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I'm sure you are aware of this, but there's quite a lot of annecdote about patients having the initial trigger/infection, seemingly then on the mend for a week or two, and then crashing bad, and subsequently developing ME/CFS.

Well, he seems to be asking the right questions — notably there is a focus on PEM and why it seems so 'nonlinear' and why different bodily symptoms all seem to fail together, regardless of the form of exertion. I have no idea if his answers are correct, but I do think we need much more research...

There's also a complicating factor that some have a severe initial infection, usually lasting weeks, and report/class that as being severe, although to me that is something a bit different.

Gradual onset. Severe after 5 or 6 years. I know sudden onset occurs and can be severe, but it's possibly less common than many think. I'm not aware off the top of my head of any papers/stats for this.

Yeah agree. I don't really fall into that category.

"Ivabradine did produce a significant reduction in heart rate compared to placebo, but the lower heart rate did not improve POTS symptoms." This is interesting because I've argued this for quite a while, and it fits my experience with propranolol. It lowers HR but really doesn't do much else of...

I'm not letting anyone near my calf muscles.

I think it makes perfect sense and when I read in the abstract that they were using prior-day symptoms and not just objective biometrics, I knew that most of the prediction skill would be due to the prior-day symptoms and not the biometrics. And that is indeed the case: Image from @ME/CFS...

To 'save' money.

https://www.theguardian.com/politics/2026/mar/29/disabled-benefit-claimants-face-lower-payments-if-conditions-not-deemed-lifelong-charities-say Article by Francis Ryan about the forthcoming changes to the health element of Universal Credit. Mentions ME.

Now in press: https://www.nature.com/articles/s41746-026-02543-3 Note the title change.

Anyone know how they are testing for Lyme?

A reasonably good article on the BBC focusing on some Welsh patients and the situation RE care and specialist services. https://www.bbc.co.uk/news/articles/cpv8e71p3evo There's also a link to a BBC Sounds / BBC Radio Wales piece with patients and the parents of a very severe patient...

I would put money on one of that lot having been in contact.

It is mentioned that the BBC received feedback suggesting that the "potrayal of ME was too negative", and that one listener had writen in to suggest "there is treatment and crucially there is hope." Sounds very familiar.....

Oh I forgot you had a Google Docs. I hope you can make any changes if you agree with them. And thanks for fundraising.

Most people won't know what this is, but if included I would call it the '2021 NICE guideline for ME/CFS' This is a slightly awkward phrasing. I would rephrase as 'notoriously underfunded' or something to that effect. I would not just focus on welfare spending. The way this is usually...

You might know this already, but PoTS diagnosic criteria exclude othostatic hypotension and therefore blood pressure should always be measured when testing for PoTS. I don't know why people focus on PoTS more than OH. It would be interesting to know how prevalent each is in people with ME/CFS...

Ok, good. Well, it seems from a quick google that the answer is 'more likely'. And this is related to a known phenomenon, apparently, called polyautoimmunity (basically having two or more autoimmune conditions). The risk is higher because some AI patients have a propensity to develop more AI...

I think this is the question you are asking, and this page provides an answer: "Yes. Having one autoimmune disease slightly increases your risk of developing one or more additional autoimmune condition." (compared to the general population)...