CFS Congressional Oversight Hearing ASAP

Discussion in 'Fibromyalgia Main Forum' started by illroy, Oct 7, 2009.

  1. illroy

    illroy Member

    This is the first section of a longer article I have been writing for some time about advocacy. I suggest you read it all on the CFS knowledge center web site. It should be easier to read and the links are clickable. This is the URL for the post there:

    ME/CFS Congressional Oversight Hearing

    Preparation for an effective type of congressional oversight hearing to investigate the federal response to CFS was canceled by the CFIDS Association (CAA) in 1992 soon after it assumed responsibility for national advocacy. The hearing would have taken place in 1993. That fact is almost unknown. If it had happened it would have changed the history of ME/CFS. This is what happened then and why one needs to be done now.

    I was the volunteer lobbyist for CFS in 1991 prior to Tom Sheridan. That fact is also almost unknown, but not important. Most people do not have a thorough understanding of lobbying and its relationships to advocacy, Lobbying is not rocket science, but it is often so poorly reported that most people have a wide variety of misunderstandings about it. It's one of the reasons why the US has such a large number of lobbyists.

    There is a type of congressional oversight hearing that is sometimes referred to as a congressional investigation. These are different hearings than the yearly appropriations subcommittee hearings that cover CFS. Those hearings are brief with short Q&A (questions and answers, but often questions and acting) by federal officials. This is a web page with a basic explanation of the various types of congressional hearings:

    The committees that can do oversight, investigation, and authorizing for ME/CFS are the House Energy and Commerce Committee and the Senate Committee on Health, Education, Labor, and Pensions (HELP)

    These committees have the power to subpoena witnesses and compel them to testify under oath and penalty of perjury. The canceled hearing was going to be before the House Energy and Commerce Committee's Health Subcommittee.

    In 1992 and until recently Henry Waxman (CA) was the chairman of that Health Subcommittee. Sometimes a hearing can take place if the chairman alone wants it to happen. More often it is more than one committee member, especially one strong supporter. When the hearing was going to take place in 1993, Mike Synar (OK) was our strong supporter on the subcommittee, and Ed Taylor had done an excellent job getting that support. Frank Pallone (NJ) is the chairman now, and New Jersey has excellent ME/CFS advocates.

    The people that would testify were being chosen. Walter Gunn wanted to testify about the CDC's failures. We could have, for example, had Brian Mahy from the CDC answering questions, including where the CFS money was really going. NIH officials such as Steve Strauss could have been included as well. The heads of the HHS, CDC, NIH, and NIAID could have been called. We also would have had our very best people testifying for us, including advocates, researchers, and doctors.

    Government officials can and must be held accountable, but the balance of powers in the United States government has to be used effectively. The executive branch must be overseen by the congress and the courts. Brian Mahy reportedly lost his position at the CDC only after Rep. John Porter, then Chairman of the House Labor HHS Appropriations Subcommittee and our strong supporter in Congress at the time, insisted that he be brought by the head of the CDC to his hearing to answer questions about the funding scandal. If that 1993 hearing had happened, the CDC officials would almost certainly not have lied under oath at it about those funds and continued misusing the money.

    At the present time probably the only practical way for a hearing like this to happen soon is if the CAA makes it happen. Kim McCleary was the executive director then and knows about this. The CAA has lost most of its members and much of its respect among experienced advocates since then. Advocacy has failed badly and people have lost faith in the CAA's ability to represent patients and make progress in Washington advocacy. If they want to regain some of the respect they once had, and rebuild their membership and support, here's what I suggest they do.

    Engage the entire community by asking for input on exactly what the community wants done and work closely with the IACFS/ME. This would include who should testify, what should be in their testimonies and submitted for the record, and what questions should be put to the government officials. The strongest and most relevant facts in the history of ME/CFS should be used. Use everything possible to make the absolute strongest case for congressional oversight hearings and action. Make an all-out effort to get it covered in all possible media. Ask for help from the community to make it all happen. Build a coalition by including people, not alienating them.

    The ME/CFS community knows there is a very serious risk that the course of the CDC alone could create an additional body of published papers to "prove" that ME/CFS is "all in your head" (or any other terminology). Funding for good science in the public and private sectors will be further impeded. Access to treatments will be further denied. This has already happened in England. It could take a long time to turn things around even after good science proves it wrong. The federal bureaucracy is very resistant to change.

    The upcoming CFSAC meeting is going to have increased advocacy, including from the IACFS/ME. That's great and hopefully it will cause some changes, but the advisory committee has been largely ignored no matter how good its work has been. In order for advocacy at the federal level to be continually effective it must be integrated and coordinated. The attention is now necessarily on the CDC, but the NIH needs far more focus, especially for their dominant role in the world in funding extramural research that should go to places such as the Whittemore-Peterson Institute.

    This congressional action needs to be done as soon as possible. It should have been done in 1993. Many things have changed since then. Opportunities have been lost and people have become discouraged. However, there is far more good published science, and more outstanding doctors and scientists to represent us. There is a record of proven malfeasance and lack of action at the government agencies. There is more consensus in the ME/CFS community about what needs to be done. There is a very good case to be made to Congress to convince them to have hearings and take action. If the CAA is not willing to take a much stronger and far more effective stance in Washington advocacy, it is time for other groups to step up and provide competent leadership. An inclusive coalition might work well.

    [This Message was Edited on 10/25/2009]
  2. Spinetti

    Spinetti New Member

  3. skeptik2

    skeptik2 Member

    You have explained this so well, and i couldn't agree with you more.

    Problem is, only 5-6 people here really care; they are either too sick
    or too involved in what is happening to them today to even think about
    tomorrow. Of course, that's m.e.

    Right now, I am so burned out reading all the messages about the
    CFSAC meeting, I cannot think.

    I called for either a class action lawsuit or a congressional inquiry in
    my remarks to the CFSAC in May. I am appalled that the CAA sent
    a post via co-cure for patients to tell their stories, just this past week.
    At a time like this, when we are all killing ourselves getting remarks
    together for this next committee meeting. I agree the CAA is dropping
    the ball; no wonder they are dropping enrollment in their org. They seem
    to have given up and are joining the 'cfs is not m.e.' bandwagon. Maybe
    the 'newbies' will fall for it, but not us 'oldies', that's for sure.

    I feel many are waiting to see what happens at this CFSAC meeting, and
    feel sure many of us will try to effect the appropriate oversight action if
    that is needed then. Give us some time, ok?

    Please repost this after the meeting if no positive action is taken to
    ensure appropriate research is begun immediately, with Reeve's empirical
    tyranny thrown out.

    Strength to all

  4. zeowa

    zeowa New Member

    I can't say that I got every detail of the message, and I'm not entirely clear on what I can do to help right this injustice, but I am determined to do whatever I can to help. I was an advocate for years before I got sick and I am just the right kind of person to piss off because I won't take it lying down (or, if I've got to lie down, I'll reach for the phone). Please continue to post any pertinent info if you have the time.

    Again, thanks.
  5. Spinetti

    Spinetti New Member

    I made it through the long version. What a story!

    Thanks for telling it.
  6. illroy

    illroy Member

    Thanks. I just wish it would have worked out better over the previous many years. Heavy sigh.

    The CFSAC meeting dynamics just changed BIG-TIME. Maybe Kim will try to do competent advocacy to maintain position. Sorry, I'm feeling rather bitter and cynical today.


    Edited to clarify that I meant that the CFSAC meeting dynamics would be affected by the XMRV news.

    [This Message was Edited on 11/04/2009]
  7. Khalyal

    Khalyal New Member

    Thanks for bringing all of this up so we can better understand what has happened in the CFS arena. It's been a comedy of tragedy in such a horrifying way. Wherever we need to go from here, whatever we need to do to bring this around, I'm on board.
  8. jasminetee

    jasminetee Member

    I appreciate all the hard work you've done Roy. What a story! is right.

  9. QuayMan

    QuayMan Member

    Well done on this, illroy.
    And well done on your activist work nearly 2 decades ago - I had no idea (apologies if I should know and have forgotten).

    I very much agree with this (i.e. the problems the CDC could cause):

    The ME/CFS community knows there is a very serious risk that the course of the CDC alone could create an additional body of published papers to "prove" that ME/CFS is "all in your head" (or any other terminology). Funding for good science in the public and private sectors will be further impeded. Access to treatments will be further denied. This has already happened in England. It could take a long time to turn things around even after good science proves it wrong. The federal bureaucracy is very resistant to change.

    Hopefully something will happen at the CFSAC meeting and then people might have free energy to do something with this.
    [This Message was Edited on 10/10/2009]
  10. illroy

    illroy Member

    I answered you on another group Tom, but in case somebody else is interested I will repeat it here. you sure do get around in cyberspace. :)

    You didn't miss seeing this in the past. What I wrote about is mostly unknown.

    The XMRV news may change many things, including the dynamics of the upcoming
    CFSAC meeting. I don't know what will happen now, but things are getting
    interesting again. It reminds me of the early days of advocacy when there was
    hope in the air. This time we don't have to rely on Kim and the CAA.

  11. illroy

    illroy Member

    I recently found an article on the CAA web site that I want to comment on along with some present and future issues.

    Before the CAA took over Washington advocacy it was primarily done by Ted Van Zelst and I, and Barry Sleight before me. Joan Sutherland was doing some good things too, and I was involved in that as well. I think we were all doing it in a diplomatic manner. I guess I can only speak in absolute terms about myself, but I know I always did. Ted was always the model of diplomacy too from the beginning of CFS advocacy.

    I even took a trip down to Charlotte to talk to Kim about temporarily toning down their very strong criticism of the NIH because I wanted to get the research centers grants, among other things. At the time the NIH research was intramural and done by Steve Strauss. She did leave something out of a Chronicle that was soon to go to press, and I appreciated that.

    The article is written by Vicki Walker who was not hired until later, so I assume that this viewpoint came from Kim.

    "In 1992 when the CFIDS Association took responsibility for leading national CFS advocacy, the relationship they inherited between federal scientists and CFS advocates was frosty, at best. Earlier advocates, taking a cue from AIDS activists, were strident in their justified anger over the government's disregard (and even animosity) toward CFS and the patients who suffered from it. The unfortunate side effect of this well-intentioned strategy was a breakdown of communication between federal health agency staff and activists, greatly reducing the ability to learn from one another."

    I fail to see any good reason to write things like that, especially since it was written recently. I had very carefully "defrosted" the NIH, and we got 3 research centers. It certainly wasn't enough, but it was progress and a welcome change in direction. I also wrote in the long article above that something happened at the advocacy meeting in Albany that "refrosted" that relationship.

    I've seen remarks that criticize everyone that brings up the past problems, as if it's all in the past and doesn't matter anymore. The problem is that the past has shaped the present and the problems remain and will continue in the future unless fundamental changes are made. The management and leadership deficiencies have caused huge problems over the years that have crippled the movement. Other experienced people have written about problematic patterns of behavior at the CAA. I don't feel like repeating them here now. Things like this are not fun to write : but I think they need to be said. The deaths and vast amounts of misery that could be alleviated demand it. I've already stated my preference for new leadership.

    The new retrovirus research has created some major advocacy opportunities. It provides the necessary aspects for a greatly expanded government response to a disease. I hope this is used wisely. Advocacy has gotten to a very bad state of affairs. The new lobbying firm that the CAA has retained should know how to make use of this and I hope good advice is taken this time.

    This will be a case of research driving advocacy instead of vice versa. I really hope claims are not made otherwise. People see through continual spin and political slogans. Patients may lose substantial IQ, but not all common sense.

    For some reason I've been thinking about my several great's grandfather Captain John Parker of Lexington Green fame. Just about everybody knows of the battle there that began the Revolutionary War and the quote from him "Stand your ground. Don't fire unless fired upon, but if they mean to have a war, let it begin here." There is more to the story that I find interesting. He wasn't wounded, but he saw his cousin shot and killed with a bayonet when he couldn't retreat. He rallied more men to fight the British when they came back through town; known as Parker's Revenge. Then he went on to Boston and the siege that later became the battle of Breed's Hill and Bunker Hill. The little-known fact is that he had to go by wagon because he was too sick with tuberculosis to ride a horse and he died four months later from that. That's on my mother's side of the family that I've always considered the mellow side. The other side is Dutch and stubborn as hell if necessary.

    I guess I've been thinking about ME/CFS and some of the British...

  12. Khalyal

    Khalyal New Member

    I think the CAA is actually more proactive lately about reading some of these message boards and realizing that sentiment against them may be having a bit of a groundswell. This is probably a result of their Facebook presence, where posters like Erik, myself and others are bringing these issues up in their own format..."why did you do this? why didn't you do that?"

    So it's possible that this recent statement of theirs is designed to show that their approach is right and we shouldn't listen to the oldtimers. This would fit with their stance that the history of this disease is all but irrelevant.

    Truly, where we are today is a direct result of history. THe fact that the CAA is in studied denial of this fact is further represented by their posting yesterday of a paper that Dr. Vernon did earlier in the year, referencing EBV as a possible cause of CFS. This on the tail of the stunning XMRV announcement. What is really freakish about the current posting of Dr. Vernon's EBV paper is that THE WHOLE REASON we got that stupid name is because the Tahoe study CLEARLY showed that this is not chronic EBV. This happened in 1988, and made Steven Straus apoplectically upset, as CEBV was HIS pet theory.

    If we know our history, then we can see how subvertive it may seem for the CAA to post this paper referencing EBV as a potential cause of CFS....because the CAA is fully aware of the history of this disease.

    This is how it can SEEM like CAA is on our side, because they are touting viral possibilities over childhood trauma potentiation. But they are bringing a poodle to a dogfight. Fluffy and pretty, but useless in the situation at hand.
    [This Message was Edited on 10/15/2009]
    [This Message was Edited on 10/15/2009]
  13. Khalyal

    Khalyal New Member

    is too important to let it keep sliding back to page three!
  14. illroy

    illroy Member

    The XMRV has been a bit of a distraction. :)
    Now, about some of those British-
    The British New Scientist magazine has an online article about MXRV. In this article the first person they quote is Simon Wessely. Their last article on Wessely and CFS drew hundreds of protest responses. He has been involved in CFS from way back, but I don't know the whole story. Also in the article- "CFS is characterised by cramps, sleeplessness, weakness and headaches."
    There are 86 responses so far. (the article will eventually require a subscription to view) As one person begins:
    "Simon Wessely Can Shove His Psychological Factors Right Up There, Next To Where His Head Is Stuck.
    Strap in. It's a long 'un."

    [This Message was Edited on 10/17/2009]
  15. jasminetee

    jasminetee Member

    This is a very important thread. Lets try to keep it bumped up.

    Thanks for that link illroy. I read that article the other day and didn't like it. I'm interested in reading all the comments now.


    [This Message was Edited on 10/17/2009]
  16. skeptik2

    skeptik2 Member

    BUMP, PLZ.....

    Important history here!!!

  17. spacee

    spacee Member

    In all my years with CFS, I didn't know about this...probably cause of my cognitive problems. I could have just fallen off my chair about your work and what happened in 1993.

    Just seems like the gov't does not respond to "anger". Like the FDA shut down the Ampligen trials because of the angry demands from patient who had received it to make it available.
    I was told my the owner of the co. back then, that was the reason they shoved it to the back burner.

    Well, friends, I guess we need to sit up and speak in a "professionial" way but never surrender. Never give up.

    Thanks Roy and all so much for this info and input.

  18. Khalyal

    Khalyal New Member

    has been the driving force behind psychologizing ME (CFS) in the UK, along with Peter White. Peter White is apparently Reeves' BFF.

    Wessely has said,

    “The description given at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ” (In: Psychological Disorders in General Medical Settings, ed: Sartorius et al; Hogrefe & Huber, 1990)

    “Blaming symptoms on a viral infection conveys certain advantages, irrespective of its validity (and) is beneficial to self-esteem by protecting the individual from guilt and blame” (In: Post-Viral Fatigue Syndrome. ed: James Mowbray and Rachel Jenkins. John Wiley & Sons, 1991)

    “It seems that ME sufferers prefer to feel they have a ‘real’ disease – it is better for their self-esteem” (Pfizer Invicta Pharmaceuticals 1992:4-5)

    “Patients with inexplicable physical symptoms are generally viewed as an unavoidable, untreatable and unattractive burden” (Brit J Hosp Med 1994:51:8:421-427)

    “Somatisation sufferers consume vast amounts of health resources for little benefit” (Clin Exp Allergy 1995:25:503-514)

    “The term ME may mislead patients into believing they have a serious and specific pathological process. Several studies suggest that poor outcome is associated with social, psychological and cultural factors” (Joint Royal Colleges Report on CFS, October 1996)

    “ME has never been fully accepted as a real condition, says Simon Wessely” (The Guardian, 21st April 1998). Note that the World Health Organisation fully accepted ME as a real condition in 1969 and continues to do so

    “It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering” (BMJ 2003:326:595-597)

    “Science is indeed socially controlled, and so it should be” (The Guardian, 1st March 2003)

    “Functional somatic syndromes include chronic fatigue syndrome” (Rev Bras Psiquiatr 2005:27:3). This is noteworthy, given that Wessely is on public record as stating: “I don’t classify CFS as a somatoform disorder” (Wessely Answers Questions. 10th April 2002: CAME).

    This was taken from a document written by Malcolm Hooper and Margaret Williams. To see the entire (long) document, go to
  19. Khalyal

    Khalyal New Member

    If we are to become XANDers, we need to make sure we NEVER allow these people to infiltrate and psychologize us again.
  20. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    ok, folks. Second time I saw "XAND" What does it stand for? Will this be the new name for our disease?