Search results

I think that is a fair point, given lack of hard evidence of high levels of OI. Though I like the concept of orthostatic intolerance when it is treated solely as a symptom without the questionable haemodynamic claims. I like the simplicity of the IOM criteria: Substantial functional...

PVF(S) & ME/CFS from the paper @Jonathan Edwards "The concept of ME/CFS is not focused on a specific agent... What remains unclear is to what extent the majority of cases of post-viral fatigue resemble ME/CFS or are more like the fatigue associated with conditions like rheumatoid arthritis...

It would help to get a representative sample: maybe the MEA could help get a bigger one. I think we would need to look at hours recumbent (or other measure) by severity category.

I think it would be very valuable for this to be published in a well-read medical journal (i don't know about Queios). It's the kind of clear thinking that should inform the medical debate.

I’ve always been struck by how this was a strange and pretty common symptom. It doesn’t seem important in its own right, but maybe it tells us something important. my answer of “other unpleasant symptoms”, isn’t very informative. What I actually experience is a hangover coming on pretty fast...

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.