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There will certainly be some post viral fatigue cases in this sample. We also see the same pattern of age peaks in mid teens and late 30s it in DecodeME, which also recruited via social media but had a decent question to screen for PEM in addition to requiring a diagnosis. And the same pattern...

That's true in some cases, less so in some others, such as the Norway. They diagnose about 1,500 a year from a population of around 5 million (equivalent of about 18,000 a year in the UK). And we know from NHS data (Samms & Ponting) that there are 100k diagnoses in the NHS HES database. That...

That was what stunned us, and makes the case more compelling. The data looks very different for Sweden and Norway (the former has a much smaller early peak), yet all the countries have very similar peak onset ages. Yes, that's likely. But how would that selection bias produce such an unusual...

Please do post any corrections, And can anyone advise me on how to include small photos of team members in the original Wordpress blog? When I tried to add them, they appeared huge on phone screens. Thanks. DMs appreciated.

And so has a blog about it. (Blog thread).https://www.s4me.info/threads/blog-me-cfs-onset-had-two-peaks-which-may-be-a-clue-to-causes.49797/

ME/CFS onset had two peaks, which may be a clue to causes New blog. (Formatted paper. Thread) A new study strengthens the findings that ME/CFS is a disease with a highly unusual feature. Analysis of survey data on patients across Europe found there are two peak ages for getting ME/CFS, around...

What about the UKB Biomolecule study? ME/CFS ideal, but they did focus on those with the strongest case definition.

I agree that it's fantastic to have a negative results like this published. Right now, everything has been proposed, almost nothing ruled out. I know that Chris Ponting thought one of the benefits of.DecodeME , and making the data publicly available, was that researchers could use it for just...

That is telling. I don't suppose they have a sensitivity analysis that assumes that those who dropped out declined rather than stay the same as baseline? One of the laws of the Pace trial was that things he reported deterioration were assessed by "independent" medics (presumably independent of...

The Cohens D for the mean difference for the six minute walking test for the grade exercise group in the Pace trial was 0.2. And not significant for the CBT group. This looks better than that, but I don't know what the Cohen's D would be here. But the result is very different from the effect...

Thanks for taking a look - you seem to have responded with homework for me! Look forward to digging in to it.

It's likely to be a substantial contributor, but it doesn't explain the first peak. See figure 3E4 for DecodeME onset ages, infectious mononucleosis, other infections and non-infectious also show an early onset spike. And we also saw an early onset peak for non-infectious triggers in the EMEA...

Various corrected typing bloopers we don't have a good explanation for the dramatically different profile for the Netherlands. We think the diagnostic practices can be a big factor, e.g. comparing Norway with Sweden, doctors in Sweden are apparently reluctant to diagnose paediatric cases...

I think we were expecting to publish once they had a formatted web version. That is coming, hopefully soon. I'm sorry this is so inaccessible for you.

Well, it was certainly a brilliant collaboration, and thanks. My biggest role was in initiating the study, and that started with a lucky tweet. The Bakken study from 2014 found two peaks for incidence in Norway. And this is heavily cited, not least because it's a hard finding to explain with...

Anecdote and early follow-up of EBV/post-infectious studies (up to 2 years) indicate that recovery amongst young people happens in the first couple of years - once it is established, recovery rates are very low. What we do see in these studies that severity of the acute precipitating illness...

81% still meeting case criteria at 7 years is exceptionally high. Dubbo found a 25% drop off simply from six to twelve months. For the Katz adolsecent study, it fell from 13% at 6 months to 7% at 12 months and 4% at 24 months. So why the discrepancy? One possibility is linked to baseline health...

What's the true rate of ME/CFS post IM? (3: Dubbo) Dubbo (Hickie, 2006) Post-Infective Fatigue Syndrome and CFS post mono, Q fever and Ross River Virus Published rate 11% Fukuda CFS and 12% for Post-Infective Fatigue Syndrome, PIFS 35% PIFS for the self-report-only cohort (not clinically...

No. Diagnosis involves clinical examination, and was only done for those who didn't recover from IM. But it is an interesting point. The prevalence of ME/CFS of people under 20 (almost all in this stiudy) is probably aboiut 0.3%, and I doubt many of those are able to attend university. I would...

What's the true rate of ME/CFS post IM? (2) The three other studies I mentioned earlier all have ME/CFS post-IM rates of about 12%. But looking more carefully, they also support higher rates. 1. Katz, 2009 ME/CFS post mono in adolescents Published rate 13%, corrected rate 17%, Canadian...