This is posted on behalf of Mrs Mary Fee MSP, who is convenor of the Cross Party Group on M.E. in the Scottish Parliament. If you are an MSP and can attend the event, please RSVP using this email address.
Mary Fee, MSP for the West of Scotland region, is asking fellow politicians from all political parties to take part in M.E. Awareness Week 2012 by inviting them to an M.E. Awareness Event on the 8th May.
Mrs Fee convenes the Scottish Parliament Cross Party Group on M.E. which helps to bring both suffers and those with an interest in Myalgic Encephalomyelitis together to provide MSPs from all parties with information and expertise on issues affecting ME sufferers, their families and carers.
Speaking about the event, Mrs Fee said:
“Unfortunately there is still a lot of misconception surrounding M.E in Britain today and we hope that this event, and the awareness week in general, will help to counter these. Those who suffer from M.E. are tragically not getting the support and care they need and are under constant threat of losing their benefits due to ignorance surrounding the illness. Action for M.E. believes that more than half of those who suffer from M.E will end up losing their jobs due to the illness.”
M.E. is recognised by the World Health Organisation as a neurological condition and can result in muscle pain with intense physical or mental exhaustion, relapses and specific cognitive disabilities.
M.E can affect people of any age, though is more common with those aged between 25 and 45 and is more common in women than in men. It is estimated that more than 250,000 people in the United Kingdom suffer from M.E.
Mrs Fee added: “Whilst scientific research has advanced in leaps and bounds in other areas, due in part to large funding from Governments, M.E. has been left to fall behind. We still don’t know what causes Myalgic Encephalomyelitis nor how to cure it. I hope that this event will help highlight the work that still needs to be done regarding M.E. and would ask all readers to get in touch with their local MSP and ask them to attend the event.”
The event, which will take place in the Garden Lobby of the Scottish Parliament, will be hosted by Mrs Fee and include speeches from Jo Bluett and Dr. Gregor Purdie.
Latest update on the event, sent in by Carol Flack, secretary of the Cross Party Group:
So far we have a good attendance list and the programme for the evening will go like this:
6pm – Welcome – Mary Fee MSP – Convenor of the CPG on M.E.
6.05 – Speaker – Jo Bluett on her experience of M.E.
6.17 – Speaker – Robin Patrick on his experience as the parent of a severely ill 15 year old daughter, Ailey.
6.29 – Speaker – Dr. Gregor Purdie on his experience as a health professional working with M.E.6.45 – Perth & Kinross Council's display of the Virtual Learning Experience – outlining current progress and its potential to break down barriers to education for young people with M.E.
For the last hour of the event guests can mingle and visit stalls and displays, getting information from a number of groups including edmesh, MERUK, M.E. Assoc., 25% M.E. Group, Afme, Invest in M.E., TYMES trust etc. We will be running the film ‘Voices from the Shadow' and will have a powerful photographic exhibit.
This event is about raising MSP awareness, with of course the view that this should impact on Scottish Govt and right across the Health Service, policy and practice…
Well done Mrs Fee! Thank you so much for your hard work in organizing this. Even though I live in England and not Scotland it is heartening to know that someone, somewhere, recognizes the difficulties those with M.E. face – not just with the illness but the perceptions of others and the overall prejudice and lack of support medical and otherwise.
Wouldn’t it be great if we could persuade an English M.P. to take a leaf out of this lady’s book?