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:
http://en.wikipedia.org/wiki/United_States_congressional_hearing
The committees that can do oversight, investigation, and authorizing for ME/CFS are the House Energy and Commerce Committee
http://tinyurl.com/dhxq65 and the Senate Committee on Health, Education, Labor, and Pensions (HELP)
http://help.senate.gov/./index.html
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.
http://tinyurl.com/mvdohw
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.
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The rest of this is fairly long. My apologies for that, especially to brain fogged patients.
1) Personal history
2) Early Advocacy
3) Washington
4) CFIDS Association Takes Over Advocacy
5) Burnout
6) The Uncertain Future of Advocacy (please read this part if you skip the others
7) Additional Web Resources
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Mark [Iverson]also told me [in 1989] that he originally wanted to name their group the Myalgic Encephalomyelitis Association, but that he was outvoted.
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The next day we had a meeting of the expanded Public Policy Advisory Committee (PPAC) and finally developed a comprehensive public policy agenda. Although that was good, there was a major surprise. When Tom Sheridan, who was leading the meeting, started talking about the oversight hearing, Marc announced that it was not going to happen now. Kim obviously at least knew about it. I didn't object at the time because I thought it was just a temporary postponement, and we were rushed for time to complete the agenda. In retrospect, I wish I had objected and offered to pay the extra $9k it was going to cost. Even though it would've taken most of the money I had left, that was of comparatively little importance and I have regretted it ever since. I kept thinking they would eventually realize how much it needed to be done. It was a key part of the strategy and the primary reason in the short term that I had wanted the CAA to take over advocacy. Tom Sheridan had done similar hearings for AIDS. They have to be done carefully and with adequate preparation. I didn't feel up to doing the task by myself.
In a masterfully Machiavellian move, the CDC had released their ridiculously low prevalence figures of 3000-10,000 just before the conference. It effectively killed national press coverage. IMO, it has never recovered from that. I was very relieved to hear Lenny Jason's talk about their prevalence study that indicated over 800,000 patients over the age of 18.
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5) Burnout...
I later got a letter from Kim asking me if I wanted to be on the Board of Directors of the CFIDS Association. I sent a fax back right away and said I would like to and wanted to do more. Ted Van Zelst had gotten a similar letter and sent me a copy of his reply to them saying that he wanted to be on the Board of Directors also. I didn't get any answer to my fax. Months later a new CFIDS Chronicle arrived with new board members listed. Neither Ted nor I were on the large new board, but at least one person with no real experience was. Marc had dubbed Ted "The Father of CFS Advocacy", but even he hadn't been put on the board. All the experienced Washington advocates had been pushed aside.
That was the last straw for me, and I dropped out then. I wanted advocacy to succeed and didn't want to harm the cause, so I didn't do anything. Maybe I should have, but I didn't think it would do any good. I have wondered how many did the same over the years. I have been bitterly disappointed with the failures in advocacy since then. I've had people tell me I'm the most laid-back and tolerant person they know, but I have my limits. I was once a very enthusiastic supporter of the CFIDS Association, but just couldn't tolerate any more. It may sound melodramatic, but I had decided to become deeply involved in advocacy even if it killed me. ME/CFS made my life very difficult; advocacy wrecked it, and it's never recovered. Since then I've gone through periods of not following advocacy closely and just trying to forget about it. Writing this makes me feel the same again. I guess it's sort of an advocacy PTSD. I'd like to think I missed something, but far more I wish advocacy hadn't failed so badly.
There was an attempt to get an oversight hearing on the Senate H.E.L.P committee in 1999, but it apparently failed due to lack of adequate preparation, strategy, and timing.
I'm certainly not the only one that has been alienated. In 1991 there were 23,000 members. Today there are reportedly a few thousand. My clear understanding was that no one hired as an Executive Director would ever have a vote on the Board of Directors, and that policy would be made by a board consisting mostly of patients. Kim is now President and CEO, is on the 10 member board and has a vote. Marc resigned in 2001 and has a letter posted on Co-Cure which among other things describes how much control Kim really has.
http://tinyurl.com/ldt4lv The next chairman of the board also resigned along with 3 other board members. http://tinyurl.com/nfvdbq
Although I thoroughly dislike writing about this subject, in all good conscience I have to say I think
it's time for Kim to step aside. I liked her when she started. I think she was doing her best, and she put in long hours; so much so that I was worried about her burning out and the effect it would have on the whole CFS movement. I talked to her about that, and so did Marc. However, it was clear to me that she didn't have the necessary leadership skills for the job, and I thought she would be replaced eventually. It's a difficult job, and administrative skills are not enough for that position. Progressive and dynamic leadership is essential for building a successful organization. Alienating so many people is not leadership.
After 18 years, it should be clear that it is time for someone new. Far too many have been unnecessarily alienated, and the ME/CFS movement has been severely impaired because of that. Some people have spoken out for a change, I'm sure that other knowledgeable people don't speak out about it. I think it's time for that reticence to change. Countless people are living with miserable symptoms and are subjected to prejudice and abuse. Many have died. Some are on this little known list:
http://www.ncf-net.org/memorial.htm. I know of 5 others not on the list that chose to end their lives. Loyalty to Kim compared to how much better someone new could do has to be considered. I would like Kim to tender her resignation and volunteer as an adviser.
If a thorough search for a new head of the CAA was done, I'm sure that someone could be chosen that could re-energize advocacy and the other goals of the organization. Someone with an M.D. or a Ph.D. would have instant credibility. Problematic government officials would have to face someone new when they try to get away with business as usual. However, it is not my decision to make and I don't want it to be focused on and become too much of a distraction from the paramount goals of advancing advocacy. It's up to Kim and the Board of Directors. If she thinks that no one can replace her, she can recuse herself and the other members of the board can vote in a secret ballot.
http://www.cfids.org/about/board-of-directors.asp
The members could be contacted individually.
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6) The Uncertain Future of Advocacy
Effective advocacy for ME/CFS is essential. There has always been the hope and assumption that good science will change everything. I agree that it eventually will, but it won't be that easy. Prejudices don't just disappear, and the dignity and respect that the patients, caregivers, doctors, researchers, and advocates deserve won't come easily or quickly.
Some recent changes at the CAA look good. However, a characteristic of a poorly functioning organization is making changes only in response to crises, then if the crisis passes going back to business as usual. Many critical problems continue. The lack of adequate grassroots development to cultivate new congressional supporters is very discouraging. It's absolutely essential.
For example, Rep. David Obey's (WI) aide for the appropriations subcommittee was one of the good ones I worked with. Her predecessor was reading a previous years report language from the bill and realized that what she had recently gotten was CFS. In one of the more sardonic CFS tragedies, she later killed herself. Dave Obey is now chairman of the subcommittee and also chairman of the full appropriations committee. He is one of the most powerful people in government now. Wisconsin has a very good support group that should be worked with to get his support in Congress.
The upcoming CFSAC meeting should be packed full of activists, yet the CAA is not adequately promoting attendance.
The fact is that the CFIDS Association now controls advocacy in Washington. It's just the way the system works. Even if they have competition, there is a need for speaking as one with the same message on Capitol Hill. Lyme disease advocacy has been crippled for years because their groups haven't worked together, although recently it appears that may be changing. The National Organizations Responding to AIDS (NORA) coalition formed that was able to get groups to resolve their sometimes bitter differences and effectively speak as one on policy on Capitol Hill. Maybe something like that will have to happen with ME/CFS, if that is ever possible.
