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I wonder if we might be slightly at cross purposes? It seems to me that making PEM mandatory isn't so much about defining ME as researching what causes it. You can't study a disease unless you're as sure as possible your sample has it, and for the time being that makes PEM essential. Nothing...

Equally there's no proof that some people with ME don't have it. Yes, of course it could be possible for the underlying dysfunction to produce few or no recognisable symptoms. But the fact that a theoretical possibility could lead to some people being excluded incorrectly still doesn't make it...

I forgot to thank you for the work you put in. As usual. :rolleyes:

Excellent analysis, @Trish. I might quibble with one word: Inhumane is a more emotional than technical term, and I might replace it with something like "poses an unacceptable risk to patients' health". In a some respects that risk is a category of its own, so another approach might be...

This. It's one of the reasons some illnesses are in a different category when it comes to the issue of information. Perhaps that's what needs to be communicated better to journalists. But how are the newly ill to realise the extent to which highly-qualified people talk absolute tripe on...

I usually swerve social media and only read the mainstream press, and they tend to report mostly on published trial outcomes. The difficulty for journalists is that researchers want to highlight success, so the release will focus on the most positive aspects. With bigger stories—a new discovery...

If you're anything like me, you lose the ability to approach from the garden gate. You start on the wrong side of next door's hedge, dodge round the back of the garage, trip over the bins, do a meandering circuit of the garden, eventually spot the gate, and then stumble up the path. You then...

Here's a live action shot of one being made.

Tri-balists, I reckon. There's always the old-fashioned one: trick cyclists.

I'm not quite sure how it'd fit in with the fact that most children born in Westernised countries from the late '50s onwards were vaccinated against poliovirus and grew up in societies where it was to a large extent eliminated, yet plenty of us went on to develop ME.

I always wondered why the glands under my jaw swell up when the PEM hits. They must be interfacing too hard.

It's funny how people with no medical training assume that a brain-mind-body interface is pretty much a given in anybody who's alive, isn't it.

It said on my bit of paper that it's been adjusted to take account of the Omicron sub-variants, so I imagine so. They're always going to be one or two steps behind, but it doesn't necessarily make a lot of difference.

Moved from the Long Covid in the media thread From @MSEsperanza From Germany's Kliniken Schmieder group: Annual report 2022 https://klinikenschmieder.pageflow.io/jahresbericht-2022-7b6c23d5-b0bb-4568-8631-37714506cc74#postlong-covid Machine translation by Firefox: @PhysiosforME –...

I can't even remember many groups systematically taking the really basic measurements (urine volume, makeup and frequency; skin & core temperature; sweat makeup; heart rate and variability; blood pressure & gases; blood sugar; stress hormones) whilst rested and then during the onset of PEM...

Yes, I mentioned that in my response. And that working from home opportunities are steadily being rolled back post-pandemic, and that not everyone has skills relevant to working from home (which is often computer-based), blah blah blah. I also wrote a screed about the mobilising factor being...

I didn't mean that it necessarily is obvious, but you know how things are sometimes so logical that it appears they ought to have been? Like the discovery of air, when we'd all been breathing it for millennia and knew it was a bit problematic if we suddenly couldn't. There's a chance it could...

I think it might be the wrong questionnaire for this. I suspect if you don't address the questions directly, your responses might be disregarded. There is a question where you could talk about the impact of the changes in more general terms (Q7) and about the risks of removing the limited...

I have some long-standing thoughts, but none of them are explanations: When it is worked out it sounds obvious, and people wonder why it took so long. or/and It was elusive because it couldn't have been measured before the introduction of a new technology, or an unexpected way of combining...

Yes, they'll see you're knackered. At first glance the other possibilities are bored or depressed, but if you're interacting with someone, it usually doesn't take long to narrow it down to knackered. You just need to decide how much explanation you want to give. I've always found a grin and "I...