Belle and Sebastian singer backs Parliament debate on ME treatment

Belle and Sebastian singer, Stuart Murdoch, who suffers from ME, has told the government 'all we want is to get better'.

He has written an open letter to the government, as MPs prepare to debate the treatment and funding of patients with myalgic encephalomyelitis, which leaves 75 per cent of those affected unable to work and 25 per cent housebound or bedridden.

The ME debate will take place in the House of Commons on Thursday afternoon, 24 January.

The disease is debilitating and characterized by profound fatigue, pain, headaches and cognitive problems. People on the severe end of the spectrum live their lives in darkened rooms, unable to bear light, sound or human touch.

It is estimated that around 250,000 British people have the disease, with 25,000 of these being children.

Jessica Taylor-Bearman, 27, who has had ME since 2006, said: “The House of Commons debate on ME comes at pivotal time for both sufferers and the wider community.

“The time to act is now. I don’t want to spend the next 12 years trapped in my sickbed. We need to start treating ME sufferers better, by not forcing graded exercise therapy (GET) and cognitive behavioural therapy (CBT) on them but instead spending more money on biomedical research to treat this terrible disease.”

MPs from all the parties have been calling for a debate with Carol Monaghan leading the call, with support from Nicky Morgan, Alex Chalk, Stephen Pound and Kelvin Hopkins.

They want the government to ‘provide increased funding for biomedical research into the diagnosis and treatment of ME’ and for health professionals to stop using Graded Exercise Therapy and Cognitive Behaviour Therapy as a treatment.

They also want updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME.

The motion for the debate also highlights the current trend of subjecting ME families to unjustified child protection procedures.

MP Stephen Pound said: “I think the disability of ME doubly disadvantages people. On the one hand, it is an invisible disability. On the other hand, it is a denied disability.”

Belle and Sebastian singer, Stuart Murdoch, who has had ME for 28 years, also welcomed the debate and in a letter to the UK government, which was published on the #MEAction website, 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 at 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.”

For more information on ME, go to https://www.meaction.net