War and Peace Hey folks, So many of you have done an outstanding job on this thread already. I think Mithriel, among others, explained the exercise issue in ME/CFS beautifully...better than anything I've read from any of the famous CFS docs or the best the CAA has printed. Island finn posted a great little summary from an Australian ME group on another thread, too. I've posted this elsewhere, but it's more appropriate here...For those who still feel the terms CBT or GET are appropriate, I urge you to watch this four-part video, which features the amazing Trudy Chalder and Mrs. Simon Wessely, who like her husband is also a psychiatrist who denies that ME exists (it's great that they found each other): http://www.youtube.com/watch?v=bvArXvqAMiA They have so corrupted the meanings of traditional psychological terms and of the terms CBT and GET that none of them are useable anymore. Furthermore, as others have said, even the "good" versions are inappropriate for many of us. Perhaps hearing all the others here and elsewhere on this forum, those of you who were defending the promotion of CBT / GET in CAA literature or anywhere else now understand that there is a good deal more to your own disease than you previously understood, and more to it than the CAA seems to understand, and that a HUGE overhaul of patient and doctor and institutional education is long overdue. That's partly what I meant by the "last straw" comment, Cort. It's not like all of us have been silent til now, it's that we have been ignored, or that nobody bothered to ask. In the UK there is a group called the 25% ME group. I mentioned them in another thread and gave bjsmith from the CAA their web address, etc. Just google 'em. They're a national charity group dedicated to providing information, outreach, and support - including financial and physical assistance - to ME patients who are housebound or bedridden. They are a small group, with nowhere near the resources of the CAA (the comparison is laughable). There is no group like that in the entire United States. The CAA rarely mentions people at this level of disability - estimated in the UK at 25% of the ME population, hence the group's name - in its literature on exercise. And it makes NO mention of those of us who can do no exercise at all - not in its literature to doctors, certainly! (And you don't have to be bedridden or housebound to be completely exercise-intolerant, as others have said here.) Cort, you stated that: If I understand this statement correctly, you're saying that everyone with ME/CFS can do some level of exercise? But if exercise itself is precluded by a patient's health, then, obviously, even a careful exercise program will be harmful. I am frankly shocked that you were not aware of this. But more shocked that people in the CAA were not aware of this. Both you and they, as advocates who actually have a voice and a capacity to influence others, have greater responsibilities for what you say. To you I ask that you please research before you write on this topic or you are doing damage - indirect or not, I don't think the distinction matters - to people who are desperately ill. I recommend you start by contacting the 25% ME group for information. To the CAA I say the same thing but with greater urgency, and add that 'research' means first inquiring of your own constituency, and surveying patients of CFS doctors, to find out the truth. (If they say they already did that, then I hate to say it but they've done a lousy job!) Back to Cort: You need to re-read what I said, and not reinterpret my words. I even went back and highlighted the argument! Here it is again: Peter White is a psychiatrist who fervently believes and promotes the idea that our disease is totally, completely, and utterly psychosomatic. No viruses, no cytokines, no nothing. He has described those doctors you mentioned - Peterson, Klimas, etc - as 'enablers' of our delusion that we actually have something wrong with us. He lobbies doctors and government health policy makers to discourage patients from getting help from support groups or advocacy groups (like the CAA) or from seeking specialists or even laboratory tests to see if they do have something physically wrong with them. So, if the CAA leadership knew who Peter White was but still decided to go ahead and endorse him to OUR FUTURE DOCTORS, what would that make them? The key word there is "knew". You could argue that the people at the CAA responsible for that brochure, and for general and continuing oversight, all have no idea who White is. I don't want anyone that ignorant holding a position of that importance in my only major advocacy group. Do you? Others have and will continue to point out how impossible it is that this was done out of sheer ignorance. Someone had to know. That suggests that someone at the CAA is on the wrong team. (NOTE: I did NOT say the WHOLE CAA, I said "someone".) But I'm not even dealing with that.... WHEN the leadership of the CAA is made aware of this shocking contradiction, if they do not immediately remove that brochure and check all their other literature to make sure there are no other "boners" out there and (perhaps) issue a retracting statement intended to reach doctors who have already seen the brochure....then yes, the CAA, as defined by its leadership, would be in a state of absurd self-contradiction. That's how I meant it. I did NOT say that the good things the CAA as a whole has been responsible for would be negated. But how could we take them seriously from that point on in this scenario? Sorry to have kept pounding at that point, but I think you were failing to see the significance of that "little mistake". There are mistakes, and then there are specific actions that betray either subversion or major organizational incompetence. If the NAACP sent out brochures to Congressmen on the issue of affirmative action that included a sidebar by David Duke explaining that he is unjustly 'demonized' and really does have some good ideas on how to reduce inner city crime... that wouldn't be a mistake, nor sloppiness; that would mean there's something very wrong back at the NAACP. (uhh..for you folks across the pond or in Canada, David Duke is a white supremacist who became a Louisiana state representative in 1989. Yes really!) I hope after reading all you've read since you wrote that you realize what a confused statement that is. And I hope that you now see the real big picture - that far more people with this disease are far more debilitated than you or the CAA ever realized. That's a HUGE part of the picture you were missing -- bigger than you or me, bigger than the CAA. That's what most of the arguments about CBT and GET are actually about. That's why for many of us this brochure was not a minor detail, not one of a few scattered mistakes, but the last straw after years of a very simple reality being ignored by an organization of vital significance, and by the medical establishment at large. See why it was such a big deal that this was a CME -- a release to educate doctors? I know that you are passionate about defending the CAA, and I understood your reasons as you explained them. But I really hope from this debate -- which is healthy, folks, and has to be heated at times when whole lives can be ruined so easily -- you and others have come away knowing more about this horrible disease that, oddly enough, unites us. The CAA is important, but we need you more than they do, Cort. I could really use your help in telling them about me, and about the many others they clearly aren't aware of. Please use that determination to spread this larger awareness of the disease that seems to have escaped even some of our most prominent doctors. That's only a request, of course; I would never demand of you more than you are physically capable of doing.