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I wish I knew more about when to discard them. I use 3M N95's, and they're expensive, but I only use them for about five minutes at a time. I don't know whether it's total time in use or time since opening that counts, or whether, if you leave them for ages, they reset to be good as new.

But I suppose there would be all sorts of confounders in a cross-sectional study so we'd need a prospective one. Anyway, I think I may be derailing the thread. Maybe we should start another one if we want to discuss this particular sub-topic.

Actually, wouldn't DecodeME have this data for 25k people? @Simon M

This is fascinating: I'd never considered that we should focus on early-onset cases. Ron Davis focused on the severely ill to get the biggest ME/CFS 'signal'. I wonder if early onset and severity are correlated and if not, why not.

What sort of drugs would be involved in T cell immunosuppression, and how horrible are they?

I didn't think viruses could affect your genes. Is that because I've only read the Ladybird Book of Genetics?

I remember reading (in an Action for ME magazine, I think) about 35-40 years ago an account by a man of his wife with ME whose hands kept contracting so badly that she had to have her fingers broken. I may be misremembering that, and of course she may have been misdiagnosed with ME or the hands...

:nailbiting:

I love that question, though I don't know the answer.

But there are PwME who never make it to the clinics or get involved in social media. The ME/CFS subset of LC is larger than the people in those places, surely? (I still have the impression that we are talking past each other a bit but that's the joy of the Internet.)

We seem to be epically at cross-purposes! I'm not suggesting that the ME/CFS subset of LC is typical of the whole - I don't think anyone is. I'm not suggesting either that PVF should be merged with ME/CFS, or that any of the criteria for ME/CFS should be removed to identify an ME/CFS subset of...

Certainly Long Covid is a very broad thing but I had thought that it was well established that there's a subset who fit ME criteria. Is that not the case? I'm wondering if we're talking at cross-purposes.

That's my point, though. If a junior researcher can't become a protegee, they've had it.

Doesn't being able to find odd bits of money depend on being allied with someone in a senior position who can access those departmental pots and apply for grants, though, which is something that people on research contracts can't do? Unless a researcher can glom onto someone senior with a...

Have the MRC never been confronted? People have been complaining forever about their mad decisions and irrational rejections by BPSers, but do you think those complaints weren't necessarily justified?

That's the thing, though - you had jobs. You were staff, not researchers on short-term contracts, scrabbling for grants to stay in the field. You could do your research on the side. Also, you may have been unusual in working in an area that didn't need much money spent on it. DecodeME, for...

I agree that those samples would be the more severely ill but is there any reason why a different proportion would have ME-type LC than at lower levels of severity? (Just thinking aloud about whether there is any way to rescue some useful information from these studies.) I don't think that the...

I'm less keen on a general post-infective illness group because it will be much wider and include things probably very un-ME-like. As far as whether we would be wise to join forces with Long Covid, it seems to depend rather heavily on what proportion of PwLC have ME, and we seem to be all over...

Thanks, I'll have a look. I may be being too casual about this! I wonder if most PwME recover within a year or two. We can't, of course, assume it's high because we can't prove otherwise but this whole thing is really underlining what a basket case our figures are in general.

Was it the only one ever, though? The MRC have funded utter rubbish (PACE) while funding hardly any biomedical stuff, for decades. Were there really no other runners?