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

Trish said:
Can someone clarify for me the name of the publication of the German article and what sort of readership it has?
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The RiffReporter is a media collective founded in 2016 and based in Berlin. Its concept is that of a working platform with a cooperative infrastructure that enables independent journalists to secure remuneration for their work at a time when traditional publishing houses are struggling economically.

Trained journalists can work in ‘thematic neighbourhoods’ – in partnership with web designers, illustrators, fact checkers, proofreaders and translators – to produce their own articles, get them distributed digitally, especially through the social media, and thus build up a paying readership.

Members take individual responsibility for their chosen subject – whether it is democracy, constitutional matters or popular participation – but the cooperative structure makes it easier to form teams and increases their chances of acquiring public visibility.

www.riffreporter.de
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see
https://www.swissdemocracy.foundation/index.php/home/projects/riff-reporter
 
Peter Trewhitt said:
see
https://www.swissdemocracy.foundation/index.php/home/projects/riff-reporter
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This article is by Martin Rücker. Martin Rücker has for the past years had a focus on topics surrounding ME/CFS and Long-Covid (particularly surrounding things happening in Germany), with his larger focus being health topics in general. From what I recall he used to publish his articles elsewhere but joined Riffreporter a year or two ago. He's fairly active on Twitter where he communicates with patients regularly.
 
I have just spotted that the Editorial note attached to the 2024 version of the Larun review has been edited today. Luckily I kept a copy of the previous version, so I'll post them both here and show the change in red


Editorial note (19 December 2024):
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. Accessed 18 December 2024.

This Editorial Note is for the above article, published online on 2 October 2019 on the Cochrane Library (https://www.cochranelibrary.com/), and has been issued by the Publisher, John Wiley & Sons Ltd, in agreement with the Cochrane Collaboration. The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019."


Editorial note (19 December 2024; amended 31 January 2025):
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. Accessed 18 December 2024.

This Editorial Note is for the above article, published online on 2 October 2019 on the Cochrane Library (https://www.cochranelibrary.com/), and has been issued by the Publisher, John Wiley & Sons Ltd, in agreement with the Cochrane Collaboration. The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019, which includes studies from searches up to 9 May 2014.
 
Trish said:
I have just spotted that the Editorial note attached to the 2024 version of the Larun review has been edited today. Luckily I kept a copy of the previous version, so I'll post them both here and show the change in red


Editorial note (19 December 2024):
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. Accessed 18 December 2024.

This Editorial Note is for the above article, published online on 2 October 2019 on the Cochrane Library (https://www.cochranelibrary.com/), and has been issued by the Publisher, John Wiley & Sons Ltd, in agreement with the Cochrane Collaboration. The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019."


Editorial note (19 December 2024; amended 31 January 2025):
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. Accessed 18 December 2024.

This Editorial Note is for the above article, published online on 2 October 2019 on the Cochrane Library (https://www.cochranelibrary.com/), and has been issued by the Publisher, John Wiley & Sons Ltd, in agreement with the Cochrane Collaboration. The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019, which includes studies from searches up to 9 May 2014.
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But the review is still dated as published 19 December 2024, so still potentially misleading as the casual reader will look at the abstract and not the editorial note.
 
Peter Trewhitt said:
But the review is still dated as published 19 December 2024, so still potentially misleading as the casual reader will look at the abstract and not the editorial note.
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Also as the latest alteration to the editorial note illustrates, there is no necessity for the article to have the same date as the editorial note. It would have been totally possible to leave the review dated 2019 but to have a new editorial note dated 2024 or as now 2025.
 
Petition now at 14,900, and some powerful heartfelt comments being added.
I wish those GET supporters who persuaded Cochrane to act as they have, and the Cochrane board who made the decision would be forced to read them all.
 
Hutan said:
Given that Magenta had objective outcome results that aligned with subjective ones and given the abject failure of the GET therapy, with deteriorations in activity levels on average, and the very unusual admission that a suicide attempt may have been linked to the study, it at least constitutes strong evidence of harm.

Significant harm caused to young people surely needs to be considered when deciding whether a treatment causes significant harm to adults, especially in the absence of reliable harm data collection in adults. The Magenta trial provides the unbiased scaffolding on which anecdotal reports of harm caused to adults, e.g. surveys, the many accounts of harm on the petition, can hang. There is every reason to think that the types of harm identified in the 13 to 18 years old are also occurring in older people.

Which makes Cochrane's action of slapping a 2024 label on the 2019 review and saying 'no new evidence, move along' particularly egregious.

There are also some studies of traditional Chinese exercise therapies. It appears that Cochrane has a blinding Western bias, if these studies are invisible to it.
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It would also be easy to simply subgroup within the same review. Especially when subgrouping, usually framed as 'responders' vs 'non-responders' has been common practice. Given the operating models used here, there is simply no basis to claim significant differences between adults and children in the same way as is actually needed with drugs. There are contexts where a complete separation is important, but this a fully generic model where nothing that applies to adults can be claimed to not apply to children, which is always done because there are important biological differences.

And while the argument could be made that a single study isn't enough to justify an update, this is the literal idea behind systematic reviews, and just a few months ago a 'living review' was published in the BMJ comparing various treatment approaches and claims of effective rehabilitation were made from a single study, so it's not as if making claims from a single study is considered invalid, and there have been more anyway, but also evidence of harm massively overrules meagre evidence of benefits.

But of course actively cherry-picking and selectively reporting is what this ideology is all about. Making the very idea that they ever do 'systematic' reviews beyond laughable.
 
Hutan said:
Thanks to a member, we can post some excerpts, focussing on things that may be news to members:
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Damn, very good article. And such an indictment of Cochrane's incompetence and tragicomic level of malfeasance. This organization should not even exist, it is completely unfit for purpose. The facts paint a picture of over-the-top corruption even by the usual standards of corrupt industries, or even comically corrupt politicians surrounded by cronies and sycophants. And none of this makes any difference, which says a lot about the failures of medicine to conduct itself professionally. The process of learning from mistakes is impaired by systematically covering them up, as a standard.
the new group of authors, which had already been terminated, had only just completed the protocol, i.e. the methodological framework for the review
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The author missed that the protocol was sent to Cochrane 2 years ago, who just sat on it without saying a word. Such a damning fact on its own. Because this suggests that the writing group took 4 years to produce it.

It's also remarkable that Cochrane appears to blame its own ineptitude and failures of basic communication in dealing with the masks study, only to basically act in an even worse manner on every point. Quite literally pointing at their own incompetence to justify even worse incompetence. And that review is still gleefully cited by deniers and minimizers saying exact what they claim it doesn't say.

It's really good to see mostly accurate details being reported competently. What a change from the usual.
 
I'm sorry I'm not able to keep up and am now woefully out of step with this thread & the situation as a whole, to be honest I am so fuzzy i just cant process most of it my brain is unable to take it in. But a couple things i wanted to pick up on
Hutan said:
Perhaps they really do believe that we are all a bunch of hypochondriac whiners and that stories of deterioration after GET are just made up. Perhaps they do believe that certain ME/CFS charities have whipped up this global myth that exercise is harmful. Perhaps they believe that telling someone that they could be well if they wanted to be is not psychologically damaging, because they really believe that we could be well if we wanted to be.
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I think this is exactly right except for the line i crossed out. I dont think they believe we made it up, well perhaps some of them do but in general i think they believe that we got worse because we believed we would. They think all the worsening is just a nocebo effect on subjective symptoms & therefore can be dismissed.
 
dave30th said:
As a native (American) English speaker, I'm not sure what it means.
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In British media, a reverse ferret is a sudden reversal in an organisation's editorial or political line on a certain issue. Generally, this will involve no acknowledgement of the previous position

I actually didn't know where the phrase originated, but I do know about ferrets and trousers (not directly, I might add, but just the general popularity of jokes about ferrets when I was growing up)
This is the full explanation https://en.wikipedia.org/wiki/Reverse_ferret
 
Caroline Struthers said:
In British media, a reverse ferret is a sudden reversal in an organisation's editorial or political line on a certain issue. Generally, this will involve no acknowledgement of the previous position

I actually didn't know where the phrase originated, but I do know about ferrets and trousers (not directly, I might add, but just the general popularity of jokes about ferrets when I was growing up)
This is the full explanation https://en.wikipedia.org/wiki/Reverse_ferret
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Any word for the double reverse ferret? À la Garner?

Believes ME is total BS -> Gets long COVID apologises and acts like he now completely understands -> Is lucky to recover himself and then reverts to his stance of ME being total in the mind type stuff.
 
I was able to skim a little bit the part in this thread about directness/indirectness in PACE.

I have often struggled to grasp why the fact that PEM wasnt req'd isnt a key issue, so have been really grateful to @Jonathan Edwards & @Utsikt & others for discussing it here.

The RA/pain killers analogy is jolly useful. And this following quote from Jo makes total sense to me. Esp the bit I've bolded.
Jonathan Edwards said:
There would be a good case for saying that if PACE had shown a positive result for GET for chronic fatigue syndrome patients as defined by Oxford, without requiring PEM that further analysis of benefits and harms for the PEM subset was warranted. They did the analysis for benefit, which showed no difference. They did not analyse harm well. NICE was faced with having to make a decision based on the most likely interpretation of existing evidence. If PACE had a valid positive result they should perhaps have still given a caveat, but they decided that PACE did not give a usefully positive result.
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So, in my own words...
Had PACE shown benefit in the wider group, then the indirectness plus patient reports of harm, would be a strong indication that we need to look again at that subcategory. But the indirectness alone, wouldnt say that the results DIDNT apply to the PEM group.

Is that right?

I'm highlighting this here because I think it may be useful in what I'd like to suggest, if it hasnt been suggested already ...

Which is that as part of our 'S4 factsheets' project we also do a factsheet with simple explanations of the issues/flaws in all the CBT/GET trials.

I say this because while I think I now grasp most of the main issues with PACE etc, (switching outcomes, subjective outcomes comb'd with lack of blinding etc) I have found the Indirectness argument the one that was easiest to understand, AND, cruicially, the one I've found that people in general seem to understand easiest when i talk to them.

That may well be because my ability to explain things is crap - understanding something isnt the same as being able to teach it. But I suspect thats not the only reason, because people who're in jobs where they ought to understand the finer points of trial design also dont seem to get it.

I think the argument that 'they studied all fruit so the results cant be extrapolated to strawberries', is initially the easiest concept to get your head around, especially if you're still under the illusion that scientific studies are always accurate & reliable if they're peer reviewed & published.

But now I see that it's not the best argument at all! Because why wouldnt a study apply to strawberries, because strawberries are also fruit! (is this right Jonathan?)

So I'm now hoping we can get some kind of succinct description of the major flaws in BPS studies, the reasons they actually show that these interventions dont help anybody. On a fact sheet.

I suspect that the indirectness argument is more cognitively & emotionally comfortable in general (at least for me & the people i talk to), because the idea that 'well these studies exist & are ok, but they only show that they might help people who're merely fatigued, but we're different & they dont help us'.
That is much easier to take on board as a member of the general public, than the idea that huge swathes of so called scientific literature is so fundamentally flawed that were it all to be examined it would pull the rug out from under the majority of psychological science.

I think we especially need a factsheet on this because all outher sources seem to be using the the indirectness argument... it's the main one i see from the MEA etc.

Of course, all the relevant info is detailed & spread all over the forum scattered across thousands of posts, plus @dave30th Virology blogs, @Brian Hughes website & book, Graham's amazing videos etc etc etc. But i find the spread out nature of it all really difficult to utilise.

So I think it'd be amazing to have a 1 or 2 sided fact sheet with the main arguments on & links to more detailed info. Something a new patient, interested journalist, Dr, budding psychologist etc could read.

Lol... someone is now going to tell me thats already on the factsheet list to do, & i will turn over & go back into the void :D

p.s. sorry mods i know it's a bit off topic, but I cant find the relevant fact sheet thread to put this on
 
Nora Batty anyone? TBH the whole BPS thing is Compo level daft, if only it were as amusing.



Ignore this post if you dont know what it means it's a ref to an old uk tv show where a man with daft ideas also kept a ferret in his trousers
 
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