ME/CFS Symptoms and diagnosis
Key symptoms that should all be present for a diagnosis of ME/CFS
Debilitating fatigue
Worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest
Post-exertional malaise
Activity causes worsening of symptoms and is often delayed in onset by hours or days, is disproportionate to the activity and has a prolonged recovery time that may last hours, days, weeks or longer.
Unrefreshing or disturbed sleep
Feeling exhausted, feeling flu-like and stiff on waking with broken or shallow sleep, altered sleep pattern or hypersomnia
Cognitive difficultiesÂ
May include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking (“Brain Fog”)
ME/CFS can be suspected if
The person has had ALL of the key symptoms above for a minimum of 6 weeks in adults and 4 weeks in children and young people
+
The person's ability to engage in occupational, educational, social or personal activities is significantly reduced from pre‑illness levels
+
Symptoms are not explained by another condition
Other common symptoms
- Orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position
- Temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
- Neuromuscular symptoms, including twitching and myoclonic jerks
- Flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
- Intolerance to alcohol, or to certain foods and chemicals
- Heightened sensory sensitivities, including to light, sound, touch, taste and smell
- Pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.
A diagnose of ME/CFS can be made in a child, young person or adult who has symptoms that have persisted for 3 months and are not explained by another condition.
REFERRAL TO ME/CFS SPECIALIST
Adults
Refer directly to an ME/CFS specialist team to confirm their diagnosis and develop a care and support plan
Children / Young people
After assessment and diagnosis of ME/CFS by a paediatrician refer directly to a paediatric ME/CFS specialist team to confirm their diagnosis and develop a care and support plan
Severity of ME/CFS
Definitions of severity are not clear cut because individual symptoms vary widely in severity and people may have some symptoms more severely than others. The definitions below provide a guide to the level of impact of symptoms on everyday functioning
MILD
People with mild ME/CFS care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often have reduced hours, take days off and use the weekend to cope with the rest of the week.
MODERATE
People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work or education, and need rest periods, often resting in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.
SEVERE
People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.
VERY SEVERE
People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
Source: The 2021 NICE Guideline on ME/CFS.