More on PACE

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…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)” –…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.


2 responses to “More on PACE

  1. Hi Lydia,

    Thanks so much for your continued investigation and diligence. This is helpful even for someone who is not a UK citizen. I feel like it gives me more information on how to look toward the future.

    Especially since one of my docs has brought up the dreaded CBT (again). Or, maybe it’s not dreaded? I don’t know. I just know that people tend to bring it up when nothing else works.


  2. Ah, yes, the dreaded CBT.

    CBT can be very useful for patients with any chronic illness, to help you adjust to the new life/situation, and deal with problems you face. The whole mental attitude of CBT can really help deal with the fact that suddenly your life is super hard. So – it can be a good thing, if it’s given on that basis.

    The problem is that most people aren’t given CBT to help them with life, but as a treatment. For a physical disease. Then either one of two things happen: it doesn’t cure their physical disease, and they get told it’s their own fault; or they go along with it and convince themselves they are getting better… until they crash and end up worse than they were before. On the basis of “CBT will magically cure a neurological illness”, it’s a load of rubbish and needs to be avoided!