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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

 

Adults and Children


General points

  • ME/CFS is a relatively common condition. It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.
  • It comprises a wide range of symptoms including fatigue, post-exertional 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 and often follows 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 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Service

 

Inclusion criteria for referral

Consider referral if all the following criteria are met:

  • Patient registered with a GP in Cornwall & IOS area
  • Age > 16y can be referred direct to service
  • Age < 16y must be referred to Paediatrician first
  • All 4 major criteria*are present (see box below) and have persisted for a minimum of 6wks in adults (> 16y) OR 4wks in children (< 16y) OR re-occurrence of life-altering symptoms in previously known and diagnosed patient
  • The person’s ability to engage in occupational, social or personal activities is significantly reduced from pre-illness levels
  • History, examination and investigations don't suggest an alternative differential diagnosis

 

If missing significant amounts of time off work/school, consider early referral, documenting this in your referral letter.

 

 

Exclusion criteria

Please note the service do not accept referrals for:

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


 

Be aware that the following symptoms may be associated with, but are not exclusive to, ME/CFS:

  • Orthostatic intolerance and autonomic dysfunction - dizziness, palpitations, fainting, nausea, on standing or sitting upright from a reclining position
  • Temperature hypersensitivity - profuse sweating, chills, hot flushes, or feeling very cold
  • Neuromuscular symptoms - twitching and myoclonic jerks
  • Flu-like symptoms - sore throat, tender glands, nausea, chills or muscle aches
  • Intolerance to alcohol, or to certain foods and chemicals
  • Heightened sensory sensitivities - to light, sound, touch, taste and smell
  • Pain - pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion

 

Primary care work-up prior to referral


Investigations (within 3m of referral)

Do

  • Urinalysis
  • FBC (with differential count) CRP LFT U&E BONE TFT CK
  • Random glucose and HbA1c
  • Thyroid peroxidase antibodies if TFT abnormal
  • Coeliac testing
  • Ferritin (if age < 25)

 

Don’t routinely check (unless clinically indicated)

  • Ferritin (in adults)
  • Vitamin B12, Folate
  • Vitamin D
  • 9am cortisol
  • HBV HCV HIV EBV CMV
  • TB
  • Lyme disease
  • Toxoplasmosis

 

Management


Advise patients:

  • Not to use more energy than they perceive they have - they should manage their daily activity and not ‘push through’ their symptoms
  • To avoid taking daytime naps
  • To rest and convalesce as needed. In mild ME/CFS the emphasis is on encouraging continuation of regular work/school, but this might mean making changes to their daily routine including work, school and other activities
  • To maintain a healthy balanced diet, with adequate fluid intake

 

Consider prescribing:

  • Analgesia and anti-sickness as required

 

 

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 activity management and/or thought reframing strategies, 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 rehabilitation
  • Psychological interventions for coping, adjusting and overcoming barriers to accessing treatment strategies
  • Virtual one-to-one and group work, local face-to-face clinics and some domiciliary therapy appointments as clinically indicated.

 

 

References
Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NICE clinical guidelines (NG206). October 2021.

 

Current team

Specialty Medic:                                             Dr Dmitry Pshezhetskiy

Psychologist:                                                  Dr Alicia Ray

Specialist OTs:                                               Sophie Bellman, Tamsin Stickland, Craig Mewton, Dan Loftus

Specialist Nurse:                                            Sarah Dowrick 

Speciality Lead & Advanced Practitioner:    Carol Wilson

 

Review Date                         2nd November 2023

Next Review Date                 2nd November 2024

GP Sifter                               Dr Laura Vines

Contributors                          Dr Dmitry Pshezhetskiy

                                              Carol Wilson

Version                                  6.0