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
#1 by joe kane on May 10, 2012 - 9:11 am
Excellent blog post Mary. Thanks very much.
M.E. is a national scandal.
The NHS doesn’t bother to keep any kind of meaningful statistics on ME. It doesn’t know how many sufferers have it, and for how long they’ve been affected, and refuses to acknowledge that its laughable and medically unscientific NICE recommended treatment of CBT/GET doesn’t work, but actually makes ME sufferers symptoms worse.
The NHS and British medical establishment even insist on calling ME, which is recognised by the World Health Organisation, by another name ‘CFS/ME’ which is not recognised anywhere else in the world and was a label only invented a few years ago by Whitehall medical mandarins.
The British medical establishment has neglected and abused ME sufferers for decades and has wasted millions of pounds of taxpayers money on studies and research on psychogenic psychiatric theories about ME which have patently never had any basis in medical reality. The latest outrage is the Medical Research Council spending a measly £1.6 million on ME research on 6 projects none of which is searching for the pathogen which causes ME. Two of the grants are actually going to study 2 other diseases!
It’s scandalous that after all these decades the medical establishment is still doing as little as it can for these hundreds of thousands of sufferers. The amount of taxpayers money that is spent on welfare for these long-term patients could easily be saved by just the smallest fraction of it being spent on proper research investigating the biomedical physical cause of this disease. Our political representatives have to get a grip of the medical establishment who are costing the taxpayers hundreds of millions of pounds every year because they refuse to do anything about a disease which is almost a national epidemic.
#2 by Carole Carrick on May 10, 2012 - 12:07 pm
Thank you Mary for highlighting what is needed.
Biomedical research is paramount and although other charities are doing studies into certain aspects of ME, it needs mentioning that Invest in ME are raising funds for the UK’s first Biomedical research facility.
As part of a patient led initiative a group of ME sufferers and their families and friends have managed to boost the funds needed, to almost £40,000 in just a few months. This campaign is called ‘Let’s Do It For ME’ This is an incredible achievement from people who are either housebound or even more severely affected and confined to their beds.
By bringing biomedical research into ME, the research and it’s findings will break down some of the barriers and the misconceptions that have haunted ME for too many years now. As Joe Kane so eloquently stated that too much money, time and effort has been poured into psychological theories.
Our Government, medical professionals, the media and most importantly the General Medical Council need to wake up and realise that there are thousands of men, women and children in the UK that are abandoned and suffering and need answers now before more people die of this terrible illness.
More information about Invest in ME and also Let’s Do it For ME can be found on these two links:
http://www.investinme.org/IIME%20Campaigning-Can%20Do%20Biomedical%20Research%20Fund.htm
http://blog.ldifme.org/