Scotland’s health secretary Jeane Freeman has told ME sufferers their experiences matter to her.
Ms Freeman addressed the Public Petitions Committee at the Scottish Parliament on Thursday as it considered a petition calling for a review of the level of support available to people with the condition.
Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), can have a wide range of symptoms including muscle fatigue, pain and neurological symptoms.
According to Scotland’s chief medical officer Catherine Calderwood, however, almost half of the medical profession does not accept ME to be a real condition.
It is defined by the World Health Organisation (WHO) as being neurological but doubts have been raised by practitioners due to the difficulty in diagnosing it.
Ms 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.
“In order to make progress, we have to recognise the position we’re starting from and that is one where there is clearly a lack of evidence, both around what causes ME and from that, how to treat ME.
“We need more research into this condition. The only way to build an evidence base which can inform treatment options and the development of service is by enhancing the research base.”
Ms Freeman said the Scottish Government has been developing a national action plan on neurological conditions over the past 18 months, working with partners and stakeholders including patients, carers and families.
The health secretary said that it is part of a “wide-ranging” five-year plan that has been welcomed by the neurological community in Scotland.
Committee convener Scottish Labour MSP Johann Lamont, said: “This is a condition that I was aware of 30 years ago.
“There was a lot of scepticism and probably very unhelpful commentary round about it in the 80s but I worked with one specific colleague who had the condition and it was absolutely evident to me that this was a significant problem.
“Do you have a view of why 30 years on they’re almost still at the point of proving that they exist?”
Dr Catherine Calderwood responded: “I first came across people with ME as a junior doctor in Glasgow where I did a regular clinic at Ruchill Hospital in Maryhill.
“It was very clear to me then that this was a condition that really was very debilitating.
“People are coming forward with a range of symptoms which is quite wide.
“The effect on a person’s life is also quite broad. So the symptoms can range from nausea, dizziness, extreme fatigue is always there which is not helped by any amount of sleep or rest, muscle pain, the inability to be able to perhaps have enough energy to get out of the house in extreme cases.”
Dr Calderwood said the difficulty in diagnosis has proved to be a barrier in finding appropriate treatments.
“We have something that is, in scientific terms, somewhat unusual in that we haven’t got a test, we haven’t got biological markers,” said Dr Calderwood.
“We can’t do a blood test or an imaging test that comes back where the report says ‘this person has ME’ and therein lies much of the issue.
“In not having a means of diagnosing, except by exclusion, we also don’t have a cure.
“So we haven’t got a mechanism by which to create medication or find a treatment through some usual modality through medication.”
Ms Freeman said the Scottish Government and NHS Scotland accepts the WHO definition of ME and would urge practitioners in the country to operate on that basis.
She also indicated the decision taken by practitioners on patients cannot be overruled.