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Might be a bit too late, but I wonder if the ME Association would agree to do one of their regular polls on reasons for not returning a spit kit? Or whether a Twitter/X poll would be worthwhile? It would be interesting to know the reasons for some of those kits not being returned. Some...

I think the theory was at least partly inspired by the subset of people who've experienced overnight remissions. It's happened to me twice, and it is odd. That doesn't necessarily mean it's significant, and even if it is there are other potential explanations. Having since experienced the...

That sounds promising. It's the sort of thing a pharmaceutical company might be interested in when they've got a very expensive drug but a rather limited potential market. If it turns out there is a reasonable case to be made for a trial, it would be in their interests to get behind it.

I find that, as my physical health "improves", my brain symptoms always get worse. There is a small but real increase in my physical capacity sometimes, but there's an additional factor: my PEM threshold also rises a bit. This means I really can do a bit more, but I can also overstretch my...

I just snorted my drink down my nose at the thought of what the conspiracy theorists will make of this! Bit seriously ... it does sound extraordinary.

@MSEsperanza has highlighted one of Brian's modules: https://universityofgalway.instructure.com/courses/8163 It ought to be an excruciatingly embarrassing read for people who're paid to weigh evidence and inform policy. They had this crock of shite right under their noses for decades, and...

Thanks to David, Brian and Steve for a great article. It's interesting, isn't it, because in this case there has been no breakthrough discovery. The paradigm shift was the decision to read the evidence, and the scientific revolution is that there is no evidence. I half-suspect there's a...

And in other news, my PIP review form has just arrived—hoorahh! I don't actually mind the form so much, it's the hanging on the chuffing phone for three hours to demand an extension because it took a fortnight to get here after they texted to say they'd sent it. :muted:

The theory seems to go that cells which are in a metabolic trap can be released with the right stimulus. So if the right drug is identified, presumably it wouldn't need to be taken long term anyway. I don't know how likely it is that the trap idea is correct, of course, it is still a theory at...

I was advised by the NHS to test on at least three consecutive days if I started having symptoms, so they could make a judgement call about antivirals. I don't have any details about the reasoning is behind the strategy, but that's what they seem to be saying at the moment. The rapid tests are...

Oh, it's much much worse than that. It's 20 metres. It used to be 50 metres under the old benefits assessment, Disability Living Allowance/DLA. The idea behind changing it to 20 metres was that it would disqualify practically everybody able to stand. It hasn't had that effect because of the...

I was diagnosed with this, but as far as I know it's the form that only affects teeth. It was suspected when I started losing some of my permanent teeth in my teens. I'm going back decades, so there were no genetic tests, only X-rays. I've only become aware comparatively recently that there...

I've had the illness that long, but not the diagnosis. That took over 20 years. But by then I'd worked out I wasn't going to recover permanently anyway (I'd had remissions but then relapsed again), so it came as a relief to have a name for it. My auntie lived with the same symptoms for longer...

I think this is a good approach if you're able to take it. It didn't ever occur to me that the cavalry might be coming, and maybe that's been helpful in an odd way. I got ill in the mid-70s, and ever since diagnosis I've expected to live with ME for good. So I enjoy what I can, if I can, and...

Yes, I got a blank page with that because of the content blocker. It loads fine on Safari, though.

Presumably because they can get more research funding from government departments keen to look as if they're taking action to address long-term ill-health? From what I can see, funding research like this isn't much different to paying an ad agency to deliver a campaign.

A good day is a less bad day, as @Wyva says. It's being out in my powerchair, wondering at nature, somewhere with few or no other people. Or it's being able to go for a good swim at the leisure centre. A somewhat less bad day is enjoying the cricket or a book or a puzzle, and being able to do...

An idle thought: might some of the advanced thermal imaging techniques available now tell us anything about differences in muscle function between ill people and sedentary controls? From what I've read on the board, it seems to be quite difficult to work with and compare muscle tissue samples...

I think its heart's in the right place, but some of it seems to be lifted from practice that isn't necessarily ideal for people with energy limiting illnesses. Talking about SMART goals and role playing scenarios might not be very appropriate for someone whose illness is severe enough that they...

I had a really positive reaction to the original AZ vaccine (I felt great!), and a positive reaction to the Moderna bivalent. The Pfizer made no difference at all to ME symptoms, and the first dose might even be what triggered the bouts of atrial fibrillation I had for a few months. The second...