Where have all the efforts of activists gone in the last two decades? Why do I see Peter White being defended by the founder of the best web forum I know of for ME/CFS? Why are fellow sufferers on the eve of 2010 still arguing for exercise in ME/CFS, without any stated understanding for the MANY, not tiny minority, who have been destroyed again and again by attempts at even careful exercise programs, or simply do not have the energy reserves to do even the mildest exercise and still be able to bathe, or eat? Have none of you had the same awful experiences that the majority of ME/CFS patients have had with doctors and family? And if you are lucky enough not to have, have you no sense of impropriety in ignoring the majority who have?
I admit I don't know alot about Peter White and I have purposefully steered away from learning about CBT but when Dr. Klimas, Dr. Friedman, Dr. Jason, Dr. Natelson and other doctors state that when behavioral therapies done correctly are often helpful in improving one's quality of life - then I definitely do listen and I do trust them. It also helps that my personal experience with Guptas amydala training, a course called the EST training that I did many years ago, meditation and other activities have indeed been VERY helpful to me. Notwithstanding the fact that I still can't exercise they have definitely improved my quality of life. I defended the CAA's decision to put all sides of the equation on their treatment brochure and I still do.
Why is he now echoing the CDC's method of excluding ME from CFS although this is the Phoenix Rising ME/CFS forum?
First of all please don't paint me as 'echoing' something the CDC says. I'm not echoing anything the CDC says and its unfair to put me in that context. I would note that Dr. Cheney, Dr. Bell, Dr. Klimas and other professionals (as well as myself) are members of the Fair Name Campaign and do not support trying to carve out ME from CFS. They unanimously thought that was a bad idea. I believe the attempt to differentiate myalgic encephalomyelitis from CFS is doomed to failure and a waste of time. They (and I) believe CFS should be referred to as ME/CFS.
Why are fellow sufferers on the eve of 2010 still arguing for exercise in ME/CFS, without any stated understanding for the MANY, not tiny minority, who have been destroyed again and again by attempts at even careful exercise programs, or simply do not have the energy reserves to do even the mildest exercise and still be able to bathe, or eat?
Certainly some recognition of the problems that bad exercise programs have caused should be forthcoming but those not the exercise programs that I or Dr. Bateman or the CAA or Staci Stevens or even Dr. Lloyd advocate. No one should be destroyed by 'careful exercise' programs because they preclude exercise that increases ones symptoms. Given the fact that both Staci Stevens - who should know -and Dr. Friedman state that most ME/CFS patients are doing TOO MUCH more recognition should certainly be placed on that fact. Of course knowledgeable practitioners include both exercise programs and envelope training - they should go hand in hand.
You know, there are a lot of folks from the UK on this forum. They have written in here again and again about their horrible experiences and frustrations with the UK's scandalous "psychosomatic" approach. They're all over this forum, describing their fight against the Peter Whites of this world. Are you telling them to take him more seriously? To consider his opinions, no matter what ideology created them? I can't believe I'm hearing this, here of all places. And, I fear, neither will they.
I think there's probably some real learning to do on my part and the CAA's part on Peter White. Tom did show me some awful statements Dr. White made. It was probably (certainly?) a bad idea to include him in that pamphlet.
And I cannot let you get away with saying "honestly I trust their judgment over any one patients". First of all, Teej was not speaking as one patient only. She was speaking, as I do, from around twenty years of learning how this illness has affected other patients, many of whom have been ignored even by some of the "good" doctors you mentioned.
Teejkay was objecting to the CAA mentioning some of the treatments (acupuncture) that didn't help her at all. But I know of people who have been helped by acupuncture. I know people who've helped by herbs. Just because she hasn't been helped by those treatments doesn't mean they shouldn't belong in the brochure - that was where I was coming from.
Second of all, doctors are not deities.
I ought to know too. I had this for decades - which suggests that they're not very good at treating it.
If Nancy Klimas was not quoted out of context there (and I think one of us should contact her about it and show her this pamphlet), then she is ignoring the full experience of the majority of ME/CFS patients with exercise. Believe me, it can happen, even to one of the "good ones". Thirdly, I hope to God you were not including White in the list of doctors you would trust over any one patient. I don't think you did, but it was not clear.
No I wasn't but it does bring up the point that more has to be made of the fact that most people are doing too much as it is and more emphasis should be put on envelope therapy - a good point. It was Gupta's amygdala retraining technique that convinced me that I should do substantially LESS physical activity.
To the CAA - at least some of you guys know about the UK psych lobby and about White. Your lovely spotlight on him, beaming photo and all, cannot be explained away... Someone in the CAA wants to "rehabilitate" him for American consumption. I can't for a second believe most of you even knew about this, least of all approve of it. But once you do, it is your responsibility to fix this. We are growing tired of asking and pleading. I welcomed jspotila and bjsmith to this forum. I was really glad they were here - I still am, for now; I really thought we had a chance to eventually make the CAA into something all of us could be proud of. But now comes a simple, seemingly easy breezy test. It's time for action - now. If you can't disregard a man who thinks your own disease, your whole organization, is based on psychosomatic delusion, then something is terribly wrong, wouldn't you agree? It would make the CAA an existential joke.
Maybe Peter White does believe ME/CFS is a psychosomatic delusion. I don't know but saying that his short piece makes the CAA into a existential joke means relegates Dr. Peterson, Dr. Klimas and all the other physicians on that brochure - who believe CFS is an real disorder - to meaninglessness. To turn the CAA into an 'existential joke' because you disagree with one section of their pamphlet doesn't make sense.
Sure the CAA should have more recognition of the problems in the UK but almost all - in fact ALL the well known physicians that treat this disorder in the US that I can think of (Peterson, Cheney, Klimas, Bateman, Enlander, etc.) - treat this as a legitimate, physiologically based disorder. And the vast amount of the CAA's literature on CFS (as well as their research program) is devoted to that interpretation of CFS.
And no, for anyone who seems confused, this is not all about a pamphlet. Removing Peter White's contribution to that CME (or the CME's contribution to Peter White?) won't fix the problems that have been growing surrounding the CAA. This merely represents the last straw. People (not just me) have suffered the impact of years of rotten physical rehab advice and psychological abuse from medical professionals. Our own advocates should damn well not be contributing to that, neither via bad information nor a reluctance to convey some very good information.
Of course by saying this you're ignoring all the efforts by the CAA on the contrary including their highlighting of Dr. Peterson's work ('Man of Steel'), their many, many articles of physiological abnormalities in this disease -and their stellar research program that brought forth the metabolic dysfunction in this disorder, that uncovered endogenous retroviruses lthat may be at work, that is elucidating brain mitochondrial dysfunction in this disorder, that is uncovering the vascular dysfunction that may be present. Maybe those aren't important to you but they are very important to me and they override problems with Dr. White's blurb or the CAA's former work the CDC on the CME package.
So what is the ultimate outcome of your inability to see the big picture here? Of your unremitting focus on the few scattered mistakes that you're using to portray this organization. All that other good work - which we desperately need disappears - sacrificed on your altar of correctness. Yes, the CAA probably did make mistakes and Peter White was the wrong person to have on that brochure and Dr. Klimas probably should note more that lots of people need to start doing less (she actually does frequently!) but the best way to deal with that is through education not withdrawl. Its always easier to demonize or paint a black and white picture but its not accurate. The CAA cannot be summed up by Dr. Whites little blurb on that photo or the fact that they participated in the CDC's CME program or X, Y or Z.
I want you all to know that I have no intention of offending you, but this had to be said in an attempt to get you to understand the full gravity of the situation. I urge you to check out the information in the threads on Peter White and the psychologization of CFS. Another eye-opener I can suggest is this set of videos on YouTube (actual training video for medical students about how to deal with ME/CFS patients):
http://www.youtube.com/watch?v=bvArXvqAMiA
Looks like some good education. I have a feeling that the CAA will NOT be putting Peter Whites picture on anything anytime soo.
