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

https://bacme.info/wp-content/uploa...e-decision-of-the-Cochrane-Collaboration_.pdf

14 February 2025

BACME statement regarding the decision of the Cochrane Collaboration to abandon an updated review of treatments for ME/CFS and concern that there is no editorial note clarifying the shortcomings of the published review

BACME are deeply concerned by the decision of the Cochrane Collaboration to not proceed with an updated review of exercise therapy for ME/CFS which Cochrane committed to nearly five years ago. The decision to update the 2019 review led to the establishment by Cochrane of the Independent Advisory Group (IAG) as a stakeholder engagement initiative for the Cochrane review on exercise and ME/CFS. The IAG included representatives of national and international organisations of people with ME/CFS, healthcare practitioners, and scientists including those with systematic review expertise. We are concerned that the Cochrane Collaboration have ignored the advice of its own IAG.

The current review uses outdated diagnostic criteria for CFS, rather than the more specific diagnostic criteria for ME/CFS1-6. As a result, the 2019 review is of studies with participants who were experiencing chronic, disabling fatigue. BACME are concerned that there is no clear distinction being made between chronic disabling fatigue (a common symptom) and ME/CFS, a complex, chronic medical condition affecting multiple body systems, and with many disabling symptoms and has a cardinal symptom of post-exertional malaise (PEM)1-6. People living with ME/CFS find overexertion to be detrimental and advice and support needs to account for this as described within the 2021 NICE guidelines.

The Independent Advisory Group set up by Cochrane recommended adding an editorial note to the 2019 review to clarify that the review was out of date and therefore should not be the basis of clinical decision-making about people with ME/CFS.

BACME is a charity that represents clinicians, specialist ME/CFS services and people living with ME/CFS and we call on the Collaboration to address the serious issues with the 2019 review by adding an editorial note and to reconsider the decision to stop the new review.

References

1. Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lemer AM et al. Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatment protocols. Journal of Chronic Fatigue Syndrome. 2003; 11(1):7-115

2. Carruthers BM, Van de Sande MI. Myalgic encephalomyelitis-adult & paediatric: International Consensus Primer for Medical Practitioners. 2012. Available from: http://www.investinme.org/index.shtml

3. Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T et al. Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine. 2011; 270(4):327-338

4. Institute of Medicine. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC. The National Academies Press. 2015. Available from: https://dx.doi.org/10.17226/19012

5. National Collaborating Centre for Primary Care. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children. NICE clinical guideline 53. London. Royal College of General Practitioners, 2007. Available from: http://guidance.nice.org.uk/CG53

6. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NICE clinical guideline 206. London. 2021. Available from: https://www.nice.org.uk/guidance/NG206

 

I'm pleasantly and, I have to say, massively surprised by that statement from BACME.

 

My first thought was should we start a thread to recognise the constructive acts by BACME, but would one post be enough to warrant it.

But good that the critical comments on Cochrane’s abandonment of the new exercise review and their endorsement of the flawed Larun et al review keep coming in.

 

It is a pity that they argue on the basis of diagnostic criteria rather than the fact that there is no meaningful evidence for benefit of exercise in whatever category. It is nice to see that they are 'concerned' maybe but it shows no insight into the basic problem - that they continue to practice without a valid evidence base.

If BACME want to be taken seriously by patients they need to show that they have at leat basic insight into clinical trial methodology.

 

The problem with arguing on the basis of the diagnostic criteria is that it implies that the Cochrane review (and therefore PACE) gave us meaningful evidence of efficacy using the “outdated diagnostic criteria for CFS” which included people “disabling chronic fatigue” who don’t have PEM. But the truth is that it gave us evidence of the opposite: that exercise therapy doesn’t seem to help anyone with ME/CFS, however loosely it is defined.

In the design stage it was legitimate for people to criticise PACE for not requiring PEM because a positive result could have been used to justify giving exercise therapy to people with PEM for whom it could be harmful. But now that PACE has provided us with good evidence that GET and CBT don’t seem to work for anyone with “disabling chronic fatigue”, however loosely it’s defined, criticising the diagnostic criteria in the Cochrane review is not just unhelpful but positively counterproductive.

[Edit: changed “exercise” to “exercise therapy” for clarity]

 

I'm unsure if it's a "broken clock" thing or an "it's a trap" one, and historically things tend to lean on the second one, but let's see where this goes anyway.

 

Thank you Trish and all involved for this continued banging of your head against the wall that is Cochrane.

 

Did we start compiling a list of national Cochrane groups some time ago? I tried looking to see if there was any UK rep, but found nothing of than reference to the closed Cochrane UK.

This link lists the various nation Cochrane groups along with their contact details see https://www.cochrane.org/about-us/our-global-community/geographic-groups

 

There are also the Cochrane method groups (see https://www.cochrane.org/about-us/our-global-community/methods-groups for a list), including the Adverse Effects Methods Group and the Bias Methods Group.

 

Also potentially relevant their Consumer Engagement and Involvement and their listing of Funders and partners

 

Then also the Cochrane Consumer Network which has potentially relevant Objectives:

However I suspect they see their role as getting people to do things for Cochrane rather than helping people to advocate to Cochrane.

 

I'd argue that since the practice of changing the date without changing anything is virtually unheard of, the reasonable assumption for most people will be that it is a 2024 paper. They're not explicitly saying it's been updated, but in terms of the obvious consequence which they surely could have predicted (and which we already saw with people sharing the "new" review on Twitter), they might as well have.

 

this seems like sophistry or just semantics to me. You don't need to use the phrase "We recommend" in a sentence for a positive assessment of an intervention to be considered a recommendation. The review "recommends" exercise therapy in the common-sense meaning of the word, which is understandable to all native speakers of English. ADD: Maybe "semanticism"? Is there such a word? Using semantics or linguistic hair-splitting to deny reality?