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

Utsikt said:
@Jonathan Edwards I appreciate your patience!

If you say that you study mammals, but only study rats, can you extrapolate those findings to humans because the humans are a subset of mammals?

If yes, why do we need human drug trials?
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I think that's an example where the target group has been excluded, so nothing can be deduced about them.
How about if there is a mix of humans, apes, mice, camels and dolphins?
 
Utsikt said:
If you say that you study mammals, but only study rats, can you extrapolate those findings to humans because the humans are a subset of mammals?
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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.
 
This is all that can be accessed without paying:

ME/CFS: Neuer Streit um potenziell schädliche Aktivierungstherapie erschüttert Cochrane-Netzwerk

Cochrane steht für höchste wissenschaftliche Standards. Bei einem Review zu ME/CFS scheiterte die Organisation jedoch an den eigenen Ansprüchen. Wie kam es dazu?

Es brodelt in der Cochrane-Organisation. So bestätigen es mehrere Personen, die Einblick in die Vorgänge haben. Für Verwerfungen sorgt die überraschende Absage einer neuen, aktualisierten Übersichtsarbeit zur Bewegungstherapie bei ME/CFS, die eigentlich seit langem geplant war. Die Multisystemerkrankung gilt als schwerste Form von Long Covid, besteht jedoch schon lange vor Corona, häufig infolge viraler Infekte.

ME/CFS war unter Ärztinnen und Ärzten schon immer ein Reizthema und ist es bis heute. Die Absage des Reviews ist daher bei weitem nicht einfach ein technischer Vorgang in einer wissenschaftlichen Organisation. Es kursieren Vorwürfe der Intrige, der Irreführung – und einer Schädigung von Patient:innen.

Cochrane gilt als Gold-Standard
Für Gesundheitsfachleute ist Cochrane ist eine Institution. Ein internationales Netzwerk aus Forschenden und praktizierenden Medizin-Expert:innen, das mit seinen Publikationen zahlreiche Entscheidungen im Gesundheitswesen vorbereitet, unabhängig und nach dem weltweit höchstem Evidenzstandard. Aufwändig erarbeitete Reviews beantworten beispielsweise die Frage, welche Nutzen und Risiken eine bestimmte Therapie bei einer Erkrankung hat und wofür es noch an Belegen fehlt. Dazu suchen die Forschungsteams systematisch nach Studien, die zu der jeweiligen Frage durchgeführt wurden, bewerten diese und fassen sie zusammen. Was auch immer Cochrane publiziert: Es findet Eingang in medizinische Leitlinien, Beachtung bei Gesundheitsbehörden und Politik – und wirkt sich für die Patient:innen aus.
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Google translate, so don’t rely on it:

ME/CFS: New dispute over potentially harmful activation therapy shakes Cochrane network

Cochrane stands for the highest scientific standards. However, in a review on ME/CFS, the organization failed to meet its own standards. How did this happen?

There is unrest in the Cochrane organization. This has been confirmed by several people who have insight into the proceedings. The surprising cancellation of a new, updated review on exercise therapy for ME/CFS, which had actually been planned for a long time, is causing upheaval. The multisystem disease is considered the most severe form of long Covid, but it existed long before Corona, often as a result of viral infections.

ME/CFS has always been a controversial topic among doctors and still is today. The cancellation of the review is therefore far from being a simple technical process in a scientific organization. Accusations of intrigue, misleading information - and harm to patients are circulating.

Cochrane is considered the gold standard

For healthcare professionals, Cochrane is an institution. An international network of researchers and practicing medical experts that prepares numerous decisions in the healthcare sector with its publications, independently and according to the highest standard of evidence worldwide. Elaborately prepared reviews answer, for example, the question of what benefits and risks a particular therapy has for a disease and what evidence is still lacking. To do this, the research teams systematically search for studies that have been conducted on the respective question, evaluate them and summarize them. Whatever Cochrane publishes: It finds its way into medical guidelines, is noticed by health authorities and politicians - and has an impact on patients.
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What I could see looks interesting, but the rest could go in any direction.

[edited to add headline]
 
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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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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".
 
Cochrane stands for the highest scientific standards
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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.
numerous decisions in the healthcare sector with its publications, independently and according to the highest standard of evidence worldwide
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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.
Whatever Cochrane publishes: It finds its way into medical guidelines, is noticed by health authorities and politicians - and has an impact on patients.
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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.
 
Trish said:
Magenta was on children. The Larun review explicitly says it's only about adults. Even so, I think Magenta is a valuable contribution on harms as well as ineffectiveness, and should be included.
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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.
 
dave30th said:
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.
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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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