THE singer and co-founder of one of Scotland's best loved bands has told of how sufferers of myalgic encephalomyelitis (ME) like him are "disregarded and ignored" in a appeal to government ministers to do more to treat the "devastating" disease.
Stuart Murdoch of Belle and Sebastian has made his views known as Carol Monaghan, MP for Glasgow North West, leads a landmark debate on Thursday to call on the UK government to commit more funds for biomedical research into ME and to put in place more appropriate care plans for the estimated 250,000 ME sufferers in Britain.
Mr Murdoch, who suffers from ME in an open letter to the government said "all we want is to get better" while criticising the "underfunding" of research into the condition.
MPs will debate the treatment and funding of patients with ME, which leaves 75 per cent of those affected unable to work and 25% housebound or bedridden.
Manifesting as unrelenting fatigue and profound pain, the condition, also known as chronic fatigue syndrome, has no known cure and is made worse by exertion.
ME sufferers are often confined to their beds, unable to walk, and need help even to shower - an action that could then lay them low for hours, days, weeks or longer.
Mr Murdoch, who has had ME for 28 years, welcomed the House of Commons debate and in a letter to the UK government said: “I am one of the 250, 000 people in the UK who currently have some form of myalgic encephalomyelitis (ME). That’s a lot of people.
“I know you have your hands full at the minute, but spare a thought for this abandoned constituency.”
He added: “We are ghosts. Disregarded, ignored and, at worse, not believed. It doubles the burden. We cluster with each other for help and support like urban lepers. All we want is to get better. All we want is to prove that we are worth something.
"Funding, research, dedicated rehabilitation programmes – these could be the key to the door for so many. We’re not going away. It really would be cheaper to try to make us better.
“This nation has been the pioneer on so many fronts, scientific and medicinal. Surely there is the brainpower and the tenacity to tackle this illness? I believe the scientists have not been given the chance. I believe that ME research has been inexplicably underfunded.”
Following Westminster Hall debate on the treatment and research into the condition in June, over 30 cross-party MPs backed Ms Monaghan’s application for a full debate in the House of Commons.
Ms Monaghan hopes that the UK government will commit to ensuring that GPs and medical professionals are issued with new guidance on the diagnosis of ME.
She said: “The ME community has waited decades for their voices not only to be heard, but to be believed, and I am delighted to have secured this long overdue debate in the House of Commons.
“The consequences of ME, and the lack of appropriate treatment for patients, are wide-reaching. Those with severe ME may spend their days in darkened rooms, unable even to watch TV or listen to music. Even touch is intolerable, and many are tube fed. For these individuals, ME is a life sentence – but a life spent existing, not living.
“The most harrowing stories are those about children with ME, with desperate parents watching their children suffer finding themselves subjected to child protection proceedings.
“The UK government must commit to an increase of funding for biomedical research into the disease, suspending the harmful treatments currently recommended by NICE and update the training of GPs and medical professionals to ensure that they are equipped with clear guidance on the diagnosis of ME.
“This government has it in its power to make radical changes to the lives of those living with this devastating illness.”
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