No one would deny that the illness embraced by the names myalgic encephalopathy (ME) and chronic fatigue syndrome (CFS) presents diagnostic and therapeutic difficulties, but few now deny the condition is real.
To deny its existence would go against expert opinion, and NICE recently produced an excellent clinical guideline.
A group practice of 10,000 patients is likely to have about 40 patients with ME/CFS, so most GPs would benefit from downloading the NICE quick reference guide.1
The name ME/CFS still promotes argument - mainly because there is no pathological evidence of the inflammation of the brain or spinal cord suggested by the term 'encephalopathy'.
There is no specific test for the condition, and the diagnosis is reached on clinical grounds, by identifying characteristic features and eliminating other possible causes of the patient's symptoms.
It is a process that takes time and empathy, and often specialist help is needed. Some of the main symptoms that may indicate ME/CFS are shown in the box on page 37, but this list is not exhaustive.
All patients with indicative symptoms should be investigated. These include FBC, LFT, U&Es, TFT, MSU, ESR, CRP, random glucose, serum creatinine and calcium, serum ferritin (children only), creatine kinase, and screening for gluten sensitivity.
Some tests are not indicated, and these include serum ferritin in adults, vitamin B12 or folate, serological testing (including for viral studies), auditory brain stem responses or electrodermal conductivity tests. The only exception is if there is a strong clinical indication that a specific related condition may be present.
If a diagnosis of ME/CFS is suspected, advice on managing symptoms should be given at the outset, and not delayed until referral or a definitive diagnosis. For children and young people, referral to a paediatrician should be made within six weeks of presentation. In other cases, if the symptoms of an apparently self-limiting condition do not resolve as expected, it is important to listen to the patient and the family, and consider referral to a specialist.
If symptoms are severe, the patient should be referred without delay.
A definitive diagnosis
In children, the diagnosis can be made if symptoms have persisted for four months (to be confirmed by a paediatrician). However the diagnosis must be reconsidered if the patient does not have post-exercise fatigue, cognitive difficulties, sleep disturbance or chronic pain.
For mild or moderate symptoms, referral may be considered if symptoms have not resolved after six months. Discuss referral with the patient, and continue primary care involvement after referral.
Shared decision making is the rule in all phases of care, with mutual agreement on the rate of progression. This involves establishing a supportive and collaborative relationship with the patient.
A patient with ME/CFS should be given realistic information about their condition at diagnosis, and a tone of cautious optimism is advised.
Most will improve over time and be able to resume a normal life, although some will relapse or remain housebound. The outlook is more optimistic in children and young people.
Antidepressants for low mood and NSAIDs and analgesia for pain may be required. Nausea is often a problem, but eating little and often and sipping fluids are preferable to using antiemetics. Exclusion diets are not recommended.
Help with sleep disturbance is important in management of function and quality of life. Advice on such things as sleep hygiene and introducing gradual changes in sleep patterns are useful.
Daytime sleeping and naps should be discouraged. Rest periods can be introduced into a routine, often limited to 30 minutes at a time alongside a gradual introduction of low level physical and cognitive activities.
Prolonged bed rest in severe ME/CFS carries obvious hazards and must involve specialist input. Specialist equipment may be needed, such as wheelchairs and blue badges. Interruptions to work and education are also important issues that require appropriate professional input.
Specific approaches include cognitive behavioural therapy, graded exercises and activity management. Pacing is a strategy that balances rest and acti-vity, but there is not enough research to confirm its value.
In severe cases, the use of SSRIs, tricyclic antidepressants and melatonin for mood and sleep disturbance should be considered by a specialist. Input may also be required from a pain clinic if pain is a predominant feature.
Setbacks and relapses are frequent, and patients must be prepared for these and included in any review of management strategies.
What not to do
People with ME/CFS should be advised not to take unsupervised vigorous exercise, as this may make symptoms worse.
They should also avoid treatment programmes from practitioners with no experience in the condition and certain drugs should not be used, including MAOIs, glucocorticoids and mineralocorticoids, dexamfetamine, methylphenidate, levothyroxine and antiviral agents.
Complementary therapies are not recommended, and there is insufficient evidence to justify the prescription of supplements such as vitamin B12, vitamin C, co-enzyme Q10, magnesium, nicotinamide adenine dinucleotide or multivitamins and minerals.
- Dr Barnard is a former GP in Fareham, Hampshire
|Symptoms suggestive of ME/CFS|
|Consider ME/CFS if a person has:|
- NICE. Guidance on chronic fatigue syndrome/mylagic encephalomyelitis (or encephalopathy). CG53. London, NICE, 2007. Available from www.nice.org.uk/nicemedia/pdf/CG53QuickRefGuide.pdf