Thousands of ME patients are demanding action to ring-fence £6million a year to treat them.
A charity supporting people with the condition is planning a protest outside the Scottish Parliament amid claims they are “stigmatised and neglected by medical and social services who turn a deaf ear to their plight”.
MEAction Scotland is calling for the sum to be spent every year on specialist medical care and treatment.
It is believed NHS Scotland has no ME specialists and just one ME nurse. It comes amid fears people
with long Covid could later be diagnosed with ME.
Keith Anderson, the only ME nurse in Scotland, said: “If investment in services had been made earlier, we would have reached out to over 25,000 people in Scotland with this condition.
“We would have been better prepared for the impact of long Covid illnesses, which will, in many cases, become permanent or progress to ME. I’m already treating many with long Covid.”
Myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), causes extreme tiredness and other symptoms.
Stuart Murdoch, of indie band Belle and Sebastian, developed ME in the late 80s. He said: “Waiting lists are at an all-time high but right at the back of the queue are people with ME/CFS.”
Janet Sylvester, a founder of MEAction Scotland said: “My daughter, Emma, has been ill for 10 years. Many have been ill for much longer.
We are calling on the Scottish Government to provide services and funding for research to give hope to those who have been ignored and stigmatised so long.” MSPs have pledged support for the call for funding for ME services and will sign a pledge at the event.
The Scottish Government said: “Our Neurological Care and Support Framework 2020-25 sets out our vision to ensure everyone with a neurological condition, including ME/CFS, can access the care and support they need.
"This is backed by £4.5million of funding.”
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