Bodily distress syndrome: Concerns about scientific credibility in research and implementation, 2018, O'Leary

Andy

Andy

Retired committee member
Saw this linked to on Facebook.

The credibility of psychosomatic medicine has recently been called into question through challenges to the scientific integrity of the “PACE trial”, which claimed success for psychiatric treatment in managing myalgic encephalomyelitis/chronic fatigue syndrome. The newest product of research in psychosomatic medicine is “bodily distress syndrome” (BDS), a Danish diagnostic construct developed to replace “somatoform disorders”, “medically unexplained symptoms” and “functional somatic syndromes”. I set out in this paper to examine the science that supports the construct of BDS, both in design and in implementation.

Following the Introduction, in §2 I clarify the details that define BDS and the problems the construct is designed to resolve. In §3 I explore three problems with the science behind BDS. In §4 I consider the World Health Organization (WHO)’s effort to implement BDS in the International Classification of Diseases (ICD), noting that while BDS criteria fail in both WHO studies, the workgroup nonetheless insists that the ICD should recommend them for global use. I conclude that BDS gives support to recent concern that scientific standards in psychosomatic medicine are inadequate, closing with a brief discussion of ethical problems that arise when global health policy decisions are not grounded in science.
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Full paper available at https://docs.wixstatic.com/ugd/23f4ba_ae3ffbf6ff614c669f1e6ad9420a2dc9.pdf

I'm puzzled about where this was actually published. In the document linked to above it says
Journal of Biological Physics and Chemistry 18 (2018) 67–77
Received 4 April 2018; accepted 27 April 2018
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On what appears to be the website of the Journal of Biological Physics and Chemistry the listed contents of that edition of their Journal only goes up to page 60, http://www.amsi.ge/jbpc/11818/jbpc11818.html

I'm probably not understanding something but currently I remain confused.
 
I like this bit:

Does research provide scientific support for the success of BDS at this task? Is there sufficient evidence to show that criteria for BDS do safely and reliably distinguish symptoms of disease from those best classified and managed in mental health?

The most salient fact to note about BDS research is that it simply fails to answer this question. The central 2010 study begins with a paragraph that reminds us of the range of functional somatic syndromes, then it presents a list of references that explore similarities among those syndromes [13]. After that opening paragraph the study accepts that functional somatic syndromes are a single condition best diagnosed and managed in mental health, and the question is set aside. Similarly, in the book Functional Disorders and Medically Unexplained Symptoms, Fink and colleagues begin by listing a range of functional syndromes within thirteen medical specialties, and then they assert, still within the first page, that “the syndromes in Table 1.1 are best understood as an expression of bodily stress and not as classical physical diseases” [22]. Like the study, the book then proceeds to explore “subtypes” of bodily distress, tools for management, and ties with historical conceptions of psychosomatic conditions. At no point does the book offer its own research to support the conclusion that conditions in this group, individually or collectively, are correctly diagnosed and managed within mental health rather than medicine.
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And..
...Finally, the US National Academy of Medicine did proceed through a three-step, evidence-based evaluation of the comparative merits of biological and psychiatric approaches to diagnosis and management of ME/CFS; in 2015 they unequivocally concluded that “ME/CFS is a serious, chronic, complex systemic disease” [7].

Because the US conclusion establishes a strong possibility that patients with ME/CFS suffer from a biological disease that requires biological medical care, it also establishes an unacceptable level of risk with any diagnostic construct that would systematically channel care for ME/CFS down the mental health track. In this way, ME/CFS is an important cautionary tale. Regardless of which side we might favour in the ME/CFS debate, the very existence of the debate establishes that BDS carries significant medical risk.
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In the conclusion:
The conclusion we are forced to draw is—again, as with the PACE trial—that the failings of the science are comfortable for the discipline. While research into BDS could not begin to pass scientific or evidence-based review outside of psychosomatic medicine, professionals within the field find it to be well defended. In short, BDS supports recent concern that scientific standards in psychosomatic medicine are inadequate.
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Nice to see the PACE trial used as an established example of poor science in the field of psychosomatic medicine.
 
I think I just fell in love a little bit...

I endeavor in my work to bring this shadowy area of medicine into public view. As an ethicist, I argue that women's health is routinely threatened by the principle in medical training that symptoms with mental causes predominantly affect women. I challenge our understanding of patient autonomy, informed consent, and doctor-patient truthfulness in cases where diagnosis of mental causes is made or considered. I suggest that medicine is sorely in need of “diagnostic ethics”, discourse that can articulate parameters for ethical management of diagnostic uncertainty.
...
As a speaker and advisor, I work for practical improvements in policy related to diagnostic uncertainty. In this capacity I have spoken to or advised organizations concerned with women's health, chronic Lyme disease, rare disorders, myalgic encephalomyelitis/chronic fatigue syndrome, Ehlers-Danlos syndrome, periodic paralysis and others.

From O'Leary's website: https://www.dianeoleary.com
 
There's a lot to like. Another example:

A challenge to the scientific credibility of the PACE trial can only be viewed as a challenge to the credibility of the field of psychosomatic medicine. No matter which side of the PACE debate we might prefer, there has been enough evidence to call into question the scientific standards of PACE researchers, those who supported the study both scientifically and in terms of funding, and those who allowed the trial to pass through the peer review process. Indeed, it is difficult to imagine how such a large-scale investigation could have developed, proceeded and passed through the review process unless its scientific failings were actually characteristic of its field. For these reasons, the PACE controversy suggests a need to evaluate the scientific credibility of psychosomatic medicine generally.
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From what you are all saying this sounds like a good paper. I haven't any brain cells left to read it today, and have been trying to cheat my way to writing a news item about it for tomorrow's news in brief. I'll post it here in the hope that someone who has managed to read the paper will correct my bloomers:
Journal of Biological Physics and Chemistry
''Bodily distress syndrome: Concerns about scientific credibility in research and implementation'' by Diane O'Leary.
BDS is a construct without supporting evidence. It brings to the fore questions about the quality of research in psychosomatic medicine, including the PACE trial. This has implications for WHO classifications of diseases. O'Leary provides a detailed analysis of the problems.
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"The scientific success of any hypothesis depends upon
clarity about the question the hypothesis is proposed to
answer. Similarly, the scientific success of any
conceptual construct depends upon clarity about the
purpose the construct is intended to serve, and proof that
the construct does successfully accomplish that goal. On
this very rudimentary scientific level, the construct of
bodily distress syndrome is unsupported."

"
ME/CFS is an important cautionary tale. Regardless
of which side we might favour in the ME/CFS debate, the
very existence of the debate establishes that BDS carries
significant medical risk."
 
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