Exaggerated claims about treatment effectiveness

[PaulUK]

A lot of doctors will tell patients with Chronic Fatigue Syndrome, and also those with FND that Graded Exercise Therapy (where exercise is gradually increased in small increments, usually guided by a physiotherapist or occupational therapist) and Cognitive Behavioural Therapy are effective treatments for these conditions. CFC is considered by some doctors, including the neurologists who are working on FND, to be functional. Most of the claims for its effectiveness are based on a trial of a number of therapies called the PACE trial. The researchers who carried out the trial made huge claims about the efficacy of both CBT and GET in the treatment of CFS.

Many patients have challenged their findings pointing out huge flaws in the way the trial was conducted. The PACE trial researchers countered the criticism of their trial by claiming those patients who pointed out the flaws were dangerous 'activists' , 'anti-psychiatry and "anti-science". They used the media to try and discredit these patients.

Now David Tuller, DrPH academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley, has written a series of articles about the flaws in the PACE trial. This is a report by a respected academic which will not be so easily dismissed by the PACE trial authors.

I have posted the link here as I know that some of the claims for the efficacy of GET and CBT in the treatment of FND, especially if fatigue is a problem, are based on the PACE trial. One of the authors works with Dr Stone. I just want people on here to be aware of the bad science behind the claims of the effectiveness CBT and GET .

virology.ws/2015/10/21/tria...

[EnglishIslander FND Hope Volunteer]

Perhaps also worth noting though, ANY treatment may be better than none, if undertake in the correct way by professionals experienced in their field and FND aware.

Please do not dismiss treatments offered until you've tried them? They may, or may not, help you, but it certainly is worth consideration and trial.

[skifast]

The efficacy of treatment depends on the permanent damage that has been done. That is putting in short terms. But you have to meditate, exercise, be positive even thru the crappy days and daze!! Doing sports that is multi dimensional will help in the progress to rehab or stagnate or just slow it down in my case. I have lost 3-1/2" of body height in a short period of time. In 6 weeks I lost nearly an inch. I feel the disintegration in my whole body. My case is 6 to 7 yrs of FND but just diagnosed at Stanford Jan 7th 2015.

[skifast]

Check out THE HIDDEN WORLD OF FND on FNDHOPE.org