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.
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.
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