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...
Discussion moved from Patient and Public Involvement opportunities in ME/CFS and other research **** Yes, that's fine. I've described it...
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...
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...
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 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...
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...
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...
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...
Even a prime minister can't change healthcare practice. They can damage it, create conditions to improve it, announce priorities they hope will...
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...
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...
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....
I'm still stuck on internal medicine specialists, and wondering what external medicine is. Maybe they deal with problems like hair so resistant...
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...
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...
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...
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...
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...
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...
Separate names with a comma.
