Chronic fatigue syndrome/myalgic encephalomyelitis (or
encephalopathy)
Scope of the guidance
This review covers the diagnosis and management of chronic
fatigue syndrome/myalgic encephalitis (CFS/ME) in adults and
children. It is based on the clinical guideline Chronic fatigue
syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis
and management of CFS/ME in adults and children published by
the National Institute of Health and Clinical Excellence (NICE).
This guideline provides practical recommendations that can help you
to manage the patient’s condition and hopefully maintain and if
possible extend their physical, emotional and cognitive
capacity.
Sources
National Institute for Health and Clinical
Excellence. Chronic fatigue syndrome/myalgic encephalomyelitis
(or encephalopathy): diagnosis and management of CFS/ME in adults
and children. NICE Clinical Guidelines 53. London: NICE
2007
www.nice.org.uk/nicemedia/pdf/CG53NICEGuideline.pdf
Baker R, Shaw EJ. Diagnosis and management
of chronic fatigue syndrome or myalgic encephalomyelitis (or
encephalopathy): summary of NICE guidance. BMJ 2007; 335:
446
www.bmj.com/cgi/content/extract/335/7617/446
NHS Centre for Reviews and Dissemination. The treatment and
management of chronic fatigue syndrome/ myalgic encephalomyelitis
in adults and children. Report 35. CRD.
www.crd.york.ac.uk/crdweb/ShowRecord.asp?View=Full&ID=32007000365%20
Key Points
1. Incidence
- Chronic fatigue syndrome (CFS)/ myalgic encephalomyelitis (ME)
is a relatively common illness.
- A general practice with 10,000 patients is likely to have up to
40 patients with this condition.
- The syndrome is characterised by a range of symptoms: fatigue,
malaise, headaches, sleep disturbance, difficulties with
concentration and muscle pain. The pattern and intensity of
symptoms varies between people, and during the course of each
person’s illness.
- People often have symptoms for many years before the diagnosis
is made.
2. Key elements of management
- Working in partnership with the
person with CFS/ME
- Early management and
identification of symptoms
- Accurate diagnosis and
consideration of alternative diagnoses
- Engagement with the family is
particularly important for children and young people
- Diagnostic and therapeutic
options should be suitable for the individual. This may include
providing domiciliary services (including specialist assessment) or
methods such as telephone or email.
3. Making a diagnosis
Consider CFS/ME if the fatigue is:
- new or of specific onset
- persistent and/or
recurrent
- unexplained by other
conditions
- leading to a substantial
reduction in activity level
- characterised by post-exertional
malaise
and/or together with one or more of the
following symptoms:
- difficulty with sleep – insomnia, hypersomnia,
un-refreshing sleep or a disturbed sleep-wake cycle
- muscle and/or joint pain without evidence of inflammation
- headaches
- cognitive dysfunction
- influenza-like symptoms or general malaise
- sore throat
- painful lymph nodes without pathological enlargement
- nausea and/or dizziness
- palpitations without identified cardiac pathology
- worsening of symptoms with physical or mental
exertion
Additional symptoms that might indicate
another serious illness include:
- significant weight
loss
- clinically significant
lymphadenopathy
- localising or focal
neurological signs
- features of inflammatory
arthritis
- connective tissue disease
or cardiorespiratory disease
- sleep apnoea
Don’t wait to give advice about symptoms
management until a diagnosis is established. Try to minimise the
impact of symptoms on daily life and activities.
The diagnosis of CFS/ME should be made after
other possible diagnoses have been excluded and the symptoms have
persisted for:
- 4 months in an
adult
- 3 months in a child or
young person – and the diagnosis should be made or confirmed by a
paediatrician.
4. Investigations
CFS/ME is diagnosed clinically as insufficient
evidence exists for routine use of diagnostic tests. Tests such as
the head-up tilt test, auditory brainstem responses, and
electrodermal conductivity are only used only research
settings.
Organise investigations to exclude other
diagnoses:
- analysis of urine for protein,
blood and glucose
- blood count and erythrocyte
sedimentation rate or plasma viscosity
- C-reactive protein
- creatine kinase
- serum urea, creatinine,
electrolytes and calcium
- random blood glucose
- liver and thyroid function
- blood tests for gluten
sensitivity (endomysial antibody assay)
- serum ferritin - only for
children and young people.
5. Management
- Manage symptoms in standard ways
- Sleep management – encourage
normal sleep pattern
- Rest periods – advise on
limited rest periods
- Relaxation techniques
- During a setback or relapse
with increased symptoms, advise patients to maintain physical
activity if possible.
- Pharmacological treatments such
as antidepressants, steroids, thyroxine in euthyroid patients are
not recommended.
- Advise patients to maintain a
well balanced diet. Dietary supplements including vitamins and
minerals are not recommended. Neither is there evidence of benefits
from complementary therapies but patients may wish to try these for
symptom control as part of self management..
- Advise on fitness for work and
pursuing education; recommend flexible adjustments or adaptations
to work or studies for return to these when the patient is ready
and fit enough.
- Consider referral to a
specialist on the basis of the person's needs and symptoms –
children should be referred as should adults with severe
symptoms.
- Maintain cautious optimism – most
patients will recover in time; prognosis is better in the
young.
6. Specialist
care
- Cognitive behaviour therapy may benefit people with mild or
moderate CFS/ME.
- Graded exercise therapy has been shown to effectively improve
fatigue and physical functioning
- Diagnosis, investigation, management and monitoring of people
with severe CFS/ME should be supervised or supported by a
specialist in the condition.
Practical
tips for the busy GP >>
EGP 1. May 2008