One Agent for Change

My Idea on Pepsi Refresh Has Been Randomly Selected-Two More Steps to Go

noreply@blogger.com (agentforchange) — Sat, 20 Aug 2011 16:41:00 +0000

I recently entered another idea on Pepsi Refresh, which I was informed it made through the random selection, meaning that it has met the basic guidelines of the project and it has made through the first step of the charity Pepsi Refresh Project. I sincerely believe the idea is feasible and it will enhance quality of life for many in the NeuroEndocrineImmune diseases community.

The idea is already gathering support from patients, my friends, my family and many patient advocates colleagues, all who are rooting for my idea to move to the next phase: to be posted for public voting. The idea also has the support of PANDORA, of Rocky Mountain CFS and FM Association, CFS Solutions of West Michigan, Phoenix Rising, CFSKnowledgecenter.com for now. As we share the effort with other organizations we hope they will help promote it too.

Meanwhile, there are a few things in which I could use your help and support. It will take no more than 5 minutes of of your time. Please go to this web page and choose whatever way you can make your own contribution to promote the idea in deriving community support so my idea can be deemed feasible leading to its successful implementation.

I also take this opportunity to encourage others to submit their own ideas, which can also benefit the NeuroEndocrineImmune Diseases community to this worthwhile project by Pepsi. It is a great opportunity to create awareness, generate buzz for our community concerns and mostly important to the plight of individuals stricken with these disabling, debilitating and devastating, sometimes fatal diseases.

Thank you for all that you do.

P.S.: Check out the new revised international version of the winning PSA (public service announcement) video from ME/CFS Worldwide Patient Alliance on PANDORATV youtube channel.

IRISH MEDICAL TIMES-Doctor letter to the editor shows a remarkable level of arrogance, biases and callousness

noreply@blogger.com (agentforchange) — Sat, 30 Apr 2011 17:42:00 +0000

I recently came across the link below. It is a letter to the editor to the Irish Medical Times online by a doctor stating his opinion on what I suppose would ME/CFS patient activism.
http://www.imt.ie/opinion/2011/04/the-pace-of-chronic-fatigue.html

The ignorance of this (alleged) physician of the state of the knowledge of the science for ME/CFS is blatant and high on the level of arrogance, biases, and callousness for his patients. He is yet to catch up to the science! He has no idea what ME/CFS really is. Even the scientific or medical point of view he attempts to make is clearly exaggerated to the point that it lacks common sense. To this doctor, this disease is a figure of patient's imagination running wild because of the internet.

May he never experience the pain and suffering of what ME/CFS patients have to endure. Because if he falls ill to ME/CFS, and indeed he is at risk simply because of his line of work, well, we could then only hope that a simple act of personal redemption might cure him.

His letter goes along with the comment made last year by one of the members of the Lords Main Chamber in the UK when discussing CFS/ME suggesting it is an uncomfortable illness. There ought to be an award for these types of comments. Does anyone have any suggestions?

Dr. Monagham, here is our message to you. We are no longer invisible. We will speak up for ME/CFS, since you cannot or refuse to do it. We will continue to require large priority funding for specific biomedical research for this NeuroEndocrineImmune disease in the U.S. The same must be done in the UK. We will send the message loud and clear and based in the current science. We will get the right answers. Your opinion as an answer to what ME/CFS is, and as it is written in your letter, deserves and has only one place to go and where it clearly belongs- in the circular file.

Meanwhile, in my subsequent posts I will attempt to share with you as many activities as possible being planned around the Globe to celebrate Awareness Day 2011. I am listing a few on this post.

First, I ask you to join me in DC at the CFS Advisory Committee meeting and on Capitol Hill where we will be delivering a message of hope, determination, resilience, and courage.

Young people with ME/CFS - "Speak Up About ME", fibromyalgia, chronic Lyme disease and MCS/EI will provide testimony to the CFS Advisory Committee (CFSAC) on May 10 and May 11 in person, by video and by phone. These young individuals will be part of the Advocates Extraordinaire(TM) Advocacy Leadership program culminating with Lobby Days on May 11 for Pediatrics and May 12 for all ages and for NeuroEndocrineImmune diseases. We will be wearing t-shirts that can be purchased here. We ask you that if you are coming in person to do the same.

Time for Action (Robert Miller) is now coordinating a letter to President Obama. RESCIND is also asking patients to write a letter to President Obama and their efforts are complimentary and being coordinated too.

Tom Hennessy, Jr, was the original creator of the International Awareness Day for NeuroEndocrineImmune diseases (on their site they use the term Chronic, Immunological and Neurological Diseases). We owe Tom our immense gratitude for his determination to to create awareness for ME/CFS. His good friend of many years Jerry Grayson has been instrumental in keeping RESCIND site running all of these years. Thank you Jerry for your dedication to the cause.

We encourage everyone to provide testimony to the CFSAC whether you live in the U.S. or not. We would like to see a long list of individuals providing testimonies along with the ones that will be there in person or are already on the schedule. Send your testimony today and it will be entered in the record. This is your opportunity to tell decision makers about our plight and influence outcome.

Be part of 2011 May Awareness Month by participating in the many events found in the U.S. and abroad. Take ownership of your future. Tell decision makers how they can help people with NEI Diseases. It’s up to you. It’s up to all of us.

Join me and together we are: One Voice, One Community, One Cause(TM).

Visit the site of the Coalition4MECFS.org.- A group of ME/CFS non-profit ME/CFS advocacy organization collaborating and dedicated to improving the quality of life of ME/CFS patients. These organizations will engage and mobilize governmental health agencies, the private bio-medical industry, researchers, health care providers and the public toward finding a cure for ME/CFS and related NeuroEndocrineImmune diseases.

Here are so far the organizations which have joined the Coalition4ME/CFS.org

CFS/Fibromyalgia Organization of Georgia, Inc.
CFS Knowledge Center

CFS Solutions of West Michigan
PANDORA Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.

Phoenix Rising

Rocky Mountain CFS/ME & FM Association (RMCFA)

Vermont CFIDS Association Inc.

Wisconsin ME/CFS Association, Inc.

ME/CFS Worldwide Patient Alliance winning Public Service Announcement video is awesome! This PSA created and produced by Lynn Bousquet will be sent and broadcasted on television and cable channels across the U.S. and abroad in the months to come.

Get your feet tapping at the inspirational video below. YOUR WORLD GETS VERY SMALL when you have Chronic Fatigue Syndrome (CFS) or a similar condition, like Fibromyalgia (FM), Lyme, chemical sensitivities, Myalgic Encephalomyelitis (ME) or Gulf War Syndrome (GWS).

P.S. Click here for a well thoughtful answer from Jane Colby, FRSA,Executive Director,The Young ME Sufferers Trust,Holder of The Queen’s Award for Voluntary Service, and click here to read some of the comments on Facebook including now letters from physicians addressing this (alledged) doctor's letter to the editor of the Irish Medical Times.

BELOW ARE PICTURES OF PAST AWARENESS DAY EVENTS - Conferences, meetings, proclamation day letters and special fund raising events.

ME/CVS/Fibromyalgie Nationale Protestactie Patiënten België VT4 Nieuwsit...

noreply@blogger.com (agentforchange) — Tue, 29 Mar 2011 14:39:00 +0000

Thank you Frank for sharing this with us from Belgium. This is wonderful! "Wake Up Call" for ME/CFS and did I understand correctly for fibromyalgia too? We join you all from the U.S. in solidarity. May Awareness month is around the corner. We will be visiting congress and will provide testimony at the CFS Advisory Committe. Together we are:

One Voice, One (wordwide) Community, One CauseTM

We are getting ready for May Awareness Month for NeuroEndocrineImmune Diseases. CFA Advisory Committee Meeting is around the corner. Get Ready! Let's hear the many voices that make up our overall community. Time for a change! The Time is Now! ACT NOW!

Question from Anonymous dated February 9, 2011

noreply@blogger.com (agentforchange) — Thu, 10 Feb 2011 14:05:00 +0000

A reply to Anonymous e-mail, dated February 9, 2011,

Dear Anonymous,

You sent me the following e-mail below:

“You wrote: “...that mutual respect, courtesy and civility is once again lacking and the anonymity of the internet allows this kind of behavior go unpunished..."

I agree that civility and courtesy, etc, are good things and an ideal worth striving for. But I wonder: just how would you go about PUNISHING someone for behavior that YOU don't like?”

First of all let me qualify something important. When you state “You don’t like”, addressing it to me, I need to state that raising the issues of civility, respect and courtesy, are not based in the “like” or “don’t like” capricious category such as “I like chocolate ice-cream” and “I don’t like vanilla ice-cream”. That is not what I said, nor it should be implied. It is much more profound. I hope you understand that too.

Therefore here is my answer: I will not remain silent. I will encourage others not to remain silent. One good example is in the blog “For every naysayer complaining of an organization, point to something good these organizations have done. Do not be silent! One does not have to engage in a heated exchange, one can just say what it comes from the heart. At the end of the day the same rights one individual has in order to state a hateful position applies to a kind one too. Why are we so afraid to confront the tone of these voices?

Let me be clear, I am not advocating preventing someone from expressing what he or she feels; I am only expressing concern over the delivery of the message. The reality is that until someone walks in someone else shoes, (by the way the name of PANDORA’s official walkathon is “WalkInMyShoes™) one cannot 100% express that he or she is the absolute holder of the truth. It works both ways! It is also accepted by reasonable people that patients who diminish one organization over another are doing a disservice to the overall cause. As a patient I take umbrage on these types of approaches. As a patient I have to stand up and question one’s motives.”

The message is our community needs to be stronger and unified. We need solidarity. We do not all have to march identically and to the same beat, but the core of our (NEIDs) community standards, interests, values and objectives must be embraced collectively. When we do, meaningful change will come successfully. The time is now.

Anonymous, I appreciate your question. Thank you.

TIME TO MAKE A DIFFERENCE TOGETHER

noreply@blogger.com (agentforchange) — Wed, 09 Feb 2011 10:05:00 +0000

"For having lived long, I have experienced many instances of being obliged, by better information or fuller consideration, to change opinions, even on important subjects, which I once though right but found to be otherwise." Benjamin Franklin

Once again I am excited about what is to come in the months ahead in the NeuroEndocrineImmune Disorders (NEIDs) Community. I think this May 12, 2011 Awareness Day will be the best ever!

I am excited with some of the initiatives that are taking shape with the NIH State of the Knowledge of the Science of ME-CFS and a potential future engagement of the CDC with patient advocates in the NEIDs community. It is exciting of the fact that through many initiatives within the NEIDs Community, life-long friendships are being created and that the theme that “now is the time to make a difference together you and I” is coming to fruition. Stay tuned for some future announcement.

As I look at the blogs that are popping up recently, I read one blog post today that prompted me to write this blog post If you can provide input it is appreciated. I believe the topic requires some new voices in the conversation.

More specifically I would like to address one recent statement found on the amazing blog of “CFS Central” in ref to Dr. Nancy Klimas. Mindy wrote: “I believe one of the reasons that patients became so pissed about the recent Klimas study was because it felt like a slap in the face: How could Nancy Klimas, who knows full well that biomedical research is what’s needed, participate in a cognitive behavioral therapy study? I believe Klimas’s name on that study shows that her priorities are not always patients’ priorities, no matter how proactive she’s been to the cause over the years. Patients have to stand up for themselves; they can’t depend on anyone else to help, even Nancy Klimas or its own support group, the CFIDS Association of America."

The facts are that the research in question was done almost 11-12 years ago. Unfortunately, it was only recently published in its entirety. It is the only research on CBT that factually states that CBT does not cure CFS-ME. In fact it clearly refutes what Peter White has stated, including one of his recent statement that to "his knowledge there has not been one CBT study that demonstrates he is wrong". This one in fact does!

I speak with great insight and knowledge because I participated in one area of that study. I was among the lucky ones who were part of the 12-week study program within the research study. I was told from the beginning of the study that it would not cure ME-CFS, but it would hopefully help me cope with the day-to-day challenges I was personally experiencing. Among these challenges: the devastating abandonment by a fiancé, loss of a 6 -income figure, and loss of a successful professional career. These losses are typically the type of losses that the majority of our overall community of suffering often experiences.

I can personally say that from that study, life-long relationships were created. PANDORA was established and a new life as a patient advocate for me took shape in a most profound way. Whether anyone in our community wants to hear this or not, the fact is that this study reinforced and came at a time in my life when I needed.

And NO… I do not t endorse CBT treatments as the kind provided in the United Kingdom, without any other type of medical care. Absolutely not! However, we cannot blankly state that in the proper setting patients with NEIDs should not use every available coping tool they can find.

With this in mind I would like to ask Mindy to please reconsider the statement made against Dr. Nancy Klimas. I also ask you to join me in this request. I can share with our entire community that without Dr. Klimas’ medical expertise, I would not be writing this blog post on these important issues. I can also say that without Dr. Klimas thousands of patients in Florida and beyond would not have access to Social Security, workman’s comp and private disability benefits. When a judge reads Dr. Klimas’ credentials in a medical report during a disability hearing, he is aware of her spotless credentials. Without the work of Dr. Klimas countless patients would lose hope ending in one of the most painful events, when I am told that another patient within our overall community has died by suicide.

I sincerely agree with Mindy in many areas. I personally would like to see a complete wipe out of the mind-set of our health government agencies of ME-CFS and other NEIDs as well. I would like to see $150 million dollars being invested annually on ME-CFS. The same for the other illnesses PANDORA embraces.

I recently stated to some advocate colleagues from other organizations: “The main drive of the letter to the CDC (which Jill Justiss mentioned on Mindy’s blog post) is to change a NATIONAL policy towards ME-CFS. Only through a change in national policy from the bottom up, meaning we get patients and their state leaders, then federal congressional leaders, then cabinet members and then the bureaucrats to do what they are supposed to do, we will yield huge positive results. So here is our take: No more handouts. No more half-efforts. We need to be smarter. We need to ~~collec~~t connect the dots. The time is now for an all out effort by ALL to take ownership of our future and the future of millions of ME-CFS patients by collaborating…” BTW, click here for the CDC petition.

I stand by this quote. I know it will not be easy, but we have to start building trust, interaction and networking among the patient community and our government officials, and the sooner the better. Wouldn’t you think that 3 and half decades of getting “crumbs” as Mindy stated would not have induced a much smarter approach from our “independent patient advocates” also to create change? Instead what I have seen year after year, after spending 12 years watching the internal fracturing, bickering, anger, bitter disrespect, rage, and demonization of one another or of organizations across the board simply because one might not agree with another individual. It is pitiful! It has to stop! It has to begin right here. It is a waste of stamina, energy and creates emotional turmoil. The time one spends on forums creating disharmony and chaos could be better used to create change that is meaningful and powerful.

It does not help us either with the fact that the stigma that this community of suffering already endures becomes larger than life, because of such misdirected and destructive behavior.

Yes, Let’s Be Angry! Be very Angry, because angry directed to a greater good creates change. I am all for it! Yet, I do not subscribe to the uncontrolled rage I am witnessing that is quite destructive.

I do not subscribe to the theory that “organizations have failed us”. But I do subscribe to the concept we can do better! I do not subscribe that our patient community should attempt to destroy the core and the foundation of several organizations, which have established through hard work, perseverance and resilience, programs that are beneficial to the overall community. Yet, I do subscribe to the concept that we should ask questions and provide constructive criticism.

I also subscribe to the fact that organizations without patient participation, do not thrive. They slowly become obsolete and ineffective. Again, only through sincere and ongoing participation and collaboration we can all win the fight.

Our community organizations’ tasks are monumental. It is a gargantuan struggle finding resources, getting volunteers, raising funds, answering phones, writing newsletters, communicating with officials, visiting disabled patients, bringing food to patients, writing letter on patient’s behalf to Medicaid and insurance companies, and much more. I cannot help but question if any of the individuals in question have really taken the time to visit with a representative of any of the organizations supporting our overall community and to get to know them personally.

I embrace the fact that as organizations we need to get with the times, and we have to be smarter by using social media advocacy and other tools to our advantage. Some of the suggestions as it relates to ACT UP (AIDS) as I have been reading on some of the blogs or forum posts, I dare to say have been replaced, re-evaluated and/or complemented by other much more contemporary approaches.

As someone who is participating not only as an individual and as a representative of an organization – PANDORA, which wears many hats as a local, state, national and international organization, yet with a very small budget, I can state that while within the confines of our mission we have accomplished successful projects. The same can be said for all of the organizations I have interacted supporting our overall community of suffering.

A good example to share of a good and yet “in your face” approach is the “flashmob” display in which I participated at the latest CFSAC meeting. It was a powerful display, yet it was respectful. For patients across the U.S. who saw the video and for patients across the globe it was an awesome event to experience. So why are not patients asking organizations "What can we do to help you to drive our message more effectively?"

Instead, what I am seeing is heartbreaking and exasperating. It is also painful to realize that despite 3 decades later, the CDC is still lending credit to the psychobabble approach. It was this personal realization, which came as a personal anger and also shared by many in our patient community, was directed to the positive, leading to the cause-project ME-CFS Worldwide Patient Alliance on Facebook. I am proud to say that PANDORA supports this cause.

How about the grassroots artistic efforts of Sock it 2 ME-CFS? Why are not more patients supporting it in great numbers? Recently the creators of such patient initiative posted that they can no longer continue to do the project and could use assistance. This project is the one that gave every CFSAC member a well-crafted colorful sock pin and created such a buzz during the meeting in DC and at the New Jersey CFS Association Fall Meeting last year.

Why aren't more patients supporting "FAX the AD"? A collaboration among several patient groups on Facebook and organizations?

It is also heartbreaking to see within our patient advocacy community, that mutual respect, courtesy and civility is once again lacking and the anonymity of the internet allows this kind of behavior go unpunished and seldom refuted. The tone found in many of the forums across our community are once again obnoxious, hurtful, demeaning, and counter-productive. When are we going to realize that this internal bullying approach is wrong? It is said to say that I can tell you is that this approach has been in place for decades too and the results are the same: A community divided leading to a weakened community as well. What is wrong with this picture?

Like many in our patient advocacy organizations, our board has been proactively advocating, lobbying and assisting financially families and individual patients on a personal level and through PANDORA. Often we do not share these successful results due to confidentiality and privacy issues. How can any one of us truly measure some of the efforts organizations do on patient’s behalf? One way is by sharing your experience and knowledge of any organization you support. Express your appreciation not just for one organization but for many TODAY!

For every naysayer complaining of an organization, point to something good these organizations have done. Do not be silent! One does not have to engage in a heated exchange, one can just say what it comes from the heart. At the end of the day the same rights one individual has in order to state a hateful position applies to a kind one too. Why are we so afraid to confront the tone of these voices?

Let me be clear, I am not advocating preventing someone from expressing what he or she ~~fees~~l feels, I am only expressing concern over the delivery of the message.The reality is that until someone walks in someone else shoes, (by the way the name of PANDORA’s official walkathon is “WalkInMyShoes™) one cannot 100% express that he or she is the absolute holder of the truth. It works both ways! It is also accepted by reasonable people that patients who diminish one organization over another are doing a disservice to the overall cause. As a patient I take umbrage on these types of approaches. As a patient I have to stand up and question one’s motives.

There is no other diplomatic way to state what I am posting here. I know that I am going to probably get hate mail. I will have to deal with it. I also know that for each hateful e-mail, I will get 10 stating otherwise. I just hope I will not get death threats as some of the perceived enemies of our community including a controversial researcher has received when inflammatory writings by a few hit the forums and the internet.

As one very wise woman Tammy Saltzman (a S. Florida life coach) recently quoted another very wise woman- Margaret Chase Smith, “Every human being is entitled to courtesy and consideration. Constructive criticism is not only to be expected but sought.” Therefore I welcome your input but I will also exercise my personal right to not post replies, which will damage the fabric and the strength of our overall community.

I appreciate your taking the time to read this blog post. Thank you for all that you do.

800 Yards Around (a CFS, FM, Lyme, ME, GWS song) - Bill Gaunce - Officia...

noreply@blogger.com (agentforchange) — Tue, 01 Feb 2011 01:42:00 +0000

This is the new video we are featuring on PANDORATV (pandoranet) our video channel on youtube.com and on my personal youtube account too. Bill Gaunce created a smart, catchy and down to earth tune. The sound is country-western and is something that most of us can sway to it. The videos slides are cool and extremely creative. Enjoy it and sing along. I am! Here is 800 Yards Around for our listening and viewing pleasure and get a chuckle too.

Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post

noreply@blogger.com (agentforchange) — Mon, 06 Dec 2010 05:51:00 +0000

Here is the Press Release covering a historical moment in our overall advocacy community. I am proud to be part of this movement. A huge thanks to the MCWPA team and to the PANDORA team who in collaboration with hundreds of other patients advocates worldwide have raised the bar in advocacy strategy and commitment.

My special gratitude goes to Tina Tidmore, Sita Harrison, Kathryn Stephens, Sharon Stapleton, Andrea Pring, Karen Ravitz, Lynn Bousquet.

To the organizations who supported the advertisement in The Washington Post: P.A.N.D.O.R.A. Inc., Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.

To the creative bunch of CFS-ME patients who designed incredible ads projecting our unique voice, I am grateful.

To the Time for Action team : Charlotte von Salis, Bob Miller and Rivka, I am grateful.

To the angel donors who donated generously, I am grateful.

To patients who contributed generously to the cause, I am grateful.

To everyone who believed in the cause-project, WE are grateful.

Click in the link below and give yourself a pat in the back, because WE are no longer invisible. The best is yet to come.

Chronic Fatigue Syndrome Patients Run First-ever Ad in The Washington Post

One Voice, One Community, One Cause(tm)

P.S.: Please visit MCWPA.org today. Donate to the cause-project as generously as you can.

I CANNOT IMAGINE OUR OVERALL COMMUNITY WITHOUT SOMEONE LIKE YOU

noreply@blogger.com (agentforchange) — Fri, 12 Nov 2010 02:01:00 +0000

by Marly Silverman

I haven’t been blogging lately. Because of the time, stamina and physical efforts allocated for personal medical issues, it is not a priority for me. I do admire those who can do blog and share their voice. It is a special gift that they have indeed.

As I recently laid in bed trying to recoup from a trip the CFS Advisory Committee and to the New Jersey CFS Association Fall Conference, I wondered whether what I do really matters. Does it create change? Does it make a difference? Does it have an impact on quality of life of the chronic ill?

As I had this fleeting moment of self-pity, I reminded myself of how lucky I truly am to be part of our overall patient advocacy Community for NeuroEndocrineImmune disorders (NEIDs). I realized that it was quite illogical to think otherwise.

I simply cannot image our overall Community without someone like you, the reader, somewhere within the U.S. or living in another foreign land. You could either be a patient with daily struggles or a caregiver wondering whether you will be strong enough to be there for your loved one, another single day.

The thing is, that whoever and wherever you are, you truly matter to me and to the organization for which I volunteer, as often as I am able and possibly can. Although I am extremely optimistic about the opportunities that are present in the current advocacy arena for individuals with NEIDs, I am concerned that things are getting a little out of hand in the forums I have recently visited and on the types of posts I have been forwarded lately. I am concerned that the unity among the many voices remains fragile. I am afraid that the agreement in the core issues we so badly need to remain united, are being fractured. I am concerned that because of the anonymity of the Internet, individuals may feel a false entitlement to nastiness and use the Internet as a vehicle to sheer bitterness that is counterproductive and hurtful.

I don’t expect, and would not want, everyone to be identical in the manner through which we advocate for the overall Cause. We need the different points of view, the life experiences, and the personal insight and wisdom that individuals bring and come from our overall diversity; however, I certainly have concerns about the ongoing tone I see, read about, and find are being expressed in some of the patient forums.

Although I cannot even begin to explain why this is happening and cannot control individual behavior, I do see the sad results. I am sure I am not the only one. If you agree with me, then join me in speaking up but do it with respect and kindness.

At the core of these disagreements are lack of trust coupled with a sense of rage that can be quite unproductive and destructive toward others advocate colleagues. It does not surprise me that it is often self-destructive too.

Anger is needed and required for individuals in order to create change and make a difference; however, rage is not. Although anger directs us towards strong advocacy and making noise and pushes us to take ownership of our present and future, rage does not accomplish the same effect, reaction, and results. Anger is the first step towards empowerment. Rage, on the other hand, does not provide the balance and acuity that is needed for noble actions. In a moment of rage, as history teaches us, individuals engage in behavior that can kill, maim, destroy, and inspire others to commit horrible crimes against humanity. Over and over we see this kind of behavior in the news, in schools, at the work environment, in politics and often and unfortunately in many homes across the world.

Not a day goes by without us being exposed to rage depicted on Youtube.com for the whole word to see. It is at those times, we all wonder about civility, kindness and personal responsibility.

When rage is directed toward a fellow patient advocate in a manner that generates controversy, hurt, misunderstanding, and distrust, the reality is that we all lose the collective strength we need to fight the good battles and to win the main prize: quality of life for every patient stricken with a NeuroEndocrineImmune illness. When one of us unkindly knock down someone’s effort, and for whatever righteous reason, we all become weaker in our collective efforts. When rage happens or is manifested toward another fragile human being, we all feel the pain, simply because we are a Village, so to speak.

Why does this continue to happen? Have we not matured as a patient advocacy community enough to learn from past mistakes? Why do we keep repeating them over and over?

I cannot imagine our Community without individuals like Tom Hennessy, Jr., and the “elders” or pioneers of our advocacy community, such as Mary Schweitzer. Can you imagine our community now without Cort Johnson, Hillary Johnson, Christophe Cairns, and Khaily Castle? How about John Herd?

How about a Community without Drs. Kenneth Friedman, Judy Mikovits, Lenny Jason, Dan Peterson, Paul Chenney, Ben Natelson, and Nancy Klimas? How about Dr. Dharam Ablashi and Rosemay Underhill? Without the scientific and medical work that they have and continue to provide us, where would we be today?

How about Jennifer Spotila, Brian Smith, Kim McCleary, and Dr. Suzanne Vernon? Can we truly imagine our Community without them? I cannot.

I cannot imagine our overall community without Sandi Lanford, Veny W. Musum, Carol Fish, Steven Krafchick, Jason Newfield, Mary Ann Parker, Brad Ellis, Sharon Stapleton, Kathryn Stephens, and Karen Ravitz, and so many more. These individuals are cut of a different mold and are making a difference every day using their professional and personal skills. They sacrifice their personal lives to speak up for you and for me.

How about a Community without Bob Miller, Patricia Carter, Rivka, Mike Dessin, Ruth R., Sita Harrison, and Andrea Martell? How about Jill Justiss, Rik Carlson, Rich Carson, Jo Best, Barbara Stafford, Tessie Tess, and Lydia Neilson? How about our community without Daniel Moricoli, Paula Hayward, and Franky Nolan? How about the strong voices of Kathryn Stephens, Sharon Stapleton, Betty McConnel, and Pat LaRosa? How about the kindness, concerns and creativity of Keith Baker, Frank Opp deBeck, Jerry Rice, and Peter Benko? How about the persistence of Susan Cue-Sagman and Donna Boyer? How about the professionalism and dedication of aCeleste Cooper, Dorothy Wall, Yvonne Keeny, Sharon Ferber, Sharon Ostalecki, Sabrina Johnson, Mary Bennett, Pam Bennett, and Lynne Matallana? I am on a roll… and I could go on for pages.

These individuals are all from different backgrounds, gender, countries, and life experiences, yet they all share the same goal—quality of life for individuals stricken with NeuroEndocrineImmune illnesses. Each one contributes in their very own special way to our overall Community.

In my Community, I cannot imagine not having the friendship and collaboration of Lynn Bousquet, Sebastian Chico, Andrea Pring, Yvette Taylor, and Tina Tidmore. In my Community, I cannot imagine not having the friendship, support, and the example of great personal courage and conviction of Annette Whittemore, Lisa Baldwin, Jill McLaughlin, Barbara Soliday, Etel Barborka, Denise Lopez-Majano and Patricia Fero, mothers of children with CFS-ME and fibromyalgia who stand up to the status quo and with their influence, tenacity, and resilience have moved mountains, each in their own special way.

In my Community I cannot imagine not having the support and caring friendship of Bonnie Meyers, Teresa Reid, Pat Mayer, Ellen B., Kathy Kohler, and all of the founding board members of P.A.N.D.O.R.A. I simply cannot imagine where I would be without P.A.N.D.O.R.A.‘s past and current board members, community advisors, and Advocates Extraordinaire™. How about Rebecca Artman, who is my twin CFS sister; as well as George Viňa, Jenny Torres, Dr. Lina Garcia, David Adonailo, Karen Sacks, Mike Dessin Connie Borschel and Bonnie Thornber? I cannot imagine my world without them.

I cannot imagine...not having the support of all my Facebook advocate colleagues, all 717 of them, plus all the supporters of P.A.N.D.O.R.A. and of our overall efforts. I regret not being able to list every one here. If you are interested in knowing who they are, just go to my Facebook page.

Lastly, I cannot imagine...not having the love of my family and friends and the love and caring concern of my husband Stephen, and of my son Lawrence.

Can you really imagine our Community missing ANY one of these individuals? I cannot. Neither should you.

If you think otherwise, you are free of course, to express yourself, but I sincerely ask you to please make your point kindly and don’t beat me up for having the courage to speak up on these touching and difficult issues. I can no longer remain silence. The time is now. Let us ACT NOW! AND AS

One Voice, One Community, One Cause™

P.S. As we will be celebrating Thanksgiving in the U.S. soon, I think it is now more than ever fitting to be thankful and grateful for what we have, and to work together for WHAT WE NEED.

http://myemail.constantcontact.com/News-from-P-A-N-D-O-R-A-----November-2010.html?soid=1098473133029&aid=ie-b3qaLh-E

noreply@blogger.com (agentforchange) — Fri, 12 Nov 2010 00:49:00 +0000

P.A.N.D.O.R.A.'s Latest newsletter (November) 2010. Share it with your friends. Sign off on the petition. Get involved.

Marly

http://myemail.constantcontact.com/News-from-P-A-N-D-O-R-A-----November-2010.html?soid=1098473133029&aid=ie-b3qaLh-E

CHASE COMMUNITY GIVING-1 Day Left to VOTE for P.A.N.D.O.R.A. to Remain in the top 200 charity list

noreply@blogger.com (agentforchange) — Mon, 12 Jul 2010 04:33:00 +0000

REMINDER: PANDORA IS THE ONLY ORGANIZATION EMBRACING CFS-ME, FIBROMYALGIA, MCS-EI, LYME DISEASE, GWS ONTHE TOP 200-CHASE COMMUNITY GIVING

Dear Friends,
Patient Alliance for Neuroendocrineimmune... Disorders Organization for Research & Advocacy, Inc. (this is how you have to search for us if you need.) DBA as P.A.N.D.O.R.A., the charity I founded, is holding a very good ranking on Chase Community Giving. We are the only organization from within our overall Neuroendocrineimmune Disorders (NEIDs) Community that has made to the top 200 ranking now at number 140 with 1,1303 votes. You can vote for us at http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

We have accomplished this amazing task with the support of individuals like Frank OpDeBeeck,who created a tutorial video to get us on the top 200 and many more, including Phil Campos, who produced the video for the contest, Andrea Martell, Rik Carlson, Sus Cue-Sagman, Michelle Lonchar, Gaston Gingues, Andrea Pring, Pat LaRosa, Cort Johnson, Blair Miller, Betty McConnel, Sandi Lanford, Ashely VanTol, Martina M Punktchen, Claire Randall, Nancy K Jay, Thomas Hennessey, Keith Baker, Lisa Baldwin, and so many more. You know who you are and we are grateful to you all!

We are also grateful to our board members on Facebook who are asking their friends to vote and to the National Fibromyalgia Association, The CFIDS Association and the Whittemore Peterson Institute for posting on their Facebook pages asking their fans to vote for P.A.N.D.O.R.A. too.

BUT if we do not get a significant spike on the number of daily votes for our organization between now and July 12, the day the contest ends, we will lose the opportunity to receive a grant in the amount of $20,000.00. While for some of the larger organizations this may be a drop in the bucket, for us it is 95% of an entire year's budget. It is priceless!

Look at what we can do with $20,000.00:
1) Pay our phones, web site hosting, newsletters costs for 2010. Get a new computer that can handle new technology specifically for non-profits including a new efficient donor data base.
2) Continuing to position our organization and our strategical partners, so we can move on with our main project: The establishment of the NEI Center(TM), in New Jersey. It will take time and money to get this off the ground. http://www.neicenter.com/calltoaction.htm
3) Get a new technologically updated web site that will continue to inform you and share what we do best.
4) Hire a part-time person to help us in the office to respond to an ever growing number of inquiries & assistance for individuals stricken with NEIDS.
5) Travel to DC to represent you at the CFSAC meetings, Pain Medical Conferences and at the IACFS-ME conference in Ottawa next year.
6) Collaborate with other organizations through our micro-grants for medical students, educational conferences and advocacy/lobbying efforts in the U.S. and abroad.
7) Expand the Quality of Life Advocate Program: Patient Advocates helping others and "paying forward".
8) Expand the Advocate Extraordinaire Program for PANDORA - http://www.neicenter.com/advocatesextraordinaire.htmand the NEI Center(TM) - http://www.neicenter.com/advocatesextraordinaire.htm
9) Cost of educational brochures (art work, printing and mailing)
10) Support of empowerment groups in Florida and beyond.
11) Provide support to parents with children stricken with NEIDs.
12) Create PSAs for the illnesses we embrace and expand PANDORATV on youtube.com - http://www.youtube.com/user/pandoranet and http://www.youtube.com/user/lymenaide
13) Strengthen our national and international advocacy and grass-roots initiatives.

These efforts combined with a Chase Community Giving grant will strengthen an organization that is patient-driven and physician approved.

Please vote today for Patient Alliance for Neuroendocrineimmune...(DBA) P.A.N.D.O.R.A. http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

if you haven't voted yet, we will run the risk of losing our current rankings and end up with NOTHING. You would not want this to happen... would you?

Often I hear that no one cares about our community. That the lack of respect, lack of money for research & patient treatment, and lack of awareness for the plight of millions is the norm. Well, here with Chase Community Giving we have the PERFECT OPPORTUNITY to get all of the 3 major concerns we all have in one swoop. As a matter of fact with the number of individuals stricken with CFS-ME and fibromyalgia, our organization could have been on the top 5, competing for the $250,000.00 and $100,000.00 grants.

Make sure you Vote for PANDORA NOW - today and for the other organizations that too share a similar mission with us. We cannot afford to miss this wonderful opportunity. If we are able to get another 5 or more orgs on the top 200, we are speaking of a cash injection in our advocacy movement of at least $120,000.00. To see the list of the organizations suggested by advocates go to http://www.facebook.com/notes/pandora-inc-patient-alliance-for-neuroendocrineimmune-disorders-organization-for/cast-your-vote-for-patient-allliancepandora-and-forthe-organizations-that-embrac/134208223265717

Here is the link again: http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

Thank you for your support! We can win this grant! All we need is your vote.

In Good Health and In Beauty,
Marly Silverman, Founder, P.A.N.D.O.R.A. - www.pandoranet.info
Co-founder: The NEI Center(tm) - www.neicenter.com

Chase Community Giving on Facebook

noreply@blogger.com (agentforchange) — Wed, 16 Jun 2010 12:31:00 +0000

Friends

Here is the link to vote for P.A.N.D.O.R.A. on Chase Community Giving contest. We are now number 53 on the top 200 list of charities and we are moving up too quickly. WPI is now number 17 on the top 200.
Please support this effort. We really have a great chance to get some funding for PANDORA to be able to continue to get our main effort: The NEI Center and other worthwhile efforts off the ground.

Chase Community Giving on Facebook

Here also is the link that will take you to a page that Frank Op De Beeck from Phoenix Rising has created specially for this contest and in order to support the work of P.A.N.D.O.R.A. and WPI.
Cast your vote today:
http://www.chasegiving.tk/

Here is the link to vote for P.A.N.D.O.R.A. if you already voted for WPI.
http://apps.facebook.com/chasecommunitygiving/charities/550795076-patient-alliance-neuroendocrineimmu-disorders-org-for-resech-amp-adv-inc

Here is the link to vote for WPI if you already voted for P.A.N.D.O.R.A.
http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-forneuro-immune-diseases

Here is another organization that you can vote too using the 5 votes you have for this round:
http://apps.facebook.com/chasecommunitygiving/charities/223930161-the-lanford-foundationlifelyme-inc

I have contacted The Vermont CFIDS Association, the Wisconsin CFS-ME Association and the New Jersey CFS Association asking them to ensure they are registered too so we can vote for them too and when we do we can get a Gift Vote that we can then give to a friend to vote again either on WPI or PANDORA or any other of the organizations within these 5 or any of the organizations of your liking.

Cast your vote today!

Support WPI and P.A.N.D.O.R.A. by voting, (up your volume) Lets win $250...

noreply@blogger.com (agentforchange) — Wed, 16 Jun 2010 04:12:00 +0000

'News from P.A.N.D.O.R.A. - May 2010'

noreply@blogger.com (agentforchange) — Tue, 04 May 2010 04:13:00 +0000

Dear Friends,

I am on vacation with hubby but I want to share with you the latest PANDORA's newsletter. May is PANDORA's Awareness Month for Neuroendocrineimmune disorders. We have several events in South Florida that we are sponsoring and/or supporting, starting with May 8, 2010 lecture by Dr. Nancy Klimas, then May 11 meeting at the Center for Independent Living (CILB) then the event on May 12, in Boca Raton for Fibromyalgia and related chronic illnesses and finally the events on May 12 by the Fibromyalgia Support Group of Boynton Beach. We have also gathered proclamation day letters from the cities of Murphy, North Carolina, Columbus, Ohio and Pompano Beach, Florida declaring May 12, P.A.N.D.O.R.A.'s International Awareness Day for Neuroendocrineimmune Disorders. Click on the link below for complete information on these events and much more.

'News from P.A.N.D.O.R.A. - May 2010'

Happy Mother's Day!

We hope you will participate in these events if you live in South Florida and if not please join one in your neighborhood. There will be so many events worldwide celebrating and empowering members of our overall community.

Take ownership of your future by donating today towards the NEI Center(tm) in New Jersey.

Marly Silverman

'News from P.A.N.D.O.R.A. - April 2010'

noreply@blogger.com (agentforchange) — Sat, 17 Apr 2010 23:15:00 +0000

MITCH PAGEREY RACING FOR A CURE FOR NEUROENDOCRINEIMMUNE DISORDERS SUPPORTING P.A.N.D.O.R.A.'S EFFORTS - LONG BEACH, CALIFORNIA - April 16-17, 2010

Hi Everyone, I want to share with you P.A.N.D.O.R.A.'s latest newsletter. This weekend
April 17-17, 2010, Mitch Pagerey is racing for a cure for Neuroendocrineimmune Disorders. Vroom, Vroom, Go Mitch! Check out the NEI Center logo on his suit and the PANDORA's patch on his sleeve. Then look at the beautiful new logo of PANDORA painted on his car. Vroom,Vroom, Vroom. Life is good!

'News from P.A.N.D.O.R.A. - April 2010'

Motorsport.com: Photos channel

noreply@blogger.com (agentforchange) — Sat, 03 Apr 2010 23:26:00 +0000

I am sharing this with you even before our press release goes out. I could not wait! This is so cool! Here are some of the pictures of Mitch Pagerey and his team at the 12 hours Sebring, Florida. Please note the NEI CENTER patch on his suit and and the PANDORA logo on car 89. Mitch is racing for a cure for Neuroendocrineimmune Disorders. Check out these pictures. We are so grateful to Mitch for his support of P.A.N.D.O.R.A. Vroom, Vroom, Vroom.

Motorsport.com: Photos channel

'NEWS: NEI Center Resolution Awaits Passage in New Jersey Senate'

noreply@blogger.com (agentforchange) — Tue, 16 Mar 2010 03:05:00 +0000

Fellow Bloggers,

I am so proud to share that we are on our way to PHASE 2 of the NEI Center patient driven community project. Here is the latest on this grass roots efforts. Spread the word!

'NEWS: NEI Center Resolution Awaits Passage in New Jersey Senate'

'News from P.A.N.D.O.R.A. - March 2010'

noreply@blogger.com (agentforchange) — Tue, 09 Mar 2010 00:10:00 +0000

Bloggers,
Here is P.A.N.D.O.R.A.'s latest newsletter. It includes the link to the NEI Center website. Share it with others

'News from P.A.N.D.O.R.A. - March 2010'

'Ryan Baldwin case is an ominous wake-up call'

noreply@blogger.com (agentforchange) — Wed, 03 Mar 2010 17:36:00 +0000

Due to a longer unexpected relapse (is there any other kind when you have CFS?) I haven't been blogging much. P.A.N.D.O.R.A.'s facebook page and dealing with some other family health issues have taken care of my time and stamina. Although advocacy is a hobby for me, sometimes one has to walk way to recharge one's batteries. The statement you are about to read is truly important not only to parents with children with CFS-ME, but to parents with the neuroendocrineimmune disorders (NEIDs) P.A.N.D.O.R.A. also embraces:
Fibromyalgia, Multiple Chemical Sensitivity, Chronic or Persistent Lyme Disease.

The Pediatrics & Family Conference is to be held in the Asheville area. Asheville as you will read by clicking on the link below is a gorgeous mountainous area - the Blue Ridge Mountains - and famous for their celebrity homes and art. But Asheville is also the the back drop for what I qualify as "an institutional ingrained uneducated medical view (by physicians in North Carolina) and in other metropolitan areas of the country in regards to CFS-ME and other related chronic illnesses.

Our goal with this conference, is to highlight the continuing inadequacies (despite) years of the CDC medical provider education complemented by the public educational campaign with the CFIDS Association. Despite the hardwork from the CAA, we, patients with CFS-ME are still dealing with the fact that there are still only a dozen of CFS specialists in a few states treating CFS-ME patients, who are reaching retirement age, and the fact that the number of primary physicians in the 50 states only have a mediocre understanding of CFS potential treatments.

For the past two years when making my personal presentation to the CFS Advisory Committee board I brought the fact that if there are no American physicians willing to learn, to educate themselves about the potential treatments for CFS-ME (as well as the other NEIDs) that P.A.N.D.O.R.A. embraces. And, since this has not changed and it does not seem that it will change despite of all the advocacy that organizations have created, then we must import foreign physicians from other countries to do the work that their American counterparts are not doing or willing to do.(We will have to do that anyway, when health care reform comes to place and I hope soon.) At P.A.N.D.O.R.A. we have taken this to heart. We assisted Dr. Lina Garcia in getting her working visa to the U.S. Dr. Garcia is now going through the medical board licensing rigorous process so she can start a residency program and then open her practice for CFS-ME, FM and GWS private practice if she does not go into scientific research for neuroendocrineimmune disorders. For about 3 years now she has been under the supervision of Dr. Nancy Klimas at the University of Miami, CFS clinic in downtown Miami. By the time she will be done with this training she will be able to apply it to her residence training rotation and teach other physicians in the process too.

For now I ask you to read P.A.N.D.O.R.A.'s statement and get involved in any way you can in acting as an advocate. One opportunity will be to join our Advocate Extraordinaire program. E-mail me thorugh our contact page on our site, and I will add your name to the growing list of Advocate Extraordinaire who are getting ready to make a difference.

'Ryan Baldwin case is an ominous wake-up call'

Word of Thanks!

noreply@blogger.com (agentforchange) — Mon, 18 Jan 2010 05:19:00 +0000

In the past year, P.A.N.D.O.R.A.'s Facebook page and our Twibe on Tweeter have been doing well because we have wonderful administrators helping us to stay in touch with members of our community.

I want to acknowledge a few from the U.S. today: Susan Cue-Sugman, Jill Serotta (who is taking a break for now) and Mary Ann Parker. These amazing ladies have spent hours posting relevant materials and responding to question that often pop up on our social sites.

I am grateful for their commitment and support of P.A.N.D.O.R.A. They are indeed Advocates Extraordinaire!

P.S.: Please note that in order to see the links for Sus and Jill you must log in to Facebook or sign up for it.

Make a Difference Monday Video by Mrchicity3

noreply@blogger.com (agentforchange) — Mon, 11 Jan 2010 18:32:00 +0000

This was sent to me by a subscriber and friend of PANDORANET, our youtube.com page. The person along with her family who did the video and cooked the delicious soup are from South Florida. The Broward County homeless agency listed here is coincidentally one of the agencies many of our members have supported in the past with gifts of food for their pantry. Random Acts of Kindness and amazing acts of beauty. Thought this could lift you up.
Marly Silverman
Founder, P.A.N.D.O.R.A.
www.pandoranet.info

'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'

noreply@blogger.com (agentforchange) — Mon, 11 Jan 2010 14:39:00 +0000

Here is PANDORA's latest newsletter. Share it with your friends on your Facebook page. If you are a blogger post the link in your blog too.

'Click the Share button to create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'

1Voice, 1Community, 1 Cause(TM)

Marly Silverman

2010 - The Beginning of the Quality of Life Decade for NEI Patients

noreply@blogger.com (agentforchange) — Thu, 07 Jan 2010 01:26:00 +0000

Friends,

The writings below now revised for you,is one that I sent today after learning of the passing of a fellow brother within our community. The e-mail was sent to the the leaders of the many organizations that embrace CFS or other neuroendocrineimmune disorders or illnesses, some politicians, and to some members of the Department of Health and Human Services.

Back in 2003 and later on 2004 on a conversation with several individuals I used the term "failure to thrive" which shocked some. I stated that our overall community (including physicians and researchers too) were in an environment that was not conducive to growth in the angles that are necessary for our community to thrive. For patients is the quality of life issue that are overbearing. For physicians is the lack of knowledge and science that can guide them to treat their NEI patients. For researchers is the lack of will from the government and other potential interested parties that results in dismay funding for CFS and other NEIDS. It is a chain reaction that creates such human pain and despair of great proportion.

It was not until the sad news of the death of a fellow brother in illness, that I became aware of a blog titled "Failure to Thrive". Powerful words aren't they?

http://toadlily-gamer.blogspot.com/2010/01/weve-lost-jack.html

I am deeply concerned that Jack's writings (of blessed memory) shared with us.. that he was not a "young one". He had lived a great life and yet because of his current circumstances, his spirit became broken and worse yet, his body lost the connection with his soul resulting in the loss of the will to live.

Therefore I dare to ask the question: isn't then CFS a mind,body, soul illness like any other severe and debilitating chronic illness that robs people of their quality of life and dignity? Isn't CFS an illness that robs individuals of their humanity? As members of our community of suffering we need to be open for this discussion and to pursue a healthy debate that although CFS is not a psychiatric or mental health illness, it can certainly place individuals in this fragile realm, resulting in a forsaken reality that propels individuals to commit suicide.

How many more losses will this community of suffering have to bear before we unite as 1 Voice, 1 Community, 1 Cause ?

With some heavy heart, at least I see glimpses of potential hope. The WPI efforts with great potential being realized now. The NIH trying to replicate the XMRV virus using the same protocol, ME-CFS community.com, efforts underway in Europe to get an advocacy movement that is strong; the IACFS-ME conference in Canada, the CAA making research a priority, the NJ CFS Association, the Wisconsin CFS Association, the Vermont CFIDS Association ongoing medical student efforts, Phoenix Rising, Pro-Health, Facebook groups who are creating such an awareness to our cause that is awesome! And obviously our own efforts for the establishment of the NEI Center in New Jersey and in other satellite locations.

But the bottom line, and there is always one, is found in 3 simple words: QUALITY OF LIFE - This decade starting in 2010, it should be the year for all of our organizationsto concentrate on this theme. From this day forward for the next 10 years, it should be the QUALITY OF LIFE DECADE FOR THE NEI COMMUNITY. It should be the decade to bring, enhance and create QUALITY OF LIFE for the individuals we all claim to represent. We must make this our main priority and you too the patient needs to be part of this monumental effort in whatever way you can.

I wish you all a Happy Healthy and Prosperous New Year!

Marly Silverman
In mourning for Jack DeLuca

P.S.:

Debbie Anderson sent me the address to where you can send your sympathy cards to:
Dennis Sabatino
1510 Sullivan Trail # B
Easton, PA 18040

PANDORA'S CHRISTMAS WISHES TO ALL!

noreply@blogger.com (agentforchange) — Thu, 24 Dec 2009 20:14:00 +0000

Dear Friends,

Here is P.A.N.D.O.R.A.'S Christmas wishes to you all! Click on on the link below.

'Here is PANDORA'S Christmas wishes and Click the Share button to spread the cheers and create links to this email on popular social networking and bookmarking size like Facebook, Twitter, and Digg.'

Marly Silverman

PANDORA SPONSORED XMRV Lecture Segment 1: Background, overlapping conditions, viruses

noreply@blogger.com (agentforchange) — Mon, 21 Dec 2009 05:55:00 +0000

This video is part 1 of 12. The lecture presented by Dr. Nancy Klimas was sponsored by P.A.N.D.O.R.A. The wonderful edited video series was recorded and edited by ME-CFScommunity.com (Daniel Moricoli). English transcription of the video series were coordinated by PhoenixRising.com. Diagnosesupport.com is working on translations to Deutch, Spanish and Italian. This is true “Patient-driven and physician approved™” collaborations. 1Voice, 1Community, 1Cause™

The complete series can be seen at P.A.N.D.O.R.A.'s youtube.com page at http://www.youtube.com/user/pandoranet

Community, Collaboration, Unity can drive worthwhile solutions for CFS-ME Patients & Other Neuroendocrineimmune Illnesses

noreply@blogger.com (agentforchange) — Fri, 18 Dec 2009 17:00:00 +0000

I am posting a reply that I provided earlier to one of my blogs at me-cfscommunity.com (PANDORA's Follow up Letter to the U.S. Secretary of Health - Need your number one request/input NOW). Because of technical difficulties (and or operator error) my corrections did not come through in the page layout. In order not to lose what I wrote I had to redo it and in the process I realized that my response should be in a blog format, which I also did on my blog OneAgentforChange, but due to health challenges could not publish promptly,

Now, once again I am bed-bound with a CFS-ME relapse coupled with a head cold that is making me miserable, because I know I could be spending time with my son Lawrence today going over my mother Zuzu,(of blessed memory) belongings and shooting the breeze and probably arguing about national and international politics. It has become a "family tradition" but one that can be annoying at times, partially because as a mother, I will have the urge to pull rank.

But I am digressing, and I need to go back to the reasons why you are reading this blog post now and they have plenty to do with the title above.

The conversation or reply ensued out of PANDORA’s request for ONE single request/suggestion that patients could provide to PANDORA for a follow-up letter to the U.S. Secretary of Health regarding the plight of our community of suffering. Here is then the revised response from me:

“Khaly's comment/suggested request is one that ALL of the organizations advocating for CFS-ME have requested in one form or the other for quite sometime. The overall vote of confidence in the U.S. Government ability to do the "right thing" sunk to its lowest ever. In my last testimony to the CFSAC Oct 29-30-2009 testimony.pdf, I suggested the incorporation of the 3R's - Reconciliation, Restore and Resolve in the future approach of government health agencies on CFS-ME specially after the XMRV virus findings. The patient community is an instrumental part of this process too. We need to keep the pressure on the U.S. Government to work toward solutions.

Roy's comment hits the jackpot. But PANDORA wants more. We want the Department of Health and Human Services, not just the NIH, to ensure that LARGE grants are disbursed. We want an embracement from the top of our government the acknowledgment that they are paying attention. No more hand-outs that are piece meal and are not targeting the huge task CFS-ME (and other NEI illnesses represent). It is the key that is missing in the whole picture.

We know for a fact that there is a huge disconnect in Academia halls in the U.S. (large and small medical colleges) that completely disregard NEI illnesses. We have witnessed that year after year. The professional disregard for NEI Researchers in their own college campuses. The disregard for our national community's plight in the cities and states where these academic institutions are located. In Dr. Ken Friedman's video, his long- successful career as a medical professor is being jeopardized because his superiors are not keen on the issues. Unfortunately, this pattern of disregard and consideration towards fellow college professors and researchers who are teaching and or researching on NEI illnesses have been a huge stumble on the science side. It reflects harshly in the patient community. It is the reason why patient's quality of life suffers and we languish. Many of us are survivors, but we are not thriving and leading well deserved productive lives.

I say no more! We need to collectively communicate to academia that they too are responsible for the scientific push for NEI illnesses. No more hiding behind the fact that research grants are not coming down the pipeline because of health government officials. The officials who are serving now in our government have led careers and or were trained in the same academic halls that we have found no solace or embracement. If the prestigious universities with medical and research centers do not entice, teach, educate and make it part of their curriculum NEI illnesses as a must have, do you think that the NIH, CDC or others will out of the goodness of their structure take the initiative?

As far as our community, I think it is healthy to have respectful disagreements among patient of all background and personal experience. It is the diversity of our backgrounds that fuel the debate and the conversations. But we need to be UNITED as an ENTIRE community. I mean every single organization large or small, perfect or imperfect, so our UNITED VOICES can be heard by concentrating on the issues that WE ALL AGREE!

As the founder of PANDORA I have some personal experience on the difficulty of managing a non- profit advocating for the HUGE NEEDS of our community. It is a HUGE task followed by the lack of HUGE FINANCIAL RESOURCES that lead us to MISSING OPPORTUNITIES, which would have provided better results had we the capability to seek, participate or simply identify these opportunities. The reality is that NO SINGLE ORGANIZATION can do it all. We the individuals representing patient's organizations need to be humbled of this simple fact, and yet we need to maintain a motivation factor- i.e. a certain amount of pride for the work that we do. If we don't share it with you, with potential benefactors and with our health agencies our successes, we are not doing part of the job and part of our mission.

This is a HUGE country with geographical, regional culture, diversity and political ideologies that all combined make it even more difficulty to tackle the hurdles we have in our community of suffering. Simply put, and as I see it, PANDORA's weaknesses as an organization is complemented by other organizations strengths. I can share several good example with you: The New Jersey CFS Association sponsored the first and only CFS-ME Physician's Consensus Manual (a project of Dr. Kenneth Friedman and Dr. Oleske and many others). PANDORA realized the importance of the manual and we provided a grant to another organization in Spain- the Fundacion... and the collaboration of Dr. Ferran J. Garcia Fructuoso brilliantly translated by Cathy Van Riel, a colleague patient advocate from Spain.

The grant we gave for a medical student scholarship to the Vermont CFIDS Association is a milestone for the work the association has been done over the years.

We also provided a scholarship to a student diagnosed with any of the NEI illnesses that we embrace at DePaul University – Chronic Illness Initiative

In 2009, we provided a grant to Dr. Gordon Broderick's work in Canada, which will complement the grant he has received from the CFIDS Association (CAA).

Another good example of the other way around: The CAA about two years ago provided us with a grant so we could have a booth at a large women’s business conference in Tampa. It was a huge success! On the day of the conference I met with the mayor of Tampa and I met with the President of the University of South Florida – Dr. Judy Genshaft leading to a constructive conversation about NEI illnesses. Our booth was one of the busiest ones in the conference hall!

Other great examples: PANDORA and the Wisconsin CFS Association have been providing support to a family in Buncombe County, North Carolina dealing with the issue of Factitious Disorder by Proxy leading to 23 other organizations and hard core advocates signing off on the letter we sent to the Governor of North Carolina. PANDORA's strategical partnership with ME-CFScommunity.com: we are all benefiting from this endeavor. Our collaboration with the IACFS-ME for the presentation of one of their outstanding (raising the bar considerably) conferences in 2007 leading to an even better one in Reno, Nevada in 2008. In 2008 we provided a grant to the IACFS-ME Association honoring Dr. Nancy Klimas which in turn was used to honor two upcoming Junior Researchers on CFS one being Dr. John Chia.

Dr. Nancy Klimas this year donated a one hour consultation for our organization to auction off on E-Bay. The auction provided us with a wonderful donation to our bank account. She also donated her time for a lecture on XMRV virus that we sponsored in partnership with me-cfscommunity.com and the local empowerment support groups.

Across the country, I often hear of treating physicians and researchers collaborating with the local organizations catering to our community. Dr. Kenneth Friedman is one individual who has actually broken the record in community involvement. All you have to do is Google his name and pages of information reflects his involvement in the IACFS-ME, PANDORA, Vermont CFIDS Association, Wisconsin CFS-ME Association, CFSAC and much more.

More recently, the strategical partnership with the Lanford Foundation-Lifelyme™, for the special project- The NEI Center(tm), in New Jersey, which is leading to other important collaborative initiatives in New Jersey and beyond.

For the past two years, If my mind does not fail me, PANDORA has advertised in the conference's booklets sponsored by the New Jersey CFS Association. In turn this year, they provided us a donation grant for our work on Advocacy.

PANDORA in addition has provided donations to the ME Association in the UK as well as to the National Fibromyalgia Association and the CAA for their Advocacy work. Strategic collaboration with the American Pain Foundation created a huge training base for advocates across the country for several organizations fighting on your behalf on pain issues.

So what is the underlining message that I want to share with you? Is that as patients, as researchers and physicians, as organizations, and as government officials, we need to stop the finger-pointing and substitute it for constructive criticism. We need to give until it hurts to the several causes that are pushing for major changes in the areas that are meaningful to you individually, as well as for the overall community. We need to do so, WITHOUT diminishing the work of others. As the representative of an non-profit organization, I need to continue to think outside of the box, and if we know of an organization that can do the task that PANDORA does not have, or the skills or personnel to do it, we will collaborate with them with great pride wishing for their continuing success.

We need to continue to debate, but without name calling and lack of respect. Yes, be angry, be vocal, but let's channel the anger to constructive and positive initiatives. Calling for the take-down of one organization or another is not constructive, questioning the organization for its performance it is. Calling for the replacement of an individual is quite reasonable, but only when we provide strong facts supporting the request. "Demonizing" organizations or individuals are extremely counterproductive to the overall community. Criticizing for lack of performance based on the facts is a valid approach that will lead to great changes, but personal attacks towards the humanity of others, is in my book and a position that is shared by many others in our community, as not the best way to ensure common sense, harmony, and the long-term and profitable negotiations, which will result in benefits for the overall community.

Today is the first day of Hanukkah, a day that Jews all over the world celebrate as the triumph of light over the darkness. Jews are taught that we should not curse the dark, we should simply light the candle. As a Jewish woman and applying the same thought to our plight as NEI patients, we will bring the light to our communities through collaboration, sharing, creating bonds and remaining loyal to what unites us all.

Happy Hanukkah! May this entire December holiday season bring you peace, health, tranquility, wealth and may it provide the unity and the cure for what ails us, and for what our community needs it. May we be blessed with these sweet gifts for a lifetime.

HAPPY HOLIDAYS!

1 Voice, 1 Community, 1 Cause™

P.S. : This is not a prepared statement i.e, it is without any editing by PANDORA's editor. Please excuse any grammar or typos. This is simply a soulful message from me, an individual with CFS-ME (and related illnesses), who understands the health challenges individuals with NEI illnesses experience. But ONE, who also is engaged in the process of finding solutions that will bring quality of life for a forgotten patient community.