2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

Yes, a great article Dave.
“Ever since I was a student, Cochrane has been held up as this trustworthy, reliable source of information,” said Davenport.“If you had a clinical question, Cochrane was the place where you went to find an answer. This experience has really showed me the extent of the political games behind this supposedly objective process of trying to synthesize studies.”
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The Cochrane exercise review is about ME/CFS, not Long COVID. However, a significant percentage of people with Long COVID experience PEM and meet diagnostic criteria for ME or ME/CFS. The investigators and clinicians who promote treatments like graded exercise therapy (GET) and cognitive behavior therapy (CBT) for ME/CFS, and for Long COVID as well, routinely cite the 2019 review as evidence to back their claims. According to Cochrane, the review has been cited 119 times, including in World Health Organization guidelines on “clinical management of COVID-19.”
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In its public responses, Cochrane has remained steadfast. As a spokesperson told Retraction Watch, “We have no plans to revisit this decision.” So it appears that Cochrane’s actions are, from its perspective, irreversible. But unless it acts quickly to clean up this mess, the long-term damage to its reputation could be irreversible as well.
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Thanks to you and The Sick Times for the mention of the petition and the link.
 
Do they see us as a sort of equivalent to antivaxxers or something — the kind of stuff Sharpe and Wessley tried to paint us as? So no matter how many people support our cause it’s irrelevant to them cause they are convinced of their rightousness…
 
Yann04 said:
The Sick Times:
“Really pissed off”: Cochrane receives backlash from advocates and experts after abandoning ME/CFS review



Written by @dave30th
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liking the inclusion of:

"In addition, Cochrane republished the old review with a 2024 date, creating the false impression that it had, in fact, been updated.

Many patients understandably viewed these actions as a betrayal of the promises Cochrane made when it published the 2019 version. At that time, Cochrane’s editor in chief, Dr. Karla Soares-Weiser, acknowledged in an editorial statement that the review was “based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s.” In other words, Cochrane committed to the update because its leadership was aware that the published review was inadequate for present purposes."
 
Yann04 said:
Do they see us as a sort of equivalent to antivaxxers or something — the kind of stuff Sharpe and Wessley tried to paint us as? So no matter how many people support our cause it’s irrelevant to them cause they are convinced of their rightousness…
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I think, having communicated with some, and to the extent that they think about us at all,
they think that at least a large proportion of us are hypochondriacs and psychosomatics who are truly helped by GET and CBT. They may think that a minority of us have a physical disease, but they truly don't believe that GET and CBT harms anyone. I have been told 'who are you to deny people a treatment that can help them?'.

So, yes, they won't listen to us.

Unfortunately, it seems that they can't be bothered, or they think it's not in their interest, to look at the quality of the trials and, actually, the lack of evidence for any real benefit from those trials and work things out for themselves. We need real experts in trial design and systematic reviews to speak up.
 
Yann04 said:
Do they see us as a sort of equivalent to antivaxxers or something — the kind of stuff Sharpe and Wessley tried to paint us as? So no matter how many people support our cause it’s irrelevant to them cause they are convinced of their rightousness…
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Pretty much. Not that there's any basis to it, but this is the general idea. It makes neglecting millions of people go smoothly down the throat.
 
alktipping said:
but they are not the right sort of people .Being that signatories are not the people who have power and influence to damage their careers.
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I think you make a very good point there! To Cochrane, we probably look like 15,000 patients in straitjackets complaining about being forced to take their meds.

And abuse of a group of patients on this scale is so rare that when patients push back, we're going to look like the weird ones, not the perpetrators - especially since they've managed to paint us as having dodgy thinking.

@Jonathan Edwards @dave30th - What do you think about starting up a petition or very widely circulated open letter for only clinicians/researchers to sign, in their tens of thousands? Probably one not specifically about the Larun review but about the use of open-label trials with subjective primary measures, which would take Larun (and possibly Cochrane) down with it?

This practice needs driving out of medicine. It should never have got in through the door. It's time for the doctors to start the revolution!

Are clinicians/researchers likely to be too trapped in the system to feel free to sign? If so, there's surely a ton of retired ones ready to be unleashed...
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This post has been copied and folliowing discussion moved to a new thread:
Can we influence trial and review methodology, eg open-label trials with subjective primary outcomes?
 
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The S4ME committee has today submitted more complaints to the Cochrane Complaints process.

The submission is posted in full over two posts here:
S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS Exercise Therapy Review

I won't copy it all here, since it's long.

This is the list of headings we used:

Complaints about republishing an outdated and flawed review as if it were a new review, and the failure to withdraw it.

Complaint 2025-1: Creation of a new citation and publication date as a result of attaching an editorial note to an unchanged review

Complaint 2025-2: Publication of a review as a new version without critical comments being addressed

Complaint 2025-3: Misleading labelling of the unaddressed critical comments as applying to 'a previous version'

Complaint 2025-4: The appearance but not the substance of an update

Complaint 2025-5: Questioning Cochrane's decision making. What was the real reason behind Cochrane's actions on this review?

This is our conclusion:

Conclusion and a way forward.

We find Cochrane's dragging out the promised two year replacement review process and sudden decision after five years of little progress to cancel the new review, and further to publish the flawed and outdated 2019 review five years on as if it were a new review unethical. Cochrane's ongoing actions in relation to this Review are harming its reputation, misleading clinicians, and most important of all, harming many thousands of patients.

We find these actions by Cochrane so clearly indefensible and the arguments so illogical that we can only conclude that senior editors and Trustees have given in to pressure from proponents of exercise therapy for ME/CFS.

We ask Cochrane to take the following actions in order to restore its credibility and avoid further harm to patients:

1. Remove the 2024 version (version 9) from publication.

2. Post the Editor's note on the 2019 version stating cancellation of the new review process, but removing ongoing endorsement of the 2019 Review.

3. Post a new Editor's note, as advised by the Independent Advisory Group, saying that the Review is outdated and inaccurate, and should not be used for clinical care.

4. Replace the inaccurate notes attached to the critical comments submitted since 2019 with a note clarifying that the comments have not been addressed or acted on by the Review authors.

5. Make a public statement that the Review should not be used for clinical care on the grounds that its findings are unsound.

6. Stand firm against pressure from proponents of exercise therapy for ME/CFS with vested interests, including all those we indicated in Complaint 2025-5.

7. Set up an urgent review of the decision not to withdraw the Larun review. This may necessitate seeking advice from external experts in clinical trials from medical fields outside psychiatry, psychology, psychosomatics, rehabilitation and exercise medicine, and with no expressed support for exercise therapy or other psychobehavioural interventions for ME/CFS or conflicts of interest. It should also involve an unbiased review of all evidence provided by us and others including comments, complaints and material collated by the Independent Advisory group.
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Do we have any evidence that anyone at Cochrane has actually read any comments or complaints since Tovey backed down on withdrawing Larun et al 2017, certainly at least since Larun et al 2019? Certainly apart from saying that Larun et al 2019 is not being withdrawn, the limited response we have had from Cochrane could have been written without having read the complaints submitted.

I suppose there is the one response from the authors that recently appeared below Larun et 2019.
 
Hilda Bastian has commented further in a blog post entitled "A Balancing Act":
The relevance may be less obvious in my other January post – one so critical of the Cochrane Collaboration I keep seeing the post described as “scathing.” I have been reiterating my concerns in interviews, for example with Jacqui Wise at the BMJ, and Martin Rücker in Germany’s RiffReporter.

I’m a founder of the organization, and in its three decades, I have never been in such public conflict with it. However, it became inevitable as Cochrane veered away from its principles of openness, responsiveness to criticism, and accountability. The issue at the centre of this is its cancellation of an update to a review on exercise and ME/CFS, and its re-endorsement of a version of the review it had previously acknowledged to very much need that update. The way it has gone about this raises serious red flags about the organization’s current course.

The Collaboration needs to be able to produce reviews on highly topical issues that don’t create chaos because of scientific or wording weakness – and they need to respond to critics in ways that don’t further inflame controversies the way they have here. It is not an anomaly for Cochrane: It trod a similar path with masks in 2023 and 2024, exacerbating a controversy around a review by creating more conflict. And I am seeing worrying signs in how it’s handling some red-hot reviews currently in its pipeline, too. If it can’t handle controversy, the organization is ill-equipped to serve the world as it needs to in this time. We cannot afford this in an important international scientific organization right now. This current crisis gives Cochrane the opportunity to get back on track before it causes another.

That we need the Collaboration to be a force for its ideals now more than ever isn’t the only reason this conflict matters. It’s also because of the importance of the topic to people with ME/CFS. In times of mass suffering, we just don’t have the bandwidth usually available for each individual’s suffering. And when the sufferings of the world include escalating genocides and a superpower going off a cliff, the issues that are already neglected are at even greater risk – just as those who are the most vulnerable, become even more so. It’s imperative then, that we step up some more for our communities if we’re able to.
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https://hildabastian.wordpress.com/2025/02/05/a-balancing-act/
 
Peter Trewhitt said:
Do we have any evidence that anyone at Cochrane has actually read any comments or complaints since Tovey backed down on withdrawing Larun et al 2017, certainly at least since Larun et al 2019? Certainly apart from saying that Larun et al 2019 is not being withdrawn, the limited response we have had from Cochrane could have been written without having read the complaints submitted.

I suppose there is the one response from the authors that recently appeared below Larun et 2019.
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Hilda revealed in one of her updates that Cochrane had spent over a year investigating a complaint from exercise for ME/CFS supporters. She also mentioned in that update some other complaints that had been investigated.
We have had nothing official from Cochrane except standard 'we are still investigating' emails relating to our complaints.

Hilda said this on her talkpage on January 26th 2025, in answer to a question from me:
https://hbprojecttalk.wordpress.com/2024/12/18/brief-message/
The S4ME complaints

I reported in my blog post that I had been pursuing this within Cochrane, with some, but not complete, success. In my December 2023 report, [2] I spoke about this in general terms, including about a meeting I called for out of concern about how this was being handled. In the end, there was more than one meeting. Some of the results of this are already public, via an email to you and the S4ME committee assuring you that the complaints from S4ME were now under review. [3] Happily, the Chair of Cochrane’s Governing Board personally signed it, though that was contrary to Cochrane policy at the time. This was a turning point.

It took time to go through the complaints thoroughly, as they contained many substantive points and pieces of literature, over quite some time as you know. That is the part that I can assure you was done successfully. I know this, because I curated a clear list myself to be confident about thoroughness, and provided it to Cochrane (along with a compilation of the complaints).

My strong recommendation to them was that there be a thorough investigation of that material, and that you get a detailed, and public, response. I continued to follow this up, including with the Chair at the end of his term (mid-2024). I followed it up again with staff after that, and it seemed to be on track, though moving slowly.

In December after the project was cancelled, I pursued this again. I was informed that my recommendations around investigation had been followed, but my recommendation about a public response had been rejected. I know from your public comments that no response has as yet been received at S4ME. I do not consider this final. As you know, I publicly stated in my blog post that they have not followed their policy. There, I am referring specifically to the following provision in that procedure (bolding to highlight): [4]

If a complaint is investigated, those who made the complaint will be informed of the outcome but will not necessarily be kept regularly updated in the interim.

Though I have seen no documentation beyond that I provided myself, I am confident that the investigation did take place. Therefore, you are entitled to be informed of the outcome. I have been pursuing this, and will continue to do so until you get a response. Between my blog post and my personal representations, I think it’s fair to say that my urging of Cochrane for that response to be substantive is forceful. And of course, the same applies to protesting that this happened. I am sorry that I could not get a resolution of this sooner. I have also made clear that I think their new complaints policy has problems, even if it were being followed. I will pursue that as well.

Cochrane owes you an apology.
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