Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2022, Marks

[Tom Kindlon]

Free full text:
https://www.opastpublishers.com/ope...encephalomyelitischronic-fatigue-syndrome.pdf


ISSN: 2640-4133
DOI: 10.33140/ABBSR.06.01.01

Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

David F Marks

David F Marks PhD
Independent Researcher
Arles, Bouches-duRhône, Provence-Alpes-Côte d'Azur, 13200, France.

Citation: Marks, D. F. (2022). Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Adv Bioeng Biomed Sci Res, 6(1), 01-04.

Abstract

Despite evidence of physiological and cellular abnormalities in myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS), the dominant therapeutic approach has been cognitive behaviour therapy (CBT) and graded exercise therapy (GET).

Patients report distress and dissatisfaction following healthcare encounters based on GET and CBT.

A significant body of research suggests that CBT and GET are harmful for many patients with ME/CFS.

These findings raise ethical concerns and suggest that more collaborative working between scientists, therapists and patients would be helpful in making scientific progress in this difficult field.

Keywords: Biopsychosocial Model, Chronic Fatigue Syndrome, Cognitive Behaviour Therapy, CBT, Ethics, Graded Exercise Therapy, GET, Myalgic Encephalomyelitis, Treatment Harms, PASC

 

[Trish]

Patients report distress and dissatisfaction following healthcare encounters based on GET and CBT.

Unfortunate wording, I think. It's not distress and dissatisfaction, or at least not the primary effect, which is getting much sicker and losing significant ability to function for long periods of time. Distress and dissatisfaction are likely to follow this, but are not the key point.

It's useful to see the various research on harms gathered together in one place, though there are a few fairly minor errors, like mixing up PASC and Covid-19, my comment above about wording and a couple of others I've forgotten already.
Some of the population data looks exaggeratedly high.

 

[Hutan]

David Marks continues to put an enormous effort into exposing BPS harm. I agree that sometimes the articles don't quite get everything right though. And I'm not sure about this journal - it seems to be a pay to publish journal, taking all sorts of papers.

https://www.opastpublishers.com/jou...nd-biomedical-science-research/aims-and-scope

Advances in Bioengineering and Biomedical Science Research (ISSN: 2640-4133) is a peer reviewed open access journal with good impact factor 1.029 focussing on significance of human well-being and a few crisis medicinal and clinical issues related to it, prime consideration towards biomedical research is of magnificent significance last 5yrs.The quality of the Editorial Board follows the Peer review process. The time to publish the articles from date of submisison is maximum 30-35 days.

The information about the journal's scope is not confidence-inspiring.

 

[JemPD]

prime consideration towards biomedical research is of magnificent significance last 5yrs.

oh dear, thats a bit cringeworthy 'magnificent significance'.

 

[SNT Gatchaman]

it seems to be a pay to publish journal, taking all sorts of papers [...] The information about the journal's scope is not confidence-inspiring.

It looks frankly terrible. USD 2585 to publish.

Eg Resonance in Biological Systems- Interdisciplinary View (Submitted: 12 Apr 2022; Accepted: 18 Apr 2022; Published: 26 Apr 2022)

Spoiler: Abstract

Resonance is a fundamental phenomenon of the energetic processes between energy and matter. It thus combines organic matter and its function into a viable dynamic that means life. This applies to all forms of life: human, animal and plant organisms. The various detections of resonance in physical and quantum mechanical basic research make the difficulty of understanding clear. Nevertheless, an understanding of the interdisciplinary use must be developed. The pharmacological and medical-technical development of the present makes this necessary.

7 references including Heisenberg (1926) and Pauling (1960) but oddly not Lucas (1977).

 

[Hutan]

It's certainly commitment to the cause to be paying that publishing fee.

These findings raise ethical concerns and suggest that more collaborative working between scientists, therapists and patients would be helpful in making scientific progress in this difficult field.

For sure it's a difficult field. I'm wondering if David Marks would have an easier time of it if he himself collaborated more. I see he got some feedback on an earlier draft of this paper, but perhaps he could find one or two people to help polish his final papers; perhaps someone could help with access to more mainstream journals.

I don't have insights that I'm sure some others here do. Perhaps there was just a need to get something on harms published quickly, so that it could be referenced in a submission.

 

[Tom Kindlon]

I can't remember but I think I commented on it quickly when it was a blog post rather than a formal paper/submission.

 

[hibiscuswahine]

I am grateful he has taken the time compiling this and getting it published. I need all the papers I can to advance advocacy, especially around education of pwME/LC who may not be aware of the history and controversies.

 

[Ravn]

I am grateful he has taken the time compiling this and getting it published. I need all the papers I can to advance advocacy, especially around education of pwME/LC who may not be aware of the history and controversies.

Yes, as a compilation this and his other recent paper are useful.

But I fear he makes it all too easy for his work to be dismissed as 'just another activist at play' due to his less than neutral language and choice of journal.

It would definitely have been better to adopt the dull but widely accepted writing style of scientific papers - the facts speak for themselves anyway, no need to use 'activist language' to point out the flaws. The following, for example, can easily be portrayed as emotional activist with an agenda speaking (don't get me wrong, I fully agree with the sentiment, and the language would be fine in a personal blog or opinion article, I just don't think it's helpful in a contribution to the scientific literature)

6) The attempts by some practitioners to relabel GET in order to continue its use post-NICE-2020 is plainly unethical and must be vigorously resisted.

It may also have been better, and presumably cheaper, to publish as a preprint if no better journals were prepared to accept his work (more neutral language may have helped to get the work accepted). Not ideal but these days preprint seems to be more acceptable than predatory.