I think this will be a very interesting discussion but that we have to bear in mind that we're not in control of what symptoms are named (more's the pity). I think the best we can do is come up with language that clearly describes our experience and that we can use ourselves in encounters with...
There's a BBC story online today with the headline, "NHS billions wasted as bipolar patients left 'forgotten and failed'", but I'd agree that this seems rare. I wonder who put the press release out that led to the story. It seems to have come from "experts" who "have told the BBC" stuff.
This raises the question of why serendipity hasn't yet coughed up a drug for ME/CFS, given that there are presumably tens of millions of us worldwide and we've been around much longer than PwLC. Drs Fluge and Mella noticed rituximab and did a proper trial but what about all the other drugs? Are...
Have they still not done a GWAS on Long Covid? Will DecodeME be the only GWAS to include PwLC?
We've discussed this before, how to properly interpret and take advantage of individual PwME trying things that they're taking outside of a clinical trial. I think we concluded that the thing to do...
I can see that perspective but I think that @hotblack's original question of whether you can have asymptomatic ME/CFS makes that perspective problematic. If we assume that the ME/CFS syndrome has a common causal path, and that ME/CFS is the only name that we're calling the illness, then if...
I don't think that's correct. I'd say that ME/CFS isn't currently defined as the presence of symptoms but diagnosed by the presence of symptoms. It's diagnosed b symptoms because we don't yet have a test.
I suppose the question is, maybe, suppose we had a test? And it would be like having high blood pressure without measuring your blood pressure, and being symptom-free (since I gather that most people with high blood pressure have no symptoms until they have a stroke or something).
What are the chances of the non-biologists among us understanding your paper? Wondering if you could maybe write a very top-level summary of the key ideas that ordinary PwME could understand that S4ME or others could put out on social media, especially as it's likely that your paper will get a...
I calculated my aerobic threshold according to the supposed ME/CFS formula and it was so low I could barely do anything so I had to ignore it, and yet I don't go around getting breathless the whole time, so maybe you're right and they're not related in real life very much.
I think a big problem in real life could be establishing the heart rate for an individual's anaerobic threshold in the first place. There's an age-based formula for healthy people but it's supposed to be different for PwME (resulting in a lower threshold) and I can't recall whether it's...
I wonder on what basis? I don't remember him coming up with any findings, let alone anything that would point to particular drugs, but maybe I just haven't been following the work closely enough.
At the risk of asking an 'Are we nearly there yet?' question from the back seat of the car, does this, and the fact that you're doing citations, mean that you're ready to put the article up a lot faster than in a month, as you originally expected?
I remember you saying that the cause of ME/CFS might turn out to be something quite new, because if it wasn't, we'd probably have solved it by now. Does your theory involve the possibility of something quite new, or do you think it's a wrinkle on things that biomedicine already knows?
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