Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

An example of why the removal of the 2019 review is so important:

New Oxford Textbook of Psychiatry (3 edn) published in 2020

Chapter 131 Treatment of fibromyalgia (chronic widespread pain) and chronic fatigue syndrome
By Jonathan Price
Abstract
Fibromyalgia (FM), one of the chronic widespread pain syndromes, and chronic fatigue syndrome (CFS) are important and common conditions. They are considered together here because they are commonly comorbid and because of their similarities—they are long-term conditions with a relatively poor prognosis; central nervous system mechanisms and deconditioning play an important role in aetiology; graded exercise and psychological treatments have an important role in management; and comorbid mental disorders are common and have an adverse impact on important outcomes, including disability and chronicity.

The prevalence of FM is rising, while that of CFS is declining. There is increased acceptance of the pivotal role of central nervous system factors in FM, while in CFS, the positions of different aetiological ‘movements’ appear bitterly entrenched. The main focus of this chapter is on FM and, in particular, key aspects of aetiology and treatment, especially those relating to the central nervous system.
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my bolding and paragraph break.

The chapter author, Jonathan Price, Oxford Uni colleague of Michael Sharpe, is one of the authors of the 2019 Cochrane exercise for CFS review. I can't access the rest of the chapter, but I'm sure the Cochrane review will be listed in the references.

Sharpe has a chapter headed:
"Deconstructing dualism: The interface between physical and mental illness"
So that will be banging his usual drum, no doubt.
 
Thank you for all the hard work still being done, especially in contacting interested patient groups. There must be nearly 100 now supporting our open letter.

Sorry to preach to the converted, but …

Just think that it took a number of years of comments, concerns and complaints through the 2010s to get Cochrane to start any examination of the issues with their then extant CFS Exercise Review, which we were lead to believe would be withdrawn, but ended in only being replaced by the flawed 2019 update. This was undertaken by the previous version’s authors who failed to address many of the previously raised concerns and which Cochrane promised would in turn be replaced in two years by a completely new review, to be produced in the context of an innovative new consultation process. Now four years later that new process has resulted in no consultation at all and no up dates since 2021 on what is planned.

Sadly at least one of the patient advocates, who raised very serious concerns in the 2010s that Cochrane had acknowledged but failed to address has died, in the intervening years.

Since 2019 we have seen the publication of ME/CFS evidence reviews by NICE in the UK and the CDC the USA, both of which draw conclusions diametrically opposed to that of Larun et al. Further we have seen the emergence of Long Covid where in the region of 50% of suffers experience Post Extertional Malaise (PEM) the core symptom of ME/CFS many of whom similarly report deterioration as a result of interventions based on exercise.

However, the flawed 2019 update remains active in the Cochrane Library and has been, according to Google Scholar (see https://scholar.google.com/scholar?hl=en&as_sdt=2005&sciodt=0,5&cites=12684092258614883664&scipsc= ), cited 839 times in other scientific papers, including by many articles that in turn have been cited over 1000 times. This includes some 49 articles so far this year, many of which relate to Long Covid. The flawed 2019 review has directly and indirectly impacted on hundreds of thousands of papers world wide.

Cochrane admitted in 2019 that the Larun et al update failed to address the issue of PEM and harms, but in the intervening four years this Exercise Review continues to be used to justify exercise based intervention for ME/CFS, for other conditions correctly or incorrectly seen to be related to ME/CFS and now for Long Covid. Potentially millions of patients world wide are suffering because of this Review, acknowledged to be inadequate at the time of publication.

How many people with ME/CFS and Long Covid will have been harmed or will have died before Cochrane satisfactorily respond to some ten years of comments, concerns and complaints?
 
Peter Trewhitt said:
However, the flawed 2019 update remains active in the Cochrane Library and has been, according to Google Scholar (see https://scholar.google.com/scholar?hl=en&as_sdt=2005&sciodt=0,5&cites=12684092258614883664&scipsc= ), cited 839 times in other scientific papers, including by many articles that in turn have been cited over 1000 times. This includes some 49 articles so far this year, many of which relate to Long Covid. The flawed 2019 review has directly and indirectly impacted on hundreds of thousands of papers world wide.
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This is why they're not retracting it. This is good for Cochrane, at least for now. It's terrible for patients, but it's good for the organization, and clearly this is all they care about.

If you look back at past similar harmful influence that crumbled, say the psychological model of peptic ulcers, no one faced any accountability. It was all very good for the people who influenced bad outcomes, until it just all vanished down the memory hole as if it never happened. No one writes about psychological or psychosomatic ideas about peptic ulcers, even though they used to be THE primary psychosomatic disorder. Not a single lesson was learned, and the exact same cycle of failure is looping around.

They're OK with this, this is who they are and what so-called evidence-based medicine is ultimately about: influence. They are, for all intents and purposes, influencers. Just like on TikTok, but with a lot more power. And, somehow, less accountability. The more they influence, the better they do. Even if it's ultimately bad, the goal is to grow their influence, and they are succeeding at it. The rest, including patient outcomes, is irrelevant.
 
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Peter Trewhitt said:
However, the flawed 2019 update remains active in the Cochrane Library and has been, according to Google Scholar (see https://scholar.google.com/scholar?hl=en&as_sdt=2005&sciodt=0,5&cites=12684092258614883664&scipsc= ), cited 839 times in other scientific papers, including by many articles that in turn have been cited over 1000 times. This includes some 49 articles so far this year, many of which relate to Long Covid. The flawed 2019 review has directly and indirectly impacted on hundreds of thousands of papers world wide.
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Wow, a great (well, terrible, but useful) bit of information. Thanks Peter.

rvallee said:
This is why they're not retracting it. This is good for Cochrane, at least for now. It's terrible for patients, but it's good for the organization, and clearly this is all they care about.
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I'd be surprised if the number of citations is a major reason for Cochrane to retain it. Rather I think it's the fervent belief of people with influence inside Cochrane that the Exercise Review is correct that is a main driver. And maybe some funding is contingent (probably not formally) on the review staying there.

rvallee said:
They're OK with this, this is who they are and what so-called evidence-based medicine is ultimately about: influence. They are, for all intents and purposes, influencers. Just like on TikTok, but with a lot more power. And, somehow, less accountability. The more they influence, the better they do.
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I agree. The model of Cochrane is fundamentally flawed. Relying on people who are motivated to write a review, people who Cochrane does not pay, results in deeply biased reviews. NICE and the CDC still get things wrong, but at least there is the possibility of accountability.
 
Hutan said:
I'd be surprised if the number of citations is a major reason for Cochrane to retain it. Rather I think it's the fervent belief of people with influence inside Cochrane that the Exercise Review is correct that is a main driver. And maybe some funding is contingent (probably not formally) on the review staying there.
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I had been surprised by the extent and reach of the citations, and this not only illustrates how these ideas have unjustified creep into other conditions but also illustrates how deeply engrained they have become in the post viral conditions literature. For me this strengthens how vitally important it is we continue to fight for the withdrawal of the deeply flawed exercise review, however, for what it is worth, I agree with @Hutan that Cochrane’s current intransigence relates not primarily to loss of their own reputation, as their current shenanigans are likely to ultimately cause greater reputational damage than withdrawal of a single review would trigger.

Rather I also suspect that a number of individuals within or connected to Cochrane are fighting for the preservation of exercise therapy as a preferred intervention and for their personal reputations, without regard for the damage this is causing to Cochrane. I feel it is similar to the backlash trying to block the final publication of the NICE guidelines that was undertaken without any concern about undermining the status of the NICE guidelines process.
 
Peter Trewhitt said:
I had been surprised by the extent and reach of the citations, and this not only illustrates how these ideas have unjustified creep into other conditions but also illustrates how deeply engrained they have become in the post viral conditions literature. For me this strengthens how vitally important it is we continue to fight for the withdrawal of the deeply flawed exercise review, however, for what it is worth, I agree with @Hutan that Cochrane’s current intransigence relates not primarily to loss of their own reputation, as their current shenanigans are likely to ultimately cause greater reputational damage than withdrawal of a single review would trigger.

Rather I also suspect that a number of individuals within or connected to Cochrane are fighting for the preservation of exercise therapy as a preferred intervention and for their personal reputations, without regard for the damage this is causing to Cochrane. I feel it is similar to the backlash trying to block the final publication of the NICE guidelines that was undertaken without any concern about undermining the status of the NICE guidelines process.
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Is there any way of seeing how many of the citations are from people who were part of the review itself ie self-citations even if they are part of a different 'group' on each occasion?
 
bobbler said:
Is there any way of seeing how many of the citations are from people who were part of the review itself ie self-citations even if they are part of a different 'group' on each occasion?
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I thought that was possible, but looking at Google Scholar I can’t see how to do it other than looking at each citation in turn. This could be my ME brain, or it could be that you need to use a different search engine.
 
Peter Trewhitt said:
Rather I also suspect that a number of individuals within or connected to Cochrane are fighting for the preservation of exercise therapy as a preferred intervention and for their personal reputations, without regard for the damage this is causing to Cochrane. I feel it is similar to the backlash trying to block the final publication of the NICE guidelines that was undertaken without any concern about undermining the status of the NICE guidelines process.
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It's hard to reconcile that with what Cochrane's leadership is doing, especially the editor-in-chief. They only have the organization's reputation at stake there, they are not personally involved in the outcome of this particular review or research.

It's simply not true that Cochrane has their hands tied because the authors refuse to budge. This is just what they hide behind. The review, from the start, and the failed process, has long met thresholds for major failure.
 
Latest petition update

The call from patient organisations grows stronger - Cochrane continues to show no sign of listening

NOV 8, 2023

Five more organisations add their support to the campaign

Thank you very much to the following five organisations for supporting the campaign, bringing the number of organisations to 64.

Germany - Lost Voices Stiftung
Italy - CFS/ME Associazione Italiana
Netherlands - Steungroep ME en Arbeidsongeschiktheid
Italy - CFS/ME Organizzazione di Volontariato
United States - Long Covid Families

You can find the full list here. If an organisation you are associated with isn't listed there, please ask them to support the campaign - they can contact us at moderators@s4me.info.

Please continue to share the petition to help get to 10,000 signatures.



No response yet to the formal complaint to Cochrane

We sent the formal complaint to Cochrane on 31 October. Cochrane's complaint process says that it will acknowledge receipt of complaints within three days. More than a week later, there has been no acknowledgement.

Cochrane's complaint process also says that it will respond to the complaint within two weeks. We wait for the response.



No news on the planned new review
On 29th September 2023 'the office of the Editor-in-Chief' told us: "A first report and project website update is planned for release in the next few weeks." Six weeks on, there is still no news. We have been told to send our concerns to the Independent Advisory Group, but they are still not responding. Even if the process towards a new review resumes immediately, it could take years to produce a new review. There is no guarantee that it will ever be completed or that it will be any better than the old review.

Any reasonable person would see that a review that the Cochrane Editor-in-Chief stated was out of date on publication four years ago, with findings that have been declared wrong by NICE and the CDC, and that over 60 informed consumer organisations from 18 countries have said is harmful, must be withdrawn immediately. While it continues to be hosted by Cochrane and cited, people continue to be harmed.

So, this petition is as important as ever. It will remain open until Cochrane no longer hosts a scientifically inaccurate and harmful review recommending exercise therapy for people with ME/CFS.

Karla Soares-Weiser, Editor-in-Chief at Cochrane, and the Editorial Board: the values that Cochrane says it stands for requires that the 2019 review be withdrawn immediately. Please withdraw the 2019 review.
 
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