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I'm not sure what an exhausted immune system is. Even if it's a meaningful concept, it's probably not very useful in the context of PEM. Part of the PEM phenomenon does resemble some kind of immune response (sore throat, swollen glands, etc), but a common cold can do it a lot better. [ETA: and...

On this specific point, I wouldn't be against a measure / toolkit for newly diagnosed people, if they want to use one. I say this because I remember being diagnosed with ME. It was more than two decades into my illness, but even so there was so much I didn't understand. And after spending a...

I think it's okay, it's just magazine style with a sidebar. Haven't perused the contents very closely yet.

Only on Thursdays and Saturdays.

If it's true one of the major variables between groups (cognitive and physical fatigue) can't actually be measured, surely it isn't a valid exercise in the first place?

Dunno about a comedian, but I'd pay money to read Marina Hyde describing them and their attitude. Although Frankie Boyle might have some good words for them...

To be fair, I got quite a bit for assuming Excel must be able to calculate time, because it'd be ridiculous if it didn't. "I'd never have thought of scheduling on a spreadsheet!"—former boss, who still hadn't quite got over there not being a typing pool any more.

I'm beginning to think we need another study. So: Group A uses up however much of their available resources are required to fill in all this paperwork, whilst Group B does it the old-fashioned way—assessing and reassessing the constantly-moving target that is their functional capacity by...

I can't speak for others, but I'd settle for powerful voices in the medical profession saying "We got this wrong. Let's try to do better." Doctors stepping up to be allies, the way they often are for other sick people, would change the picture in so many ways.

I'd be less furious if I thought that was a possibility! All too often people like this actually fail upwards. It's fine for scientists to be wrong, and it's not surprising if some of them try to present negative or inconclusive findings in the best light they can. But this is so much more...

But did you need a physio to supervise it? Or would the effort of needing to attend an appointment consume all your spare energy (plus some you didn't really have), so it was no longer available for an enjoyable activity? And put you at risk of ending up with PEM that wouldn't have occurred if...

I think one of the differences might be sleep. I haven't many memories of this because I got ill in my teens, but I do remember a couple of things—going to a family funeral when I was really unwell with bronchitis, and getting out of bed with a 'flu-like illness to sit an exam. Both times I went...

But you still couldn't make any kind of prediction, because PEM isn't a thing on its own. You might work out a way to predict theoretical energy capacity, but it would bear no relation to real life if it didn't take account of other symptoms. My energy capacity last night was actually okay...

Not hypnotic enough? Magic spell not working? But seriously, I wonder if they're confused about the subjective sense of fatigue and actual physical function? When I'm more active I experience noticeably less fatigue, and if I was asked about it without knowledge of the way the information...

I had some of this at work, there was always an underlying assumption that things will gradually get better. Of course for some people with LC things do tend to improve with time, but managers seem baffled when they don't. They can't conceive of not being able to control it and manage it and...

Given that I can't predict how able I'll be 20 minutes from now, I doubt it. I might have an attack of IBS, or my leg muscles might go dead, or I might feel too dizzy to stand up, or I might have retinal migraine in one of my eyes so that I can't see to read, or I might feel pretty much fine...

I expect the likes of me will still be balancing on one leg, trying to struggle out of a wet costume behind the undersized towel my mam's holding up.

From the website: Good to hear that at least some of them were considered useful!

I don't think the terminology or the usage is at all fixed. What I describe as PEM is the routine reaction to previous activity. It's fairly predictable, though the mildness or severity of it is sometimes surprising; the symptom pattern varies with severity, but it's always within a familiar...

From @MSEsperanza: A general (maybe dumb) question about epidemiology: Are there chronic diseases that somehow protect from getting certain other diseases? Or maybe disease specific treatment that will protect you from getting other diseases? Sorry, not able to retrieve now, but recently saw...