Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

And even if they could somehow definitively prove it for themselves, there’s absolutely no basis for claiming it cures anyone other than themselves.

Even well-tested biomedical treatments can’t make that claim full stop—there’s always going to be the percentage of people who are non-responders, who get extremely bad side effects, etc. But you’d be rightly viewed as a jerk for going around to cancer patients saying that they simply haven’t chemotherapied hard enough.

 

One of my relatives had cancer and then transitioned to not having it.

Said nobody, ever.

 

I believe it was called The Ink Black Heart. In 2022 iirc.

 

wehave a thread on it somwhere

 

Three more responses published today, https://www.bmj.com/content/389/bmj.r977/rapid-responses

 

To the first question, of course. It should have been routinely done years ago. It's never done, because they have nothing but failure to show for it.

But as for the second question, not until chickens are the only flying birds left. In "Imagine a world"-based medicine, it's standard for the people who develop a treatment to test it, then grade their testing of it, then review their grading of their testing of it, then participate in the regulatory and institutional processes that analyze those. How else would they be able to boast of great success without ever having actually achieved anything?

Remember, kids, the first rule of pseudoscience is "NEVER MEASURE ANYTHING":

 

Excellent response from Dr Hausmann. How things are different when people find themselves on the wrong side of the cage.

It's unfortunate that some who find themselves on the wrong side of the cage completely change their tune once the door unlocks and they can freely step out.

 

That is very good. Nice to see GP spelling out that they have a platform most patients don't, and that they're using it to dominate the debate without even having anything useful to add.

 

https://bibliotheek.ehb.be:2370/content/389/bmj.r977/rr-23

Rapid Response:
ME/CFS care must be grounded in lived experience and biomedical research
Dear Editor

I read with attention the opinion piece by Miller and colleagues “Patients with severe ME/CFS need hope and expert multidisyciplinary care” published on May 14, 2025.

I write as a patient-researcher who has worked on and advocated extensively for chronic diseases such as Long Covid, and for the recognition of patient-led expertise. [e.g. 1] As such, I underline the importance of centering lived experiences in approaching ME/CFS and the extent of biological pathology patients suffer from. These aspects are not adequately addressed in Miller et al, who appear to favour a “biopsychosocial approach”, a “philosophical approach”, and an excessive focus on “mental illness”, where “expectations and conditioned responses” are presented as major drivers of symptoms.
In contrast, there is already significant, and growing, evidence of biological abnormalities discovered in people diagnosed with ME/CFS. Miller et al fall short of discussing such biomedical advances and the need for specialist treatments grounded in this research. Studies have shown immunological, cardiovascular, and neurological damage, or dysfunction, in ME/CFS, to name just a few body systems involved. [e.g. 2, 3, 4, 5] This degree of biological pathology cannot be addressed with approaches such as “psychoeducation about the stress response”, “common cognitive behavioural treatments”, “self-support” and “reframing beliefs about illness”, which seem paramount in Miller et al.

People living with ME/CFS have consistently described the harrowing suffering arising from their disease and the frightening realization no appropriate care is often available to them. [e.g. 6, 7] This is compounded by cases like the tragic death of Maeve Boothby O’Neill from severe ME, where approaches such as “exercise programmes" are reported to have made her worse, while she encountered “ignorance, apathy and stigma”. [7] As noted in many clinical guidelines and recommendations, the cardinal symptom of ME/CFS is PEM (post-exertional malaise), which Miller et al fail to address. PEM is a biological state, where people suffer a worsening of symptoms and clinical signs after even minimal exertion. [e.g. 6, 8, 9] PEM can be highly disabling, leaving patients in need of extensive support from healthcare professionals and carers. People with severe and very severe ME/CFS are especially vulnerable and might be unable to carry out everyday activities, such as walking or feeding themselves. Opinions around “illness belief", the emphasis on gradually “increasing activity”, and a focus on psychological interventions, all highlighted in Miller et al, risk disenfranchising patients from adequate clinical care.

Studies have extensively reported on the low quality of life experienced by ME/CFS patients. [e.g. 10] Further research into the biological underpinnings of ME/CFS is, therefore, highly recommended and should guide clinical practice. People living with ME/CFS deserve the utmost urgency for biomedical research and optimal care. This is where hope lies.

 

Has this one been shared yet:

https://www.bmj.com/content/389/bmj.r977/rr-19

Lots to like, but particularly:

"The use of biomedical terminology to repackage psychosocial models - referred to in rhetorical studies as “concept laundering” - is another red flag. Referring to “dysregulation” without specifying mechanistic detail allows psychosomatic framings to persist under the guise of scientific neutrality. This ambiguity not only muddles public understanding but also insulates authors from accountability for the models they promote."

 

Lots of good responses. I especially like this one.

 

The person/people behind Long Covid Advocacy write quite well on BPS nonsense. There's sometimes a little too much "academic-speak" for my liking, but overall pretty good: https://www.longcovidadvoc.com/my-blog

 

Oh I do like that!

 

I know this phrase refers to the website, which I agree with, but in the context of this rapid response I feel the tone is perfect, using precise academic language to point out the pseudoscience of the original opinion piece.

 

Also, the reference to Berlant's 'cruel optimism' is powerful, even if this may not be quite what Berlant was on about!

 

I have not read their book, so my understanding of the concept might be wrong. But wouldn’t imposing unrealistic hope on someone, be the same as imposing cruel optimism on them, i.e. forcing them to believe they can recover instead of letting them see they probably can’t, and adjust their life accordingly?

And if the people in charge of the systems that are supposed to help sick people, believe that the sick people do not need help (due to their unrealistic optimism on the sick people’s behalf), that will conceal the flaws of the systems and the help it provides.