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,...
Interesting. Here's an example of BPS "researcher" Prof Michael Sharpe using the angry patient voice to confirm his own view that he & other...
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...
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...
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...
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...
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 /...
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...
Hi - yes, PEM was always starting 24-48 hours after the over-"exertion". ..... rarely inside 24 hours i think. (and after starting, the "crash"...
Hi, thanks - just catching up here whilst "working" from home..... yes, my onset (both of them, a year apart ) was absolutely viral. Raging sore...
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...
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...
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...
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...
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...
I've sent you a PM via conversations......
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