NICE 2021 Criteria for ME/CFS

In 2021, NICE (National Institute for Health and Care Excellence) published a guideline for diagnosing and managing cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This guideline replaced the NICE 2007 guideline, and key changes included:

  1. Recognition of post-exertional malaise (PEM) as a key symptom of ME/CFS.
  2. Graded Exercise Therapy (GET) no longer recommended.
  3. Cognitive Behavioural therapy (CBT) no longer considered as a treatment for ME/CFS itself. The guideline emphasises that CBT “is not a cure for ME/CFS and should not be offered as such. Instead, it aims to improve wellbeing and quality of life and may be useful in supporting people who live with ME/CFS to manage their symptoms and reduce the distress associated with having a chronic illness.”

Summary of NICE 2021 Criteria

To diagnose ME/CFS, all of the following symptoms should be present for at least 3 months

  1. 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.
  2. Post-exertional malaise (PEM) after activity in which the worsening of symptoms is often delayed in onset by hours or days, disproportionate to the activity, and has a prolonged recovery time that may last hours, days, weeks or longer.
  3. Unrefreshing sleep and/or sleep disturbance, which may include feeling exhausted, feeling flu-like and stiff on waking, and broken or shallow sleep, altered sleep pattern or hypersomnia (excessive sleepiness).
  4. Cognitive difficulties, often referred to 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.

Note: Ability to engage in occupational, educational, social or personal activities must be significantly reduced from pre‑illness levels and symptoms must not be explained by another condition.

Whilst symptoms must persist for 3 months for a diagnosis, ME/CFS can be suspected from 6 weeks in adults (and 4 weeks in children). If ME/CFS is suspected physicians should carry out a medical assessment, physical examination, assessment of impact of symptoms on psychological and social wellbeing, and investigations – such as blood tests and urinalysis – to exclude other diagnoses.

Additional details

  • The guideline notes a number of symptoms that may be associated with, but not exclusive to, ME/CFS. This includes –  orthostatic intolerance,  temperature hypersensitivity, neuromuscular symptoms, flu-like symptoms, alcohol and/or food/chemical intolerance, sensory hypersensitivity, and pain.
  • The guideline also details ME/CFS severity levels – Mild, Moderate, Severe, and Very Severe. It is emphasised that the definitions only provide a guide to the level of impact on everyday functioning, and “are not clear cut because individual symptoms vary widely in severity and people may have some symptoms more severely than others.”

Considerations

Having addressed major critiques of the NICE 2007 guideline (for CFS/ME), the NICE 2021 guideline for ME/CFS was broadly welcomed by patients, and ME/CFS charities and advocacy groups. Nevertheless, the publication was not without controversy as in July 2023, 3 PACE trial authors and over 50 international specialists co-led by researchers from the Institute of Psychiatry, Psychology & Neuroscience, King’s College London, published an article criticising the 2021 NICE guideline changes to GET and CBT recommendations as a “controversial U-turn”. Such claims were not likely to go without comment – NICE gave a detailed response emphasising that the guideline had been drafted by an independent committee and followed a transparent process which conformed to recognised standards for guideline development.

Read about the delays in publishing the NICE 2021 guideline for ME/CFS

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