MSPs have united to call for better support for people with ME as well as more research into the debilitating condition.
The Holyrood chamber heard that despite an estimated 21,000 people in Scotland living with ME (myalgic encephalomyelitis), the NHS has only one dedicated ME nurse and only four out of 14 health boards provide a specialist service to ME sufferers.
The condition – sometimes known as chronic fatigue syndrome – has no known cure and can have a devastating impact on the lives of sufferers, with symptoms including exhaustion and fatigue, chronic pain, sleep disturbance, problems with memory or concentration and gastrointestinal difficulties.
It affects more people in Scotland than multiple sclerosis and Parkinson’s combined, but is often misdiagnosed or dismissed as a psychological illness.
SNP MSP Gail Ross used a member’s debate at the Scottish Parliament to highlight the issue in advance of ME international awareness day on Friday.
She read a quote from a friend Sally, who has the condition, who said: ” So many people with ME struggle on. It’s time this so-called silent illness is silent no longer.”
Tory MSP Brian Whittle said the availability of specialised treatment on the NHS was “to say the least patchy”.
He said: “It concerns me to find that the level of support on offer to patients with ME and their carers varies so significantly across the country.
“One statistic I found particularly shocking was that Scotland has precisely one ME nurse.
“While I must pay tribute to NHS Fife for their decision to provide an ME nurse, I’m baffled as to why no other NHS board has chosen to create a similar post.”
SNP MSP Emma Harper said the view that ME was a psychological rather than a physical complaint was “deeply harmful” and noted the condition was “notoriously under-researched “.
Labour MSP Anas Sarwar said: “I hope that we can all resolve to highlight this important cause to challenge the stigmatisation of chronic fatigue, and of ME, and to resolve to work harder to make sure we give better diagnosis and better treatment to all.”
A protest organised by 23-year-old ME sufferer Emma Shorter will be held outside Holyrood on Friday to urge the Scottish Government and NHS Health Scotland to provide funding for biomedical research into the condition and commit to educating health professionals.
Public health minister Aileen Campbell said the government was committed to making improvements in ME support.
She said: “As a government, we believe that everyone living with ME should have access to the care and support that they need, and that should be aided and helped by our £2.5 million recurring investment into specialist nursing.
“I concede and I accept there are issues and more that we need to do, however this should help bring about improvement .”
She said the Government had provided funding to the charity Action for ME for a project reaching out to health and social care professionals to engage them on support for the condition.
The minister said officials from the Chief Scientist Office would be happy to meet with the charity to discuss areas of mutual interest, with applications looking at the underlying causes, diagnosis and treatment of ME welcomed.