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Wonder if it would help if you tried to quote stuff instead of hitting 'Reply'?

You surely don't mean lack of interest or commitment by PwME? [Edit: I was thinking about the powerlessness of PwME to change their own situation so was maybe looking at this in a different way from what you were.]

Through what possible mechanism? The position of PwME for the last forty years shows how little power the public has.

Do they have similar symptoms at all? I know you've mentioned narcolepsy before but I'm wondering why these two?

Was he aware that the idea that it's psychological is very widespread in the NHS generally?

That's really interesting. We might have expected that but I think this is the first time I've heard it this being the spark to get researchers involved, especially in the face of the countervailing BPS narrative on Long Covid.

This is a big surprise! Do you know why they got into it? (Wondering if that reason can be replicated elsewhere.)

What I was hoping for was a backlash within medicine against the FND rubbish within medical circles...

I hope that one day soon there'll be a massive backlash against all this harmful rubbish. Maybe we can spearhead it, which will unfortunately be probably once we've got a treatment, not before...

Me too! I've started a new thread to discuss it.

On another thread we've been talking about whether it would be a good idea to do genetic analysis of familes with multiple members who have ME/CFS, particularly if several get it as children (which would indicate a strong genetic 'signal'. I thought the topic deserved its own thread so here it is!

Thanks, Kitty, that's a fair point - I hadn't thought it through properly from all angles. Let's bin that idea!

Thanks, Andy, I haven't watched the whole thing. Did someone actually say that? What was the rationale?

If there's a possibility that Chris, or anyone else, is interested in doing this, would it be useful for the forum to try to identify such families from among its members and from public information, so that there's a bunch of known cases whom the researchers could approach? I wouldn't feel...

Can such families be directed to Chris? A crowdfunder could pay for their WGS in five minutes, I'm certain.

I think you mentioned before that it would be really interesting to look at the DNA of a family with three children under 13 with ME/CFS and here is one such poor family.

Do you have any feeling for what the equivalent figure would be for ME/CFS, given the (scant) literature)? Or even just whether it's bigger or smaller than for RA?

Does it make sense to ask, given that someone has ME/CFS, what the likelihood is that they would still have got it if they had dodged a particular infection but would of course be exposed to future ones? I'm thinking partly about what our futures will be like if some drug comes along that's an...

Would all of us with ME/CFS have got it sooner or later? Particularly those of us with severe ME/CFS? Lots of us seem to have got ME/CFS following an infection, which makes me wonder whether, If we'd dodged that particular infection, we'd have been doomed to get it anyway, at some point. I...

I have ratcheted down several times following new flu/Covid infections. Over years, I tend to then improve, but the link seems crystal clear - get a bad viral infection, severe flu-like malaise continues for many months, don't regain function for years. Doesn't happen with every infection...