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Apologies, I phrased that rather badly. I certainly didn’t mean to dismiss that approach. But I do think it would make sense to wait until we see the DecodeME results before starting a big effort to generate new hypotheses from careful observation. I’m hopeful those results will be published in...

Unfortunately, going down that route is of starting observations and hypothesis hasn’t got us very far. We have the prospect of DecodeME reporting fairly soon, and, hopefully, that will provide some causal clues. It will also provide evidence ruling in or ruling out other hypothesis (Even if...

Thinking about it, I’m not sure we’ve been very good at doing that as a community. The push for a big GWAS (Partly fuelled by opposition to mega) produced Eye catching numbers and support across charities. I think this is a one area where we are hobbled by having lots of charities and...

Don't forget they did a lot of challenging of the evidence review before NICE made and published its new guidelines. Its head of evidence review got involved and endorsed the findings. None of the objetions raised above seem to address the core issue of using subjective outcomes in unblinded...

"Members of the CFS group must have met both of two criteria: 1) they must have answered “Yes” to the 2019 UKBB pain supplement questionnaire question “Have you ever been told by a doctor that you have had Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (M.E.)?” and 2) they must have...

Haha, maybe! I guess we both wish that your stint hadn’t dragged on (on and off) for 30 years.

I like that, and it’s very poetic

Thanks, Rob. We do. And Just thinking back to what Chris did then makes me tearful.

All bias aside, I think this is a powerful and persuasive article. Chris has been a great friend, and we have had many good times over the years. I'd like to share one story about how he helped me. In 2000, I was bed bound with hardly any energy to talk, and living back with my parents after...

Unfortunately, this study uses ICD-10-CM code R53.82, which is for Chronic Fatigue. That probably explains the incidence of 0.2% after 12 months for the "non-covid" controls (tho that just means no positive covid test recorded). Way too high for ME/CFS. Also, they don't check if the chronic...

I think that defining ME/CFS as a syndrome like this is a great idea, and could help research as well as clinical practice. If we are talking PVFS (rather than PVF), I'm not sure if it is different from ME/CFS.Mulitple survey studies find around 2/3 of people with ME/CFS report infectious onset...

I think so. The research results were first described two or three years ago, But it’s single cell RNA sequencing from the right authors and involving a cohort before and after a maximal single exercise test

Does anyone know how this compares with the much larger and probably more rigourous study by Andrew Gelman(?) in the Maureen Hansen group? I seem to remember that one came out with a surprising finding it it was all about monocytes. Sorry, I’ve got a migraine, no chance of link

Thanks. I had the familiar sinking feeling of Realising that I written quite a long and thoughtful post on that thread critiquing the pre-print. It was only last year :-(. But if that was it, it doesn’t amount to much and makes you you wonder where all the hype was coming from. I know...

A couple of years ago, the news from Dr Prusty suggested they were close to a breakthrough based on EBV and mitochondrial fragmentation (the science was beyond me). Does anyone know what happened to that? Much of this sounds like a new venture.

yes, I doubt it was a great diagnostic questionnaire. But to get reliable incidence or prevalence data you need to have robust diagnosis. That means competent doctors above all.

I remember discussing this study, possibly on Phoenix rising, when it came out. Wish I could remember what we concluded! Though from the abstract, the fundamental flaw is that, even though this is part of a prospective cohort, they rely on an email questionnaire for diagnosis. The point about...

I agree that people with ME could come under more pressure (though all the debate and proposed legislation focuses on protections). We also know that too many people with ME choose to take their own lives, including members of this and other ME forums. This is awful. We need societal and...

Thanks for the great analysis, @Hutan, as usual. Like you, I like the idea of traditional medicine helping, but don’t have the energy to read something like this.

Summary of big data studies: sex ratios and percentages Links & Notes Bakken, 2014 National Patient Register (NPR) Valdez, 2019 50m with active insurance, multiple providers, SE USA. Uses ICD-CM 9&10; different from Euro ICD usage Hilland, 2022 NPR, after 2014 national ME/CFS guidelines inc...