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

From Hilda's blog at https://absolutelymaybe.plos.org/2025/01/24/when-journal-scientific-society-and-community-values-clash/

In 2024, the IAG recommended Cochrane issue an editorial note saying the review was out of date and should not be used, with information to support this recommendation. This has been done for other Cochrane reviews, including in 2021 on another ME/CFS review. It was a shock to see what they did in December instead.
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Did this recommendation by the IAG make it into any of Hilda's "monthly" updates in 2024?
 
Hutan said:
Don't miss Hilda's blog post, link in the post above.

It sounds as though the IAG basically never got a look in for the approximately 5 years it existed.

The writing group finished its draft and gave it to the Editorial Group who did nothing apart from probably realising that the new review would be fundamentally different from the old one. And then Cochrane abandoned the new review process, without even letting the IAG know in advance.

And this was the 'model' of stakeholder engagement.

Cochrane actively worked on distancing itself from communities affected by its reviews, tightening the withdrawal criteria to the point where no review has been withdrawn since 2019, making a rule that responses to complaints and consumer feedback were not signed with the name of a person, ignoring formal complaints, and refusing the IAG's request to put a note on the Larun et al review to note that it should not be used for clinical decision-making.

And then Cochrane re-labelled the 2019 review as 2024.

I get the sense that Hilda won't be giving up on this issue easily.
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Interesting to see this plainly, although here is only confirmation of what we already knew. Because it seems that this is all that happened. We basically saw most of what happened, it's just that Cochrane has behaved in completely unprofessional and deceitful ways the whole time.

For sure Cochrane looks absolutely awful here. But I can't say that the IAG looks much better. They basically took it all and helped Cochrane cover, acted like waiters at some royal function, invisible, not even a whisper. Cochrane basically acted ostentatiously obstructionist and in clear violations to many of their own rules and principles. But of course such rules are entirely self-enforced, aka not at all.

If it was at Cochrane's instructions that the IAG keep silent about everything, then it completely exposes all of their boasts about transparency and consumer engagement as a bunch of lies. But the IAG should have denounced things far sooner. No matter how it's put out here, it was simply not acceptable that it wasn't until 2024 that the path forward got cleared after years of secret scheming. Because the way they did things basically screamed at all our faces that it would end up like this, that they were completely deceitful about it all, and have revealed themselves as unfit for any purpose relating to clinical decision-making.

I am especially sick of hearing the excuse of the pandemic when it actually increased urgency by 10x. This only makes further mockery of their judgment and how they seem to exist only as a private club of unaccountable influencers exclusively focused on themselves.

I appreciate Bastian's openness here, but it's far too little too late. Once Lucy has yanked the football away 10 times, it's Charlie Brown's fault for still going at it, only to fall on his butt yet again. A lot of people have died since then because of it. A lot of people have permanently deteriorated because of it. Long Covid progress has been stifled to extinction because of bullshit like this.

Also frustratingly, yet again we have been right all along. And it changes nothing. This is appalling. What a rotten system they operate for their self-benefit. Also especially annoying is that we warned Bastian about all of this, and it made her go away in frustration because it put too much blame on Cochrane, even though it turns out it wasn't even enough. We weren't just right about the facts, we were right about the behavior surrounding how the facts came about.
 
rvallee said:
I am especially sick of hearing the excuse of the pandemic when it actually increased urgency by 10x. This only makes further mockery of their judgment and how they seem to exist only as a private club of unaccountable influencers exclusively focused on themselves.

I appreciate Bastian's openness here, but it's far too little too late. Once Lucy has yanked the football away 10 times, it's Charlie Brown's fault for still going at it, only to fall on his butt yet again. A lot of people have died since then because of it. A lot of people have permanently deteriorated because of it. Long Covid progress has been stifled to extinction because of bullshit like this.
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Yes :broken_heart:
 
Arnie Pye said:
From Hilda's blog :



I'm glad I read that. It isn't just the reviews involving ME/CFS that are affected by this lack of a signatory - it is deliberate practice for all criticism. The reasons for anonymising Cochrane's response to criticism sound absurd to me and I thought Cochrane was just picking on people with ME/CFS - but at least that turns out not to be true.
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In this case though it is transparently (for a change) hypocritical coming from "the office of the editor-in-chief". Which means the editor-in-chief, but with extra cowardice. This manages to capture both the indifferent of anonymously signing something, with signing something based on authority, the editor-in-chief, while pooing off any responsibility involved in it.

Weak. Cowardly. Pathetic.
 
One thing that's glaringly obvious but neither Cochrane nor Hilda are wiliing to say is that there is clearly behind the scenes influence going on at Cochrane to preserve a review recommending exercise therapy for ME/CFS at all costs. I hope there's a whistleblower somewhere lurking in the woodwork preparing to come out and reveal all.
 
I wonder what influence their member structure and funders have. Their researchers also become members. And are involved in decision making.

Their funders are a lot of governmental organizations who have an interest in keeping exercise as treatment.

In my view not a healthy organizational structure to be able to independently review research.

Too much influences not in the best interest of patients.

With the Independent Advisory Group (IAG) they tried to include patients, but that clearly failed.
 
I think we are taught to implicitly trust institutions our whole life, especially those that have the guise of “science” and “government”.

I am not really suprised by how this played out, and I think everyone who predicted it very much has a right to say “I told you so” to the IAG, who were infact used as a cover for postponings and delays and ultimately a cancellation after which they were thrown away because their usefulness had passed.

I’m not suprised that most on the IAG initially trusted Cochrane though. Our entire socialisation and participation in society as a “normal person” relies on trusting institutions. We have so many things we take for granted as fact because we were told them. If we started questioning everything an institution told us our reality would crumble.

Learning how f*cked up and biased institutions are in relation to ME/CFS takes lots of time, and personal suffering for most pwME. And this is people who have been completely abandoned and metaphorically (and sometimes literally) left to starve by these institutions. That’s why I’m really not surpised the vast majority of ME/CfS researchers, even those on the “right side”, don’t really understand or seem to care as much. And why I’m not suprised by Bastian’s behaviour.

I am very grateful though that she was willing to strongly criticise cochrane. I also agree that it is too little too late, but it’s better than I could have imagined coming from her just two months ago when it felt like she was in kahoots with cochrane and wanted the review to stay.
 
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Chestnut tree said:
I wonder what influence their member structure and funders have.
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Pretty much none, I suspect. I think the 'influence' remains locked in to a group of no more than a dozen people, many of whose names appear on the 'Anomalies' paper. This is what Cochrane was set up for - to protect low tech therapies that could be managed from primary care, even if they don't work.
 
Jonathan Edwards said:
Pretty much none, I suspect. I think the 'influence' remains locked in to a group of no more than a dozen people, many of whose names appear on the 'Anomalies' paper. This is what Cochrane was set up for - to protect low tech therapies that could be managed from primary care, even if they don't work.
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Yes. It always fascinated/appalled me when I worked for them that most reviewers of treatments like homeopathy, acupuncture, CBT for just about anything never really laid into the universally poor quality and often blatant conflicts of interest of those carrying out trials of these types of therapies. It was only when I found out about PACE, quite by chance, that I realised that that was the whole point of Cochrane
 
I sent the following email to Hilda and the New Zealand representative of Cochrane a few hours ago.

It followed an email in which I thanked Hilda. She replied that she felt that her discussions with people in Cochrane were bearing fruit, and that many people within the organisation had not been aware of this issue. She noted that "Even many in decision-making bodies haven't realised the consequences of things they have approved."


*****

That is great to hear. In the end, this saga may help publicise the fact that exercise therapy does not fix ME/CFS. Each media article we get sends the message out clearer that the evidence isn't there. Of course, it all comes at a substantial cost to advocates and to the people treated with harmful therapies in the meantime.

I am a bit concerned that the focus of your criticism of the review relates to its indirectness though. That is, 'PEM defines ME/CFS, the studies in the review used criteria that did not require PEM, and therefore the participants in the studies may not have had PEM - and so the studies don't apply to ME/CFS'.

I noticed that #MEAction's criticism also focused on that argument.

The argument sidesteps the point that the studies are not credible evidence for anyone benefiting from the therapies, regardless of whether they had PEM or not.

It is the trial design of the studies that is the fundamental flaw, because the lack of good objective outcomes in an unblinded trial design, (especially when combined with therapies that gaslight the patient into feeling that it is their over-attention to symptoms that is the problem, a lack of attention to harms, ignoring dropouts, biased selection, magnification of both therapist allegiance and expectation of treatment efficacy, short followup times, cherry-picking from a multitude of outcomes...) is a recipe for proving almost anything sort of works.

It is face-saving for the authors of the review and for Cochrane to say that the issue is that the understanding of ME/CFS and PEM has moved on, and so therefore, while the review was a reasonable effort at the time, it is now out of date. However, that does not protect patients or ensure government funds are not wasted on ineffective therapies. It also leaves the gate wide open for those who believe fervently in interventions founded in a psychosomatic paradigm.

Those believers will just run more studies, either selecting people meeting ME/CFS criteria, or, more likely, ensuring that people are not assessed for PEM and instead are diagnosed with a vague definition of Long Covid, or Functional Neurological Disorder, or Chronic Fatigue. And the trial design recipe, perfected over the years, will do the work. When they have enough studies falsely claiming benefit from their interventions, new reviews will be written.

I wonder if there are people in Cochrane who understand this, who understand that if the profound problems with the trial design recipe of only subjective outcomes in unblinded trials were to be recognised, it would show that many of the treatments that Cochrane has endorsed for years and that friends have built their careers on are ineffective.

I also wonder if an effective argument for Cochrane executives with integrity for why the whole shoddy mess of an organisation that is supposed to be standing for good science but is actually supporting poor trial design needs to be cleaned up is the role of the insurance industry and other business in this?

Cochrane has always had a tendency to be suspicious of big pharma, probably with some reason, and instead favouring non-drug treatments. But, there is evidence of 'big insurance' propping up the psychosomatic paradigm proponents of non-drug treatments in order to avoid paying out on income protection insurance policies. Also, because the 'only subjective outcomes in unblinded trial design' recipe is so effective at proving anything works, allowing that design to get a free-ride through Cochrane's reviews means that Cochrane has no way of preventing all manner of dubious treatments that profit corporations at the expense of patients from getting that 'gold-standard' endorsement. And that must, eventually, make the 'gold-standard' and Cochrane derisory.

Another thing that we are concerned about is the acceptance that the review should not be withdrawn, and that a 'do not use' label would be enough. A number of people, and recently Trish in particular, have spent time and effort putting together arguments to show that the level of harm caused by the review is sufficient for Cochrane's standard for withdrawal to be met. We just need someone unbiased and influential in Cochrane to review those arguments. While a 'do not use' label would be a start, there needs to be recognition of the extent of harm that Cochrane has caused if the organisation is to have any chance of avoiding repeating the mistake.

Gosh, that ended up much longer than I expected. I've run out of energy for proof-reading, so sorry if there are unclear bits.

Anyway, best wishes to you. We all have an interesting year ahead. Do let us know if there are things we can do in our campaign to help you in yours.
 
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Thanks Hutan, that's excellent. I wish letters or articles like that could be publicised widely. I don't mean the bit about me, I mean the whole sham and shambles that is Cochrane and the harm they are doing propping up unscientific, even fraudulent, trials.
 
Trish said:
One thing that's glaringly obvious but neither Cochrane nor Hilda are wiliing to say is that there is clearly behind the scenes influence going on at Cochrane to preserve a review recommending exercise therapy for ME/CFS at all costs. I hope there's a whistleblower somewhere lurking in the woodwork preparing to come out and reveal all.
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Yep and I’m cynical tgat ‘the pandemic’ is covering for actually what was going on over that time period which was the draft nice me/cfs guideline (nov 2020?) and then in end oct 2021 it being confirmed but only after a delay from aug 2021 during which we know from the FOIs that texts/emails were being sent unofficially to those in charge that were indeed suggesting all sorts

there’s little chance Cochranhe weren’t receiving the exact same traffic and unofficial ‘suggestions’ surely, probably from the same people, then maybe more (given nice was just UK) given what we’ve seen eg of the tweets on the thread from 2018 when the Larun withdrawal happened
 
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