Discussion in 'General ME/CFS News' started by Firestormm, Jun 19, 2013.
And I pinched this from Newcastle University's Facebook page:
This just in.... those scientists also in attendance:
Holgate - well you could write a book - I think Crawley was there because she is also vice-chair of the Collaborative having accepted the position when they all gathered at that event; and Pheby is also heading the UK Disease Registry.... more on THAT later peeps Don't know much about Ellis off the top of my head; and I've never heard of Newton before but I'm told she likes posing outside No. 10 and is often seen there causing a nuisance wearing her ME T-shirt
Thought I'd try and read about Anna Hemmings' story, but... the text in the banner of this page! http://www.annahemmings.com/page48.asp
(I'm pretty sure it's intended as a generic motivational statement, as several others are dotted around the site... a very unfortunate choice though!)
I find it worrying that Government will get their view of ME from the Action for ME who still seem to be supporting PACE and I found Pheby and Action for ME's latest paper somewhat worrying and uninsightful.
If this is organised from the new research collective shouldn't some other groups have been included?
I believe Julia Newton and her team were given a £1,000,000 towards research not that long ago. I'm too tired to search for links, but google her - her research is interesting. She's situated in Newcastle, I think.
I think this is a positive thing.
I was being ironic, Apple. Sorry. My humour doesn't always come across very well in text
Prof Newton is a pin-up of mine though I do wish she took time-out for 30 minutes to get her hair done Seriously, she's doing some good things I believe and yeah she and her University got a large proportion of the MRC 'pot' in 2011.
Out of interest, user, The MEA Essential's Magazine this month had a really good article from Pheby: 'a key figure on the ME/CFS scene - most recently as head of the ME Research Observatory and now the Disease Registry, which will recruit donors to the recently established UK ME/CFS Biobank'. More on those last two shortly as I said above.
The article was a transcript in the form of notes from his speech in March at the APPG where he revealed exactly why ME matters so much to him and his family:
He goes on but I don't want to continue as I don't have permission at this point. Suffice to say that his professional involvement is stimulated by personal passion. Doesn't mean his opinions and papers shouldn't be critiqued of course - he ain't a god - just thought you'd like a little glimpse at background.
I hope to be writing and publishing an article on the UK Registry and Biobank developments and updating on progress with a couple of interviews if I can - when I can - in the next few weeks.
Yes I had read the APPG transcript. But I know very little about the UK biobank so it would be good to read anything you write.
I think there was a thread for the Pheby/Action for ME GET paper so I will put more detailed comments on the paper there soon.
I did think to myself that if anyone had it might be you Yeah be nice to review his paper - probably did but not properly - can't remember; might give me some background. Thanks.
Minutes are here if anyone else wants to read about Pheby's background and also his 2009 research into Severe ME and the problems with assuming 25% and the general lack of work in this area.
Oh, how embarrassing . Sorry! I've noticed your username around on here and FF and did think that it was a bit odd that you wouldn't have heard of her. hahaha. Ooops. Brainfog strikes again.
Crikey. A Foggy Friend-er. Delighted to make your acquaintance. That forum was of great help to me when I was at my worst. Really good place. Supportive. Developed many a friendship from Foggies. Owe them a lot. You've brought back some good memories. Thank you x
My understanding is that this was a private AfME social gathering, with select guests.
So i think it was a private AfME get-together more than anything else.
I'm glad you clarified, Firestormm, cos i was about to tell you that you do know Julia Newton, and provide some links!
(Thought you might be having a bad memory day!)
BTW, your humour is fine (usually)!
She's quite a memorable lady and no mistake even with a foggy head. Thanks Bob
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