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10 January 2011 @ 06:35 pm
Virtually bedbound for nearly 17 years now :(

I read here, but dont post anymore. I can be found on facebook if anyone wants to stay in contact that way. x
Current Mood: sadsad
14 December 2008 @ 06:58 pm
Hello! For reasons that I've explained in a friends locked post I took the decision to do a clean up of my friends list and have now taken quite a few people off. If you missed that post and want be added back, please do yell!
09 December 2008 @ 06:25 pm
It looks like there is going to be quite a bit of coverage about M.E on the news tonight in the UK, following the death of Lynn Gilderdale. Fingers crossed that it'll be good and that someone will now listen, how many more have to die.

Info on the progs here: http://www.meassociation.org.uk/content/view/718/70/

Articles about Lynn here, for those that haven't seen: (very very upsetting)


15 July 2007 @ 06:08 pm
I'm a bit disgruntled.

Harry Potter and the Deathly Hallows is released on the 21st July and the audiobook is out on the same day too. As the book is hardbacked and will thus be too heavy for me to read, and not wanting to wait for the paperback; I decided to order the audiobook.

Amazon promise that if you order either of the paper books (adult or children's cover) by midnight on the 17th they will deliver it to your door on the day of release. I hoped this would apply to the audiobook as well, but apparently not. My audiobook will be delivered, they estimate, by the 31st. TEN DAYS AFTER RELEASE! Maybe I'm being grumpy but isn't that a little unfair to all their blind and disabled customers? As the audiobook has been prepared for release on the same day as the paper books, for the first time, why can't Amazon deliver it at the same time too?

I'm not sure whether to cancel my order or what to do. Amazon sell the audiobook considerably cheaper than the RRP, half price in fact, but it's still pretty expensive. If I go somewhere else, for example ask my mum to buy it for me when she goes out, I could end up paying much closer to the RRP. Which, by the way, is seventy-five pounds! I'd feel like I was being ripped off.
Current Mood: crankydisgruntled
13 May 2007 @ 11:35 pm
Stephen Fry AND George Michael are on Parkinson next Saturday. Oh my! It doesn't get much better than that. The Scissor Sisters are on as well which doesn't hurt.
Current Mood: excitedexcited
08 May 2007 @ 06:23 pm
I've sent off my 25% ME Group letter and statements to my MP for ME Awareness Week. I would love to do so much more and am upset that I'm just not able to but what I can do is spread the word about these statements and this letter.

I never ever just send form letters with blind trust, I always read them through thoroughly and only send them if I totally agree and I really couldn't agree more with what the 25% group are trying to achieve here. They are "focusing particularly on the problems surrounding the NICE Draft Guidelines for CFS/ME, the DWP CFS/ME Guidelines and the NHS Plus Guidance Documents on ME/CFS." Statements on all of these to send to your MP or MSP plus a covering letter are on their website here for anyone with severe M.E. who hasn't already done this and is interested. Or anyone else but the letter will need altering slightly as it written from the perspective of someone with severe M.E.
25 April 2007 @ 05:20 pm
One of my pet hates is when something I've bought dies/explodes*/falls apart or isn't what it says on the tin, the company rather than saying "I'm terribly sorry madam, I shall issue you a refund" instead reply we've sold loads of these and no one else has complained! Call me old fashioned if you like but I think that's terrible customer service, I'd never run a business like that. I'm a good customer; I'm fair and if the product and service is good I'm very loyal. In my opinion you should only imply that the customer is lying when, at the very least, it seems likely that (s)he is. Otherwise honest ones like me can get a tiny bit cross! (it's not a pretty site!)

*excuse the exaggeration, I'm annoyed!
Current Mood: annoyedannoyed
12 April 2007 @ 10:19 pm
Didn't there used to be a "My LJ" thing (or something like that) where you could see your friends birthday dates? Or at least the ones comin up. Where's it gone?
Current Mood: confusedconfused
26 March 2007 @ 10:21 pm
"That fact is that people with ME are caught in an irreversible trap of illness/anxiety and stress about the illness/leading to worse illness and back to the stress and so on and so on."

This is completely untrue.

"Wake up and do yourself a favour if you ever want to recover."

Unfortunately, it's you who needs to wake up. If only it were this simple.

Current Mood: angryangry
29 January 2007 @ 11:11 am
This is an e-petition on a UK Government website. (You need to be a British citizen or resident to sign.)


We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome.