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M.E. must continue to be classified as neurological

April 24, 2017

Action for M.E. has collaborated with other Forward M.E. charities to strongly support the call for M.E. to continue being classified as a neurological condition by the World Health Organisation (WHO).

In the WHO’s current (10th) edition of the International Classification of Diseases (ICD-10), postviral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome are classified as neurological.

Following uncertainty from the WHO about where these conditions might be listed in the next classification (ICD-11), which is currently being drafted, UK and US advocates Suzy Chapman and Mary Dimmock have prepared a detailed proposal recommending:

  • keeping the titles of M.E., Chronic Fatigue Syndrome (CFS) and Postviral Fatigue Syndrome in the chapter ‘Diseases of the nervous system’
  • having separate entries for M.E. and for CFS
  • referring to M.E. as ‘Myalgic encephalomyelitis,’ where previously it had been called ‘Benign myalgic encephalomyelitis.’

You can read about this in more detail on Suzy’s dx revision website.

Having been contacted by Suzy and Mary, we have worked with other Forward M.E. charities to prepare a statement that supports their proposal, and jointly submitted it to the WHO as Forward M.E., supported by the group’s Chair, the Countess of Mar.

As part of the statement, we say: “We are aware that some patients are being referred to services for ‘medically unexplained symptoms’, under the mistaken assumption that M.E. is a ‘functional somatic syndrome.’ Indeed, the Joint Commissioning Panel for Mental Health (England) has recently published guidance stating that ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ is a ‘functional somatic syndrome.’

“As the evidence gathered by this proposal so clearly demonstrates, this illness is a ‘serious, chronic, complex, and multisystem disease’ that causes significant impairment - including neurological, cognitive, immunological, autonomic and energy metabolism disorder. We consider that it is vital that the WHO ICD continues to provide a bulwark against medical mismanagement of M.E. patients.”

Forward M.E.’s full statement can be accessed online. If you register for an account, the proposal and statement can also be found in full on the ICD-11 forum.

What is the ICD-11?

Published by the World Health Organisation, the International Classification of Diseases is a system of diagnostic codes for classifying diseases, designed to map health conditions, and their specific variations, to larger and more general categories. Currently in its tenth revision (ICD-10, published in 1992), it is subject to minor annual updates and major triennial updates. ICD-11 was planned for 2017, but has been pushed back to 2018.

What are “medically unexplained symptoms”?

In February, the Joint Commissioning Panel for Mental Health published guidance for mental health commissioners, stating that M.E. is a functional somatic syndrome, and recommends a referral to services for patients with Medically Unexplained Symptoms (MUS).

Action for M.E. absolutely does not support this recommendation, and we are extremely concerned by the impact that we are beginning to see on people with M.E.

Some of you have got in touch to tell us that you are being challenged by your healthcare professional as to the validity of your M.E. diagnosis, and instead being told that you have MUS.

If this experience is familiar to you, or you are concerned by the definition of M.E. used by your healthcare professional, please contact us (p 2).

We would advise anyone faced with this to make it clear that:

  • M.E. is not MUS, and categorising it as such contradicts the World Health Organisation’s International Classification of Diseases, which states that M.E. is a neurological condition.
  • the NICE guideline makes it clear that specialist services for M.E. are likely to be needed by a significant number of people with the condition; it is likely that the approach offered by MUS services would be inappropriate in many cases
  • a considerable body of published, peer-reviewed evidence, as comprehensively referenced by the 2015 Institute of Medicine report, indicates growing evidence of potential neurological, immunological and endocrinological biomarkers in M.E. The report concluded (p 209) that: “It is clear from the evidence compiled by the committee that M.E./CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.”

Action for M.E. is undertaking work to highlight this to health professionals and policy-makers, and can offer information and support to anyone being referred to services they feel are inappropriate.