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Maybe not necessarily? A physician who isn't an ME/CFS specialist but is genuinely interested in it could advance their learning a lot by linking up with a charity. Whether anyone has the bandwidth to do something like that voluntarily, given the pressures many NHS doctors are under, is a...

Yes, that's an interesting one. I've so rarely had difficulty spending my waking hours with my feet on the floor that the issue wouldn't even feature on my symptom list, yet I'm severely affected by standing for very short periods. I have to use a powerchair even when I can manage the walk from...

I didn't take it as having been used in a hierarchical sense in the paper. I took it as a useful symptom (from a long list, some of them common in other conditions) to highlight because it's both characteristic and odd. Doctors who read the paper will be familiar with patients who find it...

Different cohorts in this imaginary study, then? It'd be interesting to know if there are symptoms or experiences reported in ME/CFS that a significant proportion of those who recover don't get. The sex ratio idea is an interesting one. Still room for bias in the results, but maybe less...

That might be because it's often carried out by GPs, whose watch and wait approach tends to categorise any result not written in large red letters as probably-within-the-bounds-of-normal?

There's unlikely to be a better time to study that as right now. There seem to be a lot of people whose experience of long Covid looks broadly comparable to post-EBV fatigue. Perhaps it tends to persist for longer, but they do recover. I wonder if they experience that urgent need to lie down...

PS: you can claim by post by sending a request for a form to Freepost DWP PIP 1 (nothing else is needed on the envelope). Allegedly it takes longer to claim that way, but that might not take into account the fact that it takes forever to get through on the phone at the moment. Th other thing...

It's usually around a 50 minute wait, sometimes longer, and calls are not infrequently dropped halfway. It's frustrating, but unfortunately normal. I wouldn't mind so much if they didn't alternate extremely loud music with much quieter announcements, so that you can't just turn the phone volume...

it doesn't sound as if that would start in as little as 20 minutes?

Maybe we need a survey on heat intolerance next... :laugh:

I guess it might depend what you mean by OI? I use it as a shorthand for feeling unwell after a brief period of standing still—in a way that healthy people almost never do—which drives me to sit down. More severely affected people get the same thing when sitting upright, and have to lie down...

So rehab doesn't help. Good to have that cleared up.

Similar for me, I can only be sure PEM isn't a virus when it stops at sore throat, swollen glands, and a slightly runny nose. It never causes sneezing, coughing, sinus pain or earache, and while PEM sore throat's annoying, it isn't as painful as some colds. But while it seems plausible that...

I agree, ordinary ME/CFS malaise (which I get every day) is very different to 'poisoned'. I get nausea regularly, but it's not the same thing (I'd just call that nausea). 'Poisoned' isn't even like food poisoning, because however unpleasant and prolonged the gastric upset was, I never got that...

I think that's well worth doing. I'e always assumed it's to do with severity, since the only times I've physically needed to lie down during the day were when I was very ill. I sometimes feel like lying down, but not enough to make it worth the discomfort—slouching will do instead. In reality...

I eat a lot of vegetables for the same reasons as @Hoopoe (plus I can't eat potatoes), and find exactly this. I can be painfully full from my main meal of the day, and then suddenly not, and then find it's bedtime and I'm starving—all in less than three hours. So I cut down on the vegetable...

I can't work out why is this thought to be news. I mean...why would anybody even bother to read to the end of the first sentence of an article, let alone give a flying you-know-what about it, with the world in the state it's in? Not Miranda Hart, of course (I don't really know who she is tbh)...

A bit hard to know, really. My threshold was low, the effects began quickly, and I don't drink quickly. With jenever, gin, or malt whiskey I might sometimes finish Drink No 1, but there definitely wouldn't be a No 2. With something in a bigger glass, I wouldn't even finish No 1. There could...

I'd be really interested to know too, as I've never known it triggered by anything I've eaten or drunk. But if it is sometimes a consequence of alcohol, it's probably unlikely I'd get it anyway. I can barely manage a single unit before the nausea, headache and muscle pain kick in—that's quite...

Not quite, at least not for me. Have you ever had to take a medication or been somewhere heavily polluted by smoke, so that it felt as if the substance had infiltrated every part of your body? It's that, on top of all the other symptoms of severe PEM. It's not an identifiable thing like smoke...