Letter: The overview on current evidence for the treatment of ME/CFS is based on the principles of scientific assessment 2023 Ludwig et al

Reply

To the letter to the editor of Jason LA et al (2023) The overview of the current evidence ignores the current evidence. https://doi.org/10.1007/s00115-023-01515-2.

Original contribution
Ludwig B et al (2022) Myalgic encephalomyelitis/chronic fatigue syndrome: an overview of the current evidence. Neurologist. https://doi.org/10.1007/s00115-022-01431-x.

We thank you for the comment by Jason et al. and for the opportunity to respond to it.
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It's long, so I'll post some of the main sections (auto-translated).
 
In research on ME/CFS, there are numerous hypotheses about the cause of the disease, but neither a uniform theory nor a biomarker that allows an unambiguous assignment. Hypothesis-driven research makes sense, but a classification of the disease with regard to its cause is not possible at the present time. Neurology has long been a specialist (psychiatry/neurology), and from the point of view of neurology, it is not an absurd thought that a disease must not be neurological, but must also have a psychosomatic or psychiatric cause. Our review makes it clear that classification is not possible at this time, but no certain causes can be excluded either. We also mention that there are associations (and so far no causality) with mental illness.
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Referring to the reference to "severe acute respiratory syndrome coronavirus type 2" (SARS-CoV-2,2) we agree and are convinced that immunological and also autoimmune processes can occur. We also believe that there are overlaps with ME/CFS, although we would like to emphasize that post- (or long-)COVID is not per se equated with ME/CFS (we refer to the currently valid ME/CFS diagnostic criteria and to the fact that postviral conditions are not part of the diagnostic criteria). Nevertheless, the pathogenesis of the complaints in post-COVID is unclear or inconsistent, similar to ME/CFS. The hypothesis that in the context of the pathogenesis of long-COVID/post-COVID, the subjective processing of perceived body sensations as well as psychological stress play a major role among many other factors has been scientifically repeatedly discussed. The functionality of several immunological antibodies in the context of postviral conditions has also not been definitively clarified. For example, a recent study showed that patients after SARS-CoV-2 with corresponding antibodies did not benefit from immunoadsorption.
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From our point of view, there is no incompatibility between "psychological" and "immunological" causes of these complaints, in addition, the currently growing research in the field of psychoneuroimmunology opens up opportunities for new explanatory approaches. It would also be important to investigate the findings of psychoneuroimmunology and "sickness behavior" with regard to ME/CFS in more detail.
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The strong defense against psychiatric and psychosomatic diseases is a well-known phenomenon and does not only concern the (media) confrontation with ME/CFS. At its beginning is often the misjudgment that psychosomatic diseases (according to DSM-5 now somatic stress disorder) are not "real", but "only imaginary" diseases and have no somatic basis. The destigmatization of psychiatric and psychosomatic diseases in public discourse can only be the goal of both those affected and practitioners.
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A clear definition would be important to differentiate syndromes such as postural tachycardia syndrome (POTS) or somatic stress disorder (DSM-5) in terms of the specific treatment recommendations. The guidelines for the treatment of POTS clearly recommend movement training/aerorobe reconditioning and there are numerous controlled studies that prove the effectiveness.
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The controversially discussed NICE guidelines of 2021, whose consensus finding was published with a significant delay after withdrawals of four committee members, are an expression of a current mood and are in clear contradiction to the last published guidelines. The aim of the work was to show that there are no clearly effective therapy options for ME/CFS. The most convincing data are available on cognitive behavioral therapy/graded exercise therapy (CBT/GET) (compared to the failed drug therapies), even if numerous qualitative shortcomings in CBT/GET studies have been reported by critics (including e.g. B. not changeable: blinding of the subjects).
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Concluding —

A science that does not allow contrary opinions abolishes knowledge.
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A science that does not allow contrary opinions abolishes knowledge.
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So we should allow flat earthers and climate change deniers and anti vaxxers equal say. Therein lies madness.

Science is not about opinions, it's about testing hypotheses and not sticking to opinions that have been falsified.
 
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Blog from Brian Hughes.

“A science that does not allow opposing opinions abolishes knowledge.” Er, kind of

"Colleagues and I have responded to a paper in Der Nervenarzt, the leading German neurology journal, pointing out various reasons why its “overview” of evidence-based approaches to ME/CFS treatment lacked, well, evidence.
...
In summary, our critique is as follows:

  1. While it is true that exact causes are unknown for sure, the authors of the paper that was published in Der Nervenarzt omitted to describe how several biological pathways have been strongly implicated in the pathogenesis of ME/CFS.
  2. The authors omitted to mention PEM (post-exertional malaise) and its implications for adverse outcomes following exercise therapies.
  3. The authors tenuously claimed that ME/CFS prognosis is “good” by citing a highly questionable (and cherry-picked) study, while ignoring the preponderance of research on this topic which shows that prognosis is, in fact, very poor.
  4. The authors attempted to criticise the new (2021) NICE guideline for ME/CFS by citing studies that NICE themselves already identified as being of such poor quality as to be unreliable.
  5. The authors argued that comorbidity implies causality, a clear (and rather silly) example of the correlation fallacy.
  6. The authors incorrectly stated that there are no objective markers of outcomes in ME/CFS.
  7. The authors ignored the scale of incapacitation in ME/CFS, which has been recorded at around 25%."
https://thesciencebit.net/2023/07/0...sing-opinions-abolishes-knowledge-er-kind-of/
 
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