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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).

That's very surprising!

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...

Will you be mentioning the [an]other thing in your upcoming paper?

That's a clever idea but in the UK at least, PwME aren't allowed to donate blood:

Do we know how many PwLC this is based on? Is 62 SNPs a lot to find?

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?

Fair point! I just googled 'medical charity logo UK' and clicked on 'Images' and saw a whole load of (admittedly boring) logos where the medical condition isn't emphasised in the design. It could have been done.

I see your point, but what are our charities to do? AfME, the MEA, MERUK, IiME - they've all got the same problem. It costs a lot of money to change branding, and what if we suddenly discover something that leads to a genuinely pathology-based name? They'd all have to change again, along with...

Thanks!

Where did you see 72 hours?

I wish I could remember but it's nearly 40 years ago. I'd never heard of PEM and hadn't noticed it in myself (it took a family member pointing it out to make me realise my reactions to things were delayed). But I just remember feeling FAB. IIRC, I started feeling fab as soon as my nose started...