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They did! – if that replicates in decodeme data, that will be quite something. If it doesn’t, it’s more questionable. Note that GWAS does not use pathway analysis so wouldn’t be expected to make the same findings as we see here. But someone else can apply pathway analysis to immune pathway SNPs...

page (sorry, can’t remember whom): Skeptics with ME/CFS ? Skeptic is a great word to have in the title. Your blogs are brilliant because they consistently challenge the status quo with brilliant analysis and explanations of biopsychosocial and biomedical research. I believe that mediocre...

It’s an interesting finding, but 50 patients is a tiny sample for genetic studies of this type. DecodeME data should be available sometime next year on 20,000 people and around 900,000 SNP‘s. I suspect that will include at least 10,000 immune genes

He seems to be saying the ME/CFS is an unsatisfactory fudge combining two different views of the illness that isn't well understood. Whereas you seem to be saying that it is a helpful fudge, divorcing unproven causation from symptom-based definition, helpfully acknowledging our ignorance as a...

I agree there is overlap between PVFS and ME. However, I think there is still evidence connecting ME with infection (even if most post-infectious cases are not ME/CFS). For instance, I think 17% of DecodeME subjects (all with a diagnosis) reported their illness began with lab-confirmed viral GF...

This is an excellent critique. You can sense the authors frustration that EUROMENE had already published a protocol exactly for doing this kind of research. Patient critiques of GET and CBT were built on robust science, and that’s why they proved relatively effective (because it’s so hard to...

I've only just started reading this, but what an astonishing study. On the surface it is great methodology, covers the real world beyond clinical trials and focuses on objective outcomes. If it does what it says on the tin, it should prove very important in understanding the impact of the...

precisely. what the CDC graph shows is that the rate for people in their mid 60s is much higher than those in their late 40s. We look at the Norwegian data, the best we have as it’s from a national health system, incidence falls dramatically from late 40s onwards. That is not consistent with...

Unfortunately, that is not a reliable way to find true cases: 1. It's likely to bring in cases of people whoe were told they had chronic fatigue, and there is no independent validation of diagnosis, even of a subgroup. 2. Their prevalence curve indicates that ME/CFS becomes much more common with...

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...