Phoenix rising has posted a summary of the actual PACE results, not the media-spun results:
A friend of mine posted this in summary:
“Bob at PR has been working with a team of people to unpick the PACE trial spin http://dl.dropbox.com/u/44533954/Pac…ique%202.2.pdf
The PACE study states 13% ‘improvement’ in the GET group
*87% did not respond to CBT or GET
*but the ‘improvers’ were still sick enough at the end of the ‘treatment’ to enter the study again
*but the ‘improvers’ were still sicker than 90% of the population
*there is no published data for how many participants were harmed
*entry to the study was controlled by the Oxford criteria, idiopathic fatigue >six months, no other symptoms
Here’s the link to the correspondence between White (lead PACE author) and Prof. Hooper, with the “The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME” and “CFS defined simply as a principal complaint of fatigue that is disabling, having lasted six months, with no alternative medical explanation (Oxford criteria)” – http://www.meactionuk.org.uk/Hoopers…PDW-letter.htm
There is an FOI request in for the percentage of trial participants that worsened while in the study – this information is necessary for any of the ‘improved’ statistics to be meaningful.
Yet the NICE guidelines recommend GET and CBT for us with a neurological disease. A friend recently had to fight off this compulsory damaging therapy in Sweden.
We may find our support systems dependent on engaging with this kind of ‘treatment’, yet it is clear from the FINE study and from many surveys and studies (brought together inTom Kinlon’s Index of Harms) that GET and the kind of CBT in PACE (where we are encouraged to ignore our inappropriate illness beliefs) are positively damaging to pwME.
As a member on another forum said a while ago, we need a defence against the medical abuse that is GET and (maladaptive belief) CBT for pwME, written succinctly and unassailably.”
My own personal addition is this: The control group showed more improvement than the CBT/GET group, which is evidence that CBT/GET were actually preventing patients from getting better.