Opinion Post-COVID and ME/CFS – DoWe Need New Disease Theories? 2023 Schauenburg

Andy

Andy

Retired committee member
ABSTRACT
Background and Research Question: The SARS-CoV-2 pandemic often resulted in prolonged illness courses. A particular challenge today lies in the clinical presentation resembling that of Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS).

Method: We review selected literature concerning the psychosocial factors influencing chronic courses characterized primarily by fatigue. Additionally, we explore the neurobiologically grounded theory of "Predictive Coding" as a possible explanatory framework for complex somato- psychic interactions.

Results: Physical findings only partially account for the dynamics and progression of chronic fatigue syndromes, necessitating more intricate disease models that incorporate aspects of bodily perception.

Conclusions: Incorporating these newer theories of perception and behavior could provide a more helpful perspective on phenomena such as fatigue, leading to improved therapeutic support measures, all without contributing to premature attributions of "psychological" causes and the associated risk of stigmatization.

Open access, https://www.vr-elibrary.de/doi/10.13109/zptm.2023.69.oa7
 
Andy said:
Method: We review selected literature concerning the psychosocial factors influencing chronic courses characterized primarily by fatigue.
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Dumpster diving.

Andy said:
Results: Physical findings only partially account for the dynamics and progression of chronic fatigue syndromes, necessitating more intricate disease models that incorporate aspects of bodily perception.
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Garbage.

So, no surprises.
 
The "predictive coding" idea does not seem to align with how my fatigue behaves.

One of the most bizarre aspects of my illness is the disconnect between how I'm feeling while doing something and how badly it will affect me later.
Emotionally I feel good and capable of doing something, but then I fatigue too rapidly, or maybe not at all and am hit by PEM the next day. These ideas about ME/CFS being caused by some sort of problem of perception have no relationship to reality, unless we propose that the body is blind to the underlying problem and tends to overexert for this reason. But that's approximately the opposite of what is usually proposed.

Of course one could claim that it's all subsconscious, but then it's just another unfalsifiable theory that cannot be used to build reliable knowledge.
 
Also it's more of the same patient blaming (shifting responsibility to patients). Because obviously the predictive coding thing will be evoked to justify CBT or some think yourself well approach, and when that doesn't work, the patient will be blamed. And patients will also be blamed for not thinking right to begin with. All with no evidence. And it will be popular among medics because it will justify this shifting of responsibility without any required evidence.
 
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"Post-COVID and ME/CFS – DoWe Need New Disease Theories? 2023 Schauenburg"
Thanks to those like Jonathan who, as part of a MRC group asked to look at options, proposed a GWAS study in ME [DecodeME]. Also, Vicky Wittemore in NIH - ME/CFS Roadmap - which could e.g. include a further GWAS study. Those are the sort of initiative we need.

Didn't PACE test the theory that "perception and behavior", were relevant i.e. by using a psychological intervention - didn't work/therefore, aren't relevant? -
"Conclusions: Incorporating these newer theories of perception and behavior could provide a more helpful perspective on phenomena such as fatigue, leading to improved therapeutic support measures, all without contributing to premature attributions of "psychological" causes and the associated risk of stigmatization."
 
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