An event is being held at Holyrood next Tuesday which will feature Jennifer Brea, director of the Oscar-nominated documentary Unrest, addressing the audience via Skype from the US.
Unrest, which won a special jury award at last year’s Sundance Film Festival, shows how Jennifer and her husband Omar battled to cope with ME when she became bedridden while studying for a PhD at Harvard University.
Around 21,000 people in Scotland are currently affected by ME (myalgic encephalomyelitis) also known as chronic fatigue syndrome, which indiscriminately strikes people who have previously been healthy and active.
It is a debilitating neuro-immune disease which causes profound fatigue and can lead to cognitive impairment leaving sufferers unable to work or even carry out basic tasks.
Janet Sylvester, from Edinburgh, whose daughter Emma, 24, has a severe form of the illness, said the #MEAction event would raise awareness of the condition and call for more to be done.
She said: “We’re trying to raise awareness to MSPs of the 21,000 in Scotland who are living with ME but specifically what we’re asking them to do is write to the health boards asking them to look at providing specialist care for people with ME. We also want MSPs to contact NHS Education Scotland to ask them what training health professionals are being offered on ME at the moment because the feedback we’ve received from medical schools is that ME isn’t even on the curriculum.
“At the moment the Scottish Government doesn’t provide any public funding for research into ME and we’d like to see the Chief Scientist Office encouraging applications from organisations that might carry out research into ME.”
Famous Scots who have been hit by the disease include Belle & Sebastian frontman Stuart Murdoch, author Ali Smith and ex-Celtic footballer Davie Provan. In a survey of Scottish patients, two-thirds of people with severe ME had been ill for ten years or more.
A Scottish Government spokesperson said: “We want to ensure people living with ME get the best possible care, support and services.
“That is why we have provided additional funding to improve access to specialist nursing support and for Action for ME so they can engage health and social care professionals in discussions about how to improve the support available.”
Conservative health spokesman Miles Briggs MSP said: “It is vital we understand ME more and take forward research into the condition.”