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Chronic Fatigue Syndrome/Myalgic Encephalomyelitis


Adults and Children


Post-viral fatigue following coronavirus infection
 
Please see the following articles for up-to-date information on the identification and management of post-viral fatigue and post-viral fatigue syndrome in the context of the coronavirus pandemic:
 


BACME, Post Viral Fatigue, A Guide To Management - May 2020


General points

  • CFS/ME is a relatively common condition (population prevalence 2-4 per 1000, NICE)
  • It comprises a wide range of symptoms including fatigue, malaise, headaches, sleep disturbances, difficulties with concentration and muscle pain
  • It is characterised by debilitating fatigue that is unlike everyday fatigue and can be triggered by minimal activity
  • It can follow a relapsing and remitting course
  • Diagnosis is clinical with exclusion of a wide differential diagnosis
  • Mildly affected patients might be managed in primary care – a close doctor-patient relationship is key
  • Those moderately to severely affected need specialist input
  • Management is multi-disciplinary

The service

Cornwall and Isles of Scilly Adult and Children’s Specialist Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Service

Inclusion criteria for referral

Consider referral if all the following criteria are met:

  • Patient registered with a GP in Cornwall & IOS area
  • Age > 16 can be referred direct to service*
  • History, examination and investigations don't suggest an alternative differential diagnosis
  • Symptoms are significantly limiting the activities of daily living/education/work
  • Symptoms have persisted for 4 months age > 16 OR 3 months age < 16 OR re-occurrence of life altering symptoms in previously known and diagnosed patient
  • All 4 major and at least one minor criteria satisfied (see below)

* Age < 16 must be referred to a Paediatrician first (RCHT or Derriford as appropriate)

Exclusion criteria

Please note the service do not accept referrals for:

  • Patients aged < 16 must be under the care of a Paediatrician
  • Benefits applications - refer to DIAL@disabilitycornwall.org.ukor 01736 79500
  • Chronic widespread pain in absence of fatigue or other symptoms
  • Equipment only – consider patient self-referral to 0300 1234131
  • The service is currently not commissioned to see patients with fibromyalgic pain only OR fatigue associated with other medical conditions, e.g. MS/cancer

 

Symptoms suggestive of CFS/ME

Consider CFS/ME if a patient has all 4 major and at least one minor criteria as described below:

Major Criteriafatigue with all 4 of the following features:

  1. New or had a specific onset
  2. Persistent and/or recurrent
  3. Unexplained by other conditions
  4. 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)
 

Minor CriteriaAND at least 1 of the following symptoms:

  • 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
  • Headaches
  • Painful lymph nodes without pathological enlargement
  • 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 work-up prior to referral

Investigations

  • Urinalysis
  • FBC U&E LFT BONE TFT HBA1C CRP CK
  • Coeliac testing if sufficient indication
  • Ferritin (if age < 25)
  • Only perform further investigations if clinical picture raises an alternative diagnosis that needs excluding

Management

  • Mediation for nausea and pain
  • Sleep hygiene advice – discourage daytime sleeping and naps
  • Encourage a good daily routine with frequent rest periods
  • Encourage a normal healthy diet with regular meals
  • Education and employment support – in mild CFS/ME the emphasis is on encouraging continuation of regular work/school (if missing significant amounts of time off work/school, consider early referral)

Specialist services available

  • Diagnostic opinion if diagnosis uncertain or complex co-morbidities
  • Medical assessment and medication management
  • Occupational and education liaison
  • Evidence based therapeutic interventions, e.g. graded exercise therapy (GET), graded activity (GAT) and/or cognitive behavioural therapy (CBT), with approaches to managing activity, lifestyles, roles and responsibilities
  • Sleep, vestibular, anxiety, cognitive, pain, diet and fatigue management strategies, as well as specific neurological and sensory integration based rehabilitation
  • Psychological interventions for coping, adjusting and overcoming barriers to accessing treatment strategies
  • One to one, group work, local clinics and some domiciliary therapy appointments

Reference / further reading


Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. NICE clinical guidelines (CG53). August 2007.


Current team

Consultant physician:Dr Debbie Renwick

Speciality lead & Clinical Specialist Therapist:Carol Wilson

Psychologist:Dr Cristina Lopez Chertudi

OTs:Sophie Bellman, Tamsin Strickland, Dan Loftus & Craig Mewton

 

Date reviewed:           20 May 2020

Next review due:         20 May 2021

Sifter name:                Laura Vines

Version     4.0