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Another way to do this might be to survey people who have been out of regular employment for more than six months since March 2020, for any reason other than redundancy, dismissal, end of contract, failure of a business or retirement. And whether they're still out of work or have had to reduce...

This is great, thank you for all your work on it @Yann04! :emoji_bouquet:

They don't seem to have taken into account the financial toxicity (ugh) of bandwagon-jumping doctors offering investigations, treatments and medications that don't work, to people who're so desperate to recover their earning capacity that they'll try anything.

Care plans seem to be a bit like emergency evacuation instructions. You put them up on the wall because the rules say you should, not because anyone will read them or notice they're there.

I'm only aware of the most obvious one, that given the state of our knowledge it's really hard to come up with strong enough cases for funding. We've got a whole array of hints, but very little that looks solid enough to move to testing in a major trial. But you're right to question it. It may...

It would probably need several questions, tbh. Reynaud's is so common that up to one in five women may have it or get it at some stage. Men get it too, but apparently less often. Secondary Reynaud's is associated with so many things that even in one person it's not always obvious which might...

I understand the reasons for trying meds that don't address the underlying ME, but if they don't, can they be good candidates for the significant investment needed for a large trial? Maybe the same's not true for a proportion of patients, of course; but if it was, they're arguably no better...

And for all the ones who were content and stayed together by choice, it'll be something else.

Funny, isn't it, that I'm of a generation where divorce among parents was quite unusual, yet people my age still have ME. It was even less common in my grandparents' generation (people born in the last two decades of the 1800s or the first of the 1900s), yet....there they are. It's almost as if...

Yeah, I know – I just think it might not do a lot for their credibility to suggest switching on a huge funding stream before any structures are set up or projects are ready to go.

Was that not a bit...unrealistic? Established scientists are probably quite busy. I'd be concerned about anyone offering that much money on that timescale, with the state of research as it is—there don't seem to be a lot of big projects sitting there waiting for funding to become available...

Good segment. It must have been a bit tough on Charles, having to host the TV crew and then get himself prepared at that time in the morning.

I had just the same. When it was at its worst, the smell of my breath was so bad that people couldn't help recoiling. The only thing that relieved it was not being deep in PEM. I was undiagnosed at the time and didn't understand that, so I had to put up with it for a large part of the 23 years...

There would need to be clarity that the unit wasn't treating very severe ME/CFS, but the effects of it. Perhaps one of the few effects where there may be a net benefit from hospital treatment is failure—or risk of failure—of nutrition and hydration. Approached in good faith (not a given, I...

Is it because she'd have had to show that discrimination contributed directly to Maeve's death, and that's difficult in someone who even with the best treatment in the world would still have been very ill? I don't have nearly enough knowledge about it, but I wonder if it's more straightforward...

I wonder what the threshold is that will change their minds. Is it a fixed number of death certificates?

This touches on something I've often thought about, but never actually said aloud in an ME forum because it sounds ridiculous. Microsoft Windows was pretty gruesome when it first came out. I didn't know anything about computers, but a techie friend told me that instead of building it from the...

It is, but we have to remember that the hospital wasn't treating ME. It was—or should have been—treating malnutrition. The fact that it's malnutrition in the context of severe ME does complicate things, of course. But I'm left with the overriding feeling that if the doctors had been clearer...

It must be incredibly difficult. Do you have access to a counselling service where you'd be able to work it through? It might help you develop some strategies. I usually assume people are okay until they prove otherwise. The majority really are, and the ones who're not fall into two broad...

Maybe an intimate relationship needs a different depth of understanding, and that might take time to develop. It's true that most people don't understand ME, but it doesn't mean they can't. Many of us didn't understand it either, even as we were living with it, because it tears up all the...