By H Goodwin:
If Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) actually worked, you would hear lots of stories about cured patients. Can anyone remember having heard such stories? Do you know anyone who has been ‘cured’ by these methods?
Or are you still reading and hearing lots of stories about uncured, long-term patients?
The UK establishment is about to release something called the PACE study, which is their attempt to prove the efficacy of these therapies. The study is chronically over-budget and over-schedule, and has had to extend to seven centres instead of the planned 2 because they could not get enough patients to enrol or stay on the study. In desperation, it has also accepted patients without a proper diagnosis of ME/CFS according to any of the accepted international criteria, instead accepting those who simply complain of ‘being fatigued’ for other clinical and non-clinical reasons.
Scientifically, it’s a travesty, but the aim is political – to safeguard the investment of those who provide CBT/GET services to the UK’s NHS; to prevent members of UNUM (insurers) from having to pay out, and to remove as many patients from state benefits as possible.
Unlike the US, our media sold their souls to the last Government which set up the ‘UK Science Media Centre’ to vet all scientific announcements. The media has agreed only to print what the SMC tell them to, thus extinguishing any genuine journalistic enterprise. The person on the SMC responsible for ME/CFS is a psychiatrist. The same psychiatrist chairs the PACE study, and has significant financial interests in the companies providing CBT and GET services to the NHS.
So, as you can see, we are in a bit of a bind in terms of making any progress in this area, or getting any focus on it, and for this reason, I would like to thank David Tuller for his careful, balanced reporting, and the NY Times for syndicating the article so that it can be seen worldwide.
— H Goodwin