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.

On 9th April 2018, The Countess of Mar issued the following clarification –

“Forward-ME would like to clarify its position on proposed changes to the ICD that will affect ME patients, including “bodily distress disorder” in the general ICD, and “bodily stress syndrome” in the ICD for primary care.
Before we go any further, I would gently remind people why I formed Forward-ME nearly ten years ago.  My purpose was to establish an organisation under an independent Chairman which can work together for the common good, and I believe that our overall aim is why we have made progress.

I hope that the following analysis will explain our current understanding of this situation and that you will feel able to endorse the joint conclusion we came to.

Summary of key points

  •  There are two versions of the International Classification of Diseases (ICD), the standard international diagnostic tool published by the World Health Organisation: the general ICD, and the primary care ICD.
  • The general ICD may be revised to replace the “somatoform disorders” with a new category, “bodily distress disorder” (BDD). We have previously set out our concerns about this.
  • The primary care ICD may be revised to replace the “medically unexplained symptoms” (MUS) with a new category, “bodily stress syndrome” (BSS).
  • Our current understanding is that BSS would be set up in such a way that it does not allow doctors to conclude that ME is a biological disease. Instead, it ensures that ME patients will be captured with a psychiatric diagnosis.
  • If BSS is included in the next revision of the ICD, this would override any guidance, including the UK guideline published by the National Institute of Health and Care Excellence, that recognises ME as a biological disease. This could have serious implications for treatment and symptom management.
  • We understand that the news about BSS is a worrying development, but it is essential that we understand the situation in as much detail as possible before moving forward, and Forward-ME will keep the M.E. community updated as soon as it has learnt more by engaging with the WHO in the appropriate way.

Further information

Bodily distress disorder

First, we would like to acknowledge the excellent work that has been done by advocates to clarify the implications of “bodily distress disorder” (BDD), the new diagnosis that’s been recommended to replace “somatoform disorders” in ICD-11.  Their hard work has facilitated understanding of this construct by sharing their detailed research with the M.E. community.
We recognise that BDD is problematic for ME, because it gives physicians the latitude to conclude that ME patients are suffering from a psychiatric condition.
Second, we would like to clarify that we are concerned about the new diagnosis that’s been recommended to replace “medically unexplained symptoms” (MUS) in the primary care version of the new ICD, called “bodily stress syndrome” (BSS).

How BDD is different from BSS

BDD is threatening because it allows physicians to diagnose ME as a psychiatric condition.  However, if a physician or a national health system were to conclude that ME is a biological disease, BDD criteria would not conflict with that conclusion.  While BDD does give physicians the freedom to construe ME as psychiatric, there is nothing in BDD criteria that actually demands that they do so.
BSS is more threatening because it does make that demand.  Symptom cluster criteria were specifically designed to capture ME patients and route their care through psychiatry.  If a physician or national health system were to conclude that ME is a biological disease, that conclusion would conflict with physicians’ directives for BSS.  This is a serious problem.  Symptom cluster criteria do not allow physicians to conclude that ME is a biological disease.  They ensure that ME patients will be captured with a psychiatric diagnosis.

Will the new Primary Care ICD be used?

The current ICD for primary care (called ICD-10-PHC) is mostly an abridged version of the general ICD, with limited use.
For many years, however, the WHO has been developing a more substantial ICD for primary care.  Most importantly, they have developed a manual for mental health disorders in primary care that has its own unique diagnostic constructs and criteria, many of which are designed to cut expenditures for national health systems.  It seems unlikely that the WHO would have spent so much time and money on this endeavour if they did not imagine that the new primary car.”

Dr O’Leary’s updated briefing paper to the Forward-ME Group is available here.