CBT, GET, PACE, and recovery
It's "recovery" Jim, but not as we know it
If you would like a simple summary sheet that you can print out and show to anyone who tells you that CBT (Cognitive Behavior Therapy) has been shown to cure ME, please click here to download a pdf file that you can print. CBT can help some people with ME adjust to the illness and to manage it better, just as it can for any seriously debilitating chronic condition, such as heart disease or MS. But that is not the same as a cure. Graded Exercise Therapy has the potential to do great harm.
The sheet has a link back to this webpage for further details, which are below.
In 2011 the first report was published from a £5 million study known as PACE. It looked at the effectiveness on Chronic Fatigue Syndrome (CFS) of CBT and GET as well as its own, timid interpretation of "pacing". Since then they have released several other reports , including one in 2013 claiming that 22% of patients in the CBT group had recovered. The versions of CBT and GET that they used were individually designed, and very sensitive to each patient's levels of health and energy - quite unlike the CBT and GET that many patients experience outside of a trial setting.
Earlier, when the PACE team were looking for grants, their original targets for recovery were reasonable, but after much of the trial had finished, these targets were lowered by an amazing amount. The PACE team have steadfastly refused to release any details about how the patients performed under the original, approved targets for recovery, and also refuse to release any details on how the "recovered" patients did on the walking and climbing steps assessments, and on how many returned to work.
There were 4 conditions needed to declare that a patient had "recovered", but these are inter-related and based on answers to questionnaires. Probably the best way to understand this is to look at this video, where, by taking an imaginary patient, we explain exactly what is involved.
If you wish to know more, there are two levels of links below. One lists videos and animations that cover the problems with the PACE study and its claims, and also illustrate the lack of government funding for biomedical studies into the illness. The other is more technical in nature, and provides links to the relevant studies, letters, analyses, and articles concerned with the claims of recovery.
This video shows the results of the 6-minute walking test for each of the groups in the PACE trial, and compares them with that of a typical adult. This is the only set of objective data that the first PACE paper supplied.
If you would like an idea of how the the sf-36 scale, then this video gives that. This study reported on "improvement" (with different criteria from recovery).
This video looks at the history of government funding of research into ME/CFS in America.
Whereas this one looks as the tiny amount of government funding for biomedical research into the illness in the UK.
Letters and articles
An article on harms associated with CBT and GET, by Tom Kindlon
Letters in the BMJ concerning the claims of recovery by:
Letter in Springer Link by Alem Matthees
Six letters in the Journal of Psychological Medicine, August 2013, together with a reply from the members of the PACE team.