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CFS patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John We

Latest critique on things PACE related in the Journal of Health Psychology.
Chronic fatigue syndrome patients have no reason to accept the PACE trial results: Response to Keith J Petrie and John Weinman
Susanna Agardy
First Published June 27, 2017

Abstract
Petrie and Weinman urge chronic fatigue syndrome patients to move on from their beliefs about their illness and accept the findings of the PACE trial. This is unreasonable in view of the failure of PACE to achieve evidence of recovery through cognitive behaviour therapy and graded exercise therapy in either self-reports or the objective measure of the 6-minute walking test. Contrary to their suggestion, the Institute of Medicine describes chronic fatigue syndrome not as psychological but as a serious, chronic, systemic disease, with post-exertional malaise as its main feature which inhibits exercise. Linking debate about PACE with intimidation of researchers is unjustifiable and damaging to patients.
Full open access at http://journals.sagepub.com/doi/full/10.1177/1359105317715476#.WVNUcV3BB4E

One thing that I think is incorrect is "As a result of the serious impact of activity on CFS patients, the Institute recommended renaming post-exertional malaise (PEM) to Systemic Exertion Intolerance Disease (IOM, 2015b: 11)". I believe it should say that the recommendation was for CFS to be renamed, not PEM.

ETA: As Susanna seems to be involved with MEAction Australia, I contacted them to point out the above potential mistake, they said they'd pass the info along.
 
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It's all well worth reading, but these are my favorite bits:
The CBT and GET treatments in PACE were based on the layered assumption that patients were merely deconditioned and that the deconditioning was due to assumed fear beliefs about exercise. It is implied that these beliefs are misguided (White et al., 2011). The investigators expected the reversal of the condition following CBT and GET treatments. The expected reversal did not eventuate (White et al., 2011). These results warrant the rejection of the hypothesis of deconditioning.

The most offensive claim of this article is, ‘The unfortunate outcome of the continued controversy about the PACE trial and intimidation of researchers in the CFS field has increased the likelihood of deterring quality researchers from working in the area’. First, there is no justification for linking legitimate critical debate about PACE with ‘intimidation of researchers’. Second, this claim is being repeated in spite of the fact that this issue has been addressed at the First Tier Tribunal appeal (HMTS et al., 2016) which directed the PACE investigators to release the raw data to the applicants. At that Tribunal, a statement by one witness about “…‘young men, borderline sociopathic or psychopathic’ attaching themselves to the PACE trial criticism” were considered to be ‘wild speculations’ which ‘do him no credit’. In addition, when questioned about threats to researchers, Professor Chalder, a member of the PACE research team, accepted that while unpleasant things had been said, ‘… no threats have been made either to researchers or participants’ (HMTS et al., 2016: 36).
 

Sean

Senior Member
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7,378
These results warrant the rejection of the hypothesis of deconditioning.
Strictly speaking, the results show that if patients are deconditioned, then CBT and GET are not effective treatments for that deconditioning.

Which is not the same as disproving deconditioning, though it certainly offers no support for it either.

Problem is that they have never properly tested that rather critical assumption of deconditioning, and empirically verified that patients are, in fact, deconditioned (significantly more than otherwise healthy sedentary people).

They could have saved themselves a lot of embarrassment and trouble if they had.
 

Mary

Moderator Resource
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Location
Southern California
This is great - another good bit:

This claim ... suggesting that research into CFS is fraught with intimidation, is being promulgated even though it has failed to withstand scrutiny in the legal setting of the Tribunal. It can have the effect of smearing and damaging CFS patients in general. Withdrawal of this claim and an apology to the patient community would be appropriate.
If only!
 

Old Bones

Senior Member
Messages
808
I agree -- a very worthwhile article. I clicked on the author's name to see what I could learn about Susanna Agardy. It appears she has been involved with ME/CFS Australia for several years.

"Search Google Scholar" provided a list of articles/letters written by her, including one of the best descriptions of "pacing" (as opposed to PACE) I've read. It can be found here:

http://sacfs.asn.au/news/2009/12/12_10_exercise_guidance_note.htm
 

Mohawk1995

Senior Member
Messages
287
The unfortunate outcome of the continued controversy about the PACE trial and intimidation of researchers in the CFS field has increased the likelihood of deterring quality researchers from working in the area’. First, there is no justification for linking legitimate critical debate about PACE with ‘intimidation of researchers’.

What is most unfortunate outcome is that the "victimizers" are now claiming to be the victims. As one of my favorite quotes by Harry S Truman (from my home state) notes "If you can't stand the heat, get out of the kitchen".

The PACE folks can't take the heat evidently. Maybe they should find another topic to research. Or maybe they should just "get out of the kitchen". If you can't take criticism, and it isn't always easy to take, you should move on to something else.
 

alex3619

Senior Member
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13,810
Location
Logan, Queensland, Australia
One thing that I think is incorrect is "As a result of the serious impact of activity on CFS patients, the Institute recommended renaming post-exertional malaise (PEM) to Systemic Exertion Intolerance Disease (IOM, 2015b: 11)". I believe it should say that the recommendation was for CFS to be renamed, not PEM.

From my now limited memory I think it was both. They wanted to rename CFS to SEID, and PEM to PENE. Or am I confusing that with some other report? So there were two renamings and they might have been confused?
 

Alvin2

The good news is patients don't die the bad news..
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2,997
The unfortunate outcome of the continued controversy about the PACE trial and intimidation of researchers in the CFS field has increased the likelihood of deterring quality researchers from working in the area
Oh no, were going to lose Dr Davis :rofl:
Their point is well taken, lies have consequences and not the good kind.
 

Sean

Senior Member
Messages
7,378
GET is not about reversing deconditioning - because it is intense activity that is required to increase exercise capacity. GET as designed cannot increase this and that is why there is no evidence that GET reverses deconditioning.

GET is about changing beliefs about activity and exercise - GET is a psychological therapy.
Doesn't matter whether GET is operating directly or indirectly (or both) on physical deconditioning.

The basic claim made by the BPSers for both GET and CBT is that, one way or another, they can at least create the conditions that allow physical reconditioning to take place, and neither have proved able to do so.

The exact mechanism by which they are supposed to do that is largely irrelevant for the purposes of practical clinical outcomes. The bottom line is that they simply can't do it.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
Doesn't matter whether GET is operating directly or indirectly (or both) on physical deconditioning.

The basic claim made by the BPSers for both GET and CBT is that, one way or another, they can at least create the conditions that allow physical reconditioning to take place, and neither have proved able to do so.

The exact mechanism by which they are supposed to do that is largely irrelevant for the purposes of practical clinical outcomes. The bottom line is that they simply can't do it.
Ah but in our culture lies have a life of their own, many think if you believe a lie strongly enough it becomes fact :bang-head: