Search results

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...

:rofl: :rofl:

Yes, that's what I wondered. In some respects I can understand why some GPs wouldn't take the diagnosis further than long Covid. They might think it's unlikely to help the patient or their doctors to call it by another name if there's a strong link to a Covid infection and the symptoms haven't...

Yes, that's a good thought. No idea of the answer, but it would explain something that looked very odd at the time.

I didn't realise there were so few questionnaires from people diagnosed after Covid. I wonder whether they're getting diagnosed with long Covid rather than ME, regardless of their symptom profile? The number of online support groups would suggest that at least some of these folk are proactive...

And presumably, nor will it link scoliosis with ME-like symptoms?

So she knows how to apply rigour, she just decided not to bother with it here by looking at the "evidence" her conclusions rely on.

It's quite hard to imagine another large-scale genetic study getting funded until this one reports, and the results have been studied by other groups. It might find something interesting that could be pursued with much smaller and more specific groups of patients and controls; or it might find...