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Yeah, I needed either a downstairs loo or an upstairs kitchen! The annoying thing is that it was a Victorian house that still had a big outside closet on the end of the kitchen offshoot, but although the water supply was still there, the toilet had been removed long before I moved in. I wanted...

Mine did make it significantly harder to get anything bulky up the stairs, including the vacuum cleaner. If I'd needed a new mattress or piece of furniture, I'd probably have to had to get an engineer to take the chair off (the call-out fee alone was £120). It also made it harder for other...

I can see why he wants to describe it properly. It could be important, and if it turns out he's made a fundamental discovery, he deserves to get the credit. But why not just wait for the conference? He could have used it to give the heads-up that he may have found a link between ME and PASC and...

Odd, isn't it? I do understand it, given the history and the fact that those running it might be ill and have no capacity for direct engagement, but it still feels ... unusual.

To me, the most interesting part is the afternoon of Day 1. It's still three and a half hours, but there's about a half-hour break. What I've done with online conferences in the past is to listen to the first few minutes of each presentation, and see whether I'm taking in what the person's...

The budget end date was 2019. Might that suggest that most of the practical work ought to have been completed by then and presumably the rest of the period was analysis and reporting? TBH, I don't really understand how research funding works.

That's a heck of a journey in a quarter of an hour! I do hope it's a bit more than a theory. We've had enough of them to fill Beaufort's Dyke and we're still not much wiser.

That is really disappointing. It would be more understandable if a smallish patient charity couldn't justify the processing costs for another 12 people until they knew whether it was a worthwhile avenue, but the NIH?

Hear hear! It's like expecting to teach someone to drive from a book. I meant to mention this last night. This focus on fatigue and brain fog always seems a red herring to me, as we're almost never clear of them even on our best days. I'm not convinced they're as meaningful as doctors seem to...

It is so hard, and few of us ever really get it right. But I think you do eventually develop a sense of which signals you have to pay attention to, which helps navigate it a bit better. I tend more to think about how today has actually gone, so that I can plan what not to do tomorrow. I can't...

That sounds like quite hard work? I think my strategy is the opposite, in that most of the time I don't think about it. I'm too taken up with other things. It's more the little feedback signals: did sitting down for a rest half an hour ago help? If it did, my back brain might prompt me to get...

Yes, it is hard. I've been ill since 1976, though, and that long experience is part of it. It's also the case that I'm retired, live alone, and am not severely affected. The absence of ongoing, difficult-to-calculate energy consumption that's required in a shared home must make it more...

I tracked mine for a long while, first on a Fitbit and then on an Apple Watch (you're right about the latter possibly not being right for you, as you also need an iPhone), and all I've concluded is that the trend of my resting heart rate on waking goes up noticeably when I'm not well. It doesn't...

This seems to be the nub of it. If it asks whether a proportion of patients have these symptoms, and passes thorough ethical review, and recruits its subjects with full informed consent, and pursues the question using validated techniques, and reports its findings transparently, it qualifies as...

Oh, that's good to see. Last time I looked, I couldn't find the study on their website, even searching for it by name. I think they only draw from particular registries, though, and there might be a technical reason DecodeME wasn't there.

But on the bright side, anything endorsed by Dawkins is statistically more likely to be dropped like a dead rat. Probably.

It would be great to come up with a set of brief but telling activities, that could be sent out as prompts to people at random times during the day and early evening, asking (as long as it's safe and feasible where they currently are) to do X, Y or Z as soon as possible. We're all so used to...

I feel a bit useless on this, really. I'm not active on social media (I've done as much as I can, but if you never post no-one follows you), and outside of this forum all the active online and face-to-face networks I'm involved in are wildlife conservation or music ones. I think I've coped with...

Several are in use for Covid, although not commonly—I know this because I've been "identified" as someone who might benefit if they got infected (I've dodged it so far). They're also sometimes used for 'flu. I suspect most people in the UK will never be offered one, because their use is...

I think there's likely to be a lot in this. There's also arguably a good clinical reason for keeping the two separate, at least on people's medical records. Categorising/coding the two conditions for statistical and resource allocation purposes, and treating/managing them are different issues...