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This is helpful, and I like the "hours with feet on the floor" question. But without knowing severity, it's hard to judge the relative important of a symptom to someone.. I wonder if we need a measure of how much a symptom impact on someone (which is severity independent to a degree). I suspect...

That is an interesting feature. My starting point is that not only are cognitive problems my most disabling symptom (in terms of what I want to do, though my physical symptoms are in some ways more severe), but that over 90% of PwME report having them. And I had assumed that it was a major...

Great idea. I think it's a fascinating study, but too small, and I'm not sure the stats are totally sound due to multiple comparisons. Curiously, a much bigger, EBV-only Sydney version of Dubbo was planned but never happened. Even though Dubbo is probably the most highly cited...

Thanks for expanding on PVFS vs ME/CFS. Dubbo looked at changes in symptom pattern using the SPHERE questionnaire that captures psychological and physical symptom: they used factor analysis to reduce these to 6 domains 2 they felt captured acute illness: “acute sickness” (including items such...

@Jonathan Edwards, it's up to you if you reply, but I wanted to check you had seen this post (quoting the most relevant bit). Thanks

I appreciate that. At the same time, I had the impression you were were describing the concept of something by focusing on the symptoms that you feel Best capture it. I’m not sure the PEM plus OI are the best way to capture what I feel I have. Of course, people with ME experience a vast range...

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...