ME/CFS should be suspected, if a person has had all of the 4 key symptoms for a minimum of 6 weeks in adults and 4 weeks in children and young people
Diagnose ME/CFS in a child, young person or adult who has symptoms that have persisted for 3 months and are not explained by another condition.
Refer adults directly to an ME/CFS specialist team to confirm their diagnosis and develop a care and support plan.
See Illness Severity definitions below
Suspect ME/CFS if:
- a person has had all of the 4 key symptoms below for a minimum of 6 weeks in adults and 4 weeks in children and young people and,
- the person's ability to engage in occupational, educational, social, or personal activities and is significantly reduced from pre-illness levels and,
- symptoms are not explained by another condition.
All of the following 4 symptoms should be present:
- Debilitating fatigue that is worsened by activity,
- Post exertional malaise/symptom exacerbation,
- Unrefreshing sleep and/or sleep disturbance,
- Cognitive dysfunction.
Other symptoms that may be present include:
- 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.
Investigations to exclude other diagnoses:
- urinalysis for protein, blood, and glucose,
- full blood count,
- urea and electrolytes,
- liver function,
- thyroid function,
- erythrocyte sedimentation rate or plasma viscosity,
- C-reactive protein,
- calcium and phosphate,
- serum ferritin,
- coeliac disease screening,
- creatine kinase.
Doctors should use their clinical judgement to decide on additional investigations to exclude other diagnoses (for example, vitamin D, vitamin B12 and folate levels; serological tests if there is a history of infection; and 9am cortisol for adrenal insufficiency).
Advice for people with suspected ME/CFS
When ME/CFS is suspected, give people personalised advice about managing their symptoms. Also advise them:
- not to use more energy than they perceive they have − they should manage their daily activity and not ‘push through' their symptoms,
- to rest and convalesce as needed – this might mean making changes to their daily routine, including work, school, and other activities.
Explain to people with suspected ME/CFS that their diagnosis can only be confirmed after 3 months of persistent symptoms.
Reassure them that they can return for a review before that if they develop new or worsened symptoms and ensure that they know who to contact for advice.
- Diagnose ME/CFS in a child, young person or adult who has the above 4 symptoms where they have persisted for 3 months and are not explained by another condition.
- Primary healthcare professionals should consider seeking advice from an appropriate specialist if there is uncertainty about interpreting signs and symptoms at 3 months and whether further investigations are needed.
- Refer adults directly to an ME/CFS specialist team to confirm their diagnosis and develop a care and support plan.
- Refer children and young people who have been diagnosed with ME/CFS after assessment by a paediatrician directly to a paediatric ME/CFS specialist team to confirm their diagnosis and develop a care and support plan.
ME/CFS Specialist Team
Specialist teams consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS.
- They commonly have medically trained clinicians from a variety of specialisms (including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, immunology, general practice and paediatrics) as well as access to other healthcare professionals specialising in ME/CFS.
- These may include physiotherapists, exercise physiologists, occupational therapists, dietitians, and clinical or counselling psychologists.
ME/CFS Illness Severity Definitions
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.
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.
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.
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
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