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I haven't experienced such an abrupt shift, but I'm less severely affected than you. Typically what happens is that I squirrel myself out eventually, fall into a fitful sleep in the early hours, then wake up with no energy and PEM starting. The drastic dip in mood is already in place by then. :ill:

Discussion moved from Patient and Public Involvement opportunities in ME/CFS and other research **** Yes, that's fine. I've described it here before, it's nothing especially sensitive. It was caused by common-or-garden steroids used for asthma and ear problems. Although they're topical...

I don't usually use the phrase adrenaline rush for what I mean, but it does need some kind of phrase to describe it. Perhaps wired-but-tired is as good as anything we have. For me it begins like the feeling I used to get coming out of a brilliant gig where everything fell into place—audience...

So pleased to hear you're doing this research, Julia. Common steroid meds cause severe ME in me, and I've often wondered about other people—especially if the link is less obvious because they take them more frequently than I did. Although the case you published is very specific, it's good to...

I've been on gabapentin twice for different things, and it didn't make any difference to my difficulty with this. No idea about any of the others. The only thing that's ever helped is your item 1: working against it by continuing to pace. It doesn't make me feel any better at all, but it might...

The lack of access to specialists for severely ill people is worrying, but if we're focusing on those who develop nutritional failure, in a sense it shouldn't matter whether or not the doctor has experience with ME. If they accept the available evidence (i.e., that there is none) but there is a...

That should at least prick up ears, specially if it happened in a dozen people who'd been severely ill for a long time. I'm not really expecting to hear about it, though; if a drug were capable of restoring 60% of function long term, we'd have found it by now. Maybe an uncommon pairing of drugs...

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...