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 may be easier for some people to read there, and all the links are clickable. This is the URL for the post there:
http://cfsknowledgecenter.ning.com/forum/topics/unknown-cfs-congressional
Edited to add that the rest of the article is now later in this thread, direct link:
http://forums.aboutmecfs.org/showth...versight-Hearing-ASAP-amp&p=128282#post128282
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.
Roy Snow
http://cfsknowledgecenter.ning.com/forum/topics/unknown-cfs-congressional
Edited to add that the rest of the article is now later in this thread, direct link:
http://forums.aboutmecfs.org/showth...versight-Hearing-ASAP-amp&p=128282#post128282
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.
Roy Snow
