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.
Photo credit: Ross Scott
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4 thoughts on “Stuart Murdoch’s open letter ahead of the ME Debate”
Mr Murdoch,
Thank you so much for writing this letter. I am in the U.S. and have been dealing with this for going on 13 years and know there are thousands and thousands more like us here and all over the world. Just wanted to tell you how grateful I am to you.
May God Bless you sir.
I always think that I’ll be able to read one of these letters from a fellow ME/CFS sufferer politely asking their respective government “Why ME?” without a wave of emotions crashing over me. Once again I’m proven wrong.
Such polite, respectful pleas for nothing more than what others are already receiving; acknowledgement of and scientific pursuit of answers to provide treatment for a horrid disease.
People have the same thing in common. Pain, isolation, debilitation, and a life going and/or nearly gone by as they are forced to lay in bed, suffering day and night. Waiting for our governments to stop pretending they don’t know we’re here. For years, even decades, we have been frozen in place against our wills. We are suffering horribly. In physical and mental anguish made worse as each year ticks by with no new word of help coming our way. Help in the form of government recognition of the mounds of scientific research proving how very sick we are. How desperately funding for the furtherment of research to find out what is causing this, and how to diagnose it quickly then provide treatment and ultimately hope.
How to fight off despair when decades of our lives are already lost to us as we lay helpless to do anything about it. Our children grow up without us being involved in their childhood. You can’t turn back the clock. These events are lost forever.
And we are not able to experience it, be there for our loved ones, be part of our own lives.
Hobbies and special skills we were born with are denied us by bodies and brains that are malfunctiining. We have a place and a purpise in society. A contribution we could be making.. we want more than anything to be contributing to society and to our loved ones.
But always the answers from our governments are nothing but excuses for why they don’t care to stop our suffering and return us to our lives. We are their own citizens. A LOT of their citizens. And they do know about us.
They choose to allow our suffering to continue.
And it makes me feel like I am a “non-person”. I realize that not only do I not matter to these men and women, but hundreds of thousands to millions of people just like me… fellow citizens, are terribly sick and alone. Tortured by this disease called ME/CFS… with no sign of help that I can see.. not even a sign of it coming eventually.
And I cry. Yes. I cry for myself. But I also am crying for all those people out there that are in the same situation I am in.
I cry for us all.
I wonder if I will still be alive when they eventually get ’round to us? And if I am, will I have any years of my natural lifespan left that I will finally get to live?
Thank you.
I came across this open letter quite by chance but, on an auspicious day for three reasons:
1) I had no idea whatsoever that there was to be a Commons debate on 24th January 2019. Yet, that’s the day I ‘found’ Mr. Murdoch’s Open Letter.
2) I usually find it very difficult to awaken very much before a certain time of the day. Yet, here I am awake and attentive at 0930hrs.
3) My mother died five years ago with ME. She did not understand it. As was in character for her, most of the time she refused to accept that she had ME. Yet, she was diagnosed with ME at least ten years before a rare cancer aggressively swept her away from her seven beloved grandchildren and me. We still feel her absence keenly.
I feel like I’ve been shaken awake, given Mr. Murdoch’s letter to read and, made aware of the Commons debate today. I don’t know why but, now I do know, I do not intend to remain silent about the matter of ME.
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