Chronic Fatigue/Myalgic Encephalomyelitis
Cornwall and Isles of Scilly Adult and Children’s Specialist Chronic fatigue/Myalgic Encephalomyelitis Service
We do not accept referrals for Benefits applications - refer to DIAL@disabilitycornwall.org.uk 0173679500
Or referrals for chronic widespread pain in absence of fatigue or other symptoms.
Or equipment only – consider patient self -referral to 0300 1234131
Patients 16 and under must be under the care of a Paediatrician.
- Consider referral if all the following criteria are met:
- Patient registered with a GP in Cornwall & IOS area.
- Age > 16 to this service
- If <16 refer to paediatrician first. RCHT or Deffiford as appropriate.
- History and examination and investigations don’t suggest an alternative differential diagnosis
- Symptoms are limiting the activities of daily living/education/work significantly
- Symptoms have existed for 4 months age over 16 OR 3 months in under 16 OR re-occurrence of life altering symptoms in previously known and diagnosed patient
- All 4 major and at least one minor criteria below satisfied:
- FATIGUE WITH ALL 4 OF THE FOLLOWING FEATURES:
- OF NEW OR HAD A SPECIFIC ONSET
- PERSISTENT AND/OR RECURRENT
- UNEXPLAINED BY OTHER CONDITIONS
- HAS RESULTED IN A SUBSTANTIAL REDUCTION IN ACTIVITY LEVEL CHARACTERISED BY POST-EXERTIONAL MALAISE AND/OR FATIGUE (TYPICALLY DELAYED, FOR EXAMPLE BY 24 HOURS, WITH SLOW RECOVERY OVER SEVERAL DAYS OR LONGER)
- Difficulty with sleeping, such as insomnia, hypersomnia, unrefreshing sleep, a disturbed sleep–wake cycle
- Muscle and/or joint pain that is multi-site and without evidence of inflammation
- Painful lymph nodes
- Sore throat
- Cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing
- Physical or mental exertion makes symptoms worse
- General malaise or ‘flu-like’ symptoms
- Dizziness and/or nausea
- Palpitations in the absence of identified cardiac pathology.
- Sensitivities to light, noise, motion, foods.
Primary care management prior to referral:
- Mediation management for nausea and pain
- Sleep hygiene measures: discourage daytime sleeping and naps
- Encourage a good daily routine with frequent rest periods
- Diet: encourage normal healthy diet with regular meals
- Education and employment support: in mild CFS/ME the emphasis is on encouraging continuation of regular work (if missing significant amounts of time off work/school, consider early referral)
Investigations prior to referral
- FBC UE LFT BONE TFT GLUCOSE CRP with ES, CK, test for inflammation and myalgia
- Coeliac testing if sufficient indication
- Ferritin (if age < 25)
- Only perform further investigations if clinical picture raises an alternative diagnosis that needs excluding
- Diagnostic opinion if diagnosis uncertain or complex co morbidities
- Medical assessment and medication management
- Occupational and education liaison.
- Evidence based therapeutic interventions, eg: GAT/GET/CBT approaches to managing activity and lifestyles, roles and responsibilities.
- Sleep, vestibular, anxiety, cognitive, pain, diet and fatigue management strategies. Plus specific neurological and sensory integration based rehabilitation.
- Psychological interventions for coping, adjustment and overcoming barriers to accessing treatment strategies.
- One to one, group work, local clinics and some domiciliary therapy appointment.
Dr EJ Thacker
Dr Cristina Lopez Chertudi
Mel Terry, Cathy Jackson and Debby Ried.