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

Trish said:
I think the long term physical harm cannot be denied either. If GET were a drug treatment the yellow card system would have received thousands of reports of severe deterioration that started during or just after GET.

If it were a drug, would there not have been talk of withdrawal, or at least strong warnings on the side effects leaflets warning of possible short or long term deterioration.

I recall in your expert testimony to NICE that you warned that subjective reports of detrioration in surveys should be take at least as serously as subjective reports of improviement in trials.
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Besides, on the issue of 'proving' that GET causes physical harm, there is no evidence that would be accepted anyway. There is no design, ethical or otherwise, for a giant well-funded study that would shut all the detractors up and make them accept it. No such thing. PACE debunked the efficacy lie and it made no different, it's literally claimed that it proved the opposite. This is not a rational process with rational actors, it's all feels and vibes and myths and ideology.

We do have hundreds of thousands of direct complaints and loads of evidence of deterioration, and this is the only evidence possible in the universe we inhabit. It's how all such evidence is gathered for drugs and procedures, at least to begin with. And it's accepted, because there is no other way.

It's all politics. All of it.
 
Peter Trewhitt said:
However we have in addition to anecdote survey evidence, which though potentially at risk of selection bias is stronger than evidence of individual anecdote. Larun et al (all versions) fails to acknowledge this survey evidence, despite it demonstrating only small numbers report benefit with much larger numbers of respondents reporting harm. When Cochrane made the decision to abandon the new exercise review purportedly on the grounds of no new evidence the largest survey of GET outcomes commissioned by NICE had been available for several years. The survey evidence though at risk of over reporting harm, incontrovertibly indicates a percentage of patients do experience harm.
Further it has been argued that the studies used by Larun et al were deficient in their mechanisms for recording adverse events, made worse by such as the PACE study where participants in the treatment arm were instructed to disregard any deterioration, so being primed not to report harm.
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In addition to these anecdotes and the surveys, we also have more than 100 ME research exercise provocation studies that provide evidence, including objective evidence, of an abnormal response to exercise across multiple systems. Even in 2015, those studies were sufficient for the IOM to define the hallmark of ME to be this systemic intolerance to exertion. And more recent studies in ME and Long COVID have reported similar findings. Yes, the studies need replication and methods improvement. But IMO, it's hard to dispute the overall direction of these findings - this is not a problem of deconditioning, excessive concern with symptoms, avoidance of activity, etc.

This evidence, especially the objective evidence, directly contradicts the BPS claims about the nature of the disease and how it should be treated. It's telling that BPS advocates have never attempted to integrate any of this evidence into their explanation of the disease and its appropriate treatment.

These studies also provide concrete evidence that bolsters the patient anecdotes and surveys of claims of harm from exercise. There's a scientific explanation for why people who experience this abnormal response to exertion report experiencing harms.

I expect Cochrane knows all this.
 
Hutan said:
Perhaps the long term physical harm that GET causes is not yet proven. But the various sorts of long term emotional harm should be easy to understand. It's basic psychology and anyone with empathy should be able to grasp it. Once you accept that GET does not produce a clinically meaningful benefit, then it's obvious that telling patients and their families and their doctors that the ill person can get better if they really want to, if they just put the work in and comply with therapist's directions, must cause harm.
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Yes. I don’t think this argument is as well known or used as it should be: if one accepts that the therapies don’t work, the psychological harm is self-evident.

As I once wrote in a BMJ rapid response, it is concerning that it is predominantly people who work in psychological medicine who appear to be oblivious to and/or insouciant about this type of harm.

[Edit: this is the Rapid Response I was referring to: https://www.bmj.com/content/371/bmj.m4356/rr-0]
 
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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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That’s very encouraging. Who would these questions be adresses to? Cochrane? And would your MP be able to differentiate a factual reponse from the common lies Cochrane serve us?
 
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 can't think of any reply you would get other than that Cochrane is an independent charity and any complaints should be addressed to Cochrane, their funders or the Charity Commission. I can't think of anything an MP could do with a parliamentary question, but I'm no expert.
 
Sasha said:
Well done, Robert!

Submit questions in the House or write to people?
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To date we have only discussed submitting oral and written parliamentary questions but I think she would be amenable to asking questions of other organisations – particularly if they had any accountability to Parliament. For example, my previous MP wrote various letters to Sir John Savill at the MRC on my behalf.

Cochrane receives funding from the NIHR which is funded by the UK Department of Health and Social Care, so there ought to be some accountability to Parliament.

I’m thinking it might be worth asking my MP to submit written questions to the DHSC and possible write directly to the NIHR about the issues. Suggestions for questions or other ideas welcome.
 
Robert 1973 said:
I wondered that. Its webpage on funding seems to be out of date: https://www.cochrane.org/about-us/our-funders-and-partners

But if Cochrane received over £1 million from the NIHR in 2019, and possibly more since then, I wonder if it might still be worth raising with the DHSC, if only to get it on the parliamentary record.
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The major reorganisation Cochrane included in their many excuses for the delays in the process to produce the new review was caused by the UK NIHR ceasing funding Cochrane.
 
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