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I have watched the video now - what Dr Greally appears to be doing is like a mini-DecodeME (GWAS, sequencing, DNA, predictors of ME/cfs disease, etc), and he thinks they may get results in the next few months! Certainly interesting and could lead to better funded studies (as he mentions), &...

Interesting. Here's an example of BPS "researcher" Prof Michael Sharpe using the angry patient voice to confirm his own view that he & other "researchers" are being subjected to hostile attacks. Does this help or hinder our cause? Source (March 2019)...

I also listened last night, well done to all, and would recommend it too, as Ravn has said above.

Yes there's a Nurses for ME group, with members, many are Nurses with ME, and a logo, etc. You can contact them through the CMRC patient advisory group; I was a member of this until 2 months ago. cmrc.pag@gmail.com Shame that article in nursing Times calls it "ME/CSF so often...... <oops>

Thanks for the mention :) well, on my interview, as those who've watched it will see, there's no promotion of any quackery whatsoever - I ensured this would be the case before I did it, and Liz was true to her word. This latest one focuses on the work of Dr. John Greally, who I understand is...

This post has been copied to the members only In Memory forum Very sad to hear that the founder & director of Westcare, Dr Richard Sykes, passed away yesterday age 89 in Bristol. I talk about his amazing Charity, of course, in my interview; it's fair to say I would not be where I am today...

Hi Peter - thanks for the positive comments about my story, & really sorry you had a rough day yesterday & used spoons on my video :-( I did pace, and I tried to be good, but i wasn't *always* sensible, & I did pay the price numerous times. Overall tho, the only way i could accept it was the...

Thanks Sam, I did ask Liz about her motives, and they seemed sound, and I did ask specifically if she might use my story to "push" for anything / any "treatments" etc, and she said she wouldn't. So far she has been 100% OK with that; it's simply a recovery story with my experiences which (I'm...

I didnt' spell it out in my interview, but I believe that if you observe that you *can* get away with, say, 40 mins power walking, or similar, and don't get PEM or a crash, and your general well being doesn't go down, then it's good for you. (ie. better than lying in bed 24/7, which some of...

Hi - yes, PEM was always starting 24-48 hours after the over-"exertion". ..... rarely inside 24 hours i think. (and after starting, the "crash" would last anything from 2-3 days to 2 weeks; typically 5 days IIRC). 10 years? Wow, mine was about 10 days after the initial acute...

Hi, thanks - just catching up here whilst "working" from home..... yes, my onset (both of them, a year apart ) was absolutely viral. Raging sore throats. And =- PEM - no, I was not able to avoid PEM. My PEM was utterly appalling. In 1999 I got PEM all the time, without doing anything. After...

I agree. Sadly it all comes down to insufficient resources / funding for research. Not only am I 100% well nearly all the time, I actually know *exactly* how to make myself ill with CFS symptoms again (answer: climbing 3000m+ mountains when not acclimatised - it always makes me very ill, for up...

hi i- I am overcrowded right now, but try twitter maybe? https://twitter.com/PhilM64

Thank you very much! I have had three infections in the past 10 years that led to 2-3 months' illness, some felt a bit like PVFS but also chronic sinusitis. Some forced me back to no-exercise, but I'm super lucky that they all proved short lived & i was back to normal. I do fear viruses but...

PS. If anyone wants to see the 1998 Bristol hospital video that was made of me when sick (c.8 months in), there are excerpts here (less than 3 mins; poor quality from VHS). PEM is so obvious. It makes me shiver to think that this was a few months BEFORE my second, re-triggering acute virus...

Hi all - yes I'm on here but not usually active. Thanks for watching the video - appreciated. Adrian's point is interesting - one thing I didn't mention was that one year in (late 1998), I caught another savage (throat) virus and i went VERY downhill immediately, and it cost me (I think) 2½...

Sent you a PM.... I hope! :)

- I can't seem to PM you, can you PM me? I'm not able to view your profile!!! cheers Phil

Hi - is that Mark Jeffers? I will PM you shortly, yes I agree this is really important , including the timing with the NICE guidelines change ..... cheers Phil

I've sent you a PM via conversations......