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 booklet is 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.
Our Information and Support team welcome calls and emails from any professionals working with people with M.E. We can share resources and signpost to support for patients and/or clients.
Our Healthcare Services team includes a doctor, physiotherapists, counsellors and chaplains, offering individually tailored whole-person care, with an understanding of severe M.E. As a charity, we charge fees for our Healthcare Services only to cover our costs, and a bursary for up to 50% of fees may be available, depending on your circumstances.
A collaboration of clinicians, patients and charities, including Action for M.E. and the Medical Education working group of the UK CFS/M.E. Research Collaborative, led by Dr Nina Muirhead, launched a short, CPD-accredited module on M.E. in May 2020. This free online resource is composed of 10 clinical cases assessing your knowledge of M.E., and is available at Study PRN. It's complemented by our Learn about M.E. podcast, with input from patients Anna and Craig, about the positive difference that good care and support has made for them, alongside insight from Dr Muirhead and GP Claire Wood.
Dr Muirhead also contributed to one of a series of insightful films by Dialogues for ME/CFS, a Wellcome Public Engagement Award-winner, which you can watch below.
The NICE guideline for M.E.
The October 2021 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 within three months.
If you suspect M.E., the NICE guideline advises (section 1.3.1) giving patients "personalised advice about managing their symptoms. Also advise them:
- not to use more energy than they perceive they have − they should manage their daily activity and not 'push through' their symptoms
- to rest and convalesce as needed (this might mean making changes to their daily routine, including work, school and other activities)
- to maintain a healthy balanced diet, with adequate fluid intake."
The NICE guideline also highlights the stigma of M.E.
"Recognise that people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness."
It emphasises that specific considerations/advice must be followed for people with severe or very severe M.E.; and for children and young people. It also says that any plan put in place to support the person with M.E. (eg. symptom management plan) must be tailored to the individual, by the individual, with appropriate support from a professional with experience of M.E. if needed/wanted.
Action for M.E.’s 2019 Big Survey found that:
- 12% of people with M.E. had been symptomatic for three years or less
- 27% for four years to nine years
- 61% for 10 years or more.
Results also indicated that, despite NICE guidance, a significant number of people with M.E. wait a long time to be diagnosed, potentially delaying access to specialist care and support. Our survey found that:
- roughly 28% of adults are receiving a diagnosis after four months.
- 45% of people are waiting more than a year.
The prognosis varies, possibly because of sub-types or phenotypes, and different definitions of recovery. A Chief Medical Officer’s report published in 2002 concluded that most patients show improvement over time, a substantial number have a fluctuating course of illness with periods of remission and relapse, but that a significant minority become severely ill and permanently disabled.
A review of published studies reported recovery rates of 8–63% (median 40%), with full recovery being rare (5–10% achieving total remission). The prognosis in children and young people is more optimistic.