A guest post from Mary Fee MSP who is Convenor of the Scottish Parliament Cross Party Group on M.E. and will be chairing the ‘It’s All About Me’ event which aims to bring MSPs together with health professionals, M.E. charities and sufferers of M.E. to share knowledge and information. Mary Fee is a list MSP for the West of Scotland and was elected in the 2011 Scottish Elections.
It was with great sadness that I read about the passing of M.E. activist Emily Collingridge in March of this year. That someone so young was taken by an illness that many today still refuse to acknowledge should have sent shockwaves around the country. Yet there was almost no coverage of her death, I only became aware of it through reading an article on Comment is Free.
Whilst Ms Collingridge may be gone her work does not have to pass with her, her death and her suffering must not be in vain, not just for the sake of Emily but also for the sake of those suffering from M.E. across the country. Sufferers and their carers are being deafened each and every day from their own silent screams, ignored by the government, ignored by the welfare system and ignored by the very doctors and health service that should be helping them.
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. Whilst scientific research has advanced in leaps and bounds in other areas, due in part to large funding from Governments, M.E. is being ignored. We still don’t know what causes Myalgic Encephalomyelitis nor how to cure it.
The World Health Organisation recognise M.E. as a neurological condition that results in muscle pain with intense physical or mental exhaustion, relapses and specific cognitive disabilities. Taking this definition of the condition one cannot help but come to the conclusion that to simply classify the condition as ‘fatigue,’ whether chronic precedes it and syndrome follows or not, is to trivialise the pain and suffering felt. Mental health campaigners, for example, whilst still facing a battle against stigma have thankfully passed the stage where sufferers are told to ‘pull themselves together,’ yet for campaigners for M.E. awareness a feeling of isolation still persists, stuck at a crossing waiting for the rest of the country to catch up.
Estimates put the total number of people in the United Kingdom suffering from M.E. at over 250,000. It is more common in women than in men and although it is more common with those aged between 25 and 45 it can affect people of any age, when she was first diagnosed Emily was six.
Myalgic Encephalomyelitis is a subject close to me personally and I am convenor of the Cross Party Group on M.E. at the Scottish Parliament. The CPG helps bring both sufferers and those with an interest in Myalgic Encephalopathy together to provide MSPs from all parties with information and expertise on issues affecting M.E. sufferers, their families and carers. At the last count the Cross Party Group on M.E. had 9 MSPs, over 50 individuals including sufferers, carers, professors and doctors, and a handful of organisations including Action for M.E., M.E. Research UK and M.E. Association.
M.E. Awareness Week will take place at the start of May and the Cross Party Group is hosting a M.E Awareness Event. There is still a lot of misconception surrounding the illness in Britain today making it imperative that supporters stand up and help counter this. I hope that the event will help raise awareness in Scotland and lead to serious questions being asked by politicians and health organisations. I ask Scottish readers to get in touch with their local MSPs to ask them to support the awareness week.
Unfortunately there is still a lot of misconception surrounding M.E. in Britain today and we are hopeful that this event, and the awareness week in general, will help to counter these. Misconceptions can be changed, not overnight and not without effort. M.E. Awareness Week is a great opportunity to begin these changes