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I'm really glad to see this trialled, I hope they do a decent job of studying it. Years ago, some people with ME/CFS tried it (plain old B3 as nicotinamide, though, not this proprietary formulation). Some of us saw significant improvements in quality of life, others saw no benefit at all...

Only this article (not a research publication), which I stumbled across a few years back: https://www.ox.ac.uk/research/what%E2%80%99s-point-paracetamol

If I were worried about it, I'd probably ask if the practitioner would be willing to wear a filter mask, and try to book a private Novavax jab about five or six weeks beforehand if affordable. It might be easier to find a pharmacy offering appointments for that during the autumn/winter period.

Members could complain or leave, and any decisions taken at an unconstitutional AGM would be void, I imagine, because technically the AGM didn't happen. It's harder to say what the practical consequences would be, though. The Charity Commission seems unwilling to act as a regulator unless...

They don't even say what 'chronic fatigue stress' is supposed to be. It sounds like something they made up for the purpose of the experiment.

"How do we con them into believing this bullshit in the least obvious way?"

It's even longer when you're brain fogged, and can't remember which of the fourteen doors you had to go through leads back to the bar... :D

Might you have to correct for age as well? As people mature they may get fewer symptoms of common viral infections, because their immune system's met them before. None of us can really be certain whether or not we have one right at this moment. All we can say is whether or not we have any...

Yeah, I've just spent half an hour on Google satellite maps, 'walking' the roads to plan a trip to a pub I haven't visited before. I've written down four parking options sorted order of both closeness and likelihood of availability, and a friend has sent me a video of the entrance and the...

It may stop you getting it...or it may not. I'd had six vaccinations (including one just a few weeks before) when I got it, and I still got it again a couple of months later. The hope is that it's less severe if you do happen to get it. Worked for me (I could have carried on as normal if I...

That's the point, really. What if fatigue did lift, without PEM improving? You'd likely crash more because some of the warning signs were suppressed. To be any use at all it needs to be a treatment for PEM, not fatigue.

I haven't voted yet, because my answer is to a different question: Do you get breathless when in PEM? The answer to that is yes, noticeably so. The answer to Do you get breathless with ME? is no, because it's not all the time.

If fatigue were the problem, it might be worthwhile for some. It's not, though, a fact that seems to have escaped the authors.

Maybe it's a bit like the Book of Judith, it depends which tradition you subscribe to. :whistle:

That's an interesting point. There's also something about unfamiliar sensory environments being much more draining than familiar ones.

This. Almost 60 years ago, in an infant school assembly, our head teacher said "It's far more powerful to believe a thing than it is to know it". I remembered because I didn't understand it then. It's hard for patients to change the minds of HCPs, at least when there's no ongoing...

I hope this gets quoted back at whoever described people signing a measured, cogently argued letter as "baying for blood". It's genuinely puzzling that none of them seem to know how to communicate in a professional manner. People who deal with the public by insulting or patronising them don't...

Going by the testimony of the majority, it doesn't. It might appear to, as people are only monitored for a short period in trials and most of them are at the mildest end of the spectrum. But some fluctuations in capacity occur over periods of months and years, as well as hours, days and weeks...

100%. And it's a normal, positive response. Given half the chance, people with ME/CFS want to work and learn and volunteer. We want to spend time with our families and friends, and do enjoyable recreational things. It's the reason we keep trying to shoehorn bits of extra activity into whatever...

Yep. And they have no way of knowing they're in that subgroup until they find out through experience. For some, that'll be too late. We could really do with some research on this. What proportion of people with ME/CFS only experience worsening, and what proportion tend to recover some of their...