Have been so preoccupied with my mum being ill this last ten days that ME International Awareness Week has had to go on the back burner. Scott blogged this on Monday and it was nice to see this review going up on Amazon and Goodreads. I like reviews that quote from the book - once I knew the novel off by heart, but with time you forget. Nice to see snippets and be reminded of what you wrote.
I managed to attend the ME Awareness Cross Party Group event at the Scottish Parliament last night, organised by Mary Fee MSP, which I hope got more MSPs engaged, though I'm not sure how many attended (mine didn't, disappointingly). I really was so wrecked, in that zone of feeling outside everything but somehow you chat through it all. I cheerfully told Mary that I'd voted SNP in the council elections (though I'd swithered in the booth); I hope she understands my mishmash of a head - true cognitive dysfunction, momentarily confusing an MSP you know is Labour with your own MSP who is SNP - and that she didn't go home and burn my book.
The great thing about an ME event is that when you have to suddenly sit down on a trestle table, or the nearest thing, no one bats an eyelid. I took along a copy of The State of Me to gift/donate and gave it to a charming young woman who has been ill for fourteen years. She looked like a Southern belle, I was struck by her demureness. I didn't mix as much as I would have liked to, but I did meet some inspiring people and left with a feeling of hope. There are, thankfully, enlightened medics (I heard Dr Greg Purdie of NHS Dumfries and Galloway speak for first time), politicians and teachers (Can you imagine the horror of your sick child being forced to attend school?) out there, but not enough has changed since my diagnosis in 1984 - so much time and money wasted on bogus 'research', too many shutters coming down. Yes, there are chinks of real progress, but we still have a huge uphill task, we need to educate, educate, educate - and those in the dark need to want to be educated, they need to come forward, it's a two-way process. Otherwise we are just preaching to the converted.
Thanks again to Mary Fee, and the hardworking charities who attended, I didn't manage to look at all the stalls and missed a demo of a fascinating VLE (virtual learning environment) project in development from Perth and Kinross for children who are missing out on the school experience (not just educationally but also socially) because of illness.
And the Garden Lobby is a gorgeous space.
* Just heard that 17 MSPs attended, good news indeed!
** ME Research UK's summary of the event.
I managed to attend the ME Awareness Cross Party Group event at the Scottish Parliament last night, organised by Mary Fee MSP, which I hope got more MSPs engaged, though I'm not sure how many attended (mine didn't, disappointingly). I really was so wrecked, in that zone of feeling outside everything but somehow you chat through it all. I cheerfully told Mary that I'd voted SNP in the council elections (though I'd swithered in the booth); I hope she understands my mishmash of a head - true cognitive dysfunction, momentarily confusing an MSP you know is Labour with your own MSP who is SNP - and that she didn't go home and burn my book.
The great thing about an ME event is that when you have to suddenly sit down on a trestle table, or the nearest thing, no one bats an eyelid. I took along a copy of The State of Me to gift/donate and gave it to a charming young woman who has been ill for fourteen years. She looked like a Southern belle, I was struck by her demureness. I didn't mix as much as I would have liked to, but I did meet some inspiring people and left with a feeling of hope. There are, thankfully, enlightened medics (I heard Dr Greg Purdie of NHS Dumfries and Galloway speak for first time), politicians and teachers (Can you imagine the horror of your sick child being forced to attend school?) out there, but not enough has changed since my diagnosis in 1984 - so much time and money wasted on bogus 'research', too many shutters coming down. Yes, there are chinks of real progress, but we still have a huge uphill task, we need to educate, educate, educate - and those in the dark need to want to be educated, they need to come forward, it's a two-way process. Otherwise we are just preaching to the converted.
Thanks again to Mary Fee, and the hardworking charities who attended, I didn't manage to look at all the stalls and missed a demo of a fascinating VLE (virtual learning environment) project in development from Perth and Kinross for children who are missing out on the school experience (not just educationally but also socially) because of illness.
And the Garden Lobby is a gorgeous space.
* Just heard that 17 MSPs attended, good news indeed!
** ME Research UK's summary of the event.
2 comments:
Dr Greg Purdie is in our local practice and was the one who diagnosed me
V. interesting, Kim. You are lucky to have him!
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