Search results

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

this is new to me, and interesting. Having two age peaks is very unusual for diseases, and the examples are clustered, applying mostly to some cancers (mostly pretty young and pretty old) and quite a few autoimmune diseases (where there's more variation in the age of peak onset).

That's an incredibly helpful perspective, thank you.

This is really interesting approach, and I'm looking forward to seeing what you come up with. Just one question: are gene expression levels normally distributed? I thought they weren't, and if not, are Z scores appropriate? Thought I'd toss that in, but I am seriously out of my depth.

It's out there somewhere – not definitely published, but try this paper (1st 17 K questionnaireresponders ) https://pubmed.ncbi.nlm.nih.gov/37881452/

It's great to have some data on this,but the NIHS survey is highly questionable because if you ask a general audience if they have an ME/CFS diagnosis, you get an implausibly high prevalence rate (1.7% here - probably <<0.5% is true with a diagnosis). Luis Nacul did a follow up study on a Canada...

I'm not even beginning to keep up, but how is it possible to have more than twice as many double-refined signatures as cases?

There is quite a lot of evidence that severity of illness is important in the risk of ME/CFS post infection: 1. The Dubbo study (EBV, Q fever and Ross River Virus, RRV) found that the severity of initial infection was the only predictor of CFS at 6 months. 2. Peter White found that days of bed...

I certainly am, thanks. Unfortunately, there is precious little reliable data (and often no data at all) on rates of mono in different countries. We probably have better data in the UK than anywhere else, and it's not brilliant here

Is this cultural or geographical, relating to the prevalence of mono? But there is good evidence that mono is more common in teens, and as we know mono is a trigger for ME/CFS, it seems logical that higher rates of mono are linked to higher rates of ME/CFS in teens. But people may also be more...

That's fantastic. Thanks to you and to them.

Good to know ;-). I thought we also needed people studying the biological role of its protein product. It's great that a research team are focusing on a key finding from DecodeME. Do you know how the geneticists will be approaching this e.g. looking at gene expression or how its genetics varies...

Sounds promising, and the lab she works in sounds ideal. I'm also intrigued she's cofounded by ME research UK and the MRC. Are these the geneticists?

Thanks to Katherine for including a few questions in the survey that Audrey Ryback proposed. These aim to replicate and better some findings on onset age, onset triggers and significance of having relatives with ME/CFS (see this post and earlier ones).

That is extraordinarily generous of her, and not very accurate! I got the project started and had a lucky break. But it was when Audrey stepped in that things became seriously impressive.

I'm glad you think that. I am biased, but I've been stunned by the findings. Most of it down to Audrey (unfortunately, my health is lousy , so I've been able to contribute less and less as time has gone on). I think it's probably too soon to discuss publicly, though I'm glad you've seen the...

Indeed, but using that logic, and without making an exception of it, DecodeME is in the same category. I don't believe that's the case for the study or its cohort, because I think questionnaires can capture valuable information. I don't think these things are widely seen on the net, though...

It's good to have so much debate about the idea of a PEM questionnaire. I just wish my health allowed my health to get involved, but I want to make one comment now (more in the next few days if I can manage it). I think it would help if we brought in data to support or challenge some of the...

Yes, a decent de Unfortunately, the NIH group still endorsed the DPSQ as the way to assess PEM, even though it was clearly describing something for a different. S4ME made a sufficient the NIH arguing in vain that should start developing a better tool.