Another participant’s experience in their own words:
“I took part in this study, and was randomised to the GET group, and I’d be very sceptical about its results.
My initial blood tests showed some signs of infection and inflammation so I was sent for another set which apparently didn’t, so I could be accepted into the trial.* The assessment/criteria forms which had to be filled out at the before and during the trial, did not mention symptoms after exertion or delayed onset fatigue, there was very little attention paid to pain and cognitive/mental issues were very blurred.
At the start of the trial, I had to wear an accelerometor thing for a week, presumably to measure activity levels. But at the end of the trial, this wasn’t repeated. The fitness tests measured the number of steps I could do in a set amount of time, but paid no attention to the fact that I usually couldn’t walk for 2 days after these assessments.
The ‘handbook’ I was given contained an incredibly flawed model, which GET is based on, which basically goes ‘felt a bit ill – led to resting too much – led to deconditioning – led to the ME/CFS symptoms’. This completely ignores the fact that the vast majority of people don’t rest early on and carry on pushing themselves despite severe pain and
fatigue.
I would suggest that the criteria were so vague and the assessment so poor that a majority of the people who recovered using GET never had ME/CFS in the first place.”
permalink
http://www.guardian.co.uk/discussion/comment-permalink/9627125 (since the Guardian changed it’s website, you now need to scroll down just over half way).
*The Oxford Criteria, used to filter applicants, does not accept people with neurological or immune system abnormalities. This on its own devalues any outcome.
but thank you
by goblinff on Wed Aug 14, 2013 11:21 am
