[whimsicalism]

The mind-body dualism is not real and mind & body symptoms can be co-productive.

That said, the evidence of 'actual physiological differences in people with ME/CFS' is not very strong at all (relative to the amount of scrutiny this problem has received) and research on other hypotheses has been halted numerous times due to death threats.

[incangold]

This is just hand waving. There is no evidence that this thinking helps with ME. The studies have been debunked and in the UK guidelines have been updated, and clinicians are slowly catching up. The research is used as a textbook example of bad science in some universities.

You can watch the primary researchers fail to defend their work here:

https://journals.sagepub.com/toc/hpq/22/9

Funding levels for biomedical research on ME/CFS compared to biopsychosocial has been a drop in the ocean. Funding overall is absurdly low relative to disease burden https://pubmed.ncbi.nlm.nih.gov/32568148/

Regardless, there are hundreds of studies showing biological abnormalities in ME/CFS patients- dysfunctional mitochondria, changes in white/grey matter volume, hypoperfusion in the brain, SPECT scan abnormalities, VO2 max going down after exercise, whatever’s going on with Ron Davis’s nano needle study. You could go on and on- just type ME/CFS in to google scholar and skip past anything written by a UK psychiatrist.

You might be confused regarding the lack of a biomarker that’s specific enough for diagnosis. This doesn’t mean that we don’t have pathological findings, just that none of them are found in _every_ patient and also not found in patients suffering from other illnesses. This may well be because ME/CFS isn’t even a single thing.

Long Covid researchers are steadily replicating the same findings we have seen in ME/CFS, but faster because they have more funding.

Death threats do not tell us anything about whether the science is true. The allegations are often used by researchers to distract from scientific discussion of their work. Still, more on the details of those allegations here:

https://me-pedia.org/wiki/Intimidation_and_bullying_of_PACE_...

[wtetzner]

Why were there death threats?

[whimsicalism]

Here is an article for context: https://www.theguardian.com/society/2011/aug/21/chronic-fati...

Anything with somatic involvement is heavily stigmatized in anglo culture, so people will respond with violence.

[incangold]

Alternatively, sick patients desperate to get better have been written off or abused by their doctors for decades and that makes people angry.

Here’s a story of a girl who was made permanently worse after her condition was treated as psychosomatic and she was encouraged to gradually increase her activity. On autopsy her spinal nerves were lit up with inflammation: https://www.bbc.co.uk/news/health-44969741

Here’s another of a Danish girl who was taken from her parents and returned as a husk of her former self after legal challenge: https://me-pedia.org/wiki/Karina_Hansen

There are thousands of stories of similar neglect.

I don’t know a single ME/CFS patients who would care if their condition was somatic if treating it as such was effective. People just want to get better.

Patients undergo treatment on the basis that it’s a somatic illness, it doesn’t work or makes them worse, and then they discover how few people there are looking for alternative approaches, and how flawed the studies supporting their treatment were.

I am curious what your background is. Are you an ME patient, or a doctor, or…?