Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

This.

 

Indeed, it's not hard to understand. There are studies that show how easy it is to induce improvement in self-reported symptoms even with an ineffective treatment.

It therefore appears Cochrane is too invested in this paradigm to admit the problem.

 

I was listening to Jamie Lee Curtis talking about addiction today, I'm paraphrasing, but when asked what she would want to tell her younger self at the start of her journey to sobriety, she said well theres nothing because you cant hear anything you're not ready to hear, if you're not ready to hear reality, truth, you wont be able to hear it, you cant hear it until you're ready to.

and i thought of our battle to get people to see & hear the staggeringly obvious.

Its not hard to understand, but they just cant hear it. It simply wont go in. Its like water off a ducks back. I dont know how to fight that.

 

It goes even beyond that: it's possible with harmful treatment that is widely rejected as nonsensical, as long as the harm is not, basically, another disease or death. It uses cherry-picked positive subjective evidence, weak as it is, while ignoring negative subjective evidence, based entirely on: nuh uh. It truly is the ultimate pseudoscience. It has all the eminence and authority of real science, but literally none of its reliability, and even less accountability.

Truly, the entire paradigm here is flawed, it simply allows preferred conclusions to be tortured out of unreliable data. But this is Cochrane's entire reason to exist, and the paradigm on which modern clinical practice is built out of. And it's fatally flawed, it's systematically biased. It's too hard to accept, so instead they just dig deeper, committing more harm and failing far longer than any reasonable person should.

But as we've seen, exposing this is basically met with deer-in-the-headlights stares of "what the hell are you even talking about?", because this is "evidence"-based medicine, how could it be wrong? It's based on studies reviewed by professionals! How could any of this be any wrong? And yet it mostly seems to be all wrong, literally worse than nothing at all, because not only does it not add anything, it locks failure in place for decades, effectively ending all research on most conditions.

I still think that this only changes once AIs effectively transform health care, automating most of this process and concluding decisively that it's worthless. Meanwhile we record this failure as best as we can, but I don't think it will change on its own. This is human failure, and those can go on infinitely. Admitting being wrong is basically the fatal flaw here: humans are terrible at it, and doctors are even worse, the consequences of being wrong are too much to bear.

 

Usually, governments should stay out of scientific research and for good reasons. This is just such a unique case that it warrants it.

Although the proper framing here is that none of this is scientific research. Pragmatic trials and studies are in a class of their own that belong to the art of clinical care, rather than its science. They don't measure anything in a scientific sense, they can only use ratings. Lukewarm, not 15C. It's having disguised it as equivalent to science that is the issue, shielding it from accountability by insisting that governments need to stay out of scientific issues, and I absolutely agree with that. And that's basically at its core what evidence-based medicine: we can polish turds into diamonds.

So the way forward may be to make very clear how this is different, how intervening here does not interfere with science since this is, for all intents and purposes, alternative medicine. Produced by licensed professionals, yes, but still not scientific. Systematic reviews are only as good the input, and only as scientific. Systematic reviews of pseudoscience amount to pseudoscience, otherwise it's the metaphorical turd-polishing and that's just nonsense. Here the input is almost all garbage throwing-darts-at-the-wall, pragmatic studies and trials may be formal and run by professionals, but that does not make them proper science. In the end this whole process amounts to "trust us, we're experts", which ironically is the old way that so-called evidence-based medicine claims to replace. In reality it just replaced one king with another while calling it a republic.

And it has deeper implications, like the notion that medicine can treat symptoms, which is not a thing. It's often said but it's simply false. Even when they do something labeled as treating the symptoms, they are dealing with biology, they are dealing with either what causes the symptoms, or how to cover them like with anesthetics. It's basically fundamental to medicine that when they can't treat the disease, they will treat the symptoms, when really they don't even know how to do that, because in the end symptoms are not just signals of something wrong, they are something wrong. But that's a radical paradigm shift, especially one that essentially negates the nonsense that is the biopsychosocial model of illness, and much of the identity of modern medicine.

 

does anyone remember the trend in the early 2000s for whitening toothpastes that turned out they worked... for a while... by being abrasive, so at first 'fresh enamel' looking whiter but longer term not necessarily great. Or getting sent a review request a month after buying something like a bed and realising you can only do it once. So remembering in future you aren't ever going to fill it in before 6months has gone and the thing hasn't slumped in the middle or caused you back pain.

Well imagine if you were only allowed to even complete the survey at six months if you kept up the brushing with it every day even though you saw side-effects, or not only kept the mattress but slept in it every night even if well you didn't sleep or woke up aching all over. Well that would be a pretty filtered sample? If you refused the rest of the feedback from people who 'didn't try hard enough'.

Then imagine if years on people wanted to report what happened long-term from these things and saying it 'wasn't as scientific' as subjective feedback as er you know picking a 7 vs a 6 on one dodgily worded survey question to report you ended up in a wheelchair or unable to work etc. vs not having been before

You are right @rvallee I struggle to find an excuse beyond the blag of 'we don't [meaning won't] measure harms'

Is there actually an equality issue with their research on the basis that if people become more disabled - and/or their disability means they can't 'complete' then they aren't allowed to have their feedback heard. 'only recovered' matter seems to be the mantra, but it isn't really about 'recovered' as having PEM or ME/CFS seems to be what the treatment is filtering out rather than in for research explicitly tending to claim it covers that condition.

 

New entry in PubMed
https://pubmed.ncbi.nlm.nih.gov/39697147/

Review

Cochrane Database Syst Rev . . 2024 Dec 19:12:CD003200.
doi: 10.1002/14651858.CD003200.pub9.
Exercise therapy for chronic fatigue syndrome
Lillebeth Larun 1, Kjetil G Brurberg 1, Jan Odgaard-Jensen 2, Jonathan R Price 3
Affiliations

• PMID: 39697147
  
• DOI: 10.1002/14651858.CD003200.pub9

Abstract


Background: Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is a serious disorder characterised by persistent postexertional fatigue and substantial symptoms related to cognitive, immune and autonomous dysfunction. There is no specific diagnostic test, therefore diagnostic criteria are used to diagnose CFS. The prevalence of CFS varies by type of diagnostic criteria used. Existing treatment strategies primarily aim to relieve symptoms and improve function. One treatment option is exercise therapy.

Objectives: The objective of this review was to determine the effects of exercise therapy for adults with CFS compared with any other intervention or control on fatigue, adverse outcomes, pain, physical functioning, quality of life, mood disorders, sleep, self-perceived changes in overall health, health service resources use and dropout.

Search methods: We searched the Cochrane Common Mental Disorders Group controlled trials register, CENTRAL, and SPORTDiscus up to May 2014, using a comprehensive list of free-text terms for CFS and exercise. We located unpublished and ongoing studies through the World Health Organization International Clinical Trials Registry Platform up to May 2014. We screened reference lists of retrieved articles and contacted experts in the field for additional studies.

Selection criteria: We included randomised controlled trials (RCTs) about adults with a primary diagnosis of CFS, from all diagnostic criteria, who were able to participate in exercise therapy.

Data collection and analysis: Two review authors independently performed study selection, 'Risk of bias' assessments and data extraction. We combined continuous measures of outcomes using mean differences (MDs) or standardised mean differences (SMDs). To facilitate interpretation of SMDs, we re-expressed SMD estimates as MDs on more common measurement scales. We combined dichotomous outcomes using risk ratios (RRs). We assessed the certainty of evidence using GRADE.

Main results: We included eight RCTs with data from 1518 participants. Exercise therapy lasted from 12 weeks to 26 weeks. The studies measured effect at the end of the treatment and at long-term follow-up, after 50 weeks or 72 weeks. Seven studies used aerobic exercise therapies such as walking, swimming, cycling or dancing, provided at mixed levels in terms of intensity of the aerobic exercise from very low to quite rigorous, and one study used anaerobic exercise. Control groups consisted of passive control, including treatment as usual, relaxation or flexibility (eight studies); cognitive behavioural therapy (CBT) (two studies); cognitive therapy (one study); supportive listening (one study); pacing (one study); pharmacological treatment (one study) and combination treatment (one study). Most studies had a low risk of selection bias. All had a high risk of performance and detection bias. Exercise therapy compared with 'passive' control Exercise therapy probably reduces fatigue at end of treatment (SMD -0.66, 95% CI -1.01 to -0.31; 7 studies, 840 participants; moderate-certainty evidence; re-expressed MD -3.4, 95% CI -5.3 to -1.6; scale 0 to 33). We are uncertain if fatigue is reduced in the long term because the certainty of the evidence is very low (SMD -0.62, 95 % CI -1.32 to 0.07; 4 studies, 670 participants; re-expressed MD -3.2, 95% CI -6.9 to 0.4; scale 0 to 33). We are uncertain about the risk of serious adverse reactions because the certainty of the evidence is very low (RR 0.99, 95% CI 0.14 to 6.97; 1 study, 319 participants). Exercise therapy may moderately improve physical functioning at end of treatment, but the long-term effect is uncertain because the certainty of the evidence is very low. Exercise therapy may also slightly improve sleep at end of treatment and at long term. The effect of exercise therapy on pain, quality of life and depression is uncertain because evidence is missing or of very low certainty. Exercise therapy compared with CBT Exercise therapy may make little or no difference to fatigue at end of treatment (MD 0.20, 95% CI -1.49 to 1.89; 1 study, 298 participants; low-certainty evidence), or at long-term follow-up (SMD 0.07, 95% CI -0.13 to 0.28; 2 studies, 351 participants; moderate-certainty evidence). We are uncertain about the risk of serious adverse reactions because the certainty of the evidence is very low (RR 0.67, 95% CI 0.11 to 3.96; 1 study, 321 participants). The available evidence suggests that there may be little or no difference between exercise therapy and CBT in physical functioning or sleep (low-certainty evidence) and probably little or no difference in the effect on depression (moderate-certainty evidence). We are uncertain if exercise therapy compared to CBT improves quality of life or reduces pain because the evidence is of very low certainty. Exercise therapy compared with adaptive pacing Exercise therapy may slightly reduce fatigue at end of treatment (MD -2.00, 95% CI -3.57 to -0.43; scale 0 to 33; 1 study, 305 participants; low-certainty evidence) and at long-term follow-up (MD -2.50, 95% CI -4.16 to -0.84; scale 0 to 33; 1 study, 307 participants; low-certainty evidence). We are uncertain about the risk of serious adverse reactions (RR 0.99, 95% CI 0.14 to 6.97; 1 study, 319 participants; very low-certainty evidence). The available evidence suggests that exercise therapy may slightly improve physical functioning, depression and sleep compared to adaptive pacing (low-certainty evidence). No studies reported quality of life or pain. Exercise therapy compared with antidepressants We are uncertain if exercise therapy, alone or in combination with antidepressants, reduces fatigue and depression more than antidepressant alone, as the certainty of the evidence is very low. The one included study did not report on adverse reactions, pain, physical functioning, quality of life, sleep or long-term results.

Authors' conclusions: Exercise therapy probably has a positive effect on fatigue in adults with CFS compared to usual care or passive therapies. The evidence regarding adverse effects is uncertain. Due to limited evidence it is difficult to draw conclusions about the comparative effectiveness of CBT, adaptive pacing or other interventions. All studies were conducted with outpatients diagnosed with 1994 criteria of the Centers for Disease Control and Prevention or the Oxford criteria, or both. Patients diagnosed using other criteria may experience different effects.

Trial registration: ClinicalTrials.gov NCT01512342.

Copyright © 2024 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.

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Why did they republish this review? Was something changed to this version?

 

Added comment about the new review process being abandoned.

 

Is there any way to find out if this was intentionally done to lose all the comments, complaints and controversies associated with Larun et al 2019? Certainly a casual reader or even a cursory internet search would now pick none of these.

Who in Cochrane would have make this decision? Unfortunately Cochrane are not subject to the FOI legislation?

How do we get search engines to puck up all the Larun et 2019 controversies when people look for Larun et al 2024?

 

The comments are still there from what I can see, so linked to the 2024 version.

You mean this one?

I think it is rather confusing to republish the review if nothing else changed. On Pubmed for example, you don't see the note so people will likely think that the review received an update in 2024.

 

If it’s not standard practice to republish in these circumstances, this is pretty outrageous.

 

Looking at the version history: does seem like it was just about the editorial note as @Yann04 said: