Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Nope. Hilda said a while back she was behind due to COVID and other commitments but working on it and going to announce the members of the IAG soon. She was also working on the collection of critiques etc.

I wonder if now the NICE draft is out, a renewed call for Cochrane to withdraw the exercise review and abandon the update is in order. NICE have done a thorough review of the evidence for exercise and CBT and dropped them as recommended (curative) treatments because they acknowledge the problems with the evidence base.

What would be the point of Cochrane insisting on updating the exercise review now? Maybe to let NICE know (in two years time) they've got it right? I think it was a mistake not to withdraw the review based on a sudden change of policy in August 2019, despite the previous Editor in Chief asking the authors to agree to withdrawal earlier in 2019 before he left Cochrane.

I have submitted many times to the IAG email address and on Twitter that an update of this review is not a good idea. It has been partly billed as evidence that Cochrane wants to do the right thing by listening to and involving patients, having been reminded that this was a good idea by one of their co-founders - Hilda Bastian! It will be interesting to see what comes next.

 

I do worry that I spent a lot of time preparing something and then putting it into a big black hole never to see the light of day again. Oh well.

 

Thank you so much for trying dear @Lucibee. It's really all we can do, isn't it? I wish I still had sufficient brain left to help out on stuff, but it went walk-about and doesn't show much sign of coming back anytime soon. I really appreciate all of the people who work so hard trying to get the patient message across. Thank you again.

 

It will see the light of day as everything posted on Twitter and to the IAG email address will be made public when the project is finished.

https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot

 

Hilda has given an update https://twitter.com/user/status/1326652301298167808

 

Code:

https://twitter.com/s4me_info/status/1328621800218124290

https://twitter.com/user/status/1328621800218124290


Given this, can anyone explain the value in a new Cochrane review over the recent NICE one to anybody else except Cochrane?

 

No.

I think it is high time took responsibility for the fact that more people are being harmed by these treatments they are legitimizing.

I understand that there are extra pressures on everyone's time during the pandemic but if Cochrane had dine the right thing then it woukd have been done and dusted before this year anyway.

I appreciate that covid has taken centre stage and we don't want people to be harmed. What about ME patients though? We've been failed for decades. Why should more of us have to suffer while they all run to focus on the shiny new thing?

Given the track record with ME and the very clear failure to put it right, can anyone really have faith in Cochrane's work on covid?

 

I have just written this rapid response to the BMJ article - I am fairly sure it won't be published, but I will also post a version on each of the Cochrane reviews, and write to the Editor in Chief, post on my blog etc.

Rapid response to https://www.bmj.com/content/371/bmj.m4356

It's time to withdraw the Cochrane reviews of Exercise Therapy and CBT

Submitted 16/11/20

Dear Editor

Thank you for reporting the welcome news NICE no longer recommends graded exercise therapy (GET) and CBT in its draft revision to its guidance for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The news is not welcome to some healthcare professionals, particularly those who were closely involved in the PACE Trial [1]. Dr Alastair Miller who acted as a reviewer of serious adverse events on PACE [2] is quoted as saying that “There has never been any evidence of harm and [GET and CBT] remain the only evidence-based treatment approach in CFS”. Professor Peter White, lead investigator on PACE, is also quoted as saying it is “…remarkable that the committee use the symptom of post-exertional fatigue as a reason for not providing GET, when the largest ever trial of GET showed that it significantly reduced this symptom…” Both Miller and White had been prescribing GET and CBT for many years before PACE, and White had significant conflicts of interest [3, 4]. Was it wise to entrust someone so politically and financially invested in the success of GET and CBT to lead the largest ever trial to evaluate them? Members of the UK psychological medicine establishment have staked their reputations and careers on proving the worth of GET and CBT for ME/CFS; this might explain why they do not appear to have looked for evidence of harm.

Healthcare providers such as the NHS do not have the resources to carry out systematic surveillance studies, particularly on behavioural and psychological treatments, and there is no "yellow card" system for patients to raise the alarm. Neither have the theories of deconditioning and unhelpful illness beliefs which underpin GET and CBT been questioned.
There are more general implications about the quality of research on therapist-delivered treatments which can’t be blinded in trials. In his expert testimony to the NICE Committee [10], Professor Jonathan Edwards gave a shocking example of being advised to remove any reference to problems caused by lack of blinding in one of his own studies. “…It was recommended that I not mention problems with unblinded trials, not because my critique was wrong but because it would cast doubt on almost all treatment studies in clinical psychology. One referee asked specifically for removal of such comments.”

It is fortunate that for this long-awaited guideline update, NICE has recognised the weaknesses in the trials and systematic reviews conducted by, or with input from powerful establishment proponents of the treatments under evaluation [1, 5]. They have also acknowledged the considerable evidence of harm [7, 8, 9].

Having been requesting it since 2018 [11], I call once again for Cochrane to withdraw their reviews of Exercise Therapy and CBT for Chronic Fatigue Syndrome [5, 6]. According to the Cochrane withdrawal policy [12], a review should be withdrawn if “…following the conclusions of the published review could result in harm to patients…”. The findings of the NICE guideline committee have led to a reversal of the recommendations for GET and CBT. This means following the conclusions of the Cochrane reviews which state that GET and CBT may be helpful could result in harm to patients.

1. White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011;377:611-90. https://doi.org/10.1016/S0140-6736(11)60096-2
2. Expert reaction to NICE draft guideline on diagnosis and management of ME/CFS: declarations of interest: https://www.sciencemediacentre.org/...deline-on-diagnosis-and-management-of-me-cfs/
3. https://me-pedia.org/wiki/Peter_White#Conflict_of_interests
4. David Tuller: Trial by Error: Retired PACE Investigator Peter White and Swiss Re: https://www.virology.ws/2017/08/07/...d-pace-investigator-peter-white-and-swiss-re/
5. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews 2019, Issue 10. Art. No.: CD003200. DOI: 10.1002/14651858.CD003200.pub8.
6. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews 2008, Issue 3. Art. No.: CD001027. DOI: 10.1002/14651858.CD001027.pub2.
7. Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. Journal of Health Psychology. 2019;24(10):1318-1333. doi:10.1177/1359105317726152
8. McPhee G, Baldwin A, Kindlon T, Hughes BM. Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England. J Health Psychol2019;1359105319854532. doi:10.1177/1359105319854532 pmid:31234662
9. ME Association. Consolidated report: Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes, April 2019: https://meassociation.org.uk/wp-con...nd-GET-Final-Consolidated-Report-03.04.19.pdf
10. Myalgic encephalomyelitis (or encephalopathy) /chronic fatigue syndrome: diagnosis and management Appendix 3: Expert testimonies: https://www.nice.org.uk/guidance/GID-NG10091/documents/supporting-documentation-3
11. My complaint to the Cochrane Governing Board about the Cochrane review of Exercise for chronic fatigue syndrome (November 2018) https://healthycontrolblog.wordpres...iew-of-exercise-for-chronic-fatigue-syndrome/
12. Withdrawing published Cochrane Reviews July 2019: https://documentation.cochrane.org/display/EPPR/Withdrawing+published+Cochrane+Reviews

 

I have had no answer to my question from Hilda yet
https://twitter.com/user/status/1326897591179685891

 

Thank you @Caroline Struthers! .

This is the crux of it.

The likes of Wessely, White, Miller, Chalder, Crawley etc claim to have studied ME and focussed their interest on ME when that is blatantly not the case.

They made the mistake of focusing on their delivery of a particular therapy and this is what they've spent decades doing. When it failed to work on ME, the BPS cabal redefined ME to CFS, and then conflated that with chronic fatigue. Then when that therapy, courtesy of PACE, was shown to be ineffective for chronic fatigue MUS and IAPT were born.

If their specialist knowledge was truly ME or even CFS, they would have been intrigued by the failure of the hypothesis and treatment and the therapy would have evolved, adapted or been ditched in favour of something at least supportive for patients.

Instead they kept their proposed solution and went looking for a different problem demonstrating have zero interest in the well being of ME patients or in studying the disease itself but only in the specific therapy they espouse.

The likes of Cochrane should have been highlighting this not colluding and continuing to collude with these self styled ME experts. Meanwhile patients get to pay for the poor career focus of the BPS crew by forfeiting their own careers, ability to raise families, quality of life and, sometimes, life itself.

 

I would also suggest that while Cochrane's work on ME / CFS is left standing it will be to the detriment of long covid patients, no matter how good their work on covid is.

All that will happen is that patients with long covid will find themselves misdiagnosed or rediagnosed with CFS bearing in mind most won't have had a test during the active infection stage.

So Cochrane's work on ME /CFS will be directly relevant to them. Worse still it could increase the likelihood of misdiagnosis as exercise therapy is a hungry beast in search of new fodder.

 

Not just GET, but CBT quality of evidence also rated low to very low throughout so far as my quick skim showed.

 

I think there is also another reason - that they literally cannot see evidence of harms because they misconstrue what they see. They look only for the most serious of harms, not realising that people's deteriorating health can actually be due to the treatments. But in their arrogant presumption of the validity of their own illness model, they see it only as patients' failure to stick with the therapy. I do believe these psychiatrists are so blinded by their own bias they truly cannot see that. And of course COI can be a part of that bias, but of course being wedded to an almost religious belief in their illness model is itself a sort of COI.

 

The key thing to note in the NICE guidelines evidence searches is that they initially defined the condition they were searching for evidence on (ie ME/CFS) and rated it accordingly.

If Cochrane insist on redoing the exercise review they need to decide and make it clear which criteria they are using.

 

Did a massive edit taking out explicit stuff about conflict of interest and they posted it
https://www.bmj.com/content/371/bmj.m4356/rr-2

 

Yea, well done!

This whole IAG Cochrane non - review is a ridiculous emphasis on process over sense.

 

Latest blog from @Caroline Struthers

https://healthycontrolblog.wordpress.com/2020/11/24/request-to-withdraw-cochrane-reviews/

 

I seem to have missed this.

Sounds like great news, thanks @Caroline Struthers

 

@Hilda Bastian
worth a read
@PhysiosforME review of new NICE guidelines.

https://www.physiosforme.com/post/physios-for-me-view-on-nice-guidelines