The chronic, neurological condition myalgic encephalomyelitis (M.E.) affects more people in Scotland than MS and Parkinson’s combined – but doctors receive almost no training on the illness. The urgent need to change this is the focus of a special event at the Scottish Parliament tonight, hosted by Gail Ross MSP and supported by UK charity, Action for M.E.
“We have already been working with the Scottish Government to improve access to the right information about M.E. for some health professionals, as part of our Inform M.E. Scotland project” explains Action for M.E.’s Project Co-ordinator in Scotland,Theresa Burns.
“Now we want to build on this, by exploring how we might develop more detailed training on M.E. for health and social care professionals. We also want to increase the number of M.E. specialists in Scotland, and see the appointment of a clinical lead in this area.”
MSPs, clinicians and policy-makers who have been invited to the event will hear from adult patients about their experiences of trying to access appropriate care, and from the parent of a child with M.E., which is the biggest cause of long-term school absence.
Showing the difference the right sort of support can make, John Eden, Chief Executive, Scottish Huntington’s Association, will present his charity’s progress with developing a continuing professional development programme and national care pathway.
One of the specialists already improving lives in Scotland for people with M.E. is Scotland’s only specialist M.E. nurse, Keith Anderson, who is frank about the urgent need for change.
“There are more pandas in Scotland than M.E. nurses,” says Keith, based in NHS Fife, who will be speaking at tonight’s This is M.E. event.
“If there were more M.E. specialist nurses in the NHS, we would not only be able to help improve the lives of those affected by the illness, but also educate those across all health care professions about a condition that affects more than 20,000 people in Scotland. It’s scary to find out that many GPs and other doctors don’t know what M. E. is, let alone how to manage it.”
Earlier this year, Action for M.E. and the Scottish Government Chief Scientist Office are launched a joint PhD studentship for biomedical research into M.E. The charity also runs Mentor M.E., a peer-mentoring project for people affected by M.E.
“I rarely do anything social these days. I am trying to build up to three social activities a month, but I find that hard going,” explains Edinburgh-based Kirsty R-Mitchell, 43, who has been matched with a mentor as part of the project. She was diagnosed with M.E. four years ago.
“My mentor is great at identifying what I do well, pointing out where I could make practical changes. I dread to think where I would be without her and Mentor M.E. It’s such a simple idea that continues to have a huge positive impact on my life.”
For more information about any aspect of living with M.E., or to find out how you can take part in Mentor M.E., visit www.actionforme.org.uk
Key statistics:
- M.E. affects an estimated 250,000 people in the UK, including 20,000 people in Scotland, and around 17 million people worldwide.
- One in four people with M.E. is so severely affected that they remain house and/or bed-bound, unable even to tolerate being touched by their loved ones.
- Adults with M.E. are six times more likely to die by suicide than the general population.
- M.E. is the most common cause of long-term school absence.
- M.E. cost the UK economy at least £3.3 billion each year; this figure accounts for healthcare costs, disability-related welfare payments, productivity losses and unpaid informal care.
- Yet research funding into the condition represents less than 1% of all active grants given by UK mainstream funding agencies.
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