Earlier version of PACE treatment manuals, trial identifier, etc.

Esther12 · Mar 11, 2012

I'm not sure if others have seen these yet. I've still not read the published versions, but I'd assume that these earlier ones would be more forthright. They were gained through a freedom of information request.

They're combined in a zip file attached here.

Some comments and quotes sent to me by others:

The'Knowledge of other trials' one is kind of neat as well because the
PACE authors explicitly differentiate the version of 'CBT' they use
from that used by Jason and Friedberg (due to the 'non-rehabilitative'
nature of Jason's CBT, ie CBT that is offered to help patients cope
with their illness- basically what you normally would think of when
someone says CBT), even though in the media psychosocial 'CBT'
proponents will go on at length saying things like 'CBT is used for
many different diseases', etc. So in public they say that the 'CBT'
they offer is used in an attempt to help the patient learn to cope
with their illness, but in private they explicitly differentiate their
'CBT' from CBT which is used to do just that!

1. From the 'Manual of cognitive behavioural treatment for CFS' by Chalder, T, Deale, A, Sharpe, M, Wessely, S, 2002, in conjunction with the PACE trial- "CBT is based on a cognitive behavioural model of CFS. According to the model the symptoms and disability of CFS are perpetuated predominantly by dysfunctional illness beliefs and coping behaviours. These beliefs and behaviours interact with the patient's emotional and physiological state and interpersonal situation to form self-perpetuating vicious circles of fatigue and disability...The patient is encouraged to think of the illness as 'real' but reversible by his or her own efforts' rather than (as many patients do) as a fixed unalterable disease."

3. (From PACE trial documents which compared the different 'treatments' offered in the PACE trial)

Cognitive Behavioural Therapy (Complex Incremental Pacing)

This the most complex treatment. It involves element of simple pacing to stabilise the patient's activity, graded increases in activity as with simple incremental pacing and a psychological component to directly address patient's beliefs and fears about symptoms and functioning.

Essence
The essence of cognitive behavioural therapy is helping the patients to change their interpretation of symptoms and associated fear, symptom focussing and avoidance. Patients are encouraged to see symptoms as a reflection of reversible psychological and physiological processes rather than as evidence of fixed disease.

Aim
The aim of this treatment is to change the behavioural and cognitive factors, which are assumed to perpetuate the person's symptoms and disability. It is anticipated that by reversing these, physiological changes will follow and the person will be able to make a gradual improvement in both symptoms and functioning.

Theoretical model
The theoretical model assumes that symptoms and disability are perpetuated by psychological and behavioural factors (and their physiological consequences). These are assumed reversible. The model emphasises the importance of the patients understanding of their illness and interpretation of symptoms as "warning signs" as understandable but incorrect. Fear of symptoms and consequence avoidance of activity associated with symptoms is emphasized. It also acknowledges that the patients concerns and beliefs are related to the wider social context and addresses the information available to the patients and the attitudes and views of family.

Procedure
There are detailed manuals for delivery of cognitive behavioural therapy. It includes stabilization of activity and sleep, graded increases in activity and actively addressing the patients understanding of their symptoms and functioning.

Delivery
The administration of cognitive behavioural therapy requires a highly skilled therapist, usually a mental health professional who has had training in cognitive behavioural therapy and specific experience and training in applying cognitive behavioural therapy to chronic fatigue syndrome.

Happy reading...

Enid · Mar 11, 2012

Not sure whether to laugh or cry.

That's some exposure and frightening reading (Middle Ages and all that's missing is Vincent Price).

Astrocyte · Mar 11, 2012

Esther12 said:
Some comments and quotes sent to me by others:

The essence of cognitive behavioural therapy is helping the patients to change their interpretation of symptoms and associated fear, symptom focussing and avoidance.

Happy reading...

Well I've just about completed therapy at Barts and there was none of this.

Esther12 · Mar 11, 2012

Astrocyte said:
Well I've just about completed therapy at Barts and there was none of this.

It wouldn't surprise me if their description of their own treatments was misleading. Equally though, it wouldn't surprise me if they misrepresented their approach to CFS to their own patients. It seems that they have little interest in truth or honesty, so anything is possible.

I still think that it's useful to look at the approach to CFS they purport to be taking, and see if there are any problems. These are the views of CFS that are being promoted amongst medical professionals, and they have a profound affect upon the way in which patients are treated.

Enid · Mar 11, 2012

It does seem to tie up with the "ideas" around these parts a few years ago - some sufferers offered CBT or nothing else (depression was suggested initially - psychological/behavioural). And it certainly reflects the attitude of 4 junior Docs when I was stretchered from the street to Accident & Emergency having collapsed as "behavioural" - we've a new idea - it's all in your mind. And produced a psychiatrist.

It's the influence of things like this on other medical professionals that so frightening in the UK.

Dolphin · Mar 11, 2012

Esther12 said:
I'm not sure if others have seen these yet. I've still not read the published versions, but I'd assume that these earlier ones would be more forthright. They were gained through a freedom of information request.

They're combined in a zip file here: http://www.mediafire.com/?0ruk3uttgvk4bhc

I read these before the trial was published and hence before the official versions were released (it took a lot of work!). Anyway, I'd be interested in any differences with the final version. (Apologies: I can't remember whether anyone ever did this)

It is interesting to get a feel for what they believe.

However, the documents had a lower percentage of dubious claims to the literature handed out by the Liverpool service (see the second link in my signature) which, if I recall correctly was the basis of the Powell published studies.

But the bits at the start of the PACE Trial therapist manuals, including the tables where they compare and contrast the elements, are interesting to get a good idea of the theoretical model they use.

Firestormm · Mar 12, 2012

Astrocyte said:
Well I've just about completed therapy at Barts and there was none of this.

Morning Astrocyte,

I for one would like to hear more of your experiences if you are willing to share them? I have had CBT in the past on several occasions although not specifically as prescribed for 'ME' by the protocols laid out in the PACE trial etc.

Whilst it is useful to read these things and share our interpretations it is I think good to hear from those who have participated in such therapies specifically. So if you're up for it - I'd like to hear some more.

Earlier version of PACE treatment manuals, trial identifier, etc.

Esther12

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