When it was used to describe my illness, I think it really was in that sense. I first heard it in the mid-70s, when I'd seen the GP numerous...
To me, there might also be an opportunity to work on something sooner rather than later, iron out as many of the creases as we can, and then it's...
It is genuinely difficult and I wouldn't suggest allowing anyone else to do it. I was thinking of it either in terms of something members could...
Yeah, I think it just sounds discriminatory and patronising. You tend to know from the context whether it's being used in a neutral, clinical way,...
I'm not suggesting doing this, I just thought it might be an interesting question to raise. Could one of these tools be targeted at either a long...
My worry too. But if it can be made workable using that as a source to start with, all well and good. Most problems can usually be ironed out,...
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...
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...
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...
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...
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...
Me neither, PEM makes me ill. Isolated mental fatigue or fatiguability is a different thing. Perhaps we all have a slightly different...
Your question wasn't aimed at me (sorry!), but ... illness. Sore throat and swollen neck glands, hypersensitive bladder, feeling 'wired',...
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...
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...
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...
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...
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...
Behaviourally, they will all engage in sacrifice and some will engage in time theft. By sacrifice, I mean giving up some things (including...
Most will report particular difficulty sleeping in PEM. A smaller proportion will have a shifted sleep schedule (whether or not they're pacing...
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