I have friends who suffer from ME. Most of them, I haven't met, even those who live nearby, because it's so bad that some of them have to live most of their lives cloistered in darkened, soundproofed rooms.
People don't know about this disease, or if they do, they only know a little about it. Until recent years, my own perception was that it was characterised by an overwhelming sense of exhaustion, making it impossible to do very much, and the more you did, the more exhausted you felt. And yes, there is that. But there is so much more, that I knew nothing about.
I've asked some sufferers to describe their own experience of living with ME, in their own words, and I'm going to reproduce what they've said on some new pages on this blog. Please read at least some of this, especially if, like me, you weren't aware of some of the symptoms.
I'm a musician, and I have a lot of friends who are also musicians. Last Christmas we did a fundraiser in our local village hall for those who'd been affected by the Cumbrian floods. It was a great success, and the audience thoroughly enjoyed themselves, telling me they'd be happy to come to more events of the same sort. I've been meaning to do another one ever since. Well, now I have a charity that desperately needs funds - ME Research.
Please have a look at their website and consider donating to research for this poorly-funded, and little-understood disease. You can read the official explanation here: WHAT IS ME?
I haven't set the date for the fundraiser yet, but the first one should be at the end of September if things go to plan. I'll print out our sufferers' statements and plaster them round the walls, and make sure everyone who comes along knows exactly what we're fundraising for.
In the meantime, please read. I'll copy and paste patients' statements as I get them.
You'll find links to these pages on the right --->
Thank you.
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2 comments:
CFS/ME has plagued me almost all my life. I battled against it when I was young - bad idea, I became much worse. I eventually learned to manage it by simply shutting down until I felt better. Of course when I felt better I did too much and landed back in bed exhausted, depressed and very weepy.
In the 1960s my GP told me I was malingering. A physician found 'nothing wrong' with me. A psychiatrist told me I was 'wasting his time'.
ME knocked me back many times, at university, in work situations, relationships. In spite of it I have forged a (reasonably) successful path. But I know it robbed me of much potential. I could write a book, if only I had the energy!
I'm 75 (2023) and still coping day to day. Thankful to still be here, and not feel guilty about what I 'should' be doing or have achieved. Thank you for reading. Cherry
Thanks for commenting Cherry. My heart goes out to you. Your story is so familiar: patients being fobbed off by professionals who had no concept of what you were going through, every day of your life, and who refused to believe what patients were telling them. I gather things have been getting a bit better recently, partly because of all the sufferers from long covid, which is so similar to ME. At least the medical professionals are a bit more clued up these days, and more research is being done, but this isn't helping long-term sufferers like you in their day-to-day lives. I'm so glad to hear you've managed to make a good life for yourself despite all the set-backs.
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