It is difficult, but having data on how patients view different proposed descriptions will help find the most appropriate solution.
690 now, nice work! Thanks to everyone who has prmoted this [MEDIA] [MEDIA]
@Tom Kindlon point that fitness was measured post infection is lethal to the argument: you can’t have an (unfixed) risk factor that occurs/is...
Thanks for Reddit share! We are now t 360 responses. 500 would be really good. Please keep promoting the survey - the more patients that reply,...
I’m sorry this wasn’t clear. You only need to have a single symptom moderately and at least half of the time to qualify for post exertional...
The poll is now live, read all about it here In the end we stripped it down to the bare bones to make it accessible to as wide an audience as...
Now on Facebook [MEDIA] And twitter [MEDIA]
@Leonard Jason Thanks again to you and Madison Sunnquist for taking the trouble to read so many comments and for responding. It seems to me you...
I hoped I'd flagged up the first point in my initial thread post. I understand that overwork word normally stop any physician going down the route...
That’s a good point. However, I think some caution is needed. Bruce Carruthers, who came up with the Canadian consensus criteria, had what I...
That’s an interesting point, but I think it’s dangerous to assume that PEM is indeed unique to us. What it is, I’m sure, is totally unlike...
Thanks to everyone who has contributed and I'm sorry there was so much info to wade through. So far there has been a strong positive response...
Consultation: Anyone can write in, anytime – up til Jan 31st deadline. Should we combine to offer comments on PEM? Anyone at S4ME have an opinion...
Background information that many will want to skip J Various extracts from the proposals that highlight what a thorough job the PEM subgroup has...
The way the symptoms are scored might give misleading results My other big concern with the questionnaire, which again relates to its accuracy,...
The NIH/CDC are deciding on the “common data elements“, CDE, that must be collected in all studies they fund. And they’ve asked for patient...
Nailling this down is perhaps the greatest challenge, and the most important area for patient input, in my view. I think there is much to do here....
I feel hope clashing with scepticism here. A new highlight notice with a strong focus on biomedical research and mandatory(?) requirement to...
i’ve checked and that UK study didn’t go ahead (at least not with a funding source I’d heard of) so the only other study around is the Watanabe...
This has me slightly mystified, but looks like a large-scale replicatioin of the brain neuroinflammation study that caused such a stir back in...
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