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

Trish said:
For a frivolous moment, a different meaning of discipline came to mind, and I visualised a multidisciplinary team wielding canes, scourges and whips.
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You are missing the psychology here, @Trish. This was a pure Freudian meta-slip by Garner. It is exactly what he meant. The activists must be punished from all sides for disbelieving his own magic powers in self-healing.
 
Nightsong said:
Another excellent & well-argued rapid response (and, I think, the first cite for S4ME's PEM factsheet):

"Ignorance about post-exertional malaise and continued conflation of ME/CFS with chronic fatigue harms patients and stymies research progress" (Dom Salisbury)

https://www.bmj.com/content/389/bmj.r977/rapid-responses
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Thanks. I thought it a good opportunity to cite the factsheet, as well as link to the Dialogues films on PEM.
 
Yann04 said:
Looking further. The Swiss study that found suicidality in pwME to be mostly caused by psychosomatic interpretations of the illness. Is quite seriously cited by Miller et al to support this sentence

Urgh the audacity.
And clearly they must have seen the suicidality part since it’s in the abstract…
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I think their interpretation is even more disturbing. They noticed and understand that psychosomatic ideology is the main factor in despair and suicides for this illness, but they think that it's just a messaging (or comprehension on our part) problem, that it's because the patients don't accept/understand their meaning, won't commit to following its model, that leads to despair and suicide. This is why they have no problem using Maeve's name, their assertion is that had she followed their advice, she would be living free and healthy right now. Regardless of the fact that she did, their ideology has a permanent excuse for everything: she didn't try it just right, didn't find the Goldilocks zone.

To them the problem isn't psychosomatic ideology causing suicides, it's patients who accurately interpret psychosomatic models as a dead-end, where they understand it as the solution, which if we did we would simply resume our normal lives and no one would despair or kill themselves. So to them the solution to the problem is the problem, which conveniently happens to be their superior expertise.

It's all over the place in the literature, the belief that psychosomatic medicine hasn't actually been given the opportunity to prove itself. It's always presented as novel and never-before-tried, despite decades, thousands of studies and tens of millions subjected to it, to them it's No True Psychosomatic Medicine because they think that their model hasn't been correctly applied, just needs to be researched more and more and more. A model that would cease and desist all medical considerations, research and clinical options, leaving only the psychobehavioral, which they still think they can optimize by communicating it properly, or getting us to understand it properly, whatever works.

It's a very disturbing perspective, especially in that it's widely accepted in the medical profession, that psychosomatic (or psychobehavioral) medicine is the true future of medicine, one so powerful it would eliminate the need for most medical treatments and drugs, it just hasn't been given its proper chance. It's a completely nihilistic perspective, one that is mindlessly cruel and a textbook example of the banality of evil, but they believe in it, and will not let it go, they're already decades- and millions- deep into it so they don't have a choice. The boats have been burned, they will either prosper on this land, or die there, millions have already died for it so no one can turn back and face justice for it.
 
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rvallee said:
It's a very disturbing perspective, especially in that it's widely accepted in the medical profession, that psychosomatic (or psychobehavioral) medicine is the true future of medicine
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I noticed this when looking at fields like “Philosophy of Medicine”. I was expecting it to be all critical of both systems of power in medicine and psychiatry. But what I found was that the dominant narrative is that everything is too “medicalised” and we need a more “holistic” (read. psychobehavioural) approach to health.
 
Yann04 said:
But what I found was that the dominant narrative is that everything is too “medicalised” and we need a more “holistic” (read. psychobehavioural) approach to health.
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I don't think it's a coincidence that there are other lobbies that think there is too much government and there should be more freedom.

It's all part of the same ideology.
 
Yann04 said:
freedom from what?
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Meaningful treatment?

Just as small government means freedom from health & safety and equality legislation, minimum wages, food standards, environmental protections, etc.

I don't think this is psychiatry. It's the school of psychology that considers conditions like ME/CFS to be largely self-imposed; products of aberrant thinking. People shouldn't expect support to maintain their state of neediness and helplessness.
 
Kitty said:
Meaningful treatment?

Just as small government means freedom from health & safety and equality legislation, minimum wages, food standards, environmental protections, etc.

I don't think this is psychiatry. It's the school of psychology that considers conditions like ME/CFS to be largely self-imposed; products of aberrant thinking. People shouldn't expect support to maintain their state of neediness and helplessness.
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Ahh so the neoliberal “wellness culture” everything can be prevented by meditating and taking supplements philosophy
 
Yann04 said:
@Robert 1973

Two German ME/CFS activists said on bluesky to me they have submitted a rapid response they wrote that focuses on the Swiss study (suicidal thoughts one)
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Here it is:

Biopsychosocial approaches to ME/CFS provide neither a cure nor hope

Dear Editor,

Please find below our response to the opinion piece by Miller et al.[1]:

According to Miller et al., the belief of ME/CFS sufferers that they won’t recover can harm their mental wellbeing. In this context, the authors cite a study from Switzerland.[2] However, Miller et al. fail to mention that this study attributes the psychological burden of ME/CFS sufferers, among other things, to an aspect that fundamentally contradicts the argument of their opinion piece. As a key factor for the psychological burden, the study states the frequent classification of ME/CFS as psychosomatic—a classification that largely coincides with the biopsychosocial interpretation advocated by Miller et al.. The solution that Miller et al. propose—the interpretation of ME/CFS as psychosomatic or biopsychosocial—is, according to the findings of the Swiss study, a major cause of the problematic situation of ME/CFS sufferers. The Swiss study therefore doesn’t support the argument of Miller et al., but rather undermines it and even explicitly describes the said classification of ME/CFS as a “misattribution” and “mischaracterization”.[2]

Miller et al. further suppose that the lack of hope among ME/CFS sufferers is related to a withholding of curative biopsychosocial treatments in the health care system. The authors depict the current ME/CFS strategy of the UK as “outdated”, leading NICE to “disallow cognitive approaches”.[1] However, the aforementioned example of Switzerland suggests that hopelessness among ME/CFS sufferers is not the result of a shortage of such approaches. According to the study cited above, many ME/CFS sufferers in Switzerland are in fact hopeless.[2] At the same time, another study from Switzerland found that “[a] total of 90.5% of patients were told at least once before their final ME/CFS diagnosis that their symptoms were psychosomatic”.[3] Thus, ME/CFS sufferers in Switzerland are not hopeless because of a lack of psychosomatic medicine, but despite and, as outlined in the previous paragraph, in part even because of the fact that the psychosomatic interpretation of ME/CFS symptoms is very widespread there. In conclusion, the example of Switzerland offers no indication that psychosomatic approaches are suitable for giving ME/CFS sufferers hope. Indeed, ME/CFS sufferers have good reasons to be skeptical regarding these approaches since their experiences with curative (as distinct from non-curative) cognitive behavioral therapy are clearly negative.[4]

Rather than placing unfounded hope in biopsychosocial interpretations, it is imperative to take the lived experiences of individuals with ME/CFS seriously and to recognize the genuine potential revealed by emerging biomedical evidence. The assertion by Miller et al. that “[n]either somatic pathology nor specific physiological disturbance has been reliably and consistently identified”[1] is not congruent with the current body of research. This perspective overlooks a substantial and growing number of studies that document recurring biological abnormalities in ME/CFS, including metabolic, immunological, neurological, circulatory, and vascular dysfunctions.[5, 6] While ME/CFS research is still in its early stages, the direction is clear: evidence increasingly demonstrates the presence of physical impairments. It is within this biomedical framework—not through outdated psychosomatic paradigms—that meaningful medical advances can be expected. Recognizing this potential as well as recognizing ME/CFS as a severe, multisystemic disease with no established cure is essential for improving the clinical, social, and personal circumstances of those affected. It is also a prerequisite for offering patients realistic hope, rather than a regression into a discredited “biopsychosocial”[/SIZE]
model.
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https://www.bmj.com/content/389/bmj.r977/rr-8
 
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