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

Yes, that is why we test drugs on rats and if they work on rats we test them on humans.

But the analogies need to be realistic. The sets and subsets have to be relevant to what is being studied. Where there are obvious differences in members of a set then confidence changes but the most probable interpretation does not necessarily change.

If you found that hip replacements with a diameter of 4mm worked well in rats you would not expect them to work in humans. The category of mammal has to be relevant to the intervention. If you found that rats can be kept alive with water from a certain mineral spa as therir only source of fluid without dying of radioactivity or whatever you could reasonably recommend that water in larger amounts for human consumption and we do - because we think mammals are pretty similar in their need for water and susceptibility to poisons. That is basically how water quality is judged in practice.

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.

 

Please delete if this has already been posted, but looks like a german news source has made a long article about the Cochrane situation. https://www.riffreporter.de/de/wissen/mecfs-cochrane-aktivierungstherapie-get-pace-exercise-bewegung

It’s paywalled though…

 

This is all that can be accessed without paying:

Google translate, so don’t rely on it:

What I could see looks interesting, but the rest could go in any direction.

[edited to add headline]

 

Comments have started appearing on the MEAction blog about Cochrane’s abandoning the replacement exercise review (see https://www.meaction.net/2025/01/24...alysis-of-exercise-therapy-review-for-me-cfs/ )

My comment includes a link to our petition.

 

Not just Cochrane but everyone else involved in this. But 100% this, it's absolutely the case that they simply reject reality and substitute their own.

I don't understand why anyone continues to pretend otherwise, that the lies about them accepting that our symptoms 'feel' true is anything but a misdirection. The underlying model is very explicit about it and I will never understand why so many pretend their concerns are any genuine. It's an ideology, it's irrational and always will be.

This is a political ideology that originates from a single starting point: "I don't believe you".

 

Uh, hopefully this is a mistranslation because whew, not even close. EBM is not scientific at all. It is explicitly alternative to. As standards, they are so far below what every other profession uses and it's not even close.

In anything relating to computers, whether it's programming, IT or computer science, we literally don't even look at anything with such a low level of validity. And as an industry it's mostly a free-for-all, it's that doing so doesn't work and when we do things that don't work we either 1) get fired or 2) lose our job anyway because the company goes bankrupt or the project gets cancelled.

Good grief this is almost North Korea Dear leader level of misrepresentation. They are not independent in the slightest, and ignore their own standards to bias things in a specific direction.

And yet it's not only completely unaccountable and operates in complete secrecy, being subject to zero oversight or transparency obligations, but by their own admission they don't even have the resources to do the most basic part of their job.

It's formal, formulaic even, but even then the very problem here and on most psychological studies is that they don't respect their rules and standards in order to explicitly overhype the efficacy and validity of pseudoscience simply because they find it better to have non-pharmaceutical interventions as an inherent benefit in itself, that it only has to crawl over lowered standards and appear barely effective in order to be hailed as a transformative fully effective universal solution.

Using science as a cover for arbitrary agendas is exactly what pseudoscience is. Cochrane's brand is eminence, not evidence. It's a political lobby far more than a scientific anything.

 

I assume he was quite involved.

 

Atle Freiheim does stand-up comedy as a side line to his public health responsibilities, apparently. Maybe some of his answers need to be viewed in that light.

 

Can I post the letter? Or does that blow the chance that BMJ will?

 

Given that this was supposed to be a new review, there is no excuse for excluding MAGENTA on the grounds that the Larun review was just adults. The new protocol presumably would have included pediatric studies.

 

Not sure, it's common to split evidence for adults versus children.

 

The Common Mental Disorders section of cochrane grabbed CFS back when, so that's how it ended up there.

 

true, but given that there is solid evidence now of lack of responsiveness among children, it would have been surprising to me if the new review had not made sure to include it.

 

Old Woody Allen joke. "My brother's crazy, he thinks he's a chicken." "Oh, no, have you taken him to the psychiatrist?" "No, we need the eggs."

 

this seems like something of a categorical overstatement. The statisticians I know, at least those working in public health/medicine, certainly understand about blinding.

 

half-human. Not sure Spock can be trusted in these circumstances.

 

As a native (American) English speaker, I'm not sure what it means.

 

this is from the brief intervention study from Norway, in which the overall benefits did not reach the threshold for clinical significance but they claimed success anyway by focusing on changes within the intervention group. I wrote about that study yesterday.