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Chronic Fatigue/Myalgic Encephalomyelitis

 

 

General points

  • CFS/ME is a relatively common condition (prevalence 4 per 1000 in the UK(NICE))
  • It involves a complex range of symptoms involving autonomic, neuroendocrine, immune and neurological manifestations
  • It follows a relapsing remitting course
  • Diagnosis is clinical with exclusion of a wide differential diagnosis
  • Mildly affected patients might be managed in primary care – a close Dr patient relationship is key
  • Management is multi-disciplinary
  • Those moderately to severely affected need specialist input

 

Consider CFS / ME if a person has:

  • (MAJOR CRITERIA) - fatigue with all of the following features:
    1. New or had a specific onset (that is, it is not life long)
    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 at least 24 hours, with slow recovery over several days)

and

  • (MINOR CRITERIA) - one or more 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.

 

Then…

Do an initial assessment

  • Take a full history (including exacerbating and alleviating factors, sleep disturbance, intercurrent stressors).
  • Examine the person
  • Assess their psychological wellbeing

 

Consider differential diagnosis (not exhaustive)

  • Neurological conditions - MS, Parkinson’s, dementia, MND, myasthenia gravis
  • Endocrine – Hypo / hyperthyroidism, DM, Addison’s, Cushing’s
  • Rheumatological – PMR, fibromyalgia, connective tissue disease, inflammatory arthritis, polymyositis
  • Primary psychological illness
  • Metabolic – Iron deficiency / overload, B12 deficiency
  • Infective – HIV, Lyme disease, hepatitis, TB
  • Haematological – Anaemia, B12 deficiency, leukaemia / lymphoma
  • Other – Sleep disorders e.g. OSA, malignancy, renal disease, liver disease

 

Perform investigations

  • Urinalysis
  • FBC UE LFT BONE TFT GLUCOSE CRP ESR CK coeliac
  • Ferritin (if age < 25)
  • Only perform further investigations if history / examination / investigations suggest so
  • Consider seeking specialist advice if investigations abnormal

 

Make the provisional diagnosis of CFS / ME if

  • No other diagnosis apparent and
  • Adults age > 18: symptoms > 4 months
  • Age 16-18: symptoms > 3 months

 

Reconsider the diagnosis if the person has no:

  • Post-exertional fatigue or malaise
  • Cognitive difficulties
  • Sleep disturbance
  • Chronic pain

 


Severity assessment:

  • Mild– mobile, self-caring and can do light domestic task with difficulty.  The majority will still be working, however, in order to remain in work they will have stopped all leisure and social purists and often be taking days off.  Most will use the weekend to rest in order to cope with the week.
  • Moderate– have reduced mobility and are restricted in all activities of daily living, often having peaks and toughs of ability, dependent on the degree of symptoms. They have usually stopped or lost work and require rest periods, often sleeping in the afternoon for more than one to two hours. Sleep quality at night is generally poor and disturbed.
  • Severe– Will be able to carry out minimal daily tasks only with basic face washing or teeth cleaning performed.  Be often unable to attend to domestic tasks.   Have severe and noted cognitive difficulties, with restricted mobility and needing a wheelchair if longer distances required.  They are often prone to physical collapse and leave the house on rare occasions often with severe prolonged after-effect from effort
  • Very Severe– will be unable to mobilise or carry our any daily tasks for themselves and are in bed for the majority of the time.  They can be totally noise and light sensitive and prefer darkened rooms

 

General principles of care:

  • Shared decision making between patient and health professional
  • Support and information

 

Primary care management:

  • Symptom management: treat symptoms such as nausea and pain as you would normally. If unable to control in primary care, consider referral
  • Sleep hygiene measures: discourage daytime sleeping and naps
  • Encourage a good daily routine with frequent rest periods
  • Paced and graded activity
  • 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)

 

WHEN / WHO TO REFER:

Please refer if:

  • Age > 16 AND
  • All 4 major and at least one minor criteria satisfied AND
  • History and examination and investigations don’t suggest an alternative differential diagnosis

AND

  • Symptoms are of moderate, severe or very severe presentation  (mild presentations may well best be treated in primary care in first instance)

AND

  • Have existed for 4 months age > 18 OR 3 months in age 16-18

OR

There is a re-occurrence of moderate, severe or very severe symptoms in previously known and diagnosed patient

 

How to refer

The CFS/ME service has very limited capacity hence it is crucial to get the most appropriate patients referred

The service is predominantly OT led and has limited doctor sessions hence it is particularly important that medical work up is accurate and complete prior to referral.

Please send a choose and book referral to the RMS and ensure the following subjects are covered:

  1. A detailed summary of the patient’s narrative and their functional impairment AND
  2. Confirm the patient has all 4 major and at least one minor criteria AND
  3. The referring GP has performed full history, examination and investigations to exclude the differential diagnosis and the results are attached AND
  4. Symptoms are of moderate, severe or very severe nature AND
  5. Symptoms have existed for at least 4 months age > 18 or at least 3 months age 16-18 AND
  6. Any relevant specialist reports/letters are attached

OR

There is a re-occurrence of moderate, severe or very severe symptoms in previously known and diagnosed patient. Please give details.

ALSO

1. What outcomes are sought from this referral?

  • Medical assessment for diagnostic uncertainty and complex medical symptom management AND / OR
  • Therapeutic interventions for symptom management and self-care strategies

2. Are there any referrals to other services pending? e.g. psychological or pain services? Please detail.

3. Are there any issues pertinent to the referral (eg self harm, communication difficulties, safety issues for clinicians, transport availability)?

 

The referral will pass through the RMS to the CFS/ME service at RCH for triage and appointment booking

N.B. there is a referral proforma here CFS/ME referral form  which is not obligatory but may be of use as an aide memoire

 

What we offer:

  • Secondary diagnostic opinion if diagnosis uncertain
  • Evidence based GAT/GET/CBT approaches to managing activity and lifestyles
  • Sleep, anxiety, GI symptom and pain management, with neurological or sensory based rehabilitation along with psychological interventions as one-to0one or groupwork sessions

 

Exclusions

  • Age < 16 (for under 16’s  refer to a paediatrician – see www.rcpch.ac.uk)
  • We are not able to accept referrals for those requiring Department of Work and Pension Applications or Support  letters only

 

Clinic details

  • The CFS/ME service has very limited capacity hence it is crucial to get the most appropriate patients referred
  • The service has limited doctor sessions hence medical work up needs to be accurate and complete prior to referral

 

Department contacts

  • Speciality Lead, Carol Wilson. 
  • Service Administrator, Sharon Risley. 01872 252935
  • Service Email: CFSME.RCHT@cornwall.nhs.uk

 

Patient information / support groups / links

  • Patient.co.uk information here
  • Local patient support groups

 

Further information links

www.actionforme.org.uk (series of information leaflets for adults re pacing etc)

www.a4me.org.uk (for younger people)

For paediatric information see here - www.rcpch.ac.uk

 

References / collaborators

 

[1] NICE Clinical Guideline 053 – Diagnosis and management of CFS/ME in adults and children, August 2007   www.nice.org.uk/CG053  Quick Reference Guide

 

[2] Personal communication with CFS/ME clinical lead Carol Wilson