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I've just looked up the name of the drug, and I'm pretty sure it's the same stuff my nan swore by 50 years ago! :laugh: She used to buy it over the counter, but obviously things might have changed—anyway, it worked well for her too.

But CPET is neither validated nor a biomarker. That's part of the problem. People giving detailed accounts of the symptoms they experience in PEM is as reliable as anything we have, and we don't need to expose them to the risks of CPET to provoke those symptoms.

Even a prime minister can't change healthcare practice. They can damage it, create conditions to improve it, announce priorities they hope will steer it, but they haven't the power to enact change. To be fair, that's probably not a bad thing.

I don't think putting anyone through a 2-day CPET to investigate diagnostic questionnaires is ethical. I'm beginning to doubt there's ever a strong enough case for it, to be honest.

It would be hard for an individual patient—there are so many people telling recovery stories that the auto-response is an eye roll. It might be different if several patients experienced a similar response, passed the information on, and others benefitted too. Then it might get published. Maybe...

Admittedly I haven't read a lot of case reports, but I get the impression they focus on clinical observations that might be useful or important. It could be a serendipitous response to treatment, a pattern of symptoms that suggest a familiar condition but turn out to be something else, or a...

I'm still stuck on internal medicine specialists, and wondering what external medicine is. Maybe they deal with problems like hair so resistant to management that you perpetually look as if you've just beaten the Roman legion on the outskirts of Colchester in 61 AD. I might be willing to move...

But it doesn't matter, because it's nothing to do with solving the problem. It's about offering someone who hands out cheques a reason to give you one. A reason they think will make them look good. It might not work, but when times are hard, money's short, the only governments with any vision...

But the story isn't for the patients. It's about getting money for the patients, and you have to use whatever devices will work at the time. It doesn't matter that we're living in a fiction we've created. We can't opt out, so however ridiculous the game is, we have to survive by playing along...

The only question I deliberately didn't answer was something about if I work hard I will succeed. It's a weird thing to be asked completely out of the blue, but especially for people who may be too ill even to brush their teeth with any vigour. It felt as if it needed a "This is so far removed...

All done. Since I don't use CAM I was able to complete it quite quickly—hopefully it's useful to have responses from people who don't use it as well as those who do.

I agree, especially as where it is addressing medical professionals, they're more likely to be in Britain than the US. The health systems and medical cultures are very different.

That's interesting—though I guess not surprising. It might have a significant role in contributing to PEM, especially as once it starts, it's difficult to switch off. I don't know to what extent the latter's abnormal, though. I seem to remember it being difficult to settle for a long time...

Completely get that, and the need to exploit whatever angles you can. You might even be able to frame one aspect of the research as a useful contribution to understanding the economic burden of diseases like ME/CFS and long Covid. As well as the core questionnaire, maybe it would be possible...

I've no idea what's actually happening in the body, but for me the adrenaline pump feels like the backup battery kicking in. I don't get it unless I've overexerted, and one of the problems is the inability to switch it off when the 'emergency' (i.e., trying to complete a mundane task rather...

I agree it's potentially a useful hook to attract attention to a project, but as others have said, returning to work is the most challenging step for people who've regained some of their function. Unless you're fully recovered it's impossible to gauge how much work you could do until you try it...

This! I was trying to say something about it when I was waffling about food yesterday, but couldn't muster a string of words that made sense.

I suppose if they got an excellent response in a high proportion of participants there might be an ethical argument for moving quickly to Phase III, but presumably they'd have to have the funder on board with it. I imagine it'd be less likely to wash if they needed new funding for Phase III...

This isn't really the right place for this, but as I always forget when it is the right moment, here goes! It's worth bearing in mind that food can have an impact on the likelihood and severity of PEM in some of us. And if research participants need to travel or stay away from home to take...

I'm not sure what the answer would be generally, but I haven't come across it in the UK. I've been given numerous medicines speculatively, but in most cases it was pretty clear whether or not they helped. That seemed to be enough to decide whether or not to continue—measuring benefits or...