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

Robert 1973 said:
My MP has indicated a willingness and enthusiasm to submit questions about ME/CFS on my behalf. Any suggestions for anything she could usefully ask of anyone pertaining to the Cochrane review of exercise therapy?
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I think this would be worth doing. A parliamentary question gets it on the official record, and politicians and the public would see that Cochrane hasn't acted professionally, fairly or within its remit, without necessarily having to have knowledge of the specifics. Might also be worth asking your MP to contact the Chair of the Health and Social Care Select Committee. That's Layla Moran, who seems pretty decent.

Government funding or not wouldn't affect an issue being within the remit of a Select Comittee.
 
But aren't Cochrane still collaborating with NICE?
From 2021
Interview: Cochrane and NICE collaborate to improve health guidelines | Cochrane

ironically isn't Gill Leng now a Cochrane trustee?
Cochrane Governing Board announces new trustees - Embedding evidence and governance expertise into Cochrane’s Governing Board | Cochrane

Does this collaboration only work one way?
IE shouldn't the NICE review evidence now supercede the Cochrane 2019 review?

If NICE are using Cochrane reviews then surely Cochrane have a duty to make sure they are up to date.

@Robert 1973 maybe a well worded question on this point (if it's still valid) might be useful(?)
 
I’m not sure what could be achieved through a PQ.

are there equivalent of APPGs in Australia, Norway? Maybe if so they could be asked to join up and write to Cochrane in support of the complaints

although I think the UK APPG have said following up on their predecessors review by reporting on Severe/very severe is their priority and that’s very important so maybe they shouldn’t be distracted from it
 
Sorry- I've missed some of the thread but do we have a date for the next APPG? i wrote to my MP before the last one and was told by his team he waS interested but I couldn't find his name on the list of attendees.
 
My valentine's gift from Cochrane:

Science For ME said:
Received by email from Cochrane today, 14th February 2025

New reply for your query (ticket #COMP00192844)

Dear Trish Davis,

This response relates to your complaint received on 26thJanuary 2025 relating to the published Cochrane review ‘Exercise therapy for chronic fatigue syndrome’ (https://doi.org/10.1002/14651858.CD003200.pub8).

We acknowledge that our previous approach to managing complaints in Cochrane led to delays and, in the case of your complaints, frustration on your part. We apologise for this and recognise that our previous process could be difficult to navigate, which is why we overhauled our complaints process last year.

In 2024 Cochrane undertook an assessment of all the previous requests to withdraw the review published in 2019, including those submitted by S4ME. This was done to consider whether any request met the threshold for Cochrane’s policy for withdrawal. Cochrane’s assessments took account of the current guidance on harms from the Cochrane Handbook for Systematic Reviews of Interventions, Cochrane’s policy on withdrawal from the Cochrane Database of Systematic Reviews, and external quantitative and qualitative evidence syntheses on the topic. This included those used in the UK National Institute for Health and Care Excellence (NICE)guidelines, the German Institute for Quality and Efficiency in Health Care (IQWiG) evidence review, and an updated systematic review prepared by the Center for Disease Control (CDC) in the USA.

The outcome of this assessment was that no grounds for withdrawal could be established by any of the requests for withdrawal. This process took several months to conclude, and we apologise for the delay in updating you on the status of your complaint.

Yours sincerely

Cochrane Complaints
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Peter Trewhitt said:
Does this response actually address our specific complaints?
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Sure, as in 'We've looked at all your specific complaints, and we don't find anything to be worried about. End of story. Move along please.'

Because of the way Cochrane is set up (i.e. a law unto itself), I don't know that they have to provide any further detail.? I presume this is part of their new approach to complaint management.

Of course, we can still ask for detail.
 
We apologise for this and recognise that our previous process could be difficult to navigate, which is why we overhauled our complaints process last year.
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It's so incredibly patronising. The inference is that the problem is that the complainants have somehow failed to understand the intricacies of Cochrane's complaints process. When the problems have had nothing to do with the complainants understanding of Cochrane's complaints process (unless expecting fair, diligent and timely consideration is unreasonable). The problems lie with Cochrane.
 
I guess there’s always the appeal process?

Escalation to appeals: In cases where those who complained were dissatisfied with the response, these will be handled by an appeals board consisting of key Cochrane leadership figures, including the Editor in Chief, Chief Executive Officer, and up-to two members of the Governing Board. This collective approach will provide a supportive environment for decision-making and ensure a final decision can be made
 
Kitty said:
There is, but it's a lot of effort when they've already made their position—and their likely refusal to deviate from it no matter what—quite clear. :mad:
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The benefit would be more publicity and conflict - which might make them want to concede something. It has become pretty clear that they put their own comfort over their integrity. So I say: let’s keep the flame burning if someone are able and willing to do the work.
 
Utsikt said:
The benefit would be more publicity and conflict - which might make them want to concede something. It has become pretty clear that they put their own comfort over their integrity. So I say: let’s keep the flame burning if someone are able and willing to do the work.
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I agree we should progress the complaint as we need to move beyond just Cochrane and raise the issues with Cope and the Charities Commission.
 
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