The Rise and Fall of the Psychosomatic Approach to MUS, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, 2022, David Marks

[Samuel]

The Rise and Fall of the Psychosomatic Approach to Medically
Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue
Syndrome

Free fulltext (preprint)
https://psyarxiv.com/jpzaw/

Citation: David F Marks. (2022). The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Arch Epidemiol Pub Health Res, 1(2), 97-143.

Abstract

The psychosomatic approach to medically unexplained symptoms, myalgic encephalomyelitis and chronic fatigue syndrome (MUS/ME/CFS) is critically reviewed using scientific criteria.

Based on the 'Biopsychosocial Model', the psychosomatic theory proposes that patients' dysfunctional beliefs, deconditioning and attentional biases cause or make illness worse, disrupt therapies, and lead to preventable deaths.

The evidence reviewed suggests that none of these psychosomatic hypotheses is empirically supported.

The lack of robust supportive evidence together with the use of fallacious causal assumptions, inappropriate and harmful therapies, broken scientific principles, repeated methodological flaws and an unwillingness to share data all give the appearance of cargo cult science.

The psychosomatic approach needs to be replaced by a scientific, biologically grounded approach to MUS/ME/CFS that can be expected to provide patients with appropriate care and treatments.

Patients with MUS/ME/CFS and their families have not been treated with the dignity, respect and care that is their human right.

Patients with MUS/ME/CFS and their families could consider a class action legal case against the injuring parties.


from tom kindlon

Edit:
The final, published version is here:
https://www.opastpublishers.com/pee...lgic-encephalomyelitis-and-chronic--4899.html

 

[Hutan]

MECFS patient advocacy organisations such as the ME Association (https://meassociation.org.uk/), #MillionsMissing (https://millionsmissing.meaction.net/The_MEAction_Network) and the forums Phoenix Rising: https://phoenixrising.me/; https://www.meresearch.org.uk/ and ME-Pedia: https://me-pedia.org/wiki/ME/CFS provide support networks, open sharing of ideas and information.

That's unfortunate.

The Open Medicine Foundation8
https://www.omf.ngo/) is the focus of new research initiatives organised and supported by patients, relatives, citizen scientists and interested professionals.


The OMF is chaired by Ronald W. Davis, Professor of Biochemistry & Genetics, and Director of the Stanford
Genome Technology Center at Stanford University, USA.

That's not right.
I'm grateful to David Marks for the work he has done to bring BPS proponents to account, but I think this paper would have benefitted from some feedback from a range of people.

Estimates of prevalence also vary but one estimate suggests that one in five to one in four of all primary care consultations involve MUS (de Waal, Arnold, Eekhof & van Hemert, 2004).

 

[Tom Kindlon]

The Rise and Fall of the Psychosomatic Approach to Medically
Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue
Syndrome

Free fulltext (preprint)
https://psyarxiv.com/jpzaw/

Citation: David F Marks. (2022). The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Arch Epidemiol Pub Health Res, 1(2), 97-143.

The final, published version is here:
https://www.opastpublishers.com/pee...lgic-encephalomyelitis-and-chronic--4899.html

 

[Three Chord Monty]

I'm wondering why this is in a journal on Beall's list for having been flagged as predatory. I mean, I'm not sure that's the end-all or be-all (no pun intended) but on first glance this looks like something that could be significant & that's not usually a plus for a publication's credibility. Then again, lately we've seen quite a few papers that look like they might contain important contributions to the scientific literature in similarly scorned MDPI journals, so who knows.

 

[Trish]

I have read most of it and would say it's a useful contribution to the historical record of what's gone wrong with ME/CFS research, specifically the adoption of the 'BPS model'.

 

[Sean]

Good paper to have in the drawer as a summary of what has gone wrong. Covers most of the significant issues.

Important that this stuff is in the formal literature, where nobody can use the excuse that it hasn't been reported 'properly'.

Thank you, David Marks.

 

[Tom Kindlon]

This quote is from the preprint. A very similar quote is in the abstract of the published version.

 

[DokaGirl]

Good paper to have in the drawer as a summary of what has gone wrong. Covers most of the significant issues.

Important that this stuff is in the formal literature, where nobody can use the excuse that it hasn't been reported 'properly'.

Thank you, David Marks.

Ditto!

 

[DokaGirl]

Noted in this paper, the practise of the insurance industry depending on this pseudoscientific model to deny benefits for legitimately ill people.

I'd like to add that while the insurance industry accepts and supports an unproven model as scientific fact, what it normally or often demands from patients is objective proof of disability (e.g. biomedical tests).

 

[DokaGirl]

Attention bias discussed in the article, is of course viewed as a problem in other areas of health care.

As in: Patient: "Doctor, could you order an MRI for my, fill in the blank pain?"

Doctor: "No, if we find something wrong with your fill in the blank, you will focus on it too much."

Given this view seems to be accepted by at least some in medicine, attention bias was likely aided in its acceptance as one of the main pillars of the PS theory of ME and MUS.

ETA: added "attention bias" in second paragraph

 

[JohnTheJack]

Thank you, David Marks.

Yes, I know David has been working on this for some time and put in a lot of work, so thank you.

 

[dave30th]

Does anyone know anything about the journal? The article was received on December 6th and accepted six days later. That's pretty quick!!

 

[SNT Gatchaman]

Does anyone know anything about the journal?

This is the list of medical journals in their stable. I looked at a couple and quality is extremely poor. "Predatory" is probably an insufficient descriptor. Example is the World Journal of Radiology and Imaging. The current issue (at this time the only issue) lists the following papers —

• Degenerative Lumber Spondylosis: An Educational Radiographs and Expert Therapeutic Recommendation
• Aortic Disease in Neurology
• Magnitude and Predictors of Anaemia among Pregnant women attending Antenatal Clinics in Dar es salaam, Tanzania
• A girl from Pakistan with atypical autism: Expert opinion and a therapeutic recommendation
• Dietary Calcium Intake and Associated Factors Among Pregnant Women in Loma District, South West Ethiopia, 2020
• Highly Differentiated Human Airway Epithelial Cells Immunological Response to Respiratory Syncytial Virus and Human Rhinovirus C
• An Extensive Evaluation and Meta-Analysis of Transcranial Magnetic Stimulations Effectiveness as a Treatment for Alzheimers Disease

Editorial board here.

Spoiler: Example abstract

At random, picking one that might actually involve some radiology and imaging: Aortic Disease in Neurology has the following abstract in its entirety —

The aorta is the largest artery in the body that comes out of the left ventricle of the heart. Oxygen-rich blood enters the aorta with each contraction of the left ventricle and reaches all tissues and organs in the body through its small branches. The walls of the aorta consist of three layers that are made of different tissues: an inner thin layer, a middle thicker elastic layer and a thin outer layer. The walls of the aorta must be flexible enough to accommodate all the blood that is ejected from the left ventricle during each contraction. Elastic fibers are especially dense in the part of the ascending aorta where the blood pressure is the highest.

 

[dave30th]

"Predatory" is probably an insufficient descriptor.

This is unfortunate of course.

 

[Trish]

Oh dear what a pity. It's a valuable article and deserves a more reputable publisher.

 

[Josefina]

The Rise and Fall of the Psychosomatic Approach to Medically
Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue
Syndrome

Free fulltext (preprint)
https://psyarxiv.com/jpzaw/

Citation: David F Marks. (2022). The Rise and Fall of the Psychosomatic Approach to Medically Unexplained Symptoms, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Arch Epidemiol Pub Health Res, 1(2), 97-143.

Abstract

The psychosomatic approach to medically unexplained symptoms, myalgic encephalomyelitis and chronic fatigue syndrome (MUS/ME/CFS) is critically reviewed using scientific criteria.

Based on the 'Biopsychosocial Model', the psychosomatic theory proposes that patients' dysfunctional beliefs, deconditioning and attentional biases cause or make illness worse, disrupt therapies, and lead to preventable deaths.

The evidence reviewed suggests that none of these psychosomatic hypotheses is empirically supported.

The lack of robust supportive evidence together with the use of fallacious causal assumptions, inappropriate and harmful therapies, broken scientific principles, repeated methodological flaws and an unwillingness to share data all give the appearance of cargo cult science.

The psychosomatic approach needs to be replaced by a scientific, biologically grounded approach to MUS/ME/CFS that can be expected to provide patients with appropriate care and treatments.

Patients with MUS/ME/CFS and their families have not been treated with the dignity, respect and care that is their human right.

Patients with MUS/ME/CFS and their families could consider a class action legal case against the injuring parties.


from tom kindlon

Edit:
The final, published version is here:
https://www.opastpublishers.com/pee...lgic-encephalomyelitis-and-chronic--4899.html

I agree with @Sean that it’s important that points made in Marks’ paper find their way into formal literature. In terms of the some of the political and historical aspects of ME/CFS (psychiatrists’ links with the insurance industry & UK government officials, the role of the UnumProvident Psychosocial Research centre at Cardiff university, UK welfare reform etc.), such points already existed in formal literature.

I’ve written a few papers on the political underpinnings of ME, covering a fair amount of stuff (on the political side) that Marks has now written on:

https://www.researchgate.net/profile/Joanne-Hunt/research

These papers were published some time before Marks submitted his paper. I decided to start submitting pieces on this subject a few years ago because for many years I saw a gap in the research – for whatever reason people were not writing on the dark political underbelly of ME. I had a lot of resistance from reviewers, even hostile and intimidatory reviewer comments (maybe that’s why people were not publishing?), but that made me more determined to get something published. To say it's been a struggle would be an understatement, being severely disabled, no funding and not having the credibility markers to be taken seriously.

I also don’t understand why Marks would choose this journal, given how well published and respected he is – as others have indicated, it bears the cardinal signs of a so-called ‘predatory’ publisher. For example, as @Three Chord Monty indicated, it's on Beall's list, and as @dave30th pointed out, the time window between submission and acceptance is super short. It’s also not recognised by DOAJ, nor a member of OASPA – which isn’t necessarily an issue at all, but combined with the high APCs, and the ostensible size and reach of the publishers, it’s a warning sign. (As a researcher working largely on my own, I’ve almost fallen prey to predatory journals before, so I’m familiar with their ways). The APC is over $3,000 – that is an awful lot of money to part with for a journal that carries all these warning signs.

 

[Dolphin]

I agree with @Sean that it’s important that points made in Marks’ paper find their way into formal literature. In terms of the some of the political and historical aspects of ME/CFS (psychiatrists’ links with the insurance industry & UK government officials, the role of the UnumProvident Psychosocial Research centre at Cardiff university, UK welfare reform etc.), such points already existed in formal literature.

I’ve written a few papers on the political underpinnings of ME, covering a fair amount of stuff (on the political side) that Marks has now written on:

https://www.researchgate.net/profile/Joanne-Hunt/research

These papers were published some time before Marks submitted his paper. I decided to start submitting pieces on this subject a few years ago because for many years I saw a gap in the research – for whatever reason people were not writing on the dark political underbelly of ME. I had a lot of resistance from reviewers, even hostile and intimidatory reviewer comments (maybe that’s why people were not publishing?), but that made me more determined to get something published. To say it's been a struggle would be an understatement, being severely disabled, no funding and not having the credibility markers to be taken seriously.

I have an idea how hard it is and am grateful for your work on this.

It frustrated me that Margaret Williams never seemed to submit anything for publication, not papers, letters or even (I believe) e-letters. I was grateful for her work, alone or with people like Malcolm Hooper, but I believe it would have had more impact if it had been published.

 

[Josefina]

I have an idea how hard it is and am grateful for your work on this.

It frustrated me that Margaret Williams never seemed to submit anything for publication, not papers, letters or even (I believe) e-letters. I was grateful for her work, alone or with people like Malcolm Hooper, but I believe it would have had more impact if it had been published.

Thanks Dolphin, I really appreciate that. And I agree ref the work of Hooper & Williams!

 

[Sly Saint]

I have an idea how hard it is and am grateful for your work on this.

It frustrated me that Margaret Williams never seemed to submit anything for publication, not papers, letters or even (I believe) e-letters. I was grateful for her work, alone or with people like Malcolm Hooper, but I believe it would have had more impact if it had been published.

incase anyone is interested they are on this thread
https://www.s4me.info/threads/artic...m-eileen-marshall-1994-2007-and-others.13034/

 

[Trish]

Some posts have been moved to:
United Kingdom - Suffolk and Norfolk ME/CFS services