Posted by Kati:
PACE trials stands for Pacing, graded Activity and Cognitive behavioral therapy: a randomize Evaluation. It was initiated a few years ago with a few millions pounds budget, by psychiatrists that aim at proving that ME/CFS is a psychiatric illness.
They found fatigued patients. They didn't have to meet the latest definition of ME/CFS via the Canadian Consensus Criteria, because that would have skewed the results really bad. They just needed to be fatigued.
So the psychiatrists in UK, authors and investigators of the PACE trials, most of whom have conflicts of interest as they are attached one way or another to disability and health insurance companies, picked 640 people with fatigue that lasted for the last 6 months, told them they have ME/CFS and randomized them into 3 groups, CBT (cognitive behavioral therapy), GET (graduated exercise therapy) and pacing of activities. According to their results, exercise and behavioral therapy helps treating the disease. And they went on to tell the whole world about it, just like the 4 papers in the journal Retrovirology calling XMRV pure lab contamination.
Today the patients as the news spread on CNN, LA Times, NY Times, BBC, and other wires. You see the title like this one all over the web: "Study says behavior and exercise therapy best for treatment of chronic fatigue syndrome", Us patients know that tomorrow when the doctors will read the news, they will see that as headlines and will refuse testing, prescriptions to patients that are really sick.
The PACE trial did not study the sickest of the sick ME/CFS patients out there, the ones that can't care for themselves, the ones that can barely make it surviving, the ones that even stepping out of their doorstep will throw them in a relapse that may last weeks, perhaps months. For the regular person, it is hard to understand that there can be an illness that if you exercise, push your physical or even mental limits, you get worse and "pay" for it afterwards. Read more>>