NICE has published draft guidance on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
Among the key recommendations are the following.
Diagnosis
- Diagnosis is based on clinical grounds.
- ME/CFS is characterised by:
- debilitating fatigability not caused by excessive exertion and is not significantly relieved by rest,
- post-exertional symptom exacerbation after activity,
- unrefreshing sleep, and
- cognitive issues.
- Suspect ME/CFS if:
- all characteristics are present for ≥6 weeks (≥4 weeks in children),
- ability to engage in activities is significantly reduced, and
- symptoms are new and had a specific onset.
- Symptoms include:
- pain;
- hypersensitivity to light, noise, touch, movement, temperature and smells;
- extreme weakness;
- difficulties speaking or swallowing;
- sleep disturbance;
- gastrointestinal symptoms; and
- postural orthostatic tachycardia syndrome and orthostatic hypotension.
- Take a full history including what exacerbates or alleviates symptoms and sleep quality, physical functioning and current and past experiences of medicines, vitamins and mineral supplements (including tolerance and sensitivities).
- Do not delay making a provisional diagnosis of ME/CFS.
- Do not offer medicines or supplements to treat or cure ME/CFS.
- Develop a personal management plan that addresses:
- information and support needs,
- support for activities of daily living,
- education, training or employment support,
- self-management,
- physical maintenance,
- symptom management,
- managing flares and relapse, and
- ways to contact their clinical team.
- Assess for and advise on prevention of complications of long-term immobility.
- Do not advise unrestricted exercise that is not part of a supervised programme.
- Refer for physiotherapy or occupational therapy as required.
- Monitor for malnutrition, especially in severe cases.
- Conduct safeguarding assessment.
- Help people understand their energy envelope.
- Help patients to recognise when they are approaching their limit.
- Use a flexible, tailored approach that allows for the need to pull back when symptoms are worse.
- Establish an individual activity pattern, for example:
- reduce activity as the first step,
- plan periods of rest and activity,
- incorporate pre-emptive rest,
- alternate different types of activity, and
- break activities into small chunks.
- Emphasise adequate fluid intake and balanced diet.
- Minimise nutritional complications of nausea, swallowing problems or difficulties in buying and preparing food.
- Refer for dietetic assessment if the patient is losing weight (faltering growth in children).
- Patients with ME/CFS may be at risk of vitamin D deficiency.
- Insufficient evidence for routine vitamin and mineral supplementation.
- Rest and sleep:
- relaxation techniques prior to rest period could be helpful.
- Orthostatic intolerance (OI):
- Medicine should only be prescribed/overseen by someone with expertise in OI.
- Refer to secondary care if symptoms are severe or worsening.
- Pain:
- Refer to:
- NICE guideline on neuropathic pain in adults.
- NICE guideline on headaches in over 12s.
- Nausea:
- Encourage adequate fluid intake and eating small amounts often.
- Psychological support:
- Offer cognitive behavioural therapy (CBT) to improve well-being, quality of life, functioning and psychological distress.
- Explain that offering CBT does not indicate 'abnormal' beliefs and behaviours are underlying causes.
Refer to:
- NICE guideline on multimorbidity.
- NICE guideline on thyroid disease.
- NICE guideline on coeliac disease.
- NICE guideline on depression in adults.
- NICE guideline on depression in adults with a chronic physical health problem.
- NICE guideline on depression in children and young people.
- NICE guideline on generalised anxiety disorder and panic disorder in adults.
- NICE guideline on common mental health problems.
- Patients with ME/CFS may be more intolerant to medication and have more severe adverse effects.
- Consider:
- starting at a lower dose and
- gradually increasing the dose.
- Drug treatment for children should only be started under guidance from a paediatrician.
- Respond to flares promptly by:
- identifying possible triggers,
- temporarily reducing activity, and
- monitoring as some flares develop into a relapse.
- For relapse:
- review the management plan,
- reduce/stop some activities,
- increase rest periods, and
- re-establish new energy envelope.
References
References