Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a complex, long-term condition that significantly impacts many aspects of life. In the UK alone, approximately 390,000 people live with ME/CFS, including around 25% who are severely affected – often housebound or unable to work.
The NHS, NICE, government agencies, and patient advocates increasingly recognise the condition as neurological and biological, yet it remains under‑researched, misunderstood, and under‑supported.
Signs and symptoms of ME
ME/CFS typically manifests through various overlapping core symptoms:
- Persistent, debilitating fatigue
A profound exhaustion that lasts for at least 3 months, is not relieved by rest, and severely disrupts daily life.
- Post‑exertional malaise (PEM)
A hallmark feature, PEM is the worsening of symptoms after minimal physical or mental activity. It may kick in 12–48 hours after exertion, last for days or even weeks, and be “disproportionate to the activity”.
- Cognitive problems (“brain fog”)
Difficulty with concentration, memory, and processing information, which significantly affects daily tasks.
- Sleep issues
Unrefreshed sleep, insomnia, disturbed sleep patterns, or hypersomnia – common and often severe.
- Additional symptoms
Other frequent but individual symptoms include muscle/joint pain, headaches, sore throat, swollen lymph glands, dizziness (especially on standing), and sensitivities to light and sound. In severe cases, patients may become bed or housebound, lose the ability to speak or swallow, and suffer extreme sensory sensitivities.
How patients are diagnosed
- Clinical assessment and history
There’s no definitive test for ME/CFS – diagnosis is based on clinical evaluation. A GP will:
- Take a detailed medical history, including symptom onset, especially following infections such as COVID‑19.
- Perform a physical examination.
- Order routine blood/urine tests (to exclude conditions like anaemia, thyroid, liver, kidney issues).
- Symptom duration and criteria
According to NICE (2021), most patients can be diagnosed after 3 months of persistent symptoms (previous guidelines often required 6 months).
For an ME/CFS diagnosis, patients must display:
- Extreme fatigue
- PEM
- Unrefreshing sleep
- Cognitive issues – with symptoms unexplained by other diagnoses
- Excluding other conditions
Doctors rule out alternative diagnoses – examples include:
- Anaemia
- Thyroid disorders
- Diabetes
- Autoimmune conditions
- Mental health issues
- Referral to specialist teams
GPs can offer a provisional or working diagnosis and initiate early care. After confirming the diagnosis – or if symptoms are severe – patients should be referred to specialist ME/CFS teams, ideally with a named clinician overseeing their care.
Treatment and management
There is no cure, but supportive and tailored interventions can help significantly:
✔ Energy management (“pacing”)
The most widely recommended and evidence-backed strategy. It teaches patients to balance activity with rest, stay within their energy limits, and avoid PEM. Pacing often gives better outcomes than conventional graded exercise.
✖ Graded exercise therapy (GET)
Once widely endorsed, GET is now not recommended by NICE (2021). It may worsen symptoms for many patients.
➕ Cognitive Behavioural Therapy (CBT)
CBT is no longer seen as a direct treatment for ME/CFS, but may help some patients cope with the psychological and emotional impacts of living with a chronic illness.
🩺 Symptom relief
- Painkillers: Over the counter options for headaches/muscle pain; prescription analgesics for severe symptoms.
- Sleep management: Sleep hygiene techniques or medication for insomnia.
- Support for co‑occurring conditions: e.g. migraines, mental health issues, IBS.
🏥 Multidisciplinary specialist care
Access to a named clinician within an experienced ME/CFS team is advised. These teams coordinate care across disciplines like physiotherapy, occupational therapy, psychology, and pain clinics.
New government support plan
On 22nd July 2025, the UK government released a new action plan for ME/CFS care in England, which includes:
- Training for NHS professionals to improve awareness, reduce stigma, and encourage early diagnosis of ME/CFS.
- Localised care: Community-based services via the 10‑Year Health Plan’s “neighbourhood health services”, to help patients access specialist care closer to home.
- Research investment: Expanded funding aimed at better understanding causes, improving treatments, and dispelling stigma.
- Employment and benefits support: Reforming assessments to better support those severely affected in work and daily life.
This plan builds on NICE’s transformative 2021 guidance and is a major step toward bridging gaps in services and awareness across the NHS.
Living with ME/CFS
- Keep an illness diary: Logging energy levels, symptoms, triggers, and PEM is valuable for managing your condition and sharing patterns with your GP or specialist.
- Pace yourself: Prioritise rest and avoid trying to “push through.” Small, planned activity boosts can backfire without proper pacing.
- Improve sleep: Adopt consistent sleep routines, avoid screens before bedtime, and consider relaxation techniques or therapies.
- Seek psychological support: CBT, peer groups, or counselling may help with emotional distress or anxiety that often coexists.
- Connect with charities: Organisations such as Action for ME offer peer support, practical advice, benefits guidance, and opportunities to influence policy.
For severe ME/CFS
Approximately 25% of people with ME/CFS are severely affected – either bed or housebound. These individuals may be unable to speak, swallow, or be mobile, and may require:
- Home visits by specialist teams, occupational therapy, social care.
- Nutritional support and sometimes involvement of feeding specialists.
- Coordination across healthcare providers, including mental health and community care.
The recent government strategy emphasises providing this care “closer to home” to avoid neglecting those with the most intense needs.
In summary
ME/CFS is a serious, often misunderstood condition with core symptoms of fatigue, PEM, cognitive challenges, and disrupted sleep. It affects hundreds of thousands across the UK; many severely. Diagnosis hinges on clinical evaluation and ruling out other causes. Treatment focuses on pacing, symptom relief, psychological support, and specialist multidisciplinary care.
The July 2025 ME support plan marks a milestone: improved training, neighbourhood-level care, research funding, and better benefits/employment support. While there is still no cure, this strategy offers meaningful hope for those affected.
If you suspect ME/CFS, speak with your GP about symptom tracking, pacing strategies, and a potential referral to specialists. Help is becoming more accessible, and you’re not alone.
