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Good question. I had assumed that was part of the study. On Twitter VP said he was using several different controls, so I assumed it would include the obvious.

Just to expand on that lay answer slightly (covered in the technical answer that followed): Whole genome sequencing reads all 3 billion DNA letters, as the name implies. GWAS reads only around a million letters (one out of every 3,000 letters), but these are the letters that most frequently...

Commentary Nutshell: The study found that 89% of ME/CFS patients had symptoms of orthostatic intolerance in everyday life, such as feeling very tired or lightheaded on standing,. Almost half of these had classical signs of orthostatic intolerance, unusually low blood pressure on standing or...

I’ve just watched the video and don’t see it that way. I thought this was a fabulous, positive piece that explains what the illness is like, addresses the prejudices that so many people still have (unfortunately) and leaves a strong impression about how bad the illness is and how much Lorna...

Completely agree. I am increasingly irritated by researchers hyping their work. Apart from generating false hope, the field is never going to make progress unless researchers are more honest about what is really known, what is merely hypothesis and what is actually a dead end. By contrast...

Prevalence: Jason versus Crawley I have gone through the Esther Crawley paper and its findings are very much in line with the Lenny Jason one, showing relatively high rates of ME/CFS in young people. The finding that the cases from this surveillance study were less severely affected than those...

Thanks for the blooper spots! Migraines for the last 4 days so just pushed this out and appreciate someone helping mop up. Very interesting point. Would be useful to get the view of a young people's charity eg Tymes Trust on the prevalence estimate. For those that do social media and want to...

Leonard Jason research finds that many young people have ME/CFS A new study finds that 0.75%, or 1 in 130 young people, have ME.CFS. That's a lot of people living with the illness. Only 5% of those diagnosed with the illness already had a diagnosis. Prevalence increased rapidly as children...

A simpler version (not in the paper): 295/10,000 = 3% of youths screened were possible cases of ME/CFS 42/165* = 25% of possible cases were diagnosed as actual cases 3% possible cases X 25% are true cases = 0.75% prevalence *Not all of the possible cases went to the clinical assessment

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.