to be assaulted by many other Diseases and cancers attacking not only us, but also our descendants..
"It IS Showing UP" Not only in our Medical Records but also in our DNA.

I am NOT a retrovirologist, but I did work in a hospital for 17 years and have studied enough medical modalities and been a student of Life, Long Enough to know that this bugger is REAL and MILLIONS *ARE* being infected and GENERATIONS ARE/WILL BE INFECTED and EFFECTED.

The Greedy are INDEED killing us and

until one of THEM is infected NOTHING will be taken Seriously~ Period.

UNTIL somone IN Power *gets it* and I do

NOT mean Simply understanding it... will Anything Be DONE.

The media has been told "Hands-OFF," and

you Wonder WHY the sick MUST Blog ???

I am about to make my Last Will and Testament and will be donating the sum of what little I have left to the Whittemore Peterson Institute so they can continue their SERIOUS Research into the Cause and Treatment of this Disease and the Millions it is Effecting ALL over the World. Bless the Whittemores, Dr. Peterson, and Dr Judy Mikovits and ALL who Help them. Please do NOT forget Dr Cheney and others who have who have also donated their LIVES to Helping us and continuing their Research. Bless those who donate to continue the research by those who are doing this MOST IMPORTANT work. Bless the ONLY REAL Investigative Reporter, from the Wall Street Journal Health Blog, to date, that has the Integrity to cover the TRUTH of this PANDEMIC, Amy Dockser-Marcus, for she knows what it is like to be the victim of a ignored disease.

It has taken my computer over an hour already just to write this amount down...
I am tired and weak and must eat something NOW before I sleep my next 15 hours....

Thank You ~CDC and NHS~ for the MANY DEATHS that YES~ WILL BE as a Direct Result of YOUR Negligence over the last 25 years.. Yes, many others have been complicit with you, BUT had YOU had ANY INTEGRITY at all... you Literally Could HAVE changed the course of History, but you chose NOT TO DO SO...

At this point, I personally blame Dr. Reeves, Dr. Strauss, and Dr. Fauci in the USA, and Dr. Wessely and ALL of his collaborators in the UK for undermining any REAL Research that was being done.. The Lightening Process is just another form of CBT that does NOT cure ANY Retrovirus ~ PERIOD.

For those still living~ PLEASE STOP arguing about the fricken NAME and SUPPORT the REAL Work of RESEARCH about the Disease and finding a CURE or a Way to HALT it's Progress...

The DEAD do NOT care by what name you call their illness... Those holding up the Real Research do NOT care HOW Many things we Test Positive for.. NOR how many are sick or how many lives/families are being DESTROYED, ~ NOR how much $ this is costing ANY of OUR ECONOMIES Worldwide...

For just ONE of my illnesses, ME/CFS, the economic cost to the USA is $20 Billion a year, yet there is less than $10 million a year spent in Research for this illness...

I will leave you now with just a few of the blogs written for this year's~

XMRV Bloggerama. If you know of any that I missed, please add them in the comments section, OK, and I will add them to my list and to the bloggers list. Thank You.

I DO have links for most of these bloggers in the column on the Right-side of this blog. Please NOTE, that these bloggers are from AROUND the world and come from ALL walks (beds) of Life...

Participating Blogs:

Many of these are novice bloggers, some are veterans and others are written by partners of sufferers. Everyone of these writers needs to be congratulated for using up what precious energy they have to help raise awareness for you and me. (per XMRV Bloggerama Organizer)

~The Relationship of XMRV to CFS and M.E.
http://slightlyalive.blogspot.com/2011/01/relationship-of-xmrv-to-cfs-and-me.html

~They Will Hear Our Whisper

http://x-tremedenial.blogspot.com/2011/01/will-they-hear-our-whisper.html

~XMRV-It's All Just Coincidence

http://xmrv-bloggerama-day.blogspot.com/2011/01/its-all-just-coincidence.html

~Treating XMRV

http://treatingxmrv.blogspot.com/2011/01/back-to-work.html

~The XMRV Hunt and Me
http://itsonlymeitsnotmymind.blogspot.com/2011/01/xmrv-hunt-and-me.html

~XMRV: Frequently asked questions
http://cinderbridge.blogspot.com/2011/01/xmrv-frequently-asked-questions.html

~Wazzup XMRV!
http://www.pugilator.com/awareness/wazzup-xmrv/

~XMRV: Why Biased Reporting Belongs on the Slush Pile
http://dancingwiththesandman.blogspot.com/2011/01/xmrv-why-biased-reporting-belongs-on.html#more

~Questions +Answers: Alphabet Soup
http://nopostergirl.com/2011/01/22/questions-answers-alphabet-soup/

~ME/CFS XMRV Bloggerama day
http://www.johnallsopp.co.uk/blogViewer.php?blog=1988

~WE HAVEN'T HEARD THE LAST OF XMRV-ME/CFS-LYME DISEASE
http://lookingatlyme.blogspot.com/2011/01/we-havent-heard-last-of-xmrv-mecfs-lyme.html

~XMRV, brought light/hope to CFS/ME Patients!
http://1lito.blogspot.com/2011/01/xmrv-brought-lighthope-to-cfsme.html

~The Story of My CFIDS
http://wecanstillblog.blogspot.com/2011/01/story-of-my-cfids.html

~Conscientization
http://glamsticks.wordpress.com/2011/01/20/conscientization/

~ME/CFS XMRV Bloggerama day
http://www.johnallsopp.co.uk/blogViewer.php?blog=1988

~The Relationship of XMRV to CFS and M.E.
http://slightlyalive.blogspot.com/2011/01/relationship-of-xmrv-to-cfs-and-me.html

~WE HAVEN'T HEARD THE LAST OF XMRV-ME/CFS-LYME DISEASE
http://lookingatlyme.blogspot.com/2011/01/we-havent-heard-last-of-xmrv-mecfs-lyme.html

~XMRV, brought light/hope to CFS/ME Patients!
http://1lito.blogspot.com/2011/01/xmrv-brought-lighthope-to-cfsme.html

~XMRV and Hope
http://frommetoxmrv.blogspot.com/2011/01/xmrv-and-hope.html

~XMRV - Do You Have It?
http://2hope4acure.blogspot.com/2011/01/xmrv-do-you-have-it.html

~XMRV linked to ME/CFS
http://givenmeathorn.blogspot.com/2011/01/xmrv-linked-to-mecfs.html

~XMRV Bloggerama Day
http://xmrvandme.wordpress.com/2011/01/18/xmrvbloggerama/

~XMRV in ME/CFS: New Facts and Findings
http://livewithcfs.blogspot.com/2011/01/xmrv-in-mecfs-new-facts-and-findings.html

~XMRV and M.E./C.F.S.: summary and links
http://nighearain.wordpress.com/2011/01/20/xmrv-and-m-e/

~XMRV and Hope
http://frommetoxmrv.blogspot.com/2011/01/xmrv-and-hope.html

~XMRV - Do You Have It?
http://2hope4acure.blogspot.com/2011/01/xmrv-do-you-have-it.html

~XMRV linked to ME/CFS
http://givenmeathorn.blogspot.com/2011/01/xmrv-linked-to-mecfs.html

~XMRV Bloggerama Day
http://xmrvandme.wordpress.com/2011/01/18/xmrvbloggerama/

~Learning to Live With CFS: XMRV in ME/CFS: New Facts and Findings
http://livewithcfs.blogspot.com/2011/01/xmrv-in-mecfs-new-facts-and-findings.html

~Whittemore Peterson Institute Leads ME/CFS Research
http://mecfsfromme.blogspot.com/

~XMRV – British Science Never Looked So Poor....
http://www.cfstheresistance.com/british-science-never-looked-so-poor.php

~XMRV in ME/CFS: New Facts and Findings
http://livewithcfs.blogspot.com/2011/01/xmrv-in-mecfs-new-facts-and-findings.html

~XMRV and M.E./C.F.S.: summary and links
http://nighearain.wordpress.com/2011/01/20/xmrv-and-m-e/

~ME/CFS has MS and AIDS-like Clinical

http://lookingatlyme.blogspot.com/2011/01/mecfs-has-ms-and-aids-like-clinical.html

~Living With Chronic Fatigue Syndrome:

http://livingwithchronicfatiguesyndrome.wordpress.com/2011/01/29/reflective-travails/

~CFS: Patient Advocate

http://cfspatientadvocate.blogspot.com/2011/01/invest-in-me.html

~CFS Central:
http://www.cfscentral.com/2011/01/go-ahead-make-my-day.html

~CFS'nGay:

http://cfsngay.blogspot.com/2011/01/art-4-xmrv.html

~CFS Chronicles:

http://cfschronicles.blogspot.com/

some related articles of Interest:

~Even Before XMRV (10/2009) *the WHY* of the CDC obfuscation was Obvious:

http://www.oslersweb.com/work4.htm

~Nice Guidelines Blog:

http://niceguidelines.blogspot.com/2011/01/must-read-if-you-are-xmrv-positive.html

~Crystal structure of XMRV protease differs from the structures of other retropepsins:

http://www.nature.com/nsmb/journal/vaop/ncurrent/full/nsmb.1964.html#additional-information

*********************************************
Please BLAME *ANY ERRORS* in the blog on ALL of my Viruses and Retroviruses that are Currently Flaring... They Thank you...
******************************

If you missed your chance to blog for XMRV Have NO Fear~ You CAN still participate :-)
ON the participating blogs above - "if you would visit each one in turn and leave a comment, this will help raise the blog's profile on *Google,* which in turn will increase its public visibility."

"There is also another way you can help. By entering Google http://www.google.com/ and typing XMRV in the search window you will be presented with the top ranking XMRV articles. Find the ones that have published positive and accurate information and leave a comment. In future, you might want to consider not leaving a comment when you read a negative 'blog' article. Visiting and commenting on some of the obvious attention-seeking blogs (ie. those that bate sufferers with a view to increasing hits), only raises their profile, which we want to avoid. Commenting on online news media sites is a good thing, especially if the information they provide is inaccurate. It's is a good opportunity to put the record straight and your comment is likely to be read by a larger audience."
~per: http://dancingwiththesandman.blogspot.com/2011/01/xmrv-bloggerama-how-can-you-help.html

It has been 7 hours so far just creating this much~ non-stop,
except for computer interruptions.. NOT on my part.
I have NOT eaten YET and am exhausted now..
How are we to survive ???

PLEASE Show your Support for ALL of the Many Hours that these bloggers have put into their blogs and Follow them as a way of showing Thanx ~ KNOWING that at least someone is reading your blog makes it feel worth all of the energy and effort it took to write it.

A reminder of decades past~ that are still with us sadly...

"If they looked at AIDS the way they looked at us, they would have said, well, pneumocystic pneumonia doesn't matter, because everybody doesn't have it, and it doesn't cause AIDS. And Kaposi's Sarcoma doesn't matter, because everybody doesn't have it, and it doesn't cause AIDS. That's the way they treat all of the biomarkers and diseases we have."--Mary Schweitzer.

Mary Schweitzer has been elected by the USA patients as one of 2 of their *patient-reps* on the NIH Steering Committee for the upcoming State of Knowledge Conference for ME/CFS in April, 2011.

In 1980's thru the 1990's HIV has been argued as a "smoking gun."
So we are facing what HIV/HTLV-III patients went threw in 1980-mid 1990's
It is well documented in "And the Band Played on"~ and guess what....

THE BAND IS STILL PLAYING ... and sadly it is playing a dirge to the deaf.

Please NOTE that sadly our illness surpassed the numbers in this movie LONG AGO~

We are about to have *Another Workshop/Conference*

Do you REALLY think that any Progress will be made ?

Banning ME/CFS patients from Donating blood will NOT stop XMRV from being IN the Public Blood Supply.. NOT when there is ALREADY in the USA alone... an estimated 10-20 million asymptomatic XMRV carriers are CURRENTLY spreading it and donating blood.

And that is ONLY from ONE of the illnesses that seem to be linked to this retrovirus. There are many other illnesses also linked and so far all of those with Lyme disease tested have shown Positive results for XMRV+

Currently there has been shown a link to not only ME/CFS, but also and aggressive form of Prostate Cancer, Autism, Lymphoma, Lyme Disease, Atypical MS, GWI, and even Breast Cancer.

~Support the WPI Research NOW.

~Demand that your Government also support Valid XMRV research and treatment NOW.

-Want to Support Your Troops ?
~DEMAND that your Gov't CLEAN/screen the public blood supply NOW.
-WHO do you think has been getting a LOT of the transfusions lately ?

Our blogs will remain LONG after WE are GONE~

Are we crying in the dark ?

Is anyone listening ??

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#102~ NOW is the Time to HELP the UK ♥

noreply@blogger.com (ME_CFS_unite) — Tue, 11 Jan 2011 18:53:00 +0000

UK~ Dept of Health Protest White Paper Consultation

Join us in this UK protest to the "NHS choices White Paper Consultation"
which closes Jan 14th, 2011.

On the heels of the UK + London Blood Ban, they know ask us to help them by quickly sending some emails. Please do so ♥

Many of our ME/CFS friends in the UK could REALLY use our Help Right NOW.

If you in the UK, you may write in as a patient.

If not, you may write in as a

Patient Representative/Advocate.

After you read this the white paper linked
within this post and written by our friends in the UK that need our Help desperately I have NO doubt that you will be Easily Able and Willing to quickly use their "Sample Letter" to create your own and send it off to the UK to HELP or Fellow Friends that NEED our Help at this IMPORTANT TIME. We ask them for help when we have campaigns, so IMHO, this is one easy way we can help rePay them and help them at the same time. Thank You in Advance for caring about the rest of your ME/CFS Family in the UK.

Your HELP is MUCH Appreciated !!!

♥ Thanks much for helping them so we can actually BE UNITED in our Health CHOICES Around this World regarding HOW those of us that have been abused and mistreated and ignored for DECADES, NOW work HARD to Speak OUR Voices. ♥

Please REPOST Far and Wide!

HOW to take part and HELP.

- Full instructions are in the links BELOW including "a sample cover letter"

NOW IS THE TIME - to say IN THE UK
what choices you want for treatment of ME. (please HELP Them)

The NHS are asking us what choices we want in our health care choices
(Just as in the USA we are participating with the NIH State of Knowledge)

on StoneBird http://www.stonebird.co.uk/

Dr Speedy's Nice Guidelines Blogspot
http://niceguidelines.blogspot.com/2011/01/myalgic-encephalomyelitis-white-paper.html

****************************************
This reply to the White Paper has been written by patients for patients
and is suitable for all levels of severity.

The discrimination and inequality in the current system is unacceptable
and a breach of our rights. We call for an end to this
discrimination, and our right to be involved in the
planning of our health care services to be honored
and the patient`s voice BE HEARD loud and clear.

We hope we have stated the views, concerns and
bio-medical needs and choices we want,
not only in diagnosis,
but also in treatment and social care.

We as patients feel that the Lightening Process (LP) ,
Cognitive Behaviour Therapy (CBT)
and Graded Exercise Therapy (GET)
ARE no LEGIMATE choice at all.
We want equal access to appropriate specialists such
as neurologists cardiologists, immunologists and a
fair diagnosis using the Canadian Guidelines, with correct testing and treatment.

This is the choice WE WANT,
not harmful CBT and GET which our shown by patient surveys
to worsen our conditions.
We condemn the Wessely school and their vested interests,
and dominance in the NICE guidelines as an
unfair representation
of the facts which leads to discrimination which is why they
have been declared unfit for purpose.

The needs of the severely ill are neglected, with no home service
often the most in need get the least service. because their
disability does not allow them to access services.

We call for "equal access for the 25% of patients
who are severely ill bed and house bound who have no access
to choice for ME treatment or any other health care needs."

Correct services need to be provide via
home visits
from all specialists involved in care.
Otherwise, the severely effected will continue to suffer discrimination
in accessing appropriate bio-medical treatments.
**************************************
Let your voice be heard loud and clear, the more who reply the stronger the message is for ALL of US all over the World !!!!

Now published ready for downloading and sending with full instructions in pdf

on StoneBird http://www.stonebird.co.uk/

and also on Dr Speedy's Nice Guidelines Blogspot

http://niceguidelines.blogspot.com/2011/01/myalgic-encephalomyelitis-white-paper.html

*********************
By snail mail to :
Choice Team, 11th floor, New King’s Beam House,

22 Upper Ground,

London SE1 9BW.

Below is a sample for your email or letter...
Let them know if you have made additions,
use BOLD so they can find them easily.

************************************
Dear Sir/Madam

I submit the following document for inclusion in the white paper consultation,
I have submitted research links in the document which support this
submission and ask you not to reach any decision regarding provision of choice for ME patients without fully exploring this evidence.

Yours sincerely,
Your Name
**********************************************
Please Repost Far and Wide

Thank You~
"ME Choices Team" from the UK.

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#101~ Letter from Annette Whittemore, WPI

noreply@blogger.com (ME_CFS_unite) — Wed, 05 Jan 2011 10:49:00 +0000

Turning Today’s Discoveries Into Tomorrow’s Cures

January 1, 2011

XMRV: A Human Retrovirus with Unknown Pathogenic Potential, Not a Lab Contaminant

The recent proclamation that “XMRV is not the cause of CFS,” came from an individual who did laboratory experiments to show how PCR experiments can become contaminated. These results have nothing to do with the reality of a disease or the methods used by those who have detected XMRV in the blood and tissue of patients found to be infected. The positive studies, which cannot be explained away by PCR experiments, are those which have used multiple methods to show that XMRV is a live replicating gamma retrovirus in human blood and tissue samples using the gold standard methods of viral isolation and antibody testing, in addition to PCR.

Unsupported conclusions, such as the one offered by the Wellcome Trust spokesman, often create sensational headlines but do little to move science forward. Authors of the positive XMRV studies have been extremely careful not to claim causality, realizing that more scientific research is required to make such a statement. However, one fact still remains clear. Not one of the negative studies changes the results of the scientific research done by Lombardi et al., Lo et al., Urisman et al., and Schlaberg et al.

The WPI-led scientific study, which rigorously ruled out contamination, revealed high associations of gamma retroviruses with physician-diagnosed CFS patients, using four different methods of detection. Recent commentary associated with the negative research papers on XMRV, which used only one testing method, claimed that these studies proved that XMRV was not the cause of human disease. On the contrary, what the authors of the “contamination studies” confirmed is something that most experienced scientists already know; there are risks associated with using PCR if one does not properly control for contamination. They cannot conclude that other research groups had the same problems or that “XMRV is not the cause of CFS”.

Most significantly, the recent Retrovirology publications failed to address the most
important pieces of scientific evidence of human infection in the previous XMRV studies, including the fact that XMRV positive patients produce human antibodies to gamma retroviruses, XMRV integrates into human tissues, and infectious virus has been cultured from the blood of hundreds of patients with a diagnosis of Chronic Fatigue Syndrome and M.E. Humans do not make antibody responses to mouse DNA sequences from contaminated lab experiments. The Retrovirology studies only point out that XMRV research cannot be done in a mouse laboratory without extreme caution and should not rely solely on PCR methods.

Many researchers realize that the question of gamma retroviruses and human disease cannot and should not be dismissed lightly. Retroviruses integrate into their host’s DNA causing life long infection. Human retroviruses, such as HIV and HTLV-1, are causative for immune deficiencies, neurological disease and cancer. Other studies using mouse models of Murine Leukemia Virus infection, a close relative of XMRV, have shown significant tissue involvement soon after infection, resulting in many physical symptoms of disease including cognitive deficits and immune deficiencies, symptoms which are well documented in patients with XMRV associated diseases. Animal studies involving XMRV demonstrate that the virus moves quickly away from the blood to various organs within the body, such as the spleen, lymph nodes, GI tract, and reproductive organs. This helps to explain why the virus is difficult to detect in blood even as it replicates in the tissues of those infected.

Many anxious patients have asked, “Where do we go from here?” and “Is this the end of XMRV research?” The answer to the second question is an unequivocal “no.” As to the first question, a quick check of the status of ongoing research in various labs confirms that the research groups who have been working on XMRV over the past year are still hard at work developing better assays to check the world’s blood supply for the new retrovirus, finding correlates of immune dysfunction, engaging in animal studies, extending their findings to other groups of patients, and in general, enthusiastically continuing their research. They understand that novel scientific discoveries, which threaten current dogma, will continue to be challenged until the evidence can no longer be denied. For instance, there are still those few who question the fact that HIV is the cause of AIDS. It took Nobel Prize winner, Dr. Barry Marshall, 17 years and three trials in which he infected and then cured himself of H-Pylori associated ulcers, before the medical world would accept the fact that the bacterium causes the disease. Today we are engaged in a new battle to prove that human gamma retroviral infections, such as XMRV, are underlying pathogens in neuro-immune diseases and untold cancers.

It is clear that more research must be done to clarify the role of gamma retroviruses in human disease. However, when a pathogen such as XMRV is found in over 80% of those tested with the same diagnosis, causality is clearly a reasonable hypothesis that begs further scientific and medical research. It is a known fact that important questions of causality can often be answered through well designed clinical trials. For those who have suffered for years from these debilitating diseases, novel drug trials cannot begin soon enough.

WPI’s collaborative research projects are revealing the infectious and inflammatory nature of neuro-immune diseases, providing strong evidence against the use of CBT and exercise therapy as rational “treatments” for those who are ill. Such knowledge underscores the urgent need for much more private and federal funding of biological research to provide diagnostic tests and effective drug therapies for the millions who are ill, stop the spread of infectious retrovirus(es), and end the devastating cycle of disease.

Annette Whittemore
President
Whittemore Peterson Institute

http://wpinstitute.org/

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My Life as I "StandUP2ME" + OI/POTS

#125~ ME/cfs: Emily's Last words ~ RIP

#124- APA Bullying RE: DSM5 Watch site.

Permission to Repost.

#123~ Email- FaceTheNation, ~ ASAP Please

#122~ Restoring ME/CFS Research, Education, and Patient Care to New Jersey

#121~ CFSAC this week-Please Read~ THx♥

#120~ Nevada Newsmakers Annette Whittemore Interview–Transcript

#119~ Urgent: November CFSAC concerns:

>>>>Think DALE would want to HEAR the CFSAC meeting LIVE ?? <<<<

**************************

ORIGINAL NOTICE:

#118~ Why VIVINT "IS" Important NOW !

Help WPI by not ONLY VOTING Daily in the VIVINT FB Contest, but then ALSO Helping to donate up to $50/£30 per TOTAL during the Contest ...

Remind them of the MANY Diseases that are being Linked and ALREADY Helped. Thank you!!!!

********************************************* Beyond that~ PLease "Mark Your Calendars" for Sept 15th for the 7th Annual "I Hope You Dance" Gala FundRaiser Benefit for the WPI.

#117~ "The FINAL Betrayal"

#116~ URGENT- Get Out The Vote for WPI NOW !!

#115~ VOTE: Help WPI + us at Chase Giving

#114~ CFSAC Testimony- Mary M. Schweitzer, Ph.D.

#113~ 2nd Chance: Pres. Obama Can you Hear Us ?

#112~ "If this was HIV, it would be 1983"

#111~ Dear CFSAC~ One last time- Getter' DONE !

#110~ The EYES of the World Have it- NIH SoK

#109~ The Birth of "Advocates 4 Answers"

#108~ RE: Problem with Trine Tsouderos's reporting on XMRV

Origin of HYSTERIA

#107~ Guest post, "Laurence's Rant"

#106~ Beyond "Coffee-Talk" Time

Hemispherx Biopharma Announces 9th Clinical Investigators Conference: Ampligen Clinical Trials Highlighted

Conference Explores Potential Relationships Between Chronic Fatigue Syndrome (CFS) and a Novel Retrovirus

article link in full below (7)

*******************

#105 ~ The Transforming Faces of the CAA

#104~ PROTEST: McClure in USA- CFS "NIH" SEP

She fits NONE of the Requirements shown in the NIH site: "Fairness and objectivity"...is the most important criteria, which we all know she does not have.

SEE:

http://cms.csr.nih.gov/PeerReviewMeetings/StudySectionReviewers/HowScientistsareSelected+orStudySectionService.htm

#103~ XMRV-Bloggerama Report

#102~ *NOW is the Time* to HELP the UK ♥

#101~ Letter from Annette Whittemore, WPI

Remind them of the MANY Diseases that are being Linked and ALREADY Helped.
Thank you!!!!

*********************************************
Beyond that~ PLease "Mark Your Calendars" for Sept 15th for the 7th Annual
"I Hope You Dance" Gala FundRaiser Benefit for the WPI.

#102~ NOW is the Time to HELP the UK ♥