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I agree with what @Trish said about transparency, and I think we should wait to hear what they have achieved before passing judgement. I live in Wales where there is next to nothing in the way of services. ADDED that might Make things a lot easier for getting something appropriate set. From...

This is huge, though not anything we can expect to change in the short term given prevailing medical attitudes., likewise GP surgeries (unless there is a research breakthrough). My Dad had Parkinson's, and I think I was pointed towards Parkinson's UK multiple times by different parts of the NHS...

I'm not sure. How many people in the UK have been given a diagnosis? (150k?) The Samms/Ponting study last year using NHS hospital episode statistics for England stats found 100k PVFS cases. PVFS is the NHS diagnostic code most closely matching ME (there is another one for Long Covid). This...

I’d forgotten all about that, and I am proved useful. I’ve tried another number of devices and methods, and even the very expensive WHOOP device (which I had on a free trial) wasn’t very accurate on sleep stages. Certainly, it would sometimes tell me I was sound asleep when I was simply lying...

Insights is an excellent word to have in the title. And implies something interesting, and distinct, in the way that simply “science“ does not. On reflection, giving that your blog will usually be promoted alongside a specific blog title, and you also have the strap line, you probably could...

Yes! Or ME/CFS Science Searchlight I kept coming up with Spotlight yesterday. Which can mean scrutiny, but it can also mean limelight, which does not work.

I think that captures the essence of the blog. It's the sense of someone looking with fresh eyes, combined with astonishing rigour. I would also use the word clarity to describe it: the authors' clarity of thought and the clarity that leaves in the reader's mind. "Oh, that's what going on...

I like these. Examine can be ambiguous, implying in adjudication too much, but in the sense of a medical examination of a patient, that seems exactly right. A careful inspection of what is there, followed by drawing of conclusions based on what is found. adding these, which I think are similar

It’s very accurate But even though It’s very much my thing, it sounds very dull, which isn’t ideal for a blog title

I Understand why you think that, and I had the same thought when trying to come up with suggestions for you. But I encourage you to reconsider. What you do is unique, of exceptional quality and I think you can confidently claim to be doing something different (without worrying too much about...

This seems a good simple suggestion that removes the ambiguity while keeping a short and snappy title. And I’ve Struggled to come up with anything better that removes the ambiguity and is also catchy. added: “ME/CFS research under the microscope” might be more accessible, but lacks bite.

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...