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Mean number of steps/day = 5679 SD 3332 (sic) (Sorry, I've run out of steam)

Thanks to a member for access. A Turkish team So, the question I have is how relevant is this to ME/CFS type illness. In the introduction the authors seem to be suggesting that the long-term (ME/CFS-type) symptoms are associated with ground glass opacities in the lungs. Uses a measure of...

Not even proof of that. The main PACE trial paper shows that 160 people were in the GET group at baseline, at 24 weeks there were only 150. I assume you are talking about differences in fatigue as measured by the Chalder Fatigue Questionnaire and physical function as measured by the SF-36...

I don't think they are looking for detailed rationales. Maybe just a suggestion and a sentence or two and a link to one or two relevant papers as background?

My grandfather was gassed in WW1 and suffered long term health problems following the event. Although, I should add, he was a lovely man with no psychological issues that I was aware of, remarkable really considering what he went through. His diaries of the war recount times when people were...

I know. After seeing Eddie's much more accomplished effort, I suddenly became concerned that I had misunderstood SNT's post, and that he had also made a picture up for our entertainment. So I actually had to click through to the paper to see. And there it was in all its awfulness. And even...

Yep, that picture gets my vote for the S4ME 'most inane illustration of the year' award. Seriously? This is from a cardiovascular medicine expert from Stanford? What, is this some new germ theory where it's possible to outrun the virus? Or confuse it, by constantly zigzagging? Let's forget...

and for background reading: ______ Lipid Droplets and the Management of Cellular Stress, 2019 Abstract Lipid droplets are cytosolic fat storage organelles present in most eukaryotic cells. Long regarded merely as inert fat reservoirs, they are now emerging as major regulators of cellular...

please do

I'm not sure about putting it out on twitter, I'm not sure about their capacity to cope with lots of submissions. Maybe just leave it here? Or, contact Vicky to clarify?

team from La Trobe University, Australia, including @DMissa sounds promising

No, I wasn't claiming individual special circumstances. I think anyone can send feedback in.

Thanks JTJ I've read the threads and quoted threads for as long as I could. The review looks truly awful, in a multitude of ways. Here's some of the content for people not on twitter.

I got this very nice reply to my suggestion that they extend the deadline on the process: So, further feedback can be sent to MECFSResearchRoadmap@ninds.nih.gov over the next week or so.

Thanks to the people in the ME/CFS community who helped George with the content, including members here.

Jeannette Burmeister's Twitter thread: Take, e.g., this 2013 Walitt opinion paper (links in last tweet, published in Nature Review,) a vile propaganda piece regarding fibromyalgia & myalgic encephalomyelitis: Culture, science and the changing nature of fibromyalgia. 2/ My focus here is mainly...

This is quite a complicated study, so it takes a bit of understanding. I'm not quite there yet. Post-Covid hospitalised older cohort I think the main problem with this finding, as with so many others to do with brain function is that the people with a disease state are having an altogether...

Fantastic thoughts @Ravn I too have been wondering if this might be something World ME Alliance might want to run with. This is a nice idea - it maybe wouldn't need to be part of the first work, but a regularly updated recommended toolkit would be a great way to direct researchers towards...

Oh, that reminds me, a related issue is storage of the data and reuse for other studies. There should not be an assumption that the participant is okay about their samples or their data being used in other studies, without them giving express permission. I've seen researchers wanting to...

I don't think you have heard what people have been saying - there has been plenty of bad non-BPS research done on ME/CFS, and that harms us too. I don't think that asking that researchers only draw conclusions that are warranted by their data is unreasonable, nor is it only targeting BPS...