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in mice Danish article about this study with brief mention of CFS (which doesn't appear to figure in the study itself, assuming my word search didn't miss it)

Thanks @Sasha for getting the ball rolling on this and also for your summaries, very helpful to those of us unable to keep up. The summaries are pretty much all I've managed to read. From that my impression is that most of the discussion has been about what to produce as a priority, and how to...

I posted this in another thread but it seems relevant here

In the current environment I fear any declaration or similar coming from us or from our usual advocates would make little impact. Most likely it would be brushed off as just another example of deluded activism and then simply ignored into oblivion Maybe I'm too cynical but I think right now a...

A bigger problem is that many of these are already 'taken'. I just ran a few options with just ME through the search engine - analyseme, examineme, sci-me - all are being used (by non-ME websites). Using ME/CFS in the name largely overcomes that problem Another thought @ME/CFS Skeptic. You've...

I don't think having only ME in the name is a problem as long as ME/CFS is used in the tagline and consistently throughout the blog (as is the case)

I started off torn between change and status quo for all the reasons for and against already outlined by previous posters. So I did a small, entirely unscientific survey of people outside of S4ME 100% of respondents thought the current name meant you were sceptical about the existence of ME...

Thanks for the update @Andy I have a dim memory of Chris saying somewhere, can't recall where not so long ago, that there were disappointingly few external parties applying to access the DecodeME data for their own studies. Has interest picked up? If not, what can we do in the new year to help...

1) What are examples of anti-exhaustion drugs? 2) What protective qualities are they referring to?

The reason may be as mundane as availability bias. When researchers do their literature reviews they see symptom questionnaires - however inappropriately applied - used in other studies over and over and over and over... When those researchers then design their own study banal familiarity means...

Haven't watched yet Webinar for health professionals for continuing medical education credits https://myhealthhub.co.nz/navigating-the-complexities-of-me-cfs-and-long-covid-2/

Thanks for collecting all those links @MSEsperanza, having all the relevant discussion gathered in one spot is helpful. The Hinxton people may choose to not engage here but they could still be sneak-reading and be learning something from that. Engagement in some form would be preferable though...

Does anyone know more about this project? I've seen it mentioned twice recently, by Simon Carding and by Avindra Nath. The impression they give is that they want this scale to become widely adopted by researchers - which means it's important they get it right If they don't we might end up with...

Lynette Hodges' presentation (post #21) No data yet, the study still being set up & systems and equipment are being tested It will track activities of daily living and their impact in 50 pwME. Lynette outlines all the kinds of data they're going to collect from Actigraph LEAP watches &...

Agree. Huge data gap. To be clear, Nick stresses that they're far from capturing everyone and he doesn't believe the 0.06% is anywhere near reflecting reality. The problem is - once again - that we don't have any better data The idea behind the study appears to be two-fold. One, see what useful...

Nick Bowden's presentation (see post #20) Interesting talk. Lots of (preliminary) data to mull over However, this study demonstrates yet again how difficult it is to get any representative population level data for ME NZ has a massive research database called Integrated Data Infrastructure...

And another one, haven't watched

Haven't watched yet

Have listened some more of the video. Worth a look for advocates. Not as exciting as videos about the latest research findings but, and arguably more important, it has some thoughtful discussion about how to build stronger foundations and capacity to enable future research of better quality...

What I meant was that I can't find discussion about this particular group's Hinxton criteria which makes me wonder how much or what sort of patient involvement there was I do recall us discussing the principle of combining objective and subjective measures along the RA model. Here's hoping...