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Thanks to everyone who contributed to the discussion. This is my attempt to summarise the main points about possible explanations for the surprising graph shape. Possible explanations related to the illness itself. 1. A slow steady rate of recovery, so that over time, fewer and fewer people...

I can think of a number of possible explanations as to why the study finds a steady increase in the onset of ME/CFS, since the mid-80s to around 2015. But I am keen to hear others. My starting point is that I expected to see a fairly flat graph. Apart from any epidemics that produced the spike...

The remarkable onset graph - thoughts? The report includes a graph showing year of onset for 5800 people. This is a very large sample and the first big study I have seen that measures year of onset, as opposed to the much-less-useful year of diagnosis. The most striking feature of the graph...

This study might yet be consistent with ME/CFS. The average age in the study was 10.3 years. And a couple of studies for ME have shown that the gender map imbalance emerges at puberty. It would be interesting to see data for the gender ratio pre-/post-puberty. Separately, this study found that...

ME/CFS what I love to see is this applied to ME/CFS research. The obvious thing would be a cohort of glandular fever patients. I think there are 5 to 10,000 cases a year, at least, and they are fairly easy to identify because they all get tested. Over a couple of years you could probably recruit...

£18.5 million awarded to new research projects to understand and treat long COVID The NIHR and UK Research and Innovation (UKRI - the MRC is included in this) have funded four new research studies to better understand and address the longer-term effects of COVID-19 on physical and mental...

given that the study made 24 comparisons and didn't seem to make any adjustments for multiple comparisons, the single "significant" P value of 0.03 would suggest that there is no effect here.

my memory is rubbish, but weren't F and M looking at something like this at some point - or some researchers. Sorry to be so vague! I thought nitric oxide might be involved, as a vasodilator. It also ties in with the micro capillary work being done by the Open Medicine Foundation (though this...

Tiny study: To provide some insight into the molecular processes that underlie CFS, we carried out a study on 15 patients diagnosed with CFS and 15 age, sex, and BMI matched controls (Supplemental Table-2). CFS was formally diagnosed using the Fukuda Criteria (Supplemental Table-4)[19]...

Allow me to speculate. Presumably, NICE undertook some kind of evidence review in 2007 and found the evidence (pre-PACE, even lower quality) for CBT and GET to be acceptable. Whatever system was used in 2007, in 2020 NICE used the GRADE system. Interestingly, Cochrane had used exactly the...

Trying again: The expert testimony to NICE that took apart the case for CBT Professor Jonathan Edwards told NICE it should not recommend eitehr CBT or graded exercise as all the trial evidence for them used subjective outcomes in unblinded trials, giving unreliable results. He showed why...

Iniital thoughts Hats off to Lenny Jason and colleagues for pulling off and a huge and significant study. This is the first truly prospective study of post-infectious ME/CFS. The importance of prospective studies is that measuring what happens before the illness starts allows researchers to...

Other gems: Second, just because you believe that you cannot meet a high theoretical standard does not entitle you to demand that you be judged against a lower one. The fact that your research falls short does not make the theoretical standard less important. Nor does it magically infuse your...

Merged thread Re: Updated NICE guidance on chronic fatigue syndrome (Hughes, Tuller, Racaniello) Apologies if this brillaint rapid response to the BMJ editorial by Profs Wade and Turner-Stokes has been posted already: https://www.bmj.com/content/371/bmj.m4774/rr-4 Rapid response: Re: Updated...

I've only read the summary so far but this looks like fantastic work, raising important points and arguing for them eloquently. It must've been an extraordinary amount of work and I greatly appreciate it. Is there a document of the submission that I can print out? I struggle to read much on a...

The funding appears to include a GET and CBT long covid study: Rehabilitation Exercise and psycholoGical support After covid-19 InfectioN (REGAIN) University Hospitals Coventry & Warwickshire NHS Trust NIHR132046 - £1,191,977 Some COVID-19 patients continue to experience long-term symptoms...

This is a pretty cool study that showcases what GWAS studies like DecodeME can do - though the authors had the advantage of knowing that there are strong genetic factors influencing severity of viral illnesses. Amongst the authors are DecodeME's Dr Veronique Vitart and @Chris Ponting. Veronique...

There are lots of big international cohorts tracking large groups of healthy people for onset of new conditions (effectively the UK non-me biobank does this too). These can be repurposed. One in Germany was adapted specifically to follow covid and so I guess could easily be turned to long covid...

For all the social reasons, I think the biological one set out by Jonathan Edwards is the biggest reason that researchers stay away. It's a really tough problem to crack (though by no means impossible). I think that NIH Director Francis Collins was right when he said that solving ME/CFS will...

That potentially makes it the largest ever sample of mecfs peeps who have had a CPET. I would love to see The results for such a large sample. So far we’ve had a lot of small studies: what we need are large studies, or good meta analyses of small ones.