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The 1990 Robert de Niro / Robin Williams film "Awakenings" was about the post-Spanish flu illness, they called it "encephalitis lethargica", where victims were like statues , but awake. Set in late 1920s/early 30s I think. There was an intervention - L-dopa?- which worked, until the chemical...

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 in the thread), and there was most definitely someone from AfME at Bristol #MM too, as i spoke to her prior to speaking to the reporter (who she also...

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 2016), and we are (now!) much valued by Prof Stephen Holgate. I am also a big fan of Keith's work. Anyone listening to the latest Gary Burgess...

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 2 years, here in Bristol, for more background/context. I met her in a cafe & was quoted in the first article. I urged her to watch Voices online...

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 badly, as JE states) towards the CMRC's goal of thoroughly researching the biology of ME/CFS. Andy - there were other supportive letters for the...

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 will be dealing with it. I can say that AfME's rep on here (presumably the staff member / volunteer who set up the s4ME a/c name) is too busy to...

Hi - I see the page https://www.actionforme.org.uk/living-with-me/treatment-and-management/ says "under review" (due to "emerging evidence"), but I agree it should have been updated by now. Can you supply a link to the GP "education" video, is it linked to from the AfME website? thanks. . .

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 early days, and I'm up to my ears right now with PAG work as well (that's the PAG to the CMRC) (just as well I'm currently unemployed, lol). But rest...

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 to the SMC, so was in a position to get their attention, & therefore get publicity. In fact, those he has contact with probably wanted to get this...

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 be kosha ME/CFS patients. Interesting at most, I'd say. But not deserving of the media blitz last (?) Monday..... IMO.

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 case, apparently not just after the int-alpha, but also BEFORE the treatment. Which i personally find quite interesting - ie. if your immune system is...

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 Spain, i did see a notice from AfME saying that they had concerns about the fact that this is clearly NOT a study of ME/CFS patients, and that the...

Just read this. I see that Live Landmark @Livelandmark has retweeted @cfs_research 's joyous tweet that NICE will not change the guideline committee ie. not "bowing to activists" Good to see which side of the fence certain parties are on. ...

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 the applicants. PAG members can choose whether or not to remain anonymous, that's their choice. I'm hoping we have several extremely promising...

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 / helping obtain funding for high quality biomedical research for the illness. As I pointed out! I had no idea what Lady Mar was going to say before her...

Ah my embarrassing appearance. this was Sept 2017, last year. I had had an (unrelated to ME) illness, and an injury (requiring surgery), & a house move (!) all in the weeks running up to that. So I wasn't best prepared. We no longer have any connection to Bristol University, i would mention.

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 tomorrow to attend the CMRC quarterly meeting there. Need to prep for this - I'm not in the same league as some of these (any of these???) scientists...