By Georgia Roberts
BBC Scotland Westminster correspondent
Article Extracts
Services for people with ME are at “rock bottom” after the death of Scotland's only specialist nurse, campaigners have warned.
Myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS), causes extreme tiredness.
The charity ME Action says Scotland now only has “pockets of provision” based on “outdated” models of care.
The Scottish government says it is committed to creating a more equitable service for those with ME/CFS.
Keith Anderson had been Scotland's only specialist ME nurse, based in Fife. The service has been paused since he died last year.
Karima Rahman, from ME Action, said Mr Anderson's death had left Scotland without any specialist doctors or consultants.
She said there were just “pockets of provision” that were based on “outdated models that don't meet the standard of care and treatment that patients should have access to”.
‘Failure of duty'
Dr Charles Shepherd, an expert on the condition who also works with the ME Association, said the number of specialist practitioners in Scotland had steadily declined over the years.
He said the death of Mr Anderson had left provision “at rock bottom”.
“The ME Association receives regular reports from people in Scotland who are unable to be referred by their GP to a specialist ME/CFS service where they or their GP can obtain with help with diagnosis or management. This represents a serious failure of duty by NHS Scotland to provide specialist help for people with ME/CFS.”
Dr Charles Shepherd
He said GPs were being relied upon more heavily in Scotland than in England, where there are 57 clinics which follow National Institute for Health and Care Excellence (NICE) guidelines on referral and diagnosis.
In 2022, a Scottish government report acknowledged that “despite a growing recognition of the need for specialist ME/CFS services, actual implementation has been minimal”.
The government said it was considering a recent analysis of provision across Scotland and was committed to creating a more equitable service.
‘Valuable' service
NHS Lothian says it was operating within the NICE guidelines, with a team of psychologists, physiotherapists and occupational therapists on site. NHS Glasgow and Greater Clyde did not respond to a request for comment.
Other Scottish NHS boards told the BBC they offered a range of primary care services, holistic and psychological support – but had no plans to introduce specialist services.
Dr Gregor Purdie, a retired ME specialist physician, said there was a lack of specialist training across the UK.
He said a historical perception that the condition had a psychological rather than a physiological basis had led to many doctors “shying away” from it.
This led to “a dearth of support and interest by the medical profession and health services in general”, he said.
“We need to train clinicians that have a specific interest in ME/CFS.”
Dr George Purdie
NHS Fife said it did not intend to close the service, but could not say when a replacement would be hired given the shortage of specialists across the UK.