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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.

Um, agree with all that. Yes, 10x higher in Cornwall than in the lowest areas. This study found that nearly half of GPs say they find ME/CFS hard to diagnose, and this questionnaire could help a lot with that. Sounds good. My health means I can't take things forward myself, though. I think...

I should probably have posted this earlier as it's relevant to some of the comments made above. What other PEM questionnaires are there, and what questions do they use? We have the Jason and Chee 2025 paper, and it mentions several other scales. The NIH is developing one, and @Bivoxmentions...

I;ve started a new thread focusing on a potential new questionnaire to identify PEM Should we initiate development of a new, short questionnaire to identify PEM (to aid diagnosis)? Thanks to everyone here who has contributed to the idea, including @Trish @Kitty @ME/CFS Science Blog @Bivox

Relevant data so far on which other illness do or don’t have PEM We know next to nothing about the existence or extent of PEM in other illnesses, despite it often being described as unique to ME/CFS. The term was coined by medics for the 1994 CDC/Fukuda criteria because they knew of no term...

I think it would help PwME if we had a short questionnaire that does a good job of identifying postexertional malaise (PEM), the cardinal symptom of this illness. It could be useful in two ways: 1. Doctors, especially those in primary care, could use it to help diagnose people who have ME/CFS...

Interesting. I haven't looked to see if any of the genes highlighted here match with DecodeME findings. I can't access the CFS page as it doesn't support mobile browsers. How many CFS cases of the reporting from UKB? There are several different UKB definitions available, I think amounting to...

Yes, and it's a nightmare to untangle. The DecodeME analysis restricted itself to people with the white European ancestry, which simplifies things – but not a lot. One reason why HLA analysis is so challenging – population stratification HLA varies enormously even in White Europeans...