Hi Koan and others,

I just woke up and found some things on this thread and on the connectivity thread I am going to comment on later (mostly positively ) but this puzzled me too, and considerably so as well:

Quote Originally Posted by Koan View Post
Now I'm beyond confused. If Peter White holding forth on CBT & GET remain, what on earth was changed?

Here I quote Peter White from: http://www.cfids.org/sparkcfs/clinical.pdf

Controversial Treatments Show Results
Two treatments that are controversial among some patient groups may actually represent real advances in the treatment of CFS. Part of the problem is that they’re poorly understood. The following overview may help demystify these often demonized therapies, which research suggests can help a majority of patients.

Cognitive behavioral therapy (CBT) is about examining how your thoughts, feelings, actions and symptoms relate to one another. This enables you to understand the link between them, and then try out new ways of breaking those links. A cognitive behavioral therapist helps you to understand your illness and change the way you manage it. In between sessions you try out new ways of managing your CFS, with mutual feedback on successes and failures at the next session. CBT starts with you setting a baseline of activity and then gradually increasing what you do in order to reverse the cycle of either inactivity or "boom and bust." Other CBT techniques include mutual problem solving of stress and sleep quality improvement. The aim of this therapy is to help you manage your symptoms more effectively and to do more.

Graded exercise therapy is all about gradually increasing your physical activity in order to reverse the inactivity and physical deconditioning associated with CFS. Usually, you see a physiotherapist who helps you work out a basic activity routine that you can cope with even on a bad day. Then together you plan to gradually increase the amount of physical activity or exercise you do. The gradual increase takes into account your symptoms, fitness and current activity levels. The aim of this therapy is to help you do more and feel better, since we know that exercise/ activity helps to reverse many of the physical consequences of CFS.

Since 1996 there have been eight pub- lished studies of these two treatments, compared to various other treatments. These studies were reviewed by four independent groups of scientists, who all concluded that active rehabilitation with CBT and GET are the most promising of all treatments in adult patients able to attend hospital clinics. Approximately 6 out of 10 patients rated themselves as much better after either CBT or GET compared to before treatment, which was significantly higher than the proportion improving with the comparison treatments. About a quarter of patients were rated as recovered from CFS after utilizing CBT, a rate maintained after five years. This year a further study showed that CBT was also helpful in treating adolescents with CFS. No study has shown any pattern of harm caused by either treatment.

By Professor PETER D. WHITE

Is this not the contentious material? Is this not Sparks? Is this not Peter White preaching CBT & GET? Is this not what we were told was now gone? Maybe I misunderstood. What am I missing?

ETA: And, yes "kinesophobia"! Does the CAA really preach that we have faulty illness beliefs in this blatant fashion?


I just downloaded the "clinical.pdf" and whereas I could not find 'kinesophobia'm in that, I did find what Koan quotes, including a - hypocritically condescendingly looking down sort of - picture of said gentleman.

It may be this "clinical.pdf" has not been cleaned up yet but what professor Peter D. Write writes just is not so AND he knows this AND I know it. What he claims is witchdoctory and quackery and dangerous for patients and should be removed ASAP, and that should take very little trouble indeed: Just excise it. (I am a psychologist. White's claims about CBT are just utter BS. And he knows it or else he wouldn't be a professor. Really!)

Also, I should like to point out that the "clinical.pdf" is written "By Marcia Harmon, Director of Communications, CFIDS Association of America", which starts, above the above byline, with this


Clinical Care for CFS

Because chronic fatigue syndrome is so complex, it can be challenging to treat, creating a cycle of frustration for patients and physicians alike. Here, thanks to the assistance of a panel of top CFS physicians, we offer some insight into the best practices to help break this vicious cycle.

By Marcia Harmon, Director of Communications, CFIDS Association of America

After which, on page 9 of 12, one finds the major psycho-quack Peter D. White, photo, quote, title, function and all, just as Koan quoted... comprised, one must assume from the above introduction, by the CAA Director of Communications, amongst


"a panel of top CFS physicians"


So I am with Koan here: This should be excised asap; it is simple false and the guy saying it sported also as if he is part of "a panel of top CFS physicians " knows it is false, and Marcia Harmon should know and could know for a looooong time that it is false.

Also - not being a US-citizen, and not knowing much about the CAA - I can see why my American friends with ME writing on PR are worried and puzzled.

Please remove this man and his lies and his picture from "clinical.pdf". If I were to come to know a DUTCH ME-organisation would have this or similar material in their Dutch counterpart to "clinical.pdf" such an organisation could and can expect a flame-war from my site.

It just is TOO RIDICULOUS, in the order of including Martin Luther in a major Vatican publication as a founding father of the Holy Roman Catholic Church. Really!

Maarten (VERY puzzled).

P.S. On a more personal note, writing as a European intellectual:

I do find the tone, style and presentation of this "clinical.pdf" quite dumbing down. If it were directed to me as a psychologist, in the manner of "Dear Colleague, please find enclosed "clinical.pdf" for medical and psychological professionals - Regards, CAA" (and a psychologist is what I am among other things) indeed - especially in view of White's inclusion - I would suspect some kind of spoof, in view of its tone and format.

However... I may well be missing things here, and I have noticed before that in US academic life (" ' life ' " ? ;) outside the US top universities (Harvard, UCLA, MIT etc.) (!!) a dumbed down prose style has become acceptable these last two or three decades in would be academic prose that in fact seems to address persons with major cognitive challenges...

But maybe it's just how things tend to be written and done in the US (outside the US top universities, that is) . Maybe American persons with degrees like to be addressed as so many Fred Flintstones? Ah well... as I said, I've just woken up, and maybe I am just a tiny bit naive about what the latest generations of US bred & educated average academics can handle, prosaically and intellectually... (but I sure hope I am mistaken...: "Against stupidity even the Gods battle in vain" - Friedrich Schiller)

P.P.S. Side note: I find this morning that I cannot easily access PR: it is very slow or doesn't come up because of slowness regularly. Server problem perhaps?