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I haven't the faintest idea how any of this works, but can you also ask it to prioritise other fairly reliable sources? Like the 2021 NICE guideline? If so, maybe it could even learn about the Larun review problem... :laugh:

That wouldn't surprise me, I imagine it's more the volatile chemicals that activate the trigeminal system. I could also detect those in very small concentrations, and they still make my eyes stream and my throat sore. Luckily age has knocked some of the acuity off my smell/taste system. Not...

Both of mine must be maddeningly over-enthusiastic then. I spent years reporting a really strong smell of gas that I picked up every time I passed a disused church, but no one else could detect it. After numerous emergency callouts I had to give up; I was still in my teens, and the gas company...

It is, but feeling ill seems to be common. People sometimes experience infection by the same virus differently, so if PEM includes some kind of immune ... 'thing', it's probably not surprising.

This! :laugh: Mine taste and smell has always been so acute that it's a problem, but there've been periods in ME where it's got even worse. I kept half-wishing I'd get anosmia after Covid, because just for once I'd be able to eat normal food and use a public toilet at an event where people...

Me neither, PEM makes me ill. Isolated mental fatigue or fatiguability is a different thing. Perhaps we all have a slightly different understanding of PEM because it manifests differently. Whether it's a bit of minor overdoing-it or a hideous crash that will last months, mine always starts...

Your question wasn't aimed at me (sorry!), but ... illness. Sore throat and swollen neck glands, hypersensitive bladder, feeling 'wired', inability to sleep, everything out of kilter. For me at least, fatigue isn't much of an issue on the first day of PEM. It kicks in on Day 2 and is worst...

If people who only met your description for a few years can be included, I'm one of them. I've spent around 12 – 13 years of my illness at this stage, over separate periods. At the time I felt recovered. I worked full time and could exercise regularly; at various points I did distance swimming...

Might be worth submitting it to the Co-Cure list? I suspect the recipients of the daily digests are mainly patients, but some of them may have contacts with researchers and it may reach folk who're not members here. Info can be sent to: CO-CURE@listserv.nodak.edu

I think I know what you mean, but actually general practitioners do understand some of the social factors and would love to be able to mitigate them. But they can't get people out of cold, pest-riddled homes covered in black mould, they can't give parents enough money to feed their kids and...

I don't know. But it's not hard to envision a mindset that starts with deeply prejudiced assumptions (these people need to pull themselves together) and arrives at a course of standardised psychological therapy (we'll give them a formula for pulling themselves together) as a solution. And if...

Absolutely, that's why it needs renaming and possibly reframing. But it's a thing, and acknowledgement of it would be useful—albeit perhaps only in peer support and genuinely sympathetic settings where recently diagnosed people receive help with ME management. I remember how relieved I was to...

Behaviourally, they will all engage in sacrifice and some will engage in time theft. By sacrifice, I mean giving up some things (including important ones like hygiene and good diet) in order to enable others, especially work, study, and childcare. By time theft, I mean telling others that...

Most will report particular difficulty sleeping in PEM. A smaller proportion will have a shifted sleep schedule (whether or not they're pacing well), that they find difficult to readjust. It could be fully reversed day/night, a switch to sleeping early hours to late morning, or they may need an...

Some difficulties around digestion or eating that they didn't used to have. It may be quite vague (e.g. just feeling more crap than usual after a meal), or specific (e.g. a food intolerance that causes IBS).

None of them will be doing less than they're capable of.

Also disastrous crashes, resulting from accidental ingestion of small amounts of topical steroids. My sudden relapses from able-to-work to in-need-of-care were caused by them. The relapses persisted for months because I was assured these meds couldn't cause a response like that, so I carried on...

It's hard to say, except that I get a sinking feeling about anything that starts with a mission statement. I don't know the first thing about science, to be honest. I know about ideas, though. I know that if you want a writer to make the best work they can, you don't start by offering them a...

But if you get $200 million a year, you also need $200 million a year's-worth of ideas. Otherwise you can't spend it, and spend it you must. Money helps, but it won't produce results on its own. Guaranteed money can mean it's not in anyone's interest to be too successful. If you want to make...

Interesting. I either hadn't heard about it, or forgot about it in the face of the never-ending tide of crap that's been swamping us all. At least anyone wanting to respond can hopefully invent some technical difficulties. :emoji_fingers_crossed: Knowing the state of some of its online...