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

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.

 

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.

 

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]

 

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?

 

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?

 

Well done, Robert!

Submit questions in the House or write to people?

 

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.

 

That sounds great, @Robert 1973. Getting an oral question into Parliament would be nicely embarrassing, and having the MP write letters to Cochrane and to the bodies that fund it that pre-empt the stupid replies that they'd normally give would be great.

 

That's a pity.

If we were to ask ourselves, 'Who is Cochrane frightened of?', who would that be?

 

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.

 

Who was Don Quixote frightened of?

 

You’re going to have to help me out here!

 

Hilda said that in this Bluesky post, https://bsky.app/profile/hildabast.bsky.social/post/3lgjgez6b522d

 

Windmills?