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'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

chipmunk1

Senior Member
Messages
765
if they don't do it for money are they doing it because they want society to enjoy their placebo like treatments?

why do the operate at all if they have not much more than a placebo?
 

Kati

Patient in training
Messages
5,497
so much headdesk.

Does he consider it one of the "best interventions" for Cancer or heart disease as well? I would REALLY like to know this.
No @Kyla they only target disease which does not have measurable biomarkers and where they know they can infuse doubt in the medical profession because otherwise it would look them really bad.
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
No @Kyla they only target disease which does not have measurable biomarkers and where they know they can infuse doubt in the medical profession because otherwise it would look them really bad.
I meant more whether you could get him to say just that on twitter, since he seems to be trying to argue for this garbage without actually saying he believes it to be psychological. - I think they have been very consciously NOT saying this publicly for a while
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
I meant more whether you could get him to say just that on twitter, since he seems to be trying to argue for this garbage without actually saying he believes it to be psychological. - I think they have been very consciously NOT saying this publicly for a while
ie - if he says "no" that wouldn't be a good treatment for Cancer, then ask him to elaborate on the difference
 

Kati

Patient in training
Messages
5,497
I meant more whether you could get him to say just that on twitter, since he seems to be trying to argue for this garbage without actually saying he believes it to be psychological. - I think they have been very consciously NOT saying this publicly for a while
Yes they have been really careful with what they say publicly. But they stick to their guns.their goals is to protect their research and prevent biomedical research.
 

Dolphin

Senior Member
Messages
17,567

Dolphin

Senior Member
Messages
17,567
(In case anyone missed it)
The journalist, David Tuller DrPH, has today posted a substantial piece on the PACE Trial:

TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study
http://www.virology.ws/2015/10/21/trial-by-error-i/

There's an introduction and summary at the start if you don't want to take on the whole thing.

It's being discussed in this PR thread:
http://forums.phoenixrising.me/inde...he-pace-chronic-fatigue-syndrome-study.40664/

ME Network have also posted their own summary piece:
http://www.meaction.net/2015/10/21/david-tuller-tears-apart-pace-trial/
 

Dolphin

Senior Member
Messages
17,567
(I also posted this on the thread discussing the PACE Trial's follow-up study)

For the record
thumb.php

Response to headlines suggesting ME 'is all in the mind'
Articles on Wednesday 28th October in the Daily Mail, the Daily Telegraph and others reported that new research on ME/CFS showed it to be a disease that was “all in the mind”, and that the research contradicted the view that ME/CFS is “chronic and cannot be alleviated”.

The study, published in The Lancet Psychiatry, was a long-term follow-up to a study that suggested that cognitive behaviour therapy and graded exercise therapy were moderately effective ways of treating some people with ME/CFS.

Lead author of the study, Michael Sharpe, Professor of Psychological Medicine, University of Oxford:

"The study did not find that ME/CFS is ‘all in the mind’ – in fact it didn’t look at causes of the disease at all. People think that if these kinds of treatments help, it is saying something about the nature of the illness, which of course isn’t true. This study tells us nothing about the cause of the illness, just how to help people who have it. 'All in the mind' is also a hugely misleading description of conditions that might be associated with psychological and social factors.

"The study did not contradict the view that ME/CFS is a chronic illness. These treatments, which we have found previously to be moderately helpful, are not a cure, and they do not benefit everyone. But the good news is, the benefit of these treatments is still apparent two years later, and they do not lead to a relapse of the illness. This new finding should reassure patients who want to try these treatments."

Document type: For The Record

Published: 28 October 2015


New For The Record search

- See more at: http://www.senseaboutscience.org/fo...ng-me-is-all-in-the-mind#sthash.QemuaiHS.dpuf

Two points:
(i)
These treatments, which we have found previously to be moderately helpful, are not a cure
If this is the case, why did they publish a study claiming 22% recovered.

(ii)
The study did not find that ME/CFS is ‘all in the mind’ – in fact it didn’t look at causes of the disease at all. People think that if these kinds of treatments help, it is saying something about the nature of the illness, which of course isn’t true. This study tells us nothing about the cause of the illness, just how to help people who have it. 'All in the mind' is also a hugely misleading description of conditions that might be associated with psychological and social factors.
The CBT and GET models suggest any problems can be reversed by the therapies. It would be interesting if these therapies led to recovery: it would say the models are correct and that the illness is maintained by maladaptive illness beliefs and behaviours.
However, with a rigid recovery definition (even their original one is still a bit loose e.g. 85 on SF-36 doesn't represent full functioning esp. if not working/studying full-time), it looks like the figures for recovery in the PACE trial would be very small suggesting the model doesn't fit for most people with the illness.

It is a great shame that we can't get the recovery definition in the protocol to get an idea what percentage the model works for (my guess is it's a very low figure). The revised recovery definition doesn't tell us anything on this issue.
 

Ellkaye

Senior Member
Messages
163
Some awful media depictions of exercise for CFS. Awful. Pure stupidity. Incredible that nobody has been able to put a stop to it. The impression given to the public is appalling.TATT - SEID - CFS/ME - ME/CFS- CFIDS until finally you get back to ME....
A very very controlled message. A confused controlled message.
Some very smart minds out there giving the impression of being on this..
Well..... the band is playing on !!!
 

Tom Kindlon

Senior Member
Messages
1,734
FWIW:

Indeed. I have CIDP, and I created an Excel spreadsheet to self-administer the SF-36 test monthly when I contracted the disease last year. From personal experience, it is possible to have a Physical Functioning score greater than 60 and still be substantially impaired, including not being able to walk.
===|==============/ Keith DeHavelle
http://retractionwatch.com/2015/12/...uted-chronic-fatigue-research/#comment-879444

in reply to this:

Tom K December 16, 2015 at 12:24 pm

The PACE Trial authors changed the criteria after the trial finished so participants were “back to normal” in terms of physical functioning if SF-36 PF≥60. This is lower (worse) than the entry requirement, where at baseline participants needed to have severe disabling fatigue. This requirement is also part of the recovery criteria. In the published protocol, the recovery criteria was SF-36 PF≥85 but we have never been given any data using this threshold. I can’t see how it is in participants’ interest to say they are “back to normal” and “recovered” after treatment when most people would say SF-36 PF≥60 doesn’t represent anything close to normal functioning.

The PACE Trial investigators have caused people to want to see some of the raw data because of actions like this. People have criticised such changes in published responses but the PACE Trial investigators are not willing to look at the issue another way such as publishing the recovery criteria promised in their protocol.
 

Dolphin

Senior Member
Messages
17,567
Source: IACFS/ME
Date: December 22, 2015

[IACFS/ME Newsletter Volume 8, Issue 3 – December 2015]

From Fred Friedberg PhD

Distinguished scientists address the PACE trial
-----------------------------------------------

In a significant development regarding the controversial PACE trial, the largest and most influential behavioral treatment trial of CFS/ME to date, a recent open letter to the editor of the Lancet was published by a distinguished group of scientists (Davis, Edwards, Jason, Levin, Racaniello and Reingold, 2015; http://www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/ The letter re-examined the reported fatigue and physical function outcomes in the trial article and also pointed out potential conflicts of interest. The letter requested an independent expert-conducted re-analysis of PACE trial data.

The letter raised significant concerns about how 'recovery' was defined, pointing out that recovery criteria for improved fatigue and physical functioning were so broad that many patients with impairments or no improvement were still classified as 'recovered.' The use of the recovery term in my view is appropriate only for those who have experienced full or near full restoration of health. Yet the data from the PACE trial did not empirically confirm such restoration for those 'recovered' individuals, nor did the study report on how many patients actually viewed themselves as recovered.

The terms 'recovery' and 'cure' should be carefully considered when applied to chronic illnesses. Certainly measurable improvement occurs in ME/CFS but the notion of full recovery is a much more ambitious construct for which we need proof not only from instruments, but from talking to the patients themselves.
 

Dolphin

Senior Member
Messages
17,567
@Sam Carter has dug into the FINE Trial data that has been released in this post:
http://forums.phoenixrising.me/inde...therapeutic-alliance.41827/page-2#post-679544

PACE trial post-hoc recovery thresholds increase the recovery rate by a factor of 6.

18 FINE participants met PACE trial post-hoc recovery thresholds at week 20 (SF36 ≥ 60 and CFQ likert ≤ 18) compared to only 3 participants who met the original recovery thresholds (SF36 ≥ 85 and CFQ bimodal ≤ 3).

"Recovery" is usually not sustained.

By week 70, 12 out of the original 18 had relapsed such that they no longer met recovery thresholds.

Bimodal and likert scores are often contradictory.

Of the 33 participants who met the PACE trial recovery threshold for fatigue at week 20 (likert CFQ score ≤ 18), 10 had a bimodal CFQ score ≥ 6 so would still be fatigued enough to enter the PACE trial, and 16 had a bimodal CFQ score ≥ 4 (the accepted definition of abnormal fatigue).

So, for this cohort, if a person met the recovery threshold for fatigue at week 20 they had (roughly) a 50% chance of still having abnormal levels of fatigue, and a 30% chance of being fatigued enough to enter the PACE trial.

Some participants were confused by the wording of the Chalder Fatigue Questionnaire.

A healthy person should have a likert score of 11 out of 33, yet 17 participants recorded a likert CFQ score of 10 or less at some point (i.e. they reported less fatigue than a healthy person), and 5 participants recorded a likert CFQ score of 0.