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

Hutan said:
Some of the psychosomatic proponents might have been willing to have a protocol that separated people into two groups, with PEM and without PEM, with different recommendations for each. But, the Magenta study would have made that hard, because the criteria used did not require PEM, it was the 2007 NICE criteria, and the severity of the participants was only mild and moderate. And GET didn't work for them.
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Last year a major review of exercise studies for depression was published. It mostly showed a total bust, at best that the data are very unreliable, do not even come close to the overhyped claims of the last few decades. There is simply nothing reliable behind those claims, they were made out of nothing based on vibes and feels.

And it changed nothing. It's still argued that exercise is great for depression, even pointing at the review that doesn't support this. There are still people, 'experts', going around 'teaching' about how to implement exercise programs for depression, how to do it safely, all the usual superficial all-style-no-substance we are used to.

The problem is far bigger than just us. This is the main methodology used by the likes of Cochrane and it created the same mess: overhyped claims made before any data were available continue to be made despite having been thoroughly debunked, just because the industry can't accept they have been systematically failing for decades.

I really don't know we we can affect that, but this is the scale of the problem. It's the entire clinical rehab and copy-paste-of-cheap-trials industries that have basically painted themselves in a corner, and having managed to work out a version of Zeno's paradox, painting ever-smaller lines closer to the corner, they have nowhere else to go. The lines are already too small to be visible, they just keep repainting the last line and no one in the industry cares. They paint lines, they don't ask questions.

They can't let this go. They won't. Because it's their whole fake-ass industry that would be exposed as a giant con. Because every single institution and organization tasked with avoiding garbage like this failed, enabled, even encouraged this to go on, cheering it the whole way.
 
And in addition to valid questions about MAGENTA, there's also the abandoned individual patient data review that was supposed to use PACE data, individualized instead of pooled. Guaranteed that they abandoned it because they started looking at the data, and found that there is no way they could spin this into a positive. If they could have, they absolutely would. They didn't drop it for a good reason.

A fully independent investigation here would find malfeasance on a grand scale. So the best they try to do is simply to bury the whole thing and wait for us to die while they go through another label-replacement cycle. I'm guessing they are probably ignorant, or at least apathetic enough, to actually believe that this is just a fad that will blow over one day, that our "small vocal minority of activists" are just some phase, or whatever. It's easy to maintain something like this when no one keeps accurate data anywhere.
 
Something that I don't actually know, despite having been a co-author of a Cochrane Review, is whether or not Cochrane Reviews actually cost Cochrane anything to get done. I don't remember my senior author getting funding from Cochrane but she may have done. My impression was that people proposed to Cochrane that they did a review and if Cochrane thought it was needed they said yes. Funding for salaries for reviewers came from elsewhere.

@Caroline Struthers might know much more.

If the people who agreed to do a new review were not being paid then it is unclear to me what justification Cochrane would have for now saying no thanks when the review was invited 5 years ago and nothing has made it less relevant.
 
Jonathan Edwards said:
Something that I don't actually know, despite having been a co-author of a Cochrane Review, is whether or not Cochrane Reviews actually cost Cochrane anything to get done. I don't remember my senior author getting funding from Cochrane but she may have done. My impression was that people proposed to Cochrane that they did a review and if Cochrane thought it was needed they said yes. Funding for salaries for reviewers came from elsewhere.

@Caroline Struthers might know much more.

If the people who agreed to do a new review were not being paid then it is unclear to me what justification Cochrane would have for now saying no thanks when the review was invited 5 years ago and nothing has made it less relevant.
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My understanding is that, in this particular case, some of the people on the writing group were Cochrane staff, so they were being paid a salary and the review was part of their day job. When funding was pulled to Cochrane, some/all of these people may have lost their jobs. I don't know if the other members of the writing group and the IAG were paid anything, if they were, I doubt it was more than expenses. @Medfeb will know.

However, possibly the Cochrane writing group staff would have been willing to continue, to do the work for free. Perhaps Hilda was being paid, even so, she also may have been willing to work for free. If any of these people were not willing to work for free, others could have been found who were. Or there could have been crowd funding. There were options.

The issue that Cochrane I think are mostly referring to with respect to not enough resources seems to be around the costs of overseeing the project and editorial input within Cochrane itself. So, the time of Karla Soares-Weisser, for example, in reviewing the protocol, negotiating any changes, dealing with the inputs from the IAG, reviewing a drafted new review, negotiating changes, keeping the psychosomatic crowd happy, dealing with the flak when the new review was published.... Perhaps they were bundling the dealing with all of the complaints about the Larun review in that as well, although of course that should be a separate matter.

It's not a well founded reason, because the problems (e.g. having to please the psychosomatic people and so needing to interfere in the review process) are of their own making. Basically, they just could not be bothered with the hassle of a new review and didn't think anyone worth bothering about would be upset if it did not proceed. So, their thinking seems to be, label the 2019 review as 2024, draw a line under the whole matter (complaints about the old review, a new review process), put their fingers in their ears when anyone mentions ME/CFS, and carry on.
 
Yes, she definitely was being paid by Cochrane at some point, but also not being paid at others. Perhaps she was being paid for some part of 2024? If she was, that may have contributed to her belief that Cochrane was supporting the new review process and everything was back on track.
 
She was paid an honorarium in the first year or 2, then eventually after the long hiatus she got them to pay her some more in 2024. I guess it's difficult for her to work free because i don't think she has a salaried position, so relies on a mix of short contracts.

A lot of the reviewers for Cochrane reviews would be salaried academics or clinicians, I assume, so would do reviews as part of their paid work, not paid by Cochrane. There seem to be a lot of university professors if evidence based medicine, so called, and professors of general practice medicine who specialise in this sort of work.
 
(Not sure if this is the right place to post this, re evidence of harms; feel free to move)

Just wanted to flag up this sentence:

"Awareness was growing of the ineffective or possibly harmful16 effects of approaches such as a graded exercise programme"

in https://bmjmedicine.bmj.com/content/4/1/e001068 "Effectiveness of a personalised self-management intervention for people living with long covid (Listen trial)"

Ref 16 is Ladds E, Rushforth A, Wieringa S, et al. Developing services for long COVID: lessons from a study of wounded healers. Clin Med (Lond) 2021; 21:59–65. doi:10.7861/clinmed.2020-0962
 
Wyva said:
The Medical Republic: Cochrane cancels chronic fatigue review five years in

Cochrane has unexpectedly cancelled the planned update of its controversial 2015 exercise therapy for chronic fatigue syndrome review, and its independent advisory group of stakeholders are demanding answers.​

Full article: https://www.medicalrepublic.com.au/cochrane-cancels-chronic-fatigue-review-five-years-in/114172
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Although a disappointing article it does get the key point of Cochrane’s perfidy out there. Let’s hope there is more in depth journalistic analysis soon.
 
Wyva said:
The Medical Republic: Cochrane cancels chronic fatigue review five years in

Cochrane has unexpectedly cancelled the planned update of its controversial 2015 exercise therapy for chronic fatigue syndrome review, and its independent advisory group of stakeholders are demanding answers.​

Full article: https://www.medicalrepublic.com.au/cochrane-cancels-chronic-fatigue-review-five-years-in/114172
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The advisory group, led by Cochrane founding member Dr Hilda Bastian, said the organisation had a duty to “deal with” outdated reviews whether they meet criteria for formal withdrawal or not.
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Although this sounds very nice and everything, no, they don't. This idea that people have 'duties' is, in most cases, just wind. Cochrane specifically has no such thing, it's a private charity that mostly acts in secrecy, is not subject to anything but generic non-profit obligations that are basically toothless. They can do whatever they want as long as whoever pay their bills are fine with it and their absurd reputation as the best in the business remains. Hence, no such things as 'duties' or anything of that nature. Only compliance exists, and in health care it almost always favors doing the wrong, authorized, thing over doing the right thing that isn't authorized.

A duty is the counterpart to a right. It's non-negotiable. You have to comply with it, there is simply no option not to. They don't have to comply with anything here, so there is no such thing as some 'duty', or 'oath' or anything like this. They're just meaningless words people use to make things sound more important than they are and hide the fact that rules, even laws and constitutions, are just words somewhere.

Just the same, most of the so-called 'rights' that are said to exist surrounding health are just hot wind. We sure as hell are not protected by any of those, because they are arbitrary and so is compliance. This system exists mostly on honor and cultural popularity, and this is an issue that is completely dishonorable, and yet most of the medical profession stands on the wrong side. This is a choice, made without duress, fully voluntary. Because there is no enforcement of any kind for any of this. All those systems operate however they want as long as no one comes in and forces them to stop.

Relying on fantasy concepts helps no one here. You don't go around people trashing the place going "excuse me, do you have a permit? you can't do this", which they obviously can if the worst thing that can happen is someone going around haplessly insisting that some made-up rules prevent them from doing what they are clearly doing all out in the open.
 
rvallee said:
Although this sounds very nice and everything, no, they don't. This idea that people have 'duties' is, in most cases, just wind. Cochrane specifically has no such thing, it's a private charity that mostly acts in secrecy, is not subject to anything but generic non-profit obligations that are basically toothless. They can do whatever they want as long as whoever pay their bills are fine with it and their absurd reputation as the best in the business remains. Hence, no such things as 'duties' or anything of that nature. Only compliance exists, and in health care it almost always favors doing the wrong, authorized, thing over doing the right thing that isn't authorized.

A duty is the counterpart to a right. It's non-negotiable. You have to comply with it, there is simply no option not to. They don't have to comply with anything here, so there is no such thing as some 'duty', or 'oath' or anything like this. They're just meaningless words people use to make things sound more important than they are and hide the fact that rules, even laws and constitutions, are just words somewhere.

Just the same, most of the so-called 'rights' that are said to exist surrounding health are just hot wind. We sure as hell are not protected by any of those, because they are arbitrary and so is compliance. This system exists mostly on honor and cultural popularity, and this is an issue that is completely dishonorable, and yet most of the medical profession stands on the wrong side. This is a choice, made without duress, fully voluntary. Because there is no enforcement of any kind for any of this. All those systems operate however they want as long as no one comes in and forces them to stop.

Relying on fantasy concepts helps no one here. You don't go around people trashing the place going "excuse me, do you have a permit? you can't do this", which they obviously can if the worst thing that can happen is someone going around haplessly insisting that some made-up rules prevent them from doing what they are clearly doing all out in the open.
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I think there is an important point which is that this bps hounding has made anything moving forward impossible and it’s nothing to do with the patients despite their delusion or even more callous point the finger at the victim as to blame for it being hard.

it’s not patients fault this group for whatever reason became obsessed with ownership of us, or narrative, our future, what we deserve etc to such a suffocating level.

any other patient group put in the same situation of ‘speak up at the devastation and harm this causes to plead for change and say stop’ wouldn’t be doing wrong just for contradicting the harmful make believe these people want to keep imposing on us, even after devastating harm and there is little left of some of us than hope to have some peace of mind whilst we suffer our futures that we being harmed by them doesn’t leave us low hanging fruit to be targeted for more of the same.

bps mighnt even stop saying horrible things about us even if we just said nothing to correct errors and said fine to claiming harms didn’t exist when they did or pretending the trials weren’t full of quality and bias issues. I think most did this when they tried GET or something similar themselves with utter faith and trust having been lied to with a straight face ‘it might hurt at the time but it can’t harm’ only fir when it did leave them unnecessarily more debilitated long-term that history to be lied about. Every patient has a right to report something not working and not be disparaged.

if you are doing reviews for illnesses you can’t leave something errant up and then just blow out weak excuses then claim ‘it’s all too hard’ and leave it up. It’s also not some illnesses fault that they ended up being targeted by the dregs of certain professions that no other patients want near them either. And that’s the point - it’s not ‘just’ about me/cfs , I mean literally as far as the bps Oslo consortium (same people isn’t it?) ambitions to use the bad research being lobbied thru to expand ‘into imposing onto all illnesses’, but also in setting precedent of how to get your own way and what review conclusions end up being ‘based on’ as a war of attrition of someone wanting it to say x .

too many seem to think it’s fine to let them behave so beyond the realms of acceptable because 1. They don’t want to be next to be picked on because they didn’t just be complicit with them and 2. They are grateful for the fibs because even if they didn’t belief it at first it gives them something to brainwash themselves with as to why pwme are ‘less than’ and it’s just another human right, service or basic thing we are to have everyone going along with blocking us from ‘because bps made it hard for us to offer you the basics others would get’.

And that’s how the removal from society and rights has been enacted , through strops and threatened strops from others who want to outcast us making us too hard to be worth the bother of trying to do the norm. And everyone tells themselves it’s just a small one thing then uses the word stigma as if what we experience is just a bit of misunderstanding not that being used as a mechanism to ensure ‘there’s nothing for you’ at the bottom of every service triage that leads us out the door with a label telling people not to let us back in.
 
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Peter Trewhitt said:
Many including PACE did include objective outcomes. However these studies either abandoned or sought to obscure these objective outcomes. The original protocol for Larun et al deliberately excluded consideration of the objective outcomes. Is it because as some researchers have tried to argue that ME/CFS is an inherently subjective experience so it can only be measured by patient self report or that the objective outcomes fail to provide the desired result. Also strangely the researchers are reluctant to even acknowledge the existence of patient reported harms.
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Yes, interesting double standard: Subjective self-report from patients is adequate to claim therapeutic benefit, including in the absence of support from objective measures, while also being insufficient to warn of harm, even though harms require a much lower threshold to trigger concern.

Maybe even a triple standard.

[ETA 'therapeutic']
 
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Nightsong said:
"Trial By Error: Professor Edwards’ Letter to BMJ on the Cochrane Mess":

https://virology.ws/2025/02/03/tria...ds-letter-to-the-bmj-about-the-cochrane-mess/
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Dave Tuller said:
More information about how things went down will undoubtedly emerge as the situation continues to spin out of Cochrane’s control, which seems likely. In seeking to avoid more unwanted attention, the organization’s leaders seem to have created a new scandal for themselves.
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Yes. The amazing thing is that the Cochrane Board reportedly seemed to think that their actions in December would reduce the difficulties the Larun et al review is causing them.
 
Utsikt said:
Was he a part of Cochrane when he wrote that response? That would make an already bad look even worse.
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Why is Meerpohl being quoted in the Rucker article as saying "I find the decision to declare a ten-year-old review as sufficiently up-to-date unusual,...The
basic principle of Cochrane is that if relevant new studies emerge or methods have changed, a review is updated,” when a/ he was a co-author of that article criticising NICE, and b/ he'a a Cochrane trustee and presumably was at the meeting in Prague where they decided to abandon the new review and keep the ten-year old one up and say it's fine? He's on bluesky (I'm not). Has anyone asked him? @meerpohl.bsky.social
 
The Sick Times:
“Really pissed off”: Cochrane receives backlash from advocates and experts after abandoning ME/CFS review

Key points you should know:

  • Cochrane produces systematic reviews of medical interventions that are influential for clinicians seeking to provide evidence-based care.
  • A 2019 review controversially recommended exercise therapy for ME/CFS, despite questions about the quality of the evidence and the experiences of people with the disease.
  • Cochrane acknowledged problems with the review and promised a complete update, then abruptly dropped the update project in December 2024.
  • The situation has sparked sharp criticism of Cochrane from ME/CFS advocates and researchers.
  • An online petition seeking withdrawal of the 2019 review has attracted more than 15,000 signers.
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Written by @dave30th
 
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