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

Trish said:
It's a pretty good and accurate article. I'm not surprised the Cochrane comment about their withdrawal policy omits to mention that they can withdraw reviews on the ground of harm.
Good to see our petition quoted.
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Yes, although it is a shame I think that the journalist never contacted the people running the campaign and petition, although our arguments are summarised in the petition updates. The article makes no comment about the relabelling of a 2019 article as a 2024 one. And it notes that 14,000 people have signed the petition but does not note that 79 ME/CFS and Long Covid organisations from around the world have called for the withdrawal of the review, which I think is a much stronger point.

The review recommends exercise therapy to treat ME/CFS, a treatment approach that drew widespread criticism from the patient community and researchers, who say physical activity isn’t an adequate remedy for the condition.
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When you say it like that, that 'physical activity isn't an adequate remedy for the condition', it makes it sound quite obvious. Physical activity isn't an adequate remedy for lots of diseases, why should it be in this case? A phrase to borrow I think.

Cochrane abruptly ceased communication and made little effort to explain why the pilot was abandoned, said Hilda Bastian, a meta-scientist, writer and cartoonist in Australia who was a founding member of the Cochrane Collaboration. “It’s hard to find a word to describe how badly they treated everybody involved in this,” she said. “It’s been pretty appalling behavior.”
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According to Bastian, while the review has “really severe problems,” it doesn’t meet the threshold for withdrawing review articles under the journal’s new policy.
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Good to see this from Hilda.

Guidelines released by the US Centers for Disease Control and Prevention also state exercise therapy is not a cure for ME/CFS, and note exercise routines for healthy people may be harmful for patients with the condition.
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And it was good to see both NICE and the CDC mentioned.

Edwards said the review in question was “being widely cited and used for these purposes” but did not have at hand an example of the document being cited in policy documents.
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There's an example of where the people running the campaign could have helped the journalist fill in the gaps. From memory, we have mentioned the RACGP guidelines on exercise therapy for CFS in the updates, so that information was available and it's odd that the gap in the story was left.

The review is of “extremely poor quality,” added Jo Edwards, an emeritus professor of Connective Tissue Medicine at University College London. Edwards said he has seen several past versions of the review. “It produces a message, which is contrary to what the NICE [National Institute for Health and Care Excellence] assessment has made and is simply not in the patients’ interest,” he said.
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Thanks to @Jonathan Edwards for the great responses and to the forum member who directed the journalist to Jonathan and Hilda.
 
The bit about not having an example to hand was in response to a quick afterthought email from the journalist asking why there was a problem if the review was not being cited. I could have found an example pretty easily but they didn't ask for any. I was not over impressed that the journalist was committed to getting a strong story - just a quick skim of opinion.
 
Yann04 said:
Yes it really felt like they were trying very hard to find something to insert scepticism to our side of the story. Hence, that comment and others.
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Yes I thought so too. There were little jabs dotted throughout. Also shoddy of them to get comment from Cochrane and not from pwME who put up the petition, and have all the facts and personal experience.
 
Open letter from the IAG to Cochrane: https://hbprojecttalk.wordpress.com/2025/01/24/independent-advisory-group-open-letter-to-cochrane/

Hilda's blog post: https://absolutelymaybe.plos.org/20...cientific-society-and-community-values-clash/


This was posted on the talk page by Hilda:

1/24/2025
Independent Advisory Group Open Letter to Cochrane
Today, the Independent Advisory Group (IAG) sent the letter below to the Chair of the Cochrane Collaboration’s Governing Board, as well as members of the Governing Board, the Executive Leadership team, the Editorial Board, and the Consumer Network Executive. It is the first of several actions planned by the IAG.

Hilda Bastian on behalf of the IAG


Open Letter to Dr Susan Phillips, Chair, Cochrane Governing Board

24 January 2025

Dear Dr Phillips,

We are the members of the Independent Advisory Group (IAG), a stakeholder engagement initiative for the Cochrane review on exercise and ME/CFS, appointed by the Cochrane Collaboration. Our group includes representatives of national and international organisations of people with ME/CFS, healthcare practitioners, and scientists. The IAG also includes systematic review experts whose senior Cochrane leadership roles span the Collaboration’s history. [1]

For nearly five years, we supported the project despite several lengthy unexplained delays. We were not asked for advice at key points, such as when the editorial unit received the draft protocol. Communication from the IAG to senior Cochrane management remained collegial throughout.

However, on 16 December 2024, Cochrane management sent us an email from the Office of the Editor in Chief, with no signatory, informing us that Cochrane’s Governing Board, Executive Leadership Team, and Editorial Board had decided to cancel the updating of the review. Our advice had not been sought on that decision. The email did not allow time for IAG members to prepare responses to their communities before the decision was announced publicly, and did not contain information on critical issues yet to be resolved.

The same day, and without advance notice, Cochrane management wiped the section of the organisation’s website that provided information about the IAG, including the public reports to December 2023, automatically re-directing visitors to a brief announcement of the project’s cancellation. That included a statement that while complaints could be lodged to a specific email address, any correspondence on this decision sent directly to individuals at Cochrane would “not be considered.” [2]

We note that Cochrane’s principles for collaboration set out an expectation of “a commitment to transparency, openness, and accountability” from managers in relationships, communication, and actions, as well as the promotion of “regular participation in a spirit of mutual respect, inclusivity and co-operation.” [3] This does not reflect our recent experience. We note that the Governing Board commits to accountability for its decisions. [4] The statement that direct correspondence will not be considered does not reflect that commitment.

Cochrane established the IAG as “a pilot project for engaging stakeholders […] in the development of high-profile Cochrane Reviews.” [5] In information provided for potential members of the IAG, Cochrane wrote that it was “hoped that the process for engaging stakeholders that is developed for this review could be adopted by other high-profile Cochrane reviews” and stated that the IAG would be “asked to provide feedback on the process.” [6]

However, the IAG’s advice was rarely sought, and we were not given an opportunity to provide feedback about the cancellation of the update of the review. Through its Consumer Engagement and Involvement webpages, Cochrane professes its commitment to involving patients, carers, and other stakeholders in its research. Consumer involvement, it is stated, “is vital to Cochrane’s work” and is “a key part of the production of Cochrane evidence.” [7] Our experience, as members of a stakeholder IAG, stands in stark contrast to these statements, indicating a troubling disconnect between Cochrane’s stated commitment to consumer involvement and their actions towards consumers they chose to involve.

We express our dismay and concern at the rejection of our formal advice in 2024 to append an editorial note to the current version of the review stating that it is out of date and should not be used for clinical decision-making, as Cochrane has done for other reviews. Instead, Cochrane re-issued the review in December, dated it 2024 despite the last search for studies being over 10 years ago, ostensibly affirming its content as current, again without discussion with us, its appointed advisors. Cochrane has thereby further intervened in this issue, without having properly addressed criticisms of the review, subsequent evidence and developments in the field, or its very outdated methodology.

As an organisation that seeks to be a source of trusted evidence to inform decisions, there is an obligation for the Cochrane Collaboration to deal with outdated reviews (like this one) that are found to be clearly counter to that goal, whether or not those reviews meet the criteria for formal withdrawal.

We look forward to your response, and request an opportunity to meet with you.

Yours sincerely,

Hilda Bastian (Group lead and Cochrane Emeritus Member), on behalf of all members of the Independent Advisory Group for stakeholder engagement for this review, including Katharine Cheston, Lily Chu, Mike Clarke, Miranda Cumpston, George Faulkner, Peter Gladwell, Penelope McMillan (with Penelope Del Fante), Jaime Seltzer, and Samuli Tani.

References:

[1] Membership of the IAG (2023). (Web Archive link) https://web.archive.org/web/2024051...older-engagement-high-profile-reviews-pilot-2

[2] Update on ‘Exercise therapy for chronic fatigue syndrome’ (2024). https://www.cochrane.org/news/update-exercise-therapy-chronic-fatigue-syndrome

[3] Principles of Collaboration: Working Together for Cochrane (2019). https://community.cochrane.org/orga...iples-collaboration-working-together-cochrane

[4] Code of Conduct for Trustees (undated). https://community.cochrane.org/orga...erning-board/membership/code-conduct-trustees

[5] Stakeholder engagement in high-profile review pilot. (Web Archive link) https://web.archive.org/web/2024041...eholder-engagement-high-profile-reviews-pilot

[6] Information for members of the Independent Advisory Group (Cochrane Collaboration, unpublished).

[7] The statement of principles for consumer involvement in Cochrane (2017). https://www.cochrane.org/news/statement-principles-consumer-involvement-cochrane
 
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Just noting that in an email bulletin today ("The Year Ahead"), ME Action made the following statement about the Cochrane problems:
#MEAction is raising the alarm about Cochrane’s decision to suddenly shut down the 5-year independent analysis of its 2019 review of exercise therapy for ME/CFS. (The flawed review concludes that exercise has a positive effect on ME/CFS, despite relying on outdated diagnostic criteria that doesn’t include PEM.)
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At the end of last year, Cochrane suddenly updated the publication date from 2019 to 2024 even though there is no new evidence in the review, and the independent analysis had not concluded. Cochrane provides systematic reviews of healthcare interventions, and this decision could misinform healthcare providers and policymakers about treatments for ME/CFS. #MEAction is taking action to reverse this decision.
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Link: ME Action: The Year Ahead
 
Don't miss Hilda's blog post, link in my post above.

It sounds as though the IAG basically never got a look in for the approximately 5 years it existed.

The writing group finished its draft and gave it to the Editorial Group who did nothing apart from probably realising that the new review would be fundamentally different from the old one. And then Cochrane abandoned the new review process, without even letting the IAG know in advance.

And this was the 'model' of stakeholder engagement.

Cochrane actively worked on distancing itself from communities affected by its reviews, tightening the withdrawal criteria to the point where no review has been withdrawn since 2019, making a rule that responses to complaints and consumer feedback were not signed with the name of a person, ignoring formal complaints, and refusing the IAG's request to put a note on the Larun et al review to note that it should not be used for clinical decision-making.

And then Cochrane re-labelled the 2019 review as 2024.

I get the sense that Hilda won't be giving up on this issue easily.
 
RetractionWatch: Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

The review is of “extremely poor quality,” added Jo Edwards, an emeritus professor of Connective Tissue Medicine at University College London. Edwards said he has seen several past versions of the review. “It produces a message, which is contrary to what the NICE [National Institute for Health and Care Excellence] assessment has made and is simply not in the patients’ interest,” he said.
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Edwards said the review should be retracted. “It’s misleading and shouldn’t be there,” he said. “It’s now about 14 years out of date.”
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I have one reservation about Hilda's otherwise excellent blog, and the issue is also present in the #MEAction announcement that @Nightsong has just posted:
#MEAction is raising the alarm about Cochrane’s decision to suddenly shut down the 5-year independent analysis of its 2019 review of exercise therapy for ME/CFS. (The flawed review concludes that exercise has a positive effect on ME/CFS, despite relying on outdated diagnostic criteria that doesn’t include PEM.)
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The focus is on the outdated ME/CFS criteria and the existence of PEM. It's all very face saving to the Larun et al authors, and Cochrane also. The fact that the trial design in the included studies was so flawed that the studies do not constitute reliable evidence that the treatments help anyone is not acknowledged.

To a large extent, I'm pleased that the new review is not proceeding, because I saw nothing that made me believe that the writing group or the IAG, as a group, understood that fundamental issue. One or two members do but they would not have been able to sway the opinions of the others.

And so, if the review had proceeded, I think it is very likely that it would have focussed on people with ME/CFS being special and needing special treatment, but not on the fact that the trial design used in these studies is so flawed that not only the Larun et al review but a whole swathe of reviews supporting BPS interventions would be shown to be faulty.

It is quite possible that Cochrane is in the process of imploding. 'Have at it', I say. Where's the popcorn?
 
PETITION UPDATE

News from the IAG, and other good things

24 Jan 2025
Things have been happening!

And so we'll put our examination of Cochrane's second excuse for abandoning the replacement review process in the next update.

In this update, we cover a Retraction Watch article about the petition. Also, finally, news from the Independent Advisory Group that was set up to provide stakeholder input into the development of the replacement review and from its leader, Hilda Bastian. We'll keep things short because we think the best thing to do is to click on the links and read for yourself.



Retraction Watch's article

Retraction Watch acts as a watchdog of scientific integrity by monitoring the retraction processes of academic papers. It published an article today on this petition, Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

The article quotes Dr Hilda Bastian:
"Cochrane abruptly ceased communication and made little effort to explain why the pilot was abandoned, said Hilda Bastian, a meta-scientist, writer and cartoonist in Australia who was a founding member of the Cochrane Collaboration. “It’s hard to find a word to describe how badly they treated everybody involved in this,” she said. “It’s been pretty appalling behavior.” "

And it quotes Professor Jonathan Edwards, a stalwart supporter of good science and people with ME/CFS:
"The review is of “extremely poor quality,” added Jo Edwards, an emeritus professor of Connective Tissue Medicine at University College London. Edwards said he has seen several past versions of the review. “It produces a message, which is contrary to what the NICE [National Institute for Health and Care Excellence] assessment has made and is simply not in the patients’ interest,” he said."



The Independent Advisory Group's open letter to Cochrane

Also today, the Independent Advisory Group finally broke its long silence, criticising Cochrane in an open letter.

It said
"the IAG’s advice was rarely sought, and we were not given an opportunity to provide feedback about the cancellation of the update of the review. Through its Consumer Engagement and Involvement webpages, Cochrane professes its commitment to involving patients, carers, and other stakeholders in its research. Consumer involvement, it is stated, “is vital to Cochrane’s work” and is “a key part of the production of Cochrane evidence.” [7] Our experience, as members of a stakeholder IAG, stands in stark contrast to these statements, indicating a troubling disconnect between Cochrane’s stated commitment to consumer involvement and their actions towards consumers they chose to involve.

We express our dismay and concern at the rejection of our formal advice in 2024 to append an editorial note to the current version of the review stating that it is out of date and should not be used for clinical decision-making, as Cochrane has done for other reviews. Instead, Cochrane re-issued the review in December, dated it 2024 despite the last search for studies being over 10 years ago, ostensibly affirming its content as current, again without discussion with us, its appointed advisors. "



Hilda Bastian's blog
Hilda Bastian also published a long blog setting out her view of the long running saga of the Larun et al and its abandoned replacement:
When Journal, Scientific Society, and Community Values Clash

It is worth re-iterating that Hilda is a Cochrane insider, an Emeritus Member of Cochrane. She also notes that Cochrane has made much of its commitment to fostering “open and transparent communication and decision-making,” and “being open and responsive to criticism.” But, in practice, she acknowledges that it has fallen far short of those aims, ignoring valid complaints and building walls to separate itself from the people affected by their reviews. The Independent Advisory Group that Cochrane itself set up to be a shining example of stakeholder involvement hardly got a look in.

Hilda writes of Cochrane:

'It was a shock to see what they did in December'.
"After all those months and years of delays, there was something particularly cruel about dumping all this on a patient community in the week before Christmas – and announcing that the people who are supposed to be accountable will ignore correspondence directed to them. This, while multiple properly lodged criticisms, and complaints about the lack of response to them, have remained unanswered for years.

It’s even more unacceptable for this particular patient community. As Yong has pointed out, “ME/CFS patients face extreme dismissal and disbelief” about their suffering, from many directions, and it hurts. ”Societal dismissal of this kind,” he said, “leads to scientific neglect.” Cochrane is compounding this."

**********
Now that the IAG has finally gone public, we call on those ME/CFS organisations with representatives in the IAG who previously felt they had to keep quiet to join this campaign. Please stand with the 79 ME/CFS and Long Covid organisations from around the world already supporting the call for the Larun et al review to be withdrawn from use.

We have called for the Larun et al review to be withdrawn on the basis of harms, a basis allowed in their withdrawal policy. At the very least, Cochrane should make it clear that the review must not be used for clinical decision-making, to stop the review causing harm, and they should reverse their decision to republish the review as if it were a new 2024 version.

Please keep sharing the petition link and looking for opportunities to help Cochrane understand that they are a long way from living up to their professed values of collaboration, relevance (with the right evidence at the right time), integrity (independence and transparency) and quality (maintaining rigour and trust).
 
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A big thank you to those who worked so quickly to get this update out onto the petition page. The series of petition updates is an important record of this saga and hopefully they will be read by people looking into this issue.

And well done to Hilda Bastion and the IAG for speaking out so forcibly.
 
From Hilda's blog :

When I summarized Cochrane’s communication strategy in December above, I mentioned that the brief corporate email sent to the IAG had no personal signatory. That’s because this is Cochrane’s policy now, even though faceless corporate communication runs counter to the principles of responsiveness and accountability. The organization brought in consultants in 2023 to develop this new approach, and more. Minutes of a governing board meeting say that to “depersonalize the process” of complaints handling, contributes somehow to making it “more effective and responsive to stakeholders’ needs.” When I asked if they had any evidence to support their new direction, they had none to pass on. Back in the mists of time, I was the Coordinating Editor for Cochrane reviews on the effects of communication, so that interaction quite pained me.
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I'm glad I read that. It isn't just the reviews involving ME/CFS that are affected by this lack of a signatory - it is deliberate practice for all criticism. The reasons for anonymising Cochrane's response to criticism sound absurd to me and I thought Cochrane was just picking on people with ME/CFS - but at least that turns out not to be true.
 
There's a update email on the petition this morning. In addition to the IAG's letter they reference an article by Retraction Watch -



Retraction Watch's article

Retraction Watch acts as a watchdog of scientific integrity by monitoring the retraction processes of academic papers. It published an article today on this petition, Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

The article quotes Dr Hilda Bastian:
"Cochrane abruptly ceased communication and made little effort to explain why the pilot was abandoned, said Hilda Bastian, a meta-scientist, writer and cartoonist in Australia who was a founding member of the Cochrane Collaboration. “It’s hard to find a word to describe how badly they treated everybody involved in this,” she said. “It’s been pretty appalling behavior.” "

And it quotes Professor Jonathan Edwards, a stalwart supporter of good science and people with ME/CFS:
"The review is of “extremely poor quality,” added Jo Edwards, an emeritus professor of Connective Tissue Medicine at University College London. Edwards said he has seen several past versions of the review. “It produces a message, which is contrary to what the NICE [National Institute for Health and Care Excellence] assessment has made and is simply not in the patients’ interest,” he said."

The link doesn't work for me.

Anyway fantastic to see some activity from the IAG. (I've just woken up and haven't read the letter yet)
 
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Science For ME said:
PETITION UPDATE

News from the IAG, and other good things

24 Jan 2025
Things have been happening!

And so we'll put our examination of Cochrane's second excuse for abandoning the replacement review process in the next update.

In this update, we cover a Retraction Watch article about the petition. Also, finally, news from the Independent Advisory Group that was set up to provide stakeholder input into the development of the replacement review and from its leader, Hilda Bastian. We'll keep things short because we think the best thing to do is to click on the links and read for yourself.



Retraction Watch's article

Retraction Watch acts as a watchdog of scientific integrity by monitoring the retraction processes of academic papers. It published an article today on this petition, Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

The article quotes Dr Hilda Bastian:
"Cochrane abruptly ceased communication and made little effort to explain why the pilot was abandoned, said Hilda Bastian, a meta-scientist, writer and cartoonist in Australia who was a founding member of the Cochrane Collaboration. “It’s hard to find a word to describe how badly they treated everybody involved in this,” she said. “It’s been pretty appalling behavior.” "

And it quotes Professor Jonathan Edwards, a stalwart supporter of good science and people with ME/CFS:
"The review is of “extremely poor quality,” added Jo Edwards, an emeritus professor of Connective Tissue Medicine at University College London. Edwards said he has seen several past versions of the review. “It produces a message, which is contrary to what the NICE [National Institute for Health and Care Excellence] assessment has made and is simply not in the patients’ interest,” he said."



The Independent Advisory Group's open letter to Cochrane

Also today, the Independent Advisory Group finally broke its long silence, criticising Cochrane in an open letter.

It said
"the IAG’s advice was rarely sought, and we were not given an opportunity to provide feedback about the cancellation of the update of the review. Through its Consumer Engagement and Involvement webpages, Cochrane professes its commitment to involving patients, carers, and other stakeholders in its research. Consumer involvement, it is stated, “is vital to Cochrane’s work” and is “a key part of the production of Cochrane evidence.” [7] Our experience, as members of a stakeholder IAG, stands in stark contrast to these statements, indicating a troubling disconnect between Cochrane’s stated commitment to consumer involvement and their actions towards consumers they chose to involve.

We express our dismay and concern at the rejection of our formal advice in 2024 to append an editorial note to the current version of the review stating that it is out of date and should not be used for clinical decision-making, as Cochrane has done for other reviews. Instead, Cochrane re-issued the review in December, dated it 2024 despite the last search for studies being over 10 years ago, ostensibly affirming its content as current, again without discussion with us, its appointed advisors. "



Hilda Bastian's blog
Hilda Bastian also published a long blog setting out her view of the long running saga of the Larun et al and its abandoned replacement:
When Journal, Scientific Society, and Community Values Clash

It is worth re-iterating that Hilda is a Cochrane insider, an Emeritus Member of Cochrane. She also notes that Cochrane has made much of its commitment to fostering “open and transparent communication and decision-making,” and “being open and responsive to criticism.” But, in practice, she acknowledges that it has fallen far short of those aims, ignoring valid complaints and building walls to separate itself from the people affected by their reviews. The Independent Advisory Group that Cochrane itself set up to be a shining example of stakeholder involvement hardly got a look in.

Hilda writes of Cochrane:

'It was a shock to see what they did in December'.
"After all those months and years of delays, there was something particularly cruel about dumping all this on a patient community in the week before Christmas – and announcing that the people who are supposed to be accountable will ignore correspondence directed to them. This, while multiple properly lodged criticisms, and complaints about the lack of response to them, have remained unanswered for years.

It’s even more unacceptable for this particular patient community. As Yong has pointed out, “ME/CFS patients face extreme dismissal and disbelief” about their suffering, from many directions, and it hurts. ”Societal dismissal of this kind,” he said, “leads to scientific neglect.” Cochrane is compounding this."

**********
Now that the IAG has finally gone public, we call on those ME/CFS organisations with representatives in the IAG who previously felt they had to keep quiet to join this campaign. Please stand with the 79 ME/CFS and Long Covid organisations from around the world already supporting the call for the Larun et al review to be withdrawn from use.

We have called for the Larun et al review to be withdrawn on the basis of harms, a basis allowed in their withdrawal policy. At the very least, Cochrane should make it clear that the review must not be used for clinical decision-making, to stop the review causing harm, and they should reverse their decision to republish the review as if it were a new 2024 version.

Please keep sharing the petition link and looking for opportunities to help Cochrane understand that they are a long way from living up to their professed values of collaboration, relevance (with the right evidence at the right time), integrity (independence and transparency) and quality (maintaining rigour and trust).
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Link direct to the update, https://www.change.org/p/cochrane-w...24-exercise-therapy-for-cfs-review/u/33189070
 
Caroline Struthers said:
Ann Milne made another comment on the Exercise review in December and the authors (Larun) have responded....I think this is the first time Larun has responded since 2015 ( https://www.cochranelibrary.com/cds....pub9/detailed-comment/en?messageId=447334172)

I have screenshotted Milne's comment and the reply. It seems Larun is replying to a completely different comment as she has changed the heading to make it about GRADE (which it isn't) rather than lack of clarity in the text of the review https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/read-comments

View attachment 25070

View attachment 25069
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Is this question on harms what prompted L Larun out of the shadows after 10 years?
Maat said:
Ignoring the Alarms

Ignoring the alarms: How NHS eating disorder services are failing patients | Parliamentary and Health Service Ombudsman (PHSO) 2019

The Royal College of Psychiatry, eventually, responded with this which also included Pervasive Refusal Syndrome May 2022 (updated Oct 2023)

college-report-cr233-medical-emergencies-in-eating-disorders-(meed)-guidance.pdf

29 June 2023 NHS eating disorder services - House of Lords Library
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Maat said:
I also suspect that the question in the House of Lords above, together with the PHSO report published by the House of Commons on the same day

29 June 2023
'Broken Trust' Broken trust: making patient safety more than just a promise
is what lay at the heart of the 'anomalies' paper in July 2023 while Maeve Boothby O'Neill's Inquest was still awaited, because she wasn't a child. Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis | Journal of Neurology, Neurosurgery & Psychiatry
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Timing is crucial. Why respond now especially after the abrupt re-dating of the existing review in December 2024?

So, it's time to be reminded of an extract from the response from NICE by Barry et al submitted Oct 2023 and published February 2024 to the above referenced Anomalies opinion piece

GRADE methodology is not used to exclude or reject evidence, but to assess the quality and certainty of the evidence. All studies that met the inclusion criteria in the protocols were included in the evidence reviews, and these were synthesised and presented to the committee for discussion. The evidence review was quality assured externally, and the rating of the evidence as ‘low to very low quality’ is consistent with other reviews, including the Cochrane review on exercise therapy for ME/CFS. https://www.s4me.info/threads/nice-...-evidence-2024-barry-et-al.37429/#post-518067
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Maybe that's why she's talking about GRADE and not the question asked?

Re-dating the Cochrane review to 2024, when and how it did, looks like an attempt to usurp the relevance of the NICE Guideline.

Although, I could be completely wrong. Extraordinary behaviour.
 
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