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The current review uses outdated diagnostic criteria for CFS, rather than the more specific diagnostic criteria for ME/CFS1-6.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Group set up by Cochrane recommended adding an editorial note to the 2019 review to clarify that the review was out of date and therefore should not be the basis of clinical decision-making about people with ME/CFS.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

https://twitter.com/user/status/1895170730985181668
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Sasha said:
I'm pleasantly and, I have to say, massively surprised by that statement from BACME.
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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.
 
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Sasha said:
I'm pleasantly and, I have to say, massively surprised by that statement from BACME.
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Peter Trewhitt said:
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.
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I'm not surprised. They have superficially gone along with the NICE guideline. Note that they say we "find overexertion to be detrimental" in this statement, yet in their position paper published in 2020 and updated in 2022 after the NICE guideline was published they say:

BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline. BACME does not support inflexible Graded Exercise Therapy (GET) built on a primary deconditioning model.
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https://bacme.info/wp-content/uploa...-on-the-Management-of-ME-CFS-October-2020.pdf

And their representative on the Cochrane IAG, Peter Gladwell, supports pacing up, as seen in his materials shared via AfME.

BACME speak with forked tongues. They want to be seen to be on our side but at the same time want to maintain their jobs running rehab clinics with CBT and watered down GET.
 
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]
 
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Yes, I want to reiterate those well-expressed points from @Jonathan Edwards and @Robert 1973. I'm not sure how we get many of our high profile advocates to understand the problem of focussing on the diagnostic criteria issue, much less the likes of BACME who still have one foot firmly in the BPS camp.

The thing is with BACME, they don't see they have anything to lose from the recognition of PEM. They become the ones with the special knowledge, the magic capability to divine when someone has PEM and the knowledge of how to manage it (typically using a more cautious form of activation therapy), all the while being able to continue on with business as usual with everyone else with fatigue.
 
As posted on the Letters and complaints locked thread:
_______________

This post refers to our formal complaint about republication of the Larun 2019 review as if it were a new review dated 2024.
A copy of the complaint was posted here:
https://www.s4me.info/threads/s4me-...rcise-therapy-review.34973/page-3#post-585637

I have today, 3rd March 2025, sent the following email to
complaints@cochrane.org

To Cochrane Complaints

I submitted a complaint using the complaints form on 5th February 2025. The on screen message indicated it had been successfully submitted.

The published Complaint timeframe tells me:
  • All complaints will be formally acknowledged within three working days.
  • If possible, confirmation on whether your complaint will be investigated will be made within three weeks. If this is not possible, an interim response will be given within three weeks.
I still have not received the formal acknowledgement, despite the following:

On 12th February I wrote to Cochrane complaints to ask for the formal acknowledgement.

On 12th and 13th February Cochrane complaints wrote back saying my query would be passed to the right person, with a query number #COMP00194572, and to tell me my query had been sent to the right people.

On 20th February, with still no formal acknowedgement, I assumed the complaint had been lost, so I resubmitted it on the complaints form. Again I had the onscreen message that my submission was successful.

Again, no formal acknowledgement within 3 days.

The 3 weeks for a response since my original submission on 5th February have now also passed.

Please can you ensure the formal acknowledgement is sent, and provide me with an explanation.

Thank you,

Trish Davis, on behalf of the committee of the Science for ME forum.
____________________

I have no idea what Cochrane are playing at. Their complaints system is messing us about. I know the compaints form works, because we had formal acknowledgements on the same day as submission for the previous complaint, and for the appeal about that complaint.
 
I have this morning sent the following to my Cochrane country representative (who is also a member of the Cochrane Board).

  • All complaints will be formally acknowledged within three working days.
  • If possible, confirmation on whether your complaint will be investigated will be made within three weeks. If this is not possible, an interim response will be given within three weeks.
  • If a complaint is investigated, those who made the complaint will be informed of the outcome but will not necessarily be kept regularly updated in the interim.
It is now over 3 weeks since the complaints I mentioned in my last email were submitted to Cochrane. We have had no formal acknowledgement of receipt. We have had no confirmation that the complaints will be investigated. We have had no interim response.

The complaints are not vexatious. They are about things that no publisher should do - arbitrarily slapping a new publication date 5 years later than the real publication date on an unchanged paper, passing the paper off as up to date. And, in the process, suggesting that the unaddressed comments on the paper do not apply to the 'new' version. These actions are so egregious that surely everyone in Cochrane can see that they are unethical?

You are the New Zealand representative. If you won't engage on this matter, who should I contact? Are we supposed to submit another complaint about the non-functioning complaints system, a system that only ever essentially says 'talk to the hand'?

You are now unequivocally in a position to act. I hope you will.
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Perhaps others could contact their Cochrane national representative to ensure that they are aware of what has been done in Cochrane's name?
 
Hutan said:
Perhaps others could contact their Cochrane national representative to ensure that they are aware of what has been done in Cochrane's name?
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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
 
Then also the Cochrane Consumer Network which has potentially relevant Objectives:

Our objectives are designed to reflect our vision, mission and Cochrane’s principles.

  1. Advocate for consumers as users and producers of Cochrane evidence
  2. Advise and give practical support to the whole Cochrane community in engaging and involving consumers in producing usable, accessible, quality evidence to inform health decisions
  3. Represent the priorities and concerns of healthcare consumers to Cochrane
  4. Engage with a diverse and global range of healthcare consumers, patient-led organisations and partnerships with organisations and in the global health research community
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However I suspect they see their role as getting people to do things for Cochrane rather than helping people to advocate to Cochrane.
 
Just checked my emails and found the response to our complaint:

This post refers to our formal complaint about republication of the Larun 2019 review as if it were a new review dated 2024.
A copy of the complaint was posted here:
https://www.s4me.info/threads/s4me-...rcise-therapy-review.34973/page-3#post-585637

Received today, 3rd March 2025 at 14.31
_____________________

New reply for your query (ticket #COMP00195461)

Dear Trish,

Thank you for submitting your concerns regarding this particular review. We have now completed our assessment of your complaint #COMP00195461 submitted on 20th February.

Cochrane decided to publish the editorial note in question with a new citation to ensure discoverability of our decisions regarding this review.

This decision does not breach our editorial policy but uses operational discretion in applying the publication guidance regarding editorial notes. Neither the editorial note, nor the decision to publish it with a new citation, indicates that the 2019 version of the review has been updated in any way.

The published review does not make any recommendations for or against exercise therapy. This is in line with our guidance which prevents Cochrane Reviews from making prescriptive recommendations about using an intervention.

Please note, that we will now close this complaint.

Regards,

Cochrane Complaints
______________________
 
I find the above justification of the new citation totally ridiculous. And it's another anonymous letter.

Sigh. So now another appeal to be written and submitted.

Don't know why we bother really. They are treating people with ME/CFS with contempt.
 
Trish said:
Neither the editorial note, nor the decision to publish it with a new citation, indicates that the 2019 version of the review has been updated in any way.
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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.
 
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Trish said:
The published review does not make any recommendations for or against exercise therapy. This is in line with our guidance which prevents Cochrane Reviews from making prescriptive recommendations about using an intervention.
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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?
 
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