Scientists have not yet found biological abnormalities in M.E. that are specific enough to be used as a diagnostic test (even though abnormalities in the brain and the immune system show very clearly that this is a serious, systemic illness).
A doctor will assess medical history, recognise the typical symptom pattern of M.E. and conduct basic tests, for example on blood or urine samples, to rule out other conditions; several visits to the doctor might be needed.
Many illnesses can sound quite similar in their symptoms and excluding other conditions is an essential part of the process to inform a diagnosis.
The earlier the illness is recognised, the sooner symptom management and support can begin. Some 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 can offer options for managing your symptoms.
Our booklet, Newly diagnosed with M.E., has advice for you and your GP, facts about M.E., guidance to help you be an active partner in your own care, suggestions for questions for you to ask your GP and information about existing guidelines.
It has been formally endorsed by the National Institute for Health and Care Excellence (NICE), as it refers to some of the existing recommendations in the NICE guideline on M.E., specifically:
- the time in which a diagnosis should be made
- the right of all patients to shared decision making
- the need for individualised, person-centred programmes of symptom management and support for people with M.E.
UK guidelines for M.E.
The 2007 NICE guideline for M.E. for England and Wales (undergoing essential updates, though this process has been delayed due to the Coronavirus pandemic) states that a diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for:
- four months in an adult
- three months in a child or young person; the diagnosis should be made or confirmed by a paediatrician.
It also says 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.
We are concerned that a small number of people with M.E. are being challenged by their healthcare professional as to the validity of their M.E. diagnosis, and instead being told that they have medically unexplained symptoms. If you are concerned by the definition of M.E. used by your healthcare professional, please contact us.
The 2010 Scottish Good Practice Statement (SGPS) on M.E. provides GPs with guidance on the differential diagnosis and clinical management of patients with M.E. It recommends making a formal positive diagnosis three-four months into the illness, based on symptom pattern, and excluding other conditions as appropriate.
There is no official guideline in Northern Ireland, though some doctors choose to use the NICE guideline, and currently no specialist services. The support group Hope 4 M.E. and Fibro is a great resource for information and support in Northern Ireland.
Research developments in diagnosis
While there is currently no diagnostic test specifically for M.E., in 2017, Australian researchers announced that they had identified a blood protein with the potential to become a test for M.E. In April 2019, researchers at Stanford said they were piloting another type of blood test to identify M.E., based on how a person’s immune cells respond to stress.
Small studies like these - the Stanford research looked at samples from just 40 people - must be replicated and validated, with many more people and disease controls. Nevertheless, these developments are enormously encouraging.