What is M.E.?

A A A Text size
Diagnosing M.E.

Diagnosing M.E.

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.

If you are struggling to get a diagnosis, our Healthcare Services team may be able to help.

Resources to share with your GP

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 recommendations in its guideline for 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.

You can use our template letter to signpost your GP to Dr Nina Muirhead's CPD-accredited free online learning module on the diagnosis and management of M.E. It's based on clinical case studies, and reflects emerging biomedical evidence alongside patients' perspective. It's complemented by our Learn about M.E. podcast, with input from people with M.E. and clinicians.

UK guidelines for M.E.

The 2021 NICE guideline for M.E. for health professionals in England and Wales advises that they should suspect M.E. if:

  • a person has had a specific set of persistent symptoms for a minimum of six weeks in adults and four weeks in children and young people and
  • the person's ability to engage in occupational, educational, social or personal activities is significantly reduced from pre-illness levels and
  • symptoms are not explained by another condition.

This specific set of symptoms can be found on page 12 of the guideline, as follows (all should be present for a diagnosis of M.E.):

  • Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
  • Post-exertional malaise after activity in which the worsening of symptoms:
    • is often delayed in onset by hours or days
    • is disproportionate to the activity
    • has a prolonged recovery time that may last hours, days, weeks or longer
  • Unrefreshing sleep or sleep disturbance (or both), which may include:
    • feeling exhausted, feeling flu-like and stiff on waking
    • broken or shallow sleep, altered sleep pattern or hypersomnia.
  • Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.

However, contradictory guidance has lead to concerns 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. This document was updated following the publication of the 2021 NICE guideline to highlight new information.

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.