Specialist services are needed to treat myalgic encephalomyelitis (ME) in Scotland, according to a survey of hundreds of those living with the condition.
Also known as chronic fatigue syndrome, ME can have a wide range of symptoms including muscle fatigue, pain and neurological symptoms.
Healthcare Improvement Scotland have conducted a “gathering views” exercise where they heard from 561 people with experience of the condition.
Some reported problems including lengthy diagnosis, unnecessary tests and a lack of information about the condition, as well as simply not being believed.
Others had more positive experiences of diagnoses, support and care.
A report has now recommended developing new clinical guidance for diagnosis and treatment.
It also asks the Scottish Government to look into creating specialist services for those with ME.
Ruth Jays, Healthcare Improvement Scotland’s director of community engagement, said: “Hearing from people living with ME in Scotland and their experiences is crucial to improving the care they need.
“This gathering views report provides recommendations which, if implemented, will see the quality of many people’s lives improve.
“The responses we received have been submitted to the Scottish Government to help shape their work to establish what good care and support for people with ME looks like.”
Ministers have previously pledged more support for those with ME, with the issue being raised at Holyrood’s Public Petitions Committee in January 2019.
Catherine Calderwood, Scotland’s chief medical officer at the time, said almost half of the medical profession does not accept ME to be a real condition.
She added that the difficulty in diagnosis has proved to be a barrier in finding appropriate treatments.
The then-Health Secretary Jeane Freeman said: “To people living with ME – I believe you.
“I believe that this disease is a life-limiting disease in terms of the quality of your life, I hear what you are saying to us and your experience does matter to me.”