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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...

I'm not sure if I've understood your question. The group is selected based on those meeting the category at 6 months, e.g. S-ME/CFS at 6 months. The scores at baseline and IM (the single measurement point within 6 weeks of symptom onset) are the scores at those timepoints for those that end up...

Trying to work out the make up of the ME/CFS group (I) The story so far: Are the measures used to assess reduced activity levels necessary for ME/CFS appropriate? As the two posts above show, they don't seem suitable to separate those with ME/CFS from those those not yet fully recovered from...

I'm not aware of any examples where that has happened. Just hundreds of papers going nowhere. all of which is true. But none of it takes us any closer to getting answers about this illness. I'm afraid I've lost patience after 30 years and I want researchers to raise their game. They've been...

I appreciate the problem, but this approach has got us nowhere in decades, and I'm not sure that things will ever change. We need better science to make progress ,otherwise the list of weak biomarker claims will just grow. I've been ill for over thirty years and am desperate for real progress...

I would love to see researchers come together to agree standards for ME/CFS biomarker research. This might include minimum sample sizes, including a validation cohort, at least one disease control group and being clear on the degree of biomarker overlap between patients and others. We've seen...

@Jonathan Edwards PS the Andrew German/Maureen Hanson single cell RNA sequencing study also highlighted monocytes, I believe.

That's an interesting point. I had assumed that the vaccine was intended to stop EBV ever infecting; if it merely delays it, it would lead to more mono, so presumably more ME/CFS. And still people would get MS, just delayed. That big EBV/military study showed that EBV was a necessary step for MS...

UPDATED (with added clarity) Summary: Do the cases selected in the study appear to be severe enough to qualify for ME/CFS? For S-ME/CFS yes. But it's likely that many with "ME/CFS" do not: as they seem to have reasonable overall health, a significant minority don't have even have moderate...

I'm concerned that assessment of "substantial reduction in activities" has included those too mild to have ME/CFS, which would weaken the study if it is the case. The authors used thresholds and scales validated in an earlier study that compared accuracy of CFS cases vs negative controls, which...

So good to see this published. The field would be stronger if we had more work like this.

I'm working from memory, which is never a good idea for me. But I'm fairly sure that the 2022 study captured severity measures, so if they wanted to define severe ME/CFS , they had better ways of doing it. I'm sure this was discussed at length on the thread for the original paper