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those are all good points. I'm not at all wedded to Norway or any particular country. The big advantage Norway does have is a well respected health and health data collection system. This would make it faster and cheaper to set up any study, but the most important thing is to get reliable data...

I agree that the priority is finding core mechanisms and I understand the scepticism over genetic studies But people have been following hypotheses for mechanisms for decades and we've got nowhere. Genetic studies are different because any DNA differences are causal, so provide better clues...

2. Getting serious about epidemiology We need to kneel down the epidemiological findings to date on prevalence and incidence (onset). Personally, I think Norway might be the ideal place for this because of its comprehensive health system and quality of health reporting (many cohorts, e.g...

Here are my two suggestions. 1. Prospective study: infectious mononucleosis (and Covid?) As suggested above. Think of this as Dubbo 2, recruiting people at the point of diagnosis with glandular fever/infectious mononucleosis. Then follow-up detailed follow-up for two years, checking people's...

As for any other rare variant whole genome/exome study, the aim is to find mutations with a big effect, usually affecting the protein normally made by the gene. That then provides a massive clue as to the underlying biology: 1. It could point to the biology in rare cases, tiny sub-groups of ME...

Agreed. Can you say how that would work? I've been tracking this in studies for decades and have never seen good evidence for anything much below 80%. Could you explain more? I think the Bakkens study had over 5,800 cases, taken from a retrospective analysis of the entire Norwegian health...

DecodeME is banking half of every DNA sample so that a future whole genome sequencing study can be done that will pick up these rare mutations. And I agree, spending some of the hypothetical buddies on this would be a smart move. I agree and include prospective studies of glandular fever etc in...

No, really: @Veronica Ashenhurst is a poet with severe ME. Her poem “Redefining Her” was chosen as a finalist in Health Affairs’ poetry contest. It’s a “found poem,” meaning that text from another source is used to create poetic meaning. Specifically, in writing the poem, Veronica restricted...

Thanks :) To be fair to the authors, they used an omics approach as a broad sweep (given how little we know), as a way of identifying areas to worth pursuing. The discussion section says: "our analysis discovered upregulation of chemokine/cytokine pathway genes in patientderived monocytes as...

3. Platelets: slightly off at baseline, normal after exercise Platelets are plate-shaped cells whose primary role is to plug blood vessels that are punctured to promote clot formation. The authors looked at the impact of exercise on the expression of individual genes (their main method), and...

2. The big story: gene expression indicates "primed" monocytes in ME Monocytes are large immune cells, and their role is to migrate to where they are needed and become macrophages. Macrophages engulf and neutralise invading pathogens like bacteria, viruses and even yeast. They can also Hoover...

Comments 1. Overview This is a small sample of only 30 patients (I'm pretty sure they took blood samples from 90 people with ME). Two findings stand out: for monocytes and platelets At baseline, they found big differences between patients and controls for monocytes. (They found smaller...

So, we are now up to 333,000 people reporting their daily activities have been “limited a lot“. It wasn’t so long ago this was around 230,000. Approximately 600,000 people have had long Covid for between one and two years, and half a million have had it for two years or more. What would be...

Welcome to the firm, Veronica, it’s great to have you here. Congratulations on making the “best of the Net“.

I had assumed that amber was a reference to the colour of a country on fire.

This tells us no such thing. They looked at 1,789 shared proteins and, quite rightly, corrected for the huge number of comparisons. That makes it very hard to find statistically significant differences and with n=15 they could only hope to find enormous differences. Not statistically...

Thanks, @Tom Kindlon, for being willing to put yourself out there. I'm sorry the illness has had such an impact on your life. I think the world has missed out on you, as well as the other way around.

I’m not familiar with the authors, but this looks like a very impressive study. I don’t know how much evidence there is for their hypothesis beyond “well, that would explain a lot”. It’s worth spelling out what they’ve done well t (and haven’t even done the study yet): – published a protocol...

ADDED I wasn't at the meeting, but a lot of this reads like a general commentary on genetics research from the author, not reporting/a summary of the genetic section of the symposium (for instance, I'd be surprised if any of the speakers spent much time on the 2007 Kerr study). "It is important...

it's a good point, but I don't think so. In fact, some of the ME patients also reported an MS diagnosis. I asked the researchers if this could explain the findings. They went away and checked the numbers and said no because there were few cases. Added: Also, in diagnostic accuracy studies of...