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As there is no specific single test to detect M.E., diagnosis is made after other possible known causes for symptoms have been excluded. This should be a positive clinical diagnosis made on a well-characterised constellation of symptoms.

Our Newly diagnosed with M.E./CFS has been endorsed by the National Institute for Health and Care Excellence (NICE) and provides information and advice about the diagnosis, symptoms and management of M.E. There is also guidance to help patients be an active partner in their own care, suggestions for questions to ask GPs, and information about existing guidelines for health professionals. We advise all healthcare professionals who need information on M.E. to begin by downloading and reading this free resource.

Further guidance for GPs in Scotland, building on the SGPS, is provided in our booklet, Managing M.E./CFS: a guide for GPs in Scotland

The NICE guideline for M.E. and the Scottish Good Practice Statement on M.E. detail the signs and symptoms that characterise M.E., and tests that should be undertaken. Diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for four months in an adult or three months in a child or young person.

The NICE guideline also states that a diagnosis of M.E. “should be reconsidered if none of the following key features are present:

  • post-exertional fatigue or malaise
  • cognitive difficulties
  • sleep disturbance
  • chronic pain.”

Action for M.E.’s 2014 M.E. Time to deliver survey found that:

  • 10% of people with M.E. had been symptomatic for four years or less
  • 17% for five years to nine years
  • 58% for 10 years or more.

Results also indicated that, despite the NICE guideline for M.E. stating that symptoms should be present for four months before diagnosis is made, a significant number of people with M.E. wait much longer, potentially delaying access to specialist care and support.

Institute of Medicine report

In February 2015, the Institute of Medicine (IOM) in the US published a landmark report, Beyond M.E./CFS: redefining an illness. It reviewed a substantial body of evidence and makes four key recommendations that could have important implications for the way that M.E. is understood, diagnosed, treated and researched.

The Institute of Medicine report recommends:

  • using new diagnostic criteria focused on three core symptom sets including post-exertional malaise
  • replacing the name M.E./CFS with the name Systemic Exertion Intolerance Disease (SEID)
  • using a new code for the condition in the International Classification of Diseases (ICD-10), not linked with chronic fatigue or neurasthenia
  • developing a standardised toolkit for screening and diagnosing patients.

Action for M.E.'s response, which was informed by consultation with people affected by M.E., strongly applauds the IOM committee's intention to reinforce and legitimise the serious impact of M.E. As a result of the report, the US Centers for Disease Control began revising the clinical toolkit it publishes for M.E. in April 2015.