Author’s note: In response to a request from WAMES, this is a letter that I have just sent to the Western Mail regarding some controversial comments that have recently been made about ME by a local neurologist.
In his letter (dated 21 April) Dr Trevor Pickersgill says that the
Chief Medical Officer’s report did not conclude that ME (myalgic
encephalopathy/encephalomyelitis) was a neurological disease. As a
member of the Working Group that prepared this report could I point
out that we are not asked to come to any conclusions about precise
causation as this is a multisystem illness where abnormalities have
been reported in various body systems (brain, hormonal and
immunological in particular). Our report was principally concerned
with the diagnostic assessment and management of these patients.
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As far as classification is concerned, the World Health Organisation
does now include ME as a neurological disorder in section G93.3 of
ICD10 (International Classification of Diseases, number 10) as do many neurologist colleagues of mine. And contrary to what Dr Pickersgill had to say about no abnormalities being found with complex neurological investigations, significant abnormalities in brain function have been published in the scientific literature, in
particular in a key area known as the brain stem (reference: Brainstem perfusion is impaired in patients with myalgicencephalomyelitis/chronic fatigue syndrome. Quarterly Journal of Medicine, 1995, 88, 767 – 783).
When it comes to treatment, my experience is that drugs such as
paracetamol are seldom adequate for the type of pain which some people with ME experience, and the CMO report gave cautious recommendation to other types of drugs which are used in the management of neurological pain (eg gabapentin/Neurontin).
Dr Pickersgill also recommends graded exercise therapy (GET) – a controversial form of treatment whereby patients are encouraged to increase their activity levels even though this may be exacerbating their symptoms. However, feedback from ME patients in the CMO report indicated that around 50% found that GET had actually made them feel worse. So most doctors prefer to recommend an approach known as pacing where increases in activity are much more gradual and flexible.
Dr Charles Shepherd