Friday, 28 May 2010

International Conference on ME/CFS May 2010

The 5th Invest in ME International Conference on ME/CFS took place in London on 24 May. List of lovely speakers here - and they are lovely - all of them. Lovely for their brilliant minds and search for truth. If you wish to order the DVD, you can do so here.

9 comments:

kp said...

so interested to see what comes from this...such an amazing line-up of speakers.

nmj said...

it is just so consoling that these scientists are working towards truth, i just came across peter white's 2009 bergen presentation,

really, it beggars belief that these ignorant, ignorant medics are getting away with this.

Muhamad Lodhi said...

Believe it or not I know three people with some form of ME. Makes me wonder how prevalent it is in the UK.

kp said...

wondered if you might be able to clarify something for me? what exactly is the difference between ME and CFS anyway? here in australia it's always referred to as CFS, a name i hate with passion, and noone seems to know what ME is other than another name for CFS. yet things i've been reading lately suggest that there are measurable differences between the two. after almost two decades with this illness i thought i'd know these things...

Susannah said...

What would I do without your regular little updates, so I don't have to spend my energy running about trying to find out what's going on in the M.E. world?!? ;) My way of saying thanks, heh.

Kp - I don't have energy to say much, but CFS is more of a catch all term for any kind of fatigue illness that isn't explained by another diagnosis. M.E. is a more specific, usually more severe, neurological illness which, though cause is not known, does have a very specific set of symptoms and does have some tests available to show evidence of it. (Though you'd be lucky to get those tests done here in the UK - guessing it's the same down under!)

I'm sure other people could explain that much better, but it's a start. :)

nmj said...

Kp, In UK: ME is a neuro-immune illness, this is what I was diagnosed with in 1983, by a cons. neurologist. I'd never heard of CFS. CFS is a nebulous syndrome, often involving depression with unexplained fatigue... problem is psychiatrists mix them up - deliberately - to invalidate the serious neurological/immunological aspects of ME. My belief is that those who respond well to GET & CBT do not have ME at all, but the ill-defined CFS. I would never refer to my own illness as CFS.

I don't have energy to go into it all, v good link here:
http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm#Changing

Thanks, Susannah. I actually realised too late, the conference had been and gone - I only keep up by dipping into ME Assoc and Invest in ME links in my side bar, a lot of goings on I am not up to date with. It is exhausting trawling through all the info, and I try not to be dominated by ME events, I just like to report what seems important. And my anger renews itself all over when I read certain snippets! Glad you find updates helpful.

nmj said...

M, They reckon 250 000 in UK have ME.

Susannah said...

I know exactly what you mean about your anger getting renewed each time you read something new. I react very similarly.

I think I've just had enough of being sidelined and dismissed by the medical profession, government, etc etc! Too many wasted years with too few people understanding! :P

And yea, the trawling is really hard work on the brain, never mind the body! I'm thankful you do it for me hehe. ;)

kp said...

thanks very much for that link and also for the other info nmj and susannah. ironically (but predictably) can't even take it in or concentrate enough to read it at the moment but will go back to it when things improve - if only they would make at least the name part of this illness (es?) simple so that we could all move on to more important things...