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layout: post
date: 2025-10-01
link: https://cks.nice.org.uk/topics/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me/cfs/
title: Myalgic encephalomyelitis (ME/CFS)
cited: NICE

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> Summary
>
> - Myalgic encephalomyelitis or encephalopathy (ME) or chronic fatigue syndrome (CFS) is a complex chronic condition defined by a specific pattern of different symptoms that impact a person's quality of life and functioning.
>   - There is typically a clear relationship between normal everyday activity levels causing a disproportionate escalation in fatigue, which does not improve with rest and is slow to recover.
>   - The exact pathophysiology is not fully understood.
>   - Symptoms typically fluctuate and can change unpredictably in nature and severity over a day, week, or longer.
> - A flare-up describes a worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the person's ability to perform usual activities. It is typically transient and resolves after a few days.
> - A relapse describes a sustained and marked exacerbation of symptoms lasting longer than a flare-up and needing a substantial and sustained adjustment to the person's energy management.
> - _Triggers may include acute infection or illness, overexertion, injury or trauma, other medical conditions, sleep disturbance, or stress. There may be no identifiable trigger._
> - Complications include reduced quality of life, social stigma, loss of trust in healthcare and social care professionals, and impact on mental health, education, and work.
> - There is no diagnostic test for ME/CFS. A diagnosis should be suspected if the person has the following symptoms for at least 6 weeks that significantly impact functioning and are not explained by another condition:
>   - 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.
>   - Unrefreshing sleep or sleep disturbance (or both).
>   - Cognitive difficulties.
>   - There may be additional symptoms associated with autonomic dysfunction, pain, the gastrointestinal tract, and sensory hypersensitivities, for example.
> - Investigations should be arranged to exclude alternative or coexisting conditions, including blood tests and urinalysis.
> - Adults with persistent symptoms after 3 months should be referred to an ME/CFS specialist team for confirmation of the diagnosis and development of a personalized care and support plan.
> - Review of a person with confirmed ME/CFS should be arranged at least annually in primary care, including:
>   - Assessing current or new symptoms and investigating appropriately.
>   - Reviewing psychological, emotional, and social wellbeing; self-management strategies; and impact on functioning.
>   - Advising about sources of information and support.
>   - Reviewing and revising the specialist energy management plan, physical functioning and mobility, and physical activity or exercise programme (if relevant).
>   - Considering referral to a physiotherapist or occupational therapist working in an ME/CFS specialist team if needed.
>   - Reviewing the person's support needs, including medicines management; education, training, or employment needs; financial and social care support.
>   - Managing any associated conditions and comorbidities including mental health, nutrition and bone health advice.
>   - Offering referral for cognitive behavioural therapy if the person wishes for this.
>   - Ensuring early recognition, planning for, and self-management of flare-ups or relapse.
>   - Providing a named contact in primary care and/or the ME/CFS specialist team to co-ordinate care and provide supports.