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Medically unexplained symptoms

In February 2017, 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).

Why is this important?

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.

We would advise anyone challenged on 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.”

What is Action for M.E. doing about it?

We're 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.

At our 2019 AGM and conference, Joan Crawford, Counselling Psychologist at North West Boroughs Healthcare NHS Foundation Trust and Chair of Chester M.E. Self-Help, led a workshop for health, social care and research professionals on MUS.