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Very powerful statement. On a smaller scale, what gives me hope in the mornings is that by the evening, I will be having a better day. I wish we knew what drove the huge variation in illness and disability even within a 24-hour cycle. (I say huge, but it's the difference between having to lie in...

Vegetables are largely water and take up a lot of space for the amount of calories they contain. Could eating them in large amounts be why you feel full and yet hungry? But if you've been eating this way for a long time and have only just started losing weight, perhaps it would be good to get...

Sorry to hear that, @AliceLily - it's not very nice to be reminded of something horrible like that.

Prof. Julia Newton has/had an interest in primary biliary cirrhosis and its relationship to OI, and used to talk about ME/CFS in relation to it all, IIRC. We have, of course, another thread on the need of PwME to lie flat. Here's a link to one of her OI/PBC papers in which she says, '100% of...

I've been paying next to no attention to the OMF for years. Have they made any progress?

No, you did, it was just my weird obsession! :) Yes, exactly this! Any people feeling 'poisoned' by alcohol finding that if they move around, it helps get rid of the poisoned feeling?

Although we don't know what mechanism to look at, so maybe there's permanent damage to a mechanism that we can't see. On the other hand, I went from years bedbound to years of being mostly well and able to work full-time and have a life before it all fell apart again, and other people have had...

I'm feeling a bit sad that I've been ill for nearly 40 years now and yet all we have is a bunch of symptoms identifying a syndrome and we know nothing else about it.

This seems to describe a theory of what's happening, although I know you don't necessarily mean it literally. But this describes the actual symptoms. What I'm struggling with in people's descriptions is how 'ill and exhausted' doesn't feel like a proper description such that 'poisoned' needs to...

Excellent find! Lots of 'poisoned' people on there too.

Just read this on the 'Concept of ME/CFS thread': This is sounding very much like 'poisoned' so if we end up looking into what that really means in either the context of alcohol intolerance or ME/CFS generally, we should probably look for 'toxic' and 'toxicity' while we're at it.

Thanks, Varda - maybe that's the key concept about feeling 'poisoned' - that it feels as though it's something happening in every cell, not just in the muscles or the brain, but something completely pervasive. Very interesting! 'Poisoned' people, is this the aspect that you're trying to get...

I think that one problem with 'poisoned' is that it sounds like a theory rather than a description, which is maybe why people don't want to use it, but there's clearly something about the experience that is bringing out some kind of common assumption about what it must feel like to be poisoned.

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I've been thinking about this. Until the last few days, on this thread and the 'Concept of ME/CFS' thread, I don't recall any PwME using this term, and if someone had asked me whether feeling poisoned was a feature of ME/CFS, I'd have said 'No'. This is clearly a failure of my memory, but the...

Thanks, Kitty - several people have mentioned an acid or burning sensation.

Quite a few people have mentioned a 'poisoned' feeling and I'm wondering what that feels like. Presumably not a lot of us have actually been poisoned in the past and so aren't basing that label on experience - and maybe different poisons (strychnine, arsenic, etc.) produce different symptoms...

Timing is looking like an interesting issue.

My very own response option! I've done the survey. :)

@Jonathan Edwards's new thread specifically about alcohol intolerance is here. @Eleanor, I've copied your post onto the new thread, hope that's OK! :)