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And I think that might be true, too. It's certainly plausible that PEM is like a resurgence of the trigger. Many people (with post-viral ME) describe PEM as being like the viral episode that triggered their illness. So this Giza geezer (did he build a pyramid or does he bathe in hot water...

I think this is accurate, too. I have seen many pwME say this.

Severe ME needs to be scored on symptom severity, not a proxy such as 'meeting two or more sets of criteria'. Number of symptoms alone might not even be a good enough measure, because if those symptoms are all very mild, then even cumulatively, they might not amount to severe impairment.

I think it's a good idea. But the right people need to lead it and ask the right questions (as always). If PEM is measured too loosely, it will just conflate things.

These tweets may also be informative: Here it seems there's a thing called metabolic crisis or neurometabolic cascade in TBI and PCS. It may be this that people are calling PEM, and I'd need to understand what it is before I said they were the same thing. Dr Nicola Clague-Baker suggests there...

Looking through that thread above, I saw this tweet from Karen at Physios for ME: She notices a big difference between these groups of patients. So it may just be people using PEM to mean PEF or something else. But I'd be really curious to learn more, as understanding one might aid in...

I would need to see how these people describe their experiences of PEM to know if it's the same thing. I don't think exertion intolerance is necessarily the same as PEM. And, as we know, people use terminology loosely, or without having the same understanding as others. That said, it wouldn't...

The 2021 questionnaire looks like it's in alignment with the IOM and NICE 2021. So I think this could be used. Though, I'm not sure how it's scored, as that will be crucial. The key points seem to be covered, as well as some welcome additions, such as cumulative subthreshold PEM leading to...

Yes, I'm also in the 'pacing helps but isn't guaranteed' camp. Sometimes, the threshold of what we can do before PEM is affected by invisible things. That might be a cold, some dust, a couple of minutes' extra interaction with someone you weren't expecting, an unexpected bit of bad news, or...

Jo said it best. As far as discriminant validity goes, the research we had access to suggests that the four symptoms of PEM, fatigue, unrefreshing sleep and neurocognitive impairment when present together had the best rates of specificity and sensitivity. So it detects the most patients who are...

Out of interest, have you had a new diagnosis now, and what is it (if you don't mind sharing)?

PEM according to the IOM is basically the same as in NICE 2021, although some of the descriptions are in different places and we use our own wording. In essence, we described PEM as being caused by physical, cognitive or emotional exertion, and being disproportionate, often delayed and with...

The EHRC is a mess, sadly. There have been a number of politically motivated appointments at the top which has meant they haven't been impartial for a few years now: https://www.theguardian.com/society/2020/nov/30/politicising-ehrc-five-controversial-appointments

So in essence, what he's saying is that the NICE 2021 criteria should be the clinical criteria used by all (as it meets the requirements for improving the IOM he outlines)? Though, I should add, we describe PEM more narrowly than he does, so he may disagree with that (but I'm sure most...

Well, we warned this would happen. Those long COVID groups who held us at arm's length (or worse, joined in the slander) will only have themselves to blame. But maybe now, at least, they'll see the shared threat and pull their socks up?

IIRC correctly, they trotted out the 'cancer has PEM' thing during the consultation, but the reference they gave was for malaise in cancer. It wasn't post-exertional. There are a lot of familiar borrowings from various RC and clinic responses, so I would check the references--as a lot of the...

And most of the NICE GL was drafted before LC was a thing.

The whole 'the world isn't ready for this information' schtick makes me wary. Conspiracy theories and harmful medical advice proliferate in such spaces. My bet is that Discord is purging those alt-med spaces that encourage unsupervised drug use (or drug use of any kind). They may want to...

I think DwME are fine to state that it's a positive diagnosis (as opposed to a wastebasket diagnosis). I think earlier drafts of the GL used similar wording, if I'm remembering correctly. That was partly why there weren't exclusionary tests until the final draft (though that doesn't mean it has...

I agree that it shows all those things, too. And personally, I think the charity probably should do (and maybe has done) something about it internally. But I don't think they are likely to make it public if they do/have done, as it would only draw more attention to themselves. I also think the...