Stuart Murdoch is the lead singer of Belle and Sebastian. He has had ME for 28 years and he has kindly shared with us this open letter to the UK government ahead of the ME debate on Thursday, 24th January.
Dear UK Government,
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.
There are no grey areas with us. There’s no politics here. No awkward questions about immigration. There’s just a quarter of a million of your people, your wards, dying to get back to health, to life, to jobs.
These are good people. I know, I’ve met and talked to so many of them in the past thirty years since I was diagnosed. But these are stalled people. They are people who have been left in the endless waiting room of life. There is no official ‘direction’ for them. No guidance from on high.
Although our doctors try their best to be a comfort, that is all they can offer. The sum total of help in the form of:
(1) an accurate diagnosis
(2) hope coming from medical research
(3) medicines and a possible cure
.. is nebulous at best, to use the parlance of the day.
Why ME? Why us? We respectfully ask why we have been ignored and left to rot. (And I do not exaggerate by saying ‘rot’. There is real suffering happening, long slow physical and psychological pain, day in day out, for so many.) Surely something can be done.
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.
Explain it to me? Why so little funding, for so many people, in so much pain? Just tell me the reason, and I’ll retract my question. Tell me why we aren’t as deserving as other citizens who have equally debilitating conditions? We just want to know.
We feel the tide is turning, and that ME is coming into the light. We just want you to get behind us. We don’t want you to do all the work, we just want a little shove, a little help, so that we can get going again. We are your ideal citizenry, we promise! If you can get us healthy again.