There is currently no specific test that can detect M.E. Potential biomarkers – a characteristic by which a particular biological process or disease can be identified – are still being investigated.
M.E. is instead diagnosed by excluding other illnesses that share the same symptoms, This should be a positive clinical diagnosis made on a well-characterised constellation of symptoms.
The earlier the illness is recognised, the sooner symptom management and support can begin. Many people with M.E. find it helps to keep a diary of their symptoms so that they can take this to their GP.
Once you have a diagnosis of M.E. your GP may be able to refer you to an M.E. specialist (subject to availability in your area) who will be able to work with you on ways of managing your symptoms. Most specialist clinics don't accept self-referrals so it's important that you get a diagnosis if you'd like to see an M.E. specialist.
While there is currently no diagnostic test specifically for M.E., a study published in 2017 by a group of Australian researchers in the Journal of Translational Medicine claims to have identified a protein present in the blood of people with M.E. and CFS which they say has the potential to one day become a blood test for the illness.
You can find out more about diagnosis and questions to ask GPs in our Newly diagnosed with M.E. booklet.
No single set of diagnostic criteria (a specific combination of signs, symptoms, and test results used to determine the correct diagnosis) for M.E. has been universally agreed.
Instead, there are different classifications used in different countries and sometimes within the same country for diagnosing the illness. This means that different groupings of symptoms might be required.
Speaking at the UK CFS/M.E. Research Collaborative conference in 2014, Professor Andrew Lloyd advised being “very clear about the purpose of the criteria. From the point of view of making a diagnosis, the criteria broadly matter but actually what really matters is the care that leads from the diagnosis.”
This was a completely different issue for criteria for entry into a clinical trial or a research study, he said, where it was important to understand the similarities and differences within the disorder.
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).
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
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:
Action for M.E. is undertaking work to highlight this to health professionals and
In 2007, the National Institute for Health and Care Excellence (NICE) published a clinical guideline on the diagnosis and management of M.E. for NHS healthcare professionals in England and Wales.
The NICE guideline for M.E. states that a diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for:
It also says that a diagnosis of M.E. should be reconsidered if none of the following key features are present:
Produced in 2010, the Scottish Good Practice Statement (SGPS) on M.E. provides GPs with guidance on the differential diagnosis and clinical management of patients with M.E.
The SGPS recommends:
An evaluation (White et al, 2012, Journal of the Royal Society of Medicine short reports) of referrals made by GPs to the specialist clinic at Bart’s Hospital found that 49% did not have a diagnosis of M.E.
A study (Newton et al, 2010, Journal of the Royal College of Physicians of Edinburgh) of patients referred by GPs to the Newcastle NHS M.E. Service found that 40% were diagnosed with conditions other than M.E. Of these:
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