Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care, 2025, Cupit

[Nightsong]

Surprisingly, MEA have commented on this:

This paper, from a group of health researchers at various universities, relates to fibromyalgia. However, it includes some critical comments about the way in which the MEA highlights very poor recovery rates as an important reason for raising money to carry out biomedical research into finding the cause/s of ME/CFS along with safe and effective forms of treatment that are targeted at the underlying disease process. We make no apologies for doing so and we do not agree that proving accurate information about poor recovery rates for ME/CFS inhibits patient recovery.

The paper states that the money we raise for research is ‘almost exclusively' spent on pharmaceutical research. This is not correct. The vast majority of our research funding is spent on research relating to diagnostic biomarkers, causative factors – including post mortem research – and all the basic running costs of the ME Biobank. We do occasionally fund clinical trials into drug treatment, including the current LDN trial. But this only represents a very small proportion of our research expenditure over the years.

https://meassociation.org.uk/2025/0...ery-programmes-to-the-regulatory-authorities/

 

[Peter T]

View attachment 27078
Apparently, everything can pass as evidence for conditions we don’t understand.

The point about punitive systems is interesting - it deviates from the usual secondary gains rhetoric.
View attachment 27079
But here we can see why they didn’t want to go for sticks, they believe it works better to gaslight them with «non-pressurising support» to induce compliance.

Well this about says it all, drastically reduce the criteria for what constitutes meaningful evidence so we can do what we want and then we will claim to save you money, though no one will evaluate the costs arising from that treatment no working or even causing further harm.

 

[Peter T]

View attachment 27078
Apparently, everything can pass as evidence for conditions we don’t understand.

The point about punitive systems is interesting - it deviates from the usual secondary gains rhetoric.
View attachment 27079
But here we can see why they didn’t want to go for sticks, they believe it works better to gaslight them with «non-pressurising support» to induce compliance.

It is possible to argue for other sources of evidence, but only if you list all the sources of bias and ambiguity in the evidence you have and then seek alternative evidence sources with different biases in the hope of developing convergent evidence that takes you nearer to the correct conclusion. This can only begin to happen if the researchers are willing to be honest about their prejudices and the limitations of their methodologies.

However current bio psychosocial (or more properly psychogenic) research relies on a single inconclusive experimental design repeated endlessly, assertion from personal authority and increasingly carefully selected anecdote (ignoring all contrary anecdote and survey information). This is as about as it is possible to get from convergent evidences utilising a variety of diverse sources. This is the strategy of alternative practitioners and snake oil salesmen.

 

[rvallee]

Especially since in the context of medicine, other sources of evidence aren't worse forms of evidence, they are much higher grades. Clinical trials, even well-conducted ones, are some of the lowest form of evidence used by any group of professionals. They are awful in almost every way, the very last resort when reliable sources of evidence aren't possible.

In the context of medicine, this means biological evidence, obtained from laboratories conducting very detailed biomedical studies, or bioinformatics or the product of advanced technology. Those other forms of evidence have to be better than so-called evidence-based medicine, by definition, as otherwise they are simply ridiculous. In most other professions, they don't even look at evidence of this type, argue for anything lower and you will simply be dismissed as a crank.

But of course this is exactly what's been argued for in recent years: worse forms of evidence. Hypocritical forms, it should be said. Anecdotes, theirs, and the small number they want to emphasize, not the many times larger ones that contradict everything they claim. Having argued for clinical trials for years while they were slowly debunked, now it's the opposite. Same as with the NICE guidelines, prior to 2021 they were absolute, can't do anything, the guidelines don't allow it, and now they're just suggestions. What a scam.

Because when you get to those lower levels of evidence, you are actually at a lower level than even alternative medicine, which can seem to be reliably effective when using the methodologies used by psychosomatic ideologues. Which is exactly why they will inevitably smother the whole field, and the only reason it hasn't happened yet is because the only way it really works is by having cultural support for a particular treatment model, even when everything else is the exact same.

 

[Sean]

Well this about says it all, drastically reduce the criteria for what constitutes meaningful evidence so we can do what we want and then we will claim to save you money, though no one will evaluate the costs arising from that treatment no working or even causing further harm.

However current bio psychosocial (or more properly psychogenic) research relies on a single inconclusive experimental design repeated endlessly, assertion from personal authority and increasingly carefully selected anecdote (ignoring all contrary anecdote and survey information). This is as about as it is possible to get from convergent evidences utilising a variety of diverse sources. This is the strategy of alternative practitioners and snake oil salesmen.

The story on this is straight forward enough: They have been unable to deliver solid evidence of their basic claim by the standards the rest of science is supposed to meet, indeed the standards that they themselves instituted half a century back. So instead of admitting they have nothing, that their hypothesis is false, they just lower their standards until they can claim a 'success'. One of the oldest tricks in the book. Just keep moving the goalposts.

What really angers, stuns, and scares me is just how easily they have been able to get away with it, so brazenly, for so long, and continue to do so. As I keep saying, they could not have done this without the sustained robust support and protection from both the rest of the medical professional, and the broader political and financial and media classes. The inevitable end result being widespread technical and ethical corruption, a ferocious resistance to accountability and reform, an accelerating descent into toxic woo, and increasing numbers of patients being both abandoned, and blamed and punished for the profession's gross failure.

 

[Cinders66]

Caroline cupit et al & this PACFIND was funded from 2019 by versus arthritis (who’d joined the MECFS CMRC)

From 2021, the research director of VA was Dr Neha Issar-Brown -

Dr Neha Issar-Brown

Currently Director of Research and Health Intelligence at Versus Arthritis – UK’s biggest Musculoskeletal research charity.

www.midandsouthessex.ics.nhs.uk

Versus Arthritis appoints next director of research - Research Professional News

https://www.researchprofessionalnews.com/rr-news-uk-charities-and-societies-2021-1-versus-arthritis-appoints-next-director-of-research/

Pre 2020, Dr Neha Issar-Brown was at the MRC and had been their rep with the CMRC. At the 2016 CMRC conference, she hosted an hour long session on writing better research proposals and asserts the ME community has to build itself up and find people to collaborate with “before questioning funders regarding lack of investment"