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Thanks for all the helpful comments. I will just recap some of the strengths of the study, which I think addresses some of the issues here, but not all of them: 1. The community screen followed by a medical workup is a well-established and widely used methodology for measuring prevalence. 2...

I realise that everyone might be losing interest in the study, but I would really appreciate people's thought on why prevalence for children in this study is much higher than similar studies have found for adults. Perhaps the most surprising finding of this study is that the prevalence rate of...

Thank you, @Tom Kindlon, this is a very interesting approach and a fine bit of work. It does seem to lay to rest the idea that “the experts have spoken and the one true definition is ICC“.

Comparison of phone contact/response rate for the new Jason study versus earlier CDC study Summary (UPDATED): the earlier CDC study was carried out at the time when people were far more likely to pick up the phone and had a screening rate of more than double the Jason study (21% versus 9%)...

Thanks for the usual smart analysis. 1. Good point about people who know someone with fatigue being more likely to take part in the study. For accuracy, 43,000 people answered the phone and 20,000 were excluded as had no kids or were a business. Of the remaining eligible 23,000, 5600 took part...

It is an interesting finding, but it is from this particular study. I don't think it's a consistent finding across the many studies we've seen to date. Judging by the language used by Maureen Hanson and colleagues in the conclusion, they are not betting their houses on this being a critical...

I am relying mainly on the comments above (thank you) and the authors’ conclusion, but the paper seems to be saying that looking at the blood metabolomics in the way that has been done to date, by a variety of researchers, has basically drawn a blank. That also means, if I've understood this...

Seriously, how do you dig out this information, let alone grapple with it? It is so complex/mind-numbing, yet also so important. Thanks for your continuing vigilance and work.

I’d like to add my thanks and congratulations + DX. This is an incredible achievement especially since some people at WHO clearly wanted ME/CFS to be included under bodily distress syndrome, which surely would’ve been very bad news for patients. I realised early on that I would never master the...

7,500 people have now signed up to support the study. Thanks, everyone. Still time to join in - closes end of Tuesday 21st, just over 48 hours from now.

In case the tweet isn’t showing for anyone, the signup total is now just over 6000. That’s pretty impressive. Getting close to 10,000 would be awesome.

Questionnaire conundrum Good discussion on the merits and pitfalls of optional questionnaires I would add to that extensive experience/results from non-profit marketing, which shows that giving people more choices/options reduces response rate - effectively people are more likely to be put...

Thanks for the blog post likes and thanks for sparing my blushes by not pointing out that I had used a picture of DNA from a parallel universe. The DNA helix spirals with a clockwise (right-hand) twist, not anticlockwise (as a researcher pointed out to me). It's now correct in the first post...

I expect many people here have already signed up, but if you like the blog, please share widely. I think the figure is approaching 5k sign-ups. With 2 weeks to go, we could get 10k. Thanks

Sign up! Your support could help win funding for a game-changing ME/CFS study January 8, 2020 Simon McGrath Comments 0 Comment Researchers and patients are about to submit an application to the UK’s two big medical research funders for a 20,000-patient genetic study. The team want people...

Thanks, and thanks for the helpful questioning of this estimate of the patient community. In terms of estimating the patient community, the key question is probably "how big is the 'silent group' that is linked to the patient community but not counted by likes of either of the two main...

If the UK patient community is 40,000 people, what does that mean for recruitment to the GWAS? In marketing terms, including non-profit marketing, getting 50% of any audience to do anything is a very tall order. Assume we can persuade 14,000 people with ME (40% of the UK patient community with...

My estimate of the size of the UK patient community - feedback appreciated The UK online patient community, loosely defined, might be 35,000 people, with perhaps another 5000 beyond that who can be reached through ME/CFS groups and charity member mailings. So 40,000 people with ME in total. (I...

Some comparisons with the GLAD study, which I think illustrate why reaching the target will be so hard, at least recruiting in the UK: Key numbers 1 in 3 people have ever had anxiety or depression, so the GLAD study needs to recruit less than 1% of its target audience. In marketing terms, this...

Happy Christmas and thanks to @Chris Ponting,@Andy, Sonya Chowdhury and all members of the Public Patient Involvement Group who have been putting in epic amounts of work to try to make this project happen. Above all, thanks to all the above for engaging with the patient community in a real and...