One Agent for Change

noreply@blogger.com (Marla Silverman) — Thu, 20 Dec 2012 16:50:00 +0000

Llewellyn King's Dec 15, 2012 article on the Stamford Advocate on the FDA approval meeting of Ampligen dated Dec 20, 2012.

Llewellyn King host and producer of
the "White House Chronicles" on PBS

Llewellyn King, host and producer of the "White House Chronicles" on PBS wrote an article at the Stamford Advocate regarding the FDA potential approval of Ampligen (Hemisphererx Biopharma) during today's FDA Arthritis Committee review of the Hemisphere Biopharma submission to the FDA to approve Ampligen to treat myalgic encephalomyelitis (ME), which is also known in the U.S. as chronic fatigue syndrome (CFS).

In his article you will find the positions of Drs. Andrea Kogelnick, Dan Peterson, Derek Endler and personal assessments of ME/CFS patients who clearly benefit while on Ampligen and the downward spiral once they are off the drug.

According to Llewellyn King "When patient activists face the government in various hearings, it is painfully asymmetrical, it seems to me. The sick tell sad stories of suffering, loss of love as well as health, while the government people talk abstractly about patient loads, international disease definitions, allocation of resources and appear self-important rather than appalled at the suffering that passes before them.

The patients turn to the government for recognition, but the government turns them into a statistic."

noreply@blogger.com (Marla Silverman) — Thu, 20 Dec 2012 15:59:00 +0000

FDA Review of Ampligen Happening Right Now at the Arthritis Advisory

As I type this I am listening to Dr. Lucinda Bateman followed by Robert Miller, a patient advocate colleague of mine of many years. He is a living proof of how Ampligen works for many ME/CFS patients. The direct link to watch the entire event is:
https://collaboration.fda.gov/aac122012/

Tina Tidmore will be proudly representing PANDORA and the new team of PANDORA led by Lori Chapo-Kroger, the new president of this outstanding organization. As a founder of PANDORA, and as I have been advocating tirelessly for a drug to be approved for ME/CFS for more than a decade, my heart and my soul are once again being tested today.

I am posting below the entire comment by Dr. Kenneth Friedman's to the FDA committee regarding the reasons why Ampligen should be approved by the FDA today. No more waiting! No more excuses! The time is now! ONE VOICE, ONE COMMUNITY, ONE CAUSE (TM).

Written testimony of Kenneth J. Friedman, Ph.D.
Submitted December 6, 2012
For the FDA Arthritis Advisory Committee Meeting of December 20, 2012 NDA 22151

Kenneth Friedman, PhD

The announcement by the Food and Drug Administration that its Arthritis Advisory Committee is meeting on December 20, 2012 to discuss the new drug application for Ampligen, for the treatment of patients with Chronic Fatigue Syndrome, sends the wrong message to those ignorant of Chronic Fatigue Syndrome (CFS) and raises the eyebrows of those with even glancing knowledge of the illness. Those ignorant of Chronic Fatigue Syndrome might assume that the illness must be related to arthritis. Why else would the Arthritis Advisory Committee be considering the application of a drug dealing with CFS? While CFS is a multisystem illness, and there are at least four current case definitions by which to diagnose the illness, not one of those case definitions lists arthritis, or arthritis-like symptoms, as one of the features of this illness. The decision to place the fate of Ampligen and CFS patients, some of whom have been successfully treated with Ampligen, in the hands of the Arthritis Advisory Committee must have alternative reasoning.

Those of us who have even a glancing knowledge of CFS, know that CFS has been treated like the plague-ridden buttocks of chronic diseases. Neither the National Institutes of Health or the Centers for Disease Control and Prevention (CDC) will conduct a proper epidemiological study to estimate or confirm actual number of patients who have CFS in the United States. Indeed, the CDC, who changes case definitions of the illness apparently on whim, has varied the number of patients from 800,000 to 4 million – a more than fourfold difference – without any concern for the accuracy of its numbers. But upon the assumption that there are 1 million CFS patients in the United States, you would think that the National Institutes of Health (NIH) would have a program dedicated to researching the illness within the walls of at least one of its institutes. Not so. There is not one, research laboratory within the entire NIH studying CFS. And as for the CDC, despite its having a laboratory devoted to CFS research in its Chronic Viral Diseases Branch, there are no recent studies emanating from it dealing with the etiology or pathophysiology of the illness. Hence, our concern is that the FDA is following the lead of its sister agencies of choosing to ignore, or worse, undermine, its responsibilities to CFS patients and those who attempt to assist them.

While the FDA announcement speaks of this application as being “new,” in fact, it is not. The manufacturer of Ampligen, a small pharmaceutical company named Hemispherx, has appeared before the FDA before, only to be turned away and ordered to perform more clinical studies. Without the resources of a large pharmaceutical company, it has conducted clinical trials to the best of its ability in a patient-cost-recovery program. If the object of clinical trials is to prove drug efficacy, the trials have done so: some CFS patients when given Ampligen, improve dramatically. Take their Ampligen away, they relapse. Reinstitute the Ampligen, they improve again. Not all CFS patients improve, but if the CDC can vary its estimate of the number of CFS patients by varying its CFS case definition, the fact that not all patients improve suggests that the case definition of CFS needs to be improved, or that subsets of CFS patients exist, and that Ampligen works on a specific subset or, perhaps, even several subsets.

The second consideration of the FDA in determining whether or not to award approval of Ampligen use for CFS patients is the drug’s safety when administered. To our knowledge, CFS patients either improve on Ampligen or they do not. We have not heard of any patient dying as a consequence of Ampligen administration. We have not heard of any severe or life-threatening reaction to the administration of Ampligen. If there are adverse reactions to Ampligen, we must presume them to be minor. Given the risk-benefit ratio of Ampligen administration, the patients have spoken: Many have moved themselves and their families to geographically disparate regions of the country in order to gain access to treatment. Without the treatment, they languish in bed; unable to care for themselves much less interact with their families.

So why then is the Ampligen application before the Arthritis Advisory Committee? Two possible reasons come to mind: (1) The FDA does not have an advisory committee better equipped to deal with this application, or (2) The prejudice against CFS, its research and its treatment is so large, that the FDA feels that the application would have a less prejudicial review before an irrelevant advisory committee rather than a committee more familiar with CFS. Perhaps, the FDA, like the NIH, does not have an existing advisory committee with the appropriate expertise to competently process CFS applications and considers the formation of such an advisory committee too costly. The National Institutes of Health has been notorious for having inappropriate reviewers sit in judgment of extramural, CFS research applications only to reject those applications for specious reasons generated by ignorance. Institutional and peer prejudice against CFS, CFS research, and the brave investigators who attempt to investigate this illness have been called to this nation’s attention at the NIH, Chronic Fatigue Syndrome State of Knowledge Workshop (http://www.vtcfids.org/images/Elephants%20in%20the%20Room%20As%20Delivered.pdf). The failure of the federal government to act on the deliberate closure of CFS laboratories at universities and the termination of CFS researchers has led to yet another closure of a university research and clinical laboratory dedicated to CFS within recent months - proving the pervasive, poisoned environment for CFS treatment and research within the United States. How could the attitudes and culture which cause and permit universities, literally from coast-to-coast, to close CFS laboratories and prevent their faculties from engaging in CFS-related scholarly activity not infiltrate federal advisory committees?

Quite possibly, the timidity of the FDA to approve the use of Ampligen for CFS patients, as well as its timidity in the approval of a variety of other applications under its consideration, is a response to lessons learned in the past. When the FDA received the application to market thalidomide in the United States, after it had been marketed by 14 pharmaceutical companies in 46 different countries, it was considered to be a rather straightforward application. However, little was known about its side effects, and the drug affected experimental animals differently than humans. The FDA delayed approval. Subsequently, reports from Australia and West Germany indicated that thalidomide was associated with cases of human limb deformities and other congenital abnormalities. The drug was removed from all world markets and the application for approval in the United States was withdrawn. A national health crisis had been averted by stringent and slow adherence to FDA, drug approval rules.

However, subsequent to its initial removal from the market, thalidomide has been shown to be an effective therapeutic agent in leprosy, tuberculosis, sepsis, and cancer. Thalidomide may be useful in

the treatment of macular degeneration, in combating lesions in the mouths and esophagi of AIDS patients, and in the treatment of multiple myeloma. Consequently, in 1998, the FDA approved the use of thalidomide for the treatment of leprosy under a program (System for Thalidomide Education and Prescribing Safety [STEPS]) with severe restrictions and limitations. The message: Even for thalidomide, the FDA has weighed the risks vs. the benefits, and has decided to cautiously approve thalidomide.1
There is no evidence to suggest that Ampligen is a thalidomide. There is no evidence to suggest that are as severe, potential side effects to the use of Ampligen as there are to thalidomide. Yet, for some CFS patients, the consequences of being denied Ampligen therapy are as severe and possibly worse than living with the side effects of thalidomide.2 Some CFS patients without Ampligen have no lives whereas with Ampligen they do. If the FDA can approve thalidomide for patient use in the United States, can there be any reason not to approve Ampligen?
1 http://www.nyu.edu/classes/jaeger/thalidomide.htm 2 http://ffdn.se/web/england-1/

Dr. Friedman's credentials are impeccable. As a former expert member of the CFS Advisory Committee under the authority of the U.S. Secretary of Health, Dr. Friedman has the knowledge, the expertise and the experience to comment on why Ampligen must be approved for ME/CFS treatments.

So far the questions are being pertinent from the FDA panel to the individuals representing Hemisphere Biopharma and the stakeholders who are there present as well. I had to take a quick break from watching the event and when I came back Dr. Bateman was answering a question on the issue of Cognitive Behavior Therapy (CBT). Her response (not verbatim) was that CBT is not a medical treatment but a coping mechanism tool for patients whose lives are in disarray due to the illness challenges.

If you are a ME/CFS patient or a loved one or a caregiver, please contact the FDA and let your voice be heard:

Contact Information

Yvette Waples, PharmD
Center for Drug Evaluation and Research
Food and Drug Administration
10903 New Hampshire Avenue
WO31-2417
Silver Spring, MD 20993-0002
Phone: 301-796-9001
Fax: 301-847-8533
E-mail: AAC@fda.hhs.gov

FDA Advisory Committee Information Line
1-800-741-8138 (301-443-0572 in the Washington DC area)
Please call the Information Line for up-to-date information on this meeting

Here is the link to the calendar information on Dec 20, 2012 (today's meeting), which will end at 5 pm this afternoon.

http://www.fda.gov/AdvisoryCommittees/Calendar/ucm324972.htm

ONE VOICE, ONE COMMUNITY, ONE CAUSE (TM).

"Us and Them" is Phasing Out

noreply@blogger.com (Marla Silverman) — Sun, 17 Jun 2012 06:36:00 +0000

(Last guest blog from Tina Tidmore about the June CFSAC meeting.)

I've watched local, state and national politics, as well as the first "Survivor" show to see how people gain power to win against those who disagree. The ones who have extreme views tend to be the loudest and get the most attention. They pull at those closer to the middle to bring them to the extreme view. As they pull, the bring the people in the middle away from those with opposing views. The end result is two opposing groups who are angry and throwing stones at each other. It becomes a power struggle of who can get the most support and they try to squash the opponent by shear force.

In these situations, I notice that the majority is often in the middle on the issue. But they don't have strong feelings, so they are silent. What's missing is the dialogue. If the ones who are close to the middle on both sides start talking with each other, then they may find they almost agree. But the power struggle prevents this dialogue, where a solution and movement takes place.

In the history of the CFSAC meetings, the patients were on the other side of the table, creating an "us" feeling. (Exception is the one patient advocate on the committee.) The committee members, were "them." So we had an "us" and "them" set up.

The June 2012 meeting was different. The CFSAC administrators arranged for a dialogue from teenager patients and committee members. Talking to each other is better than throwing stones. Although, a few stones may be needed to get their attention. But openness is needed to listening with the heart. And if the person is in defensive mode, they aren't being open.

They got another patient advocate on the committee, a doctor who is an anesthesiologist.

They are working on the by-laws for organization reps to be on the committee, to be included in the discussions of the committee. (This may prevent the urge to yell out during the meeting.) This is great.

While it's great to have more patients participating in the committee discussion instead of just preaching, pleading or hurling at them, care should be taken to not become dependent on government agencies to do their work. The organizations must keep independence so they never become beholden to the government, even in a partnership agreement. They must always be advocates whether they are in the peanut gallery or sitting with CFSAC members as part of the committee. They must never fear losing power or position and fail to speak. This would be a betrayal. But it doesn't have to be on the outside. Advocacy does not mean adversarial. Advocacy can be done while sitting and talking with those who disagree.

If you see ME/CFS patients or organizations reps talking to some who you disagree with, don't think it is because they agree with them. Think they are trying to persuade them in a less formal way.

The CFSAC administration is also trying to get ME/CFS out of the fringe. The researchers and clinicians, evidently, are not mainstream enough to have credibility among others. The suggestion is to get representatives of physician organizations involved in the process for forming new criteria. We faced another conundrum: to get the new definition accepted, need to bring these associations of ignorant, possibly biased clinicians, to the table to be part of the discussion and the decision. But, they may mess it up if they have any say in the process.

The idea discussed at the June 14 meeting is to educate them first. Then have them be included in the process. Scary, isn't it. But, as long as ME/CFS researchers and clinicians are considered "out there" by their peers, then we won't change these associations and the physicians who are members. We must include these associations if we are to get ME/CFS mainstreamed. We must remove the "us" and "them" attitude and actions. We need to get them to carry our message for us, for our clinicians and researchers do not have the credibility as the leaders of these associations. I really appreciate the FDA ex-officio bringing this out in the June 14 meeting.

A wise ME/CFS patient explained a common way change happens.
1) Folks get mad and take to the streets with their demands.
2) They go too far and demonstrations turn violent
3) After the mess is cleaned up by authorities, the suits (more moderate and professional-acting folks in the movement) meet with the opposition to work out the changes.

This is what I have seen at the June CFSAC meeting. It's good we are now past stage 1, 2 and now are at stage 3.

Another thing I learned for sure from this CFSAC meeting is that I definitely have a southern accent. All doubts have been removed. I was reminded of it often. So, whether by radio interviews or at CFSAC meetings, I will use my southern drawl to persuade. And if I have to, I will publicly and boldly correct the ignorant and the biased - bless their little hearts.

The Train is Moving

noreply@blogger.com (Marla Silverman) — Thu, 14 Jun 2012 04:37:00 +0000

(Another guest blog from Tina Tidmore)

For years, the CFSAC seemed to be stuck in stagnation. Ex-officios seemed not too interested, nor did they appear creative. Committee members felt much frustration. The hardest part is getting the train to move from inertia. A lot of fuel is needed to move such dead weight into action.

However, two years ago, the XMRV claims provided the fuel that got that CFSAC train going. It's slow, as it leaves the station. The question is, who will answer the call "All aboard"? So, what movement is being shown in the government agencies as revealed in the June 13 CFSAC meeting?

The FDA has 8 applications. Two are from private companies and the others are from investigators.
Lipkin study on XMRV will be published within a few weeks as a "white paper" and then as a peer-reviewed paper.
Some CFSAC members also criticized the CDC toolkit.
CDC has made some changes to their website and will be doing more. They will be adding a section on pediatrics.
The CDC is looking for ways to continue a dialogue with patient organizations. They have met with many in the last year.
The CDC participated in a pathogen study, found nothing, although it was just plasma.They recognize that it is not conclusive on the pathogen question. They are working with 7 well-known ME/CFS physicians to do research on their patients. They discovered an abnormal response in the brain of ME/CFS patients in research that was presented as abstract at a conference.
CDC is creating a CME course for clinical care that will be finished on June 20 and one on CFS and sleep that will be available on July 8. They worked with some well-known ME/CFS physicians to do this. The CDC will be working with the Center for Advance Professional Education company to come up with a curriculum for medical school.
The Assistant Secretary of Health Dr. Howard Koh is wanting to improve communication with patient organizations and have their representatives on the committee.
The FDA has centralized where the CFS applications go and have educated those who review them. They received the CDC toolkit, but they also received the IACFS/ME Physician Primer.
Koh arranged for an ad hoc committee of government agency reps. to have meetings on what they can do for the patients with this illness. A national webinar and a national patient registry have been discussed in those meetings.
Live videostream of the meetings returned, despite the continued financial cuts in the DHHS.

Besides these progress reports, a new arrangement happened where a panel of patients had a dialogue with the committee. The committee members could ask these teenagers and a parent of an ME/CFS patient questions and the panelists could ask the committee members questions. As far as I can remember, this is a first and shows an openness to patient concerns instead of defensive posturing.

We all were very concerned with the new members, especially with the loyal and vocal Dr. Nancy Klimas, Dr. Chris Snell and Dr. Lenny Jason all leaving at the same time. However, these new members got a crash course today with a wonderful look at the biological findings in ME/CFS pediatric patients, as described by Dr. Peter Rowe. And they got to know the extreme injustice and suffering - not only from the disease but from an ignorant and uncaring system - as revealed in the moving testimony of some of the young ones and their parents. From some of their comments, I have concern about one, but the others are on board. That one, I think will come around. So, those who understand the illness are still in the majority. And they are speaking up too.

Tears flowed when the mother spoke of her daughters and the struggle to get the accurate diagnosis, and then find out the proper treatment and also make sure they get an education. As one slap in the face after another, or one injustice after another, the woman sitting to might right said, "Oh my God." And the woman sitting to my left said, "Oh God." Back and forth they went as the family's tragedy was told in all its gory details. Certainly, while we hear these stories again every time, CFSAC members must be reminded that this is not play. We are dealing with life and death here. The new ones need to know this and the old ones need to be reminded at every meeting.

Additionally, many patient organizations and patients signed a joint letter of concern with four primary objectives and a request to meet with Sec. Sebelius, Dr. Howard Koh and Dr. Nancy Lee. They can no longer say, "But the patients are divided in what they want." Not true. These many patients and organizations found areas where they agree and are pushing for that.

Importantly, the CFSAC members are considering endorsing the IACFS/ME Physician Primer and recommend it be distributed. How wonderful! Attorney Steve Krafchick asked, "Why invent a new toolkit when you have a primer?" Krafchick said the CDC physician toolkit is very superficial and the treatment section can be taken out.

noreply@blogger.com (Marla Silverman) — Thu, 14 Jun 2012 04:35:00 +0000

For years, the CFSAC seemed to be stuck in stagnation. Ex-officios seemed not too interested, nor did they appear creative. Committee members felt much frustration. The hardest part is getting the train to move from inertia. A lot of fuel is needed to move such dead weight into action.

However, two years ago, the XMRV claims provided the fuel that got that CFSAC train going. It's slow, as it leaves the station. The question is, who will answer the call "All aboard"? So, what movement is being shown in the government agencies as revealed in the June 13 CFSAC meeting?

The FDA has 8 applications. Two are from private companies and the others are from investigators.
Lipkin study on XMRV will be published within a few weeks as a "white paper" and then as a peer-reviewed paper.
Some CFSAC members also criticized the CDC toolkit.
CDC has made some changes to their website and will be doing more. They will be adding a section on pediatrics.
The CDC is looking for ways to continue a dialogue with patient organizations. They have met with many in the last year.
They participated in a pathogen study, found nothing, although it was just plasma.They recognize that is it not conclusive on the pathogen question. They are working with 7 well-known ME/CFS physicians to do research on their patients. They discovered an abnormal response in the brain of ME/CFS patients in research that was presented as abstract at a conference.
CDC is creating a CME course for clinical care that will be finished on June 20 and one on CFS and sleep that will be available on July 8. They worked with some well-known ME/CFS physicians to do this. the CDC will be working with the Center for Advance Professional Education company to come up with a curriculum for medical school.
The Assistant Secretary of Health Dr. Howard Koh is wanting to improve communication with patient organizations and have their representatives on the committee.
The FDA has centralized where the CFS applications go and have educated those who review them. They received the CDC toolkit, but they also received the IACFS/ME Physician Primer.
Koh arranged for an ad hoc committee of government agency reps. to have meetings on what they can do for the patients with this illness. A national webinar and a national patient registry have been discussed in those meetings.
Live videostream of the meetings returned, despite the continued financial cuts in the DHHS.

We all were very concerned with the new members, especially with the loyal and vocal Dr. Nancy Klimas, Dr. Chris Snell and Dr. Lenny Jason all leaving at the same time. However, these new members got a crash course today with a wonderful look at the biological findings in ME/CFS pediatric patients, as described by Dr. Peter Rowe. And they got to know the extreme injustice and suffering - not only from the disease but from an ignorant and uncaring system - as revealed in the moving testimony of some of the young ones and their parents.

Tears flowed when the mother spoke of her daughters and the struggle to get the accurate diagnosis, and then find out the proper treatment and also make sure they get an education. As one slap in the face after another, or one injustice after another, the woman sitting to might right said, "Oh my God." And the woman sitting to my left said, "Oh God." Back and forth they want as the family's tragedy was told in all its gory details. Certainly, while we hear these stories again every time, CFSAC members must be reminded that this is not play. We are dealing with life and death here. They need to know that even in America, the sick are being mistreated and they must stop it. These stories give them the motivation to act with courage.

In acting with courage, they will be imitating some of the patients themselves. As the first one on this day, first time for her to give testimony, spoke boldly, even shocking some in the audience. This slender and petite woman, did not shrink back or filter her words. Her trembling from the situation only showed how great her passion and courage was to stand up and declare a wrong has been committed.

The fears of the new members seem to be unnecessary as seen from some of their comments. During the breaks, I got to speak to some. One of the new members told me he thinks he might need to call some of his former ME/CFS patients to suggest helpful treatments he learned at the meeting. They get it, or they are getting it.

Even Dr. Gaillen Marshall, the new chair, made a striking opening remark. He acknowledged the concerns some had in his being in the chair's seat. He said he sees holistic, integrative and personalized care as being applicable to this disease. "Most diseases are syndromes," said Marshall. He said cancer, diabetes and others are one disease, but with subgroups. "Not all have the same symptoms, even if they are the same disease," Marshall said. While other diseases have seen much progress, ME/CFS patients are still waiting, still asking. After the very profound and deep comments from Matthew Lopez-Majano, Marshall said that they will not grow to be old and have the same disability as they do now with the disease. "There is a light at the end of the tunnel," he said.

Also, new in this meeting, many patient organizations and patients signed a joint letter of concern with four primary objectives and a request to meet with Sec. Sebelius, Dr. Howard Koh and Dr. Nancy Lee. They can no longer say, "But the patients are divided in what they want." Not true. These many patients and organizations found areas where they agree and are pushing for that.

Importantly, the CFSAC members are considering endorsing the IACFS/ME Physician Primer and recommend it be distributed. How wonderful! Attorney Steve Krafchick asked, "Why invent a new toolkit when you have a primer?" Krafchick said the CDC physician toolkit is very superficial and the treatment section can be taken out.

As this train starts to move. We must acknowledge that action is being taken. But that does not mean we don't need to give more fuel. It is still slow. We want - the situation demands - that the train move much faster. So, patients must still push for more improvements. But, as it moves, it will get easier and easier and the momentum will begin to help it along. To all, patients, organizations and government agencies and the CFSAC, have you answered the call. Are you on board?

You Are Not Alone

noreply@blogger.com (Marla Silverman) — Wed, 13 Jun 2012 03:02:00 +0000

(from Tina Tidmore, guest blogger)

As I sit in a hotel room, listening to 12 other people discuss their experiences with ME/CFS, I can't help but think of the other group of patients in cyberspace. The young people here share their stories of dealing with school, ignorant physicians and the joys of finally finding someone who can help. "That's just like what happened to me," is a phrase that shows a connection and an understanding that patients experience only with other patients.

Hearing a 16-year-old talk about ATP and coxsackie virus shows that ME/CFS is really its own world, with its own language and its own citizens and celebrities. Stories of different doctors and their treatments actually shows we are really like a family. Dr. Dennis Mangan, formerly of the NIH, said the ME/CFS researchers and patients together are like a family, maybe a dysfunctional one, but still a family.

Here in this room, we have no dysfunction. We have laughter, understanding, patience (and patients) and a camaraderie. Not only do we have the patients sharing with each other, we have parents who share their own trials and victories. One mother tells her story and breaks down in tears. Quickly, another mother comes to hug her. Ten minutes later, loud laughter fills the room. And we even have a little bit of strategy talk. It's like a large group of people who just discovered others of their kind.

What is most interesting to me is that these names who are attending are not the same names I see in the ME/CFS cyberworld. I asked some, why don't I see you on the message boards, Facebook, talking to other ME/CFS patients online. One young man said he has seen some improvements in his health. He still wants to help the cause, but for his own emotional, and therefore his physical health, he had to disconnect himself from the day to day drain. The ME/CFS cyberworld can be very demanding, even caustic.

I certainly understand that. After many battle scars, I left from doing government, crime and corruption coverage for the local newspaper. I told the publisher I was not ready for pasture, but I emotionally and physically could not be on the front lines any more. Evidently, the same thing can happen with ME/CFS advocates. We must protect our health first. And we should appreciate anything anyone does because we know it comes with a prices.

I also hear some of the young people who say that while they want to advocate for other young ME/CFS patients, they need to fill their time between the CFSAC meetings actually thinking about and doing (as they can) things that are not disease-centric. These young people want a life of school, friends, and more. So, as they can, if they can, their precious little energy is spent on living.

I posed the question of why there is such a difference in the ME/CFS cyberworld, with people daily looking for and commenting on the littlest nugget of news on the disease. The consensus is that some of our disease brothers and sisters have lost much of their life. Their friends and jobs and more have all disappeared. All they have is their computer screen, their window into the rest of the world, a world they can not participate in, only comment on. Frustrated, they want it to change. But without the creativity that some have found to do something constructive online, it only leads to anger. Thankfully, it seems to be less than it was a year or two ago. But that anger is still there.

My lesson from tonight's gathering in this hotel suite, and from what we see in the ME/CFS cyberworld, is that we must protect our emotional and physical health. If that means we are part-time advocates, then so be it.

Tonight, all of us - those in the ME/CFS cyberworld and all those who fight the battle at the CFSAC - can go to bed and rest with the peaceful knowledge that we are not alone.

Affordable Care Act, Supreme Court, May Awareness Month 2012

noreply@blogger.com (Marla Silverman) — Thu, 29 Mar 2012 17:05:00 +0000

The U.S. Supreme Court has heard by now both arguments regarding the Affordable Care Act. Many disabled individuals with NEIDs have both Medicare and Medicaid covering their healthcare (dual eligibility). The arguments for and against the Medicaid mandate expansion to the states about the ACA (Affordable Care Act) were presented by the U.S. Solicitor General Donald Verrilli Jr, and the opposing counsel by Paul Clement. Medscape has been providing daily recaps of the Supreme Court's proceedings regarding the ACA. Florida is the lead state joined by 25 other states. For many experts, the personal or individual mandate that requires the young, the old, the health and the sick to sign up for healthcare benefits creating a large pool is crucial to the affordability of the program. Other experts representing opposing point of view, are saying that the mandate is unconstitutional and therefore if the mandate is found unconstitutional the entire ACA program needs to be scraped.

Many experts have noted that this mandate was for many years embraced and promoted by the Heritage Foundation, a conservative think tank that embraces and promotes conservative values in the U.S. political arena. Many experts also have noted that a similar mandate is already in place in Massachusetts. It was signed by President hopeful and former Governor Mitt Romney. The program in Massachusetts is viewed by a large majority of experts who have been analyzing the program as extremely successful and has kept the affordability of developing the program in check.

PANDORA recommends to our members to become educated on these important issues. The ACA has answered some of the concerns patients have had to deal with for a couple of decades. No more pre-exisiting conditions, no more caps on life-time coverage. If one is disabled and cannot afford insurance one can join a special insurance pool. Children up to 26 years old can also be kept on the same insurance medical plan of their parents regardless of going to college or not.

This new access to medical insurance through ACA has in fact neutralized some of the harsh reality that the overall patient NeuroEndocrineImmune diseases (NEIDs) community faces. The NEIDs patient community has been consistently and often penalized by the medical, scientific and government ignorance of how NEIDs are to be treated. There is also a lack of serious concern leading to a complete lack of priority from the Department of Health and Human Services in the past 3 decades, with no difference whether there is a Democrat or a Republican in the White House or a Congress that is either to the right or to the left of our political spectrum. The harmful effect trickles down to the National Institute of Health, CDC, and other federal government agencies that complement care and quality of life for U.S. citizens are minimal in terms of addressing 3 decades of abandonment and lack of political will from our government officials to fix these serious problems.

The lack of priority by our federal government regarding NEIDs, then trickles down to the state, municipal and county levels. It crosses over academia causing lack of interest in the science of NEIDS. The lack of physician training and robust scientific research prevents even the basic level of medical care to be provided to NEIDs patients in every state. The cost of ignorance is higher than the cost of treatments that would benefit the overall NEIDs patient population in the U.S.

As a citizen of this great country I urge you to learn about the issues and make your voice count.

You owe to yourself to win your future. Neither PANDORA, nor you, and nor I can change the past. However we can change the future. Join us as an Advocate Extraordinaire™ during May Awareness Month in 2012. Speak up and stand up for the NeuroEndocrineImmune disease you are stricken with loudly and clearly. Support PANDORA and the other hardworking organization serving the NEIDs community in the state where you live and create change. Join the member organizations of the Coalition 4 ME/CFS and the Coalition 4 Fibromyalgia and they will show you how we can all work together across state boundaries toward a comprehensive national policy that will benefit our entire community.

All of our collective voices, as ONE Community, One Voice, One Cause!™

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

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

Click on the link here to find out more

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 (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — Wed, 16 Jun 2010 04:12:00 +0000

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

noreply@blogger.com (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — 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 (Marla Silverman) — 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'