The 1990 Robert de Niro / Robin Williams film "Awakenings" was about the post-Spanish flu illness, they called it "encephalitis lethargica", where...
Thank you, you're welcome! :)
not sure what specifically you are saying by posting a link to a whole thread, but AfME sent people to Geneva on May 12th last year (as discussed...
Oh this makes me sad reading that, and Keith's experience there. This was 2016. I'm in the patient advisory group for the CMRC (since December...
Well said, Ravn. If the journalist is reading this, he/she would do well to look at a couple of articles written by another journalist in the past...
Absolutely not! the CMRC is not interested in any BPS approaches whatsoever (I'm glad to report!). We want proper science.
See Jonathan E's replies - pretty much covers it. It's a proposal to the MRC which hopefully can lead to large scale funding (which we all need so...
Yes - the Toolkit....
I don't have any firm answers I'm afraid! I wasn't aware this was coming out ... AfME have received the letter, & I know the staff member who...
Hi - I see the page https://www.actionforme.org.uk/living-with-me/treatment-and-management/ says "under review" (due to "emerging evidence"), but...
Hi - and thank you! - yes i joined as trustee in late November. I am intending to join / be influential on (mostly) the Policy group, but it's...
Yeah..... so, I was at the CMRC meeting in November, and (and this is only my impression, not "fact"), Carmine probably knows people who are close...
I'm sure most people are somewhere "in between", but as we know, this study wasn't about ME/cfs, so whichever criteria were used, it would never...
Well, maybe, but to be fair, he was interested in looking at cytokine levels etc. to see / prove that the immune system was overactive, in this...
Hi - I've just got back from a holiday & I think AfME are probably on the festive break now, so not sure i can do much to influence! Whilst in...
Just read this. I see that Live Landmark @Livelandmark has retweeted @cfs_research 's joyous tweet that NICE will not change the guideline...
Hi Marge - yes you're right - we are going to make offers now, having gone through a rigorous, unbiased, anonymised process of selection of all...
Hi Hutan. thanks! I've been on the CMRC patient group since its inception almost 2 years ago now, and we are as focussed as ever on getting /...
Ah my embarrassing appearance. this was Sept 2017, last year. I had had an (unrelated to ME) illness, and an injury (requiring surgery), & a...
Hi - five of those named are still on the PAG, yes, but we're looking for about 5 new people - so do apply! I personally am off to London...
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