Topic: ME Awareness Week

[Juliet]

Anyone here who knows me probably knows I suffer from ME.

I don't want to bang on about it (so dull hearing about other people's problems) but a couple of people on here did ask about it a few weeks ago, & it's ME Awareness Week this week, so I thought I'd post some links to some info. for anyone who's interested.

And as it's likely you don't know much about it (apparently 35% of the general public has never even heard of ME), but it's also likely you know someone who suffers from it (it affects around 1 in every 250 people in the UK - that's almost 3 times the number of people affected by MS - a similar illness which pretty much everyone has heard of) there's a chance you might find this useful.

Action for ME (the main ME charity in the UK) just did a survey on the severity & impact of ME - this page has a summary of the results:  http://www.afme.org.uk/campaigning.asp?table=contenttypethree_detail&pagetitle=M.E.%20-%20More%20than%20you%20know&id=124
If you'd rather read about real people, this page has some short stories about people who have ME & what it's like:
http://www.afme.org.uk/campaigning.asp?table=contenttypethree_detail&pagetitle=M.E.%20-%20More%20than%20you%20know&id=133

If you have ME or know someone who has, and would like more info., please feel free to pm me - or contact Action for ME (there is a contact us button at the top of both the above pages).

Juliet

PS:  If you're in the states, ME is known there as CFIDS (Chronic Fatigue & Immune Disfunction Syndrome) - sorry, I don't know what they call it in other countries, but it is also sometimes referred to over here as Chronic Fatigue Syndrome or Post-Viral Fatigue Syndrome (although most sufferers/specialists aren't keen on these names as they give an inaccurate idea of  the symptoms & possible causes).

[lorna]

Juliet Thanks for that info. I did mention that my great niece suffers quite badly from ME. Do you mind if I copy and paste your post and send to her Mum?

[Robert_Brenchley]

I had it, at one time I couldn't even turn over in bed till late morning, but eventually I got over it. It's a horrible thing; the worst aspect was that for a long time I couldn't concentrate on anything for more than about ten minutes. On top of that, this was ten years ago when it wasn't widely recognised; my doctor knew what it was (some didn't), but other people were insisting that there was nothing wrong with me.

[busy_lizzie]

Thanks for posting the info Juliet.  Not enough people are aware of what ME or Chronic Fatigue is and there is a lot of misunderstanding about the condition.  The more light that is shone on it the better, as there is such a need to do more research in finding a treatment  and a cure. 

Personally, I hope you are doing not too badly - you are often thought of.
busy_lizzie

[Juliet]

Hi Lorna, no of course I don't mind you copying my post to your great niece's mum (your niece? sorry, can't work that out:  brain overheated!).  If she has had ME for some time, she may already be a member of Action for ME &/or a local support group, but if not, do feel free to put her in touch with me (she could pm me, or if you pm me & ask I'll send you my email address) - I'm on the committee of my local support group & have lots of useful info. about the illness.  I'd really recommend joining Action for ME, though, if she isn't a member already - they produce excellent for information leaflets & a quarterly magazine, and are great for just making contact with other people with ME.

at one time I couldn't even turn over in bed till late morning

Great to see you are now posting at 07.56, Robert - that's a time of day I haven't seen for a long time!  I've read that ME causes sudden dips in blood pressure early in the morning - which is why so many people with it wake up with that awful hangover feeling & are unable to get up until lunchtime

Thanks for your thoughts, Busy Lizzie! - I'm not doing too badly at the moment, but not liking the hot weather!  How are you?

[lorna]

Juliet. Thank you. No it is not your brain ;D My great niece is NOT on the internet but her Mum (my niece) is so will forward it to her.
Regards Lorna.

[Robert_Brenchley]

Blood sugar levels may well be right, since I have problems in that department anyway. Nobody had thought of it back then, or I could easily have kept some glucose handy. I just remember lying there every morning, unable to turn over even. Dreadful.