Forward ME Group – Bodily Stress Syndrome

Andy

Andy

Retired committee member
The Forward-ME Group was addressed by Diane O’Leary, PhD. Visiting Fellow in Bioethics and Philosophy, Fondation Brocher, Hermance,Switzerland and Visiting Scholar in Neuroethics, Pellegrino Center for Clinical Bioethics, Georgetown University Medical Center, Washington DC. at its 28th March 2018 meeting.

Dr O’Leary highlighted the forthcoming update of the World Health Organisation’s ‘International Classification of Diseases’ guidance. This manual determines the diagnostic criteria, and diagnostic codes, used by medical and mental health providers around the world. Bodily Stress Syndrome (BSS) is a new diagnosis that will replace “medically unexplained symptoms” in a special primary care version of the ICD. When primary care providers think the source of physical symptoms is psychiatric rather than mental, BSS will be the diagnosis but the WHO plans to recommend some additional criteria which some claim will make it more difficult for ME patients to get medical care and support.

Dr O’Leary’s briefing paper to the Forward-ME Group is now available.
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http://www.meresearch.org.uk/news/forward-me-group-bodily-stress-syndrome/

The briefing paper is also available as a PDF here, http://forward-me.org.uk/Reports/BODILY STRESS SYNDROME INFO SHEET.pdf
 
This is just one of these zombie ideas that every time you think has been knocked down (because, yet again, treatment based on that idea fails to work) it just pops back up rebranded under a different name.

I don't think Forward-ME should work on these topics alone: IMHO it is critical to work with other charities that cover conditions where patients struggle to get a diagnosis. MS, SLE, MND all come to mind as replacing MUS with BSS (they should drop the final S) is going to lead to a lot of people with various tricky-to-diagnose health conditions being chucked in the psych bucket by overworked GPs.
 
Sly Saint said:
"When primary care providers think the source of physical symptoms is psychiatric rather than mental"

don't they mean 'rather than biological' or is there a difference between psychiatric and mental?
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You are probably right but of the two references given against that quote, one is paywalled at https://academic.oup.com/fampra/article-abstract/34/5/574/3798233?redirectedFrom=fulltext and the other doesn't contain that quote, as far as I can see, https://www.vumc.nl/afdelingen-themas/49661/20678990/4.3_Rosendal_MUS_BSS_WHO.pdf, so it's hard to confirm.
 
Trying to get my head around this. Here's what I understand. Do correct me if I'm wrong.

The WHO has two different classification systems:

One overall one that classes ME/CFS as a neurological condition, and has BDD (bodily distress disorder) as a psychiatric condition, but does not include ME in this.

The other one specifically for Primary Care which is the one where a new classification called Bodily Stress Syndrome (BSS) may be introduced that is based on broad symptom clusters, and would include ME/CFS.

This would presumably give the green light to Primary Care providers world wide to dump anyone with symptoms within those broad symptom clusters into BSS and save a lot of money on investigations by directing them straight from primary care to psychological therapies.

This is exactly what the UK is already trying to do with their IAPT therapy clinics for MUS (medically unexplained symptoms) under their leading lights, Rona Moss Morris, Michael Sharpe, Trudie Chalder et al. And they are using PACE as 'evidence'.

Aaaargh!
 
Andy said:
of the two references given against that quote, one is paywalled at https://academic.oup.com/fampra/article-abstract/34/5/574/3798233?redirectedFrom=fulltext
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This article/paper can be found here :

http://sci-hub.tw/10.1093/fampra/cmx033

A quote from it :

Participating PCPs in Brazil, China, Mexico, Pakistan and Spain were asked to use the
revised classification, first in patients that they suspected might be psychologically distressed
(Part 1), and second in patients with multiple somatic symptoms causing distress or disability not
wholly attributable to a known physical pathology, or with high levels of health anxiety
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Imagine a patient who has a physical health problem. The doctor doesn't believe the patient and decides they are mentally ill. They also put a code on the patient's notes (I used to know what it was but I've forgotten it), so that no other doctor can find out how useless the first doctor was in diagnosis. Because their problem is not being taken seriously, the patient becomes psychologically distressed and over time develops high levels of health anxiety. This state of affairs has been going on throughout human history in some form or other, but is clearly going to get an awful lot worse. I find it shocking that GPs will be earning in excess of £100,000 a year to destroy tens or hundreds of thousands of lives and just leave people sick, then blame the patient for the medical profession's own failures.

Edit : The code I couldn't remember is "16h". I don't know how long the code has been in use, but I know doctors have had methods of alerting other doctors to patients they don't like for various reasons for many decades (at the very least).
 
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Agree that it would be a good idea to contact Suzy Chapman

I have some concerns with this letter.

First, the letter states the following:
Many have been aware that the category of “somatoform disorders” is under revision in that draft[xiii]. This is the diagnosis in psychiatry for physical symptoms caused by mental distress, and it will be replaced in the general ICD by “bodily distress disorder”, or BDD (which is a lot like “somatic symptom disorder” in the most recent DSM). Criteria for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease.​

I disagree with the bolded statement and a similar statement elsewhere in the document. Terms like somatic symptom disorder, BDD and all the other terms that frame physical symptoms as a psychological condition are particularly problematic for people with ME because the disease is widely misunderstood and has a history of being conflated with these terms.

When the DSM-5 was under development, a broad cross-section of disease groups objected to the term "somatic symptom disorder" because its criteria were so broad - a patient can be given this diagnosis if the provider "feels" that the patient's concerns with their symptoms are "excessive." Even the chair of the DSM-4, Allen Francis, published articles about the problems with this construct. Here's one - https://www.psychologytoday.com/us/...sm-5-refuses-correct-somatic-symptom-disorder

Beyond that, from discussions with Suzy Chapman, a) its not clear to me that WHO has actually made a decision on the BSS category or on proposals being floated by other groups b) its not clear which countries use this primary care version being discussed. I think it will be important to clarify both of these

Finally, this statement is quite bold but I'd want to see the evidence that WHO actually "intends" to route ME patients into psychiatry.
At this time it seems clear that the US health authorities driving the new biological approach to ME are unaware of the WHO’s intention to route ME patients across the globe into psychiatry through the ICD-11-PHC. ​

Some background regarding ICD-11 - There are two main proposals that I know of. Suzy and I submitted a proposal to ICD Revision last March to retain ME and CFS in the neurological chapter. A second proposal was submitted in November 2017 to move ME and CFS to the Symptoms chapter under symptoms of the musculoskeletal system because fatigue is "a manifestation of skeletal muscle dysfunction." This second proposal is remarkably flawed, ignored most of the biomedical evidence and instead relied heavily on the CBT/GET/Biopsychosocial studies.

WHO has stated that they are not going to make any decisions on these proposals until they complete an evidence review, which is due shortly. Suzy and I submitted a response to the second proposal that summarized its flaws and called on WHO to include the breadth of evidence assessed by IOM and in more recent studies.
 
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