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Many moons ago, long before this forum, there was discussion somewhere about the use of nicotinamide as a painkiller in ME/CFS. I can't remember much detail, except that among those who tried it there was a clear dividing line: it either worked well or had no effect. I was so sceptical I nearly...

I've only had it for short periods, but I came up with the same word long before the internet. I've found it's best not mentioned to most medical professionals, but it's very descriptive of how it feels. I really like the idea of encouraging the use of people's own descriptions. If we use some...

Obviously, a lot will depend on the speed of the Atlantic meridional overturning circulation. And which argument's most convenient.

I guess that's fair enough as they're not indicated in ME/CFS, and if there's a suspicion of an alternative diagnosis they should screen people anyway. (In my case at least, they did.) But it's a potential opportunity to raise awkward questions locally—for instance, if a trust or ICB is funding...

That's an interesting thing I didn't know.

I'm not sure the specialism is what matters most at the moment. It's the leadership. I think I'd settle for any type of specialist who wants to understand ME/CFS, is capable of attentive listening, and aims to establish a knowledge base, not decide which set of pet theories to adopt.

Balderdash PEM.

FFS. The criteria are a bit absurd, aren't they! If you had a prescription for antidepressants, an asthma reliever or an angina spray, you'd probably qualify even if you were at the mildest end of the spectrum. But because there's no treatment for ME/CFS and you can't see a specialist because...

This! It's amazing how much guilt there still is, though. The other day I didn't wake up till 12:30 pm, and there it was: "Look at you, laying in bed half the day". But as I'd been wide awake until 4:00 am and wouldn't have fallen asleep until some time after that, there was no lazy teenager...

Also, funding's often viewed as a patchwork. Some aspects of a team's work may be funded by earned income or capital schemes that of themselves don't say much about the main research priorities, so they don't get included in analyses of dedicated funding. Without having those base costs covered...

Answer changed! :D

Yeah, I agree. Some schemes are just unsuitable for some projects, and in those cases a lack of proposals doesn't mean a great deal more than that. There's also the likelihood that smaller teams have to take into account the costs of application, especially the staff resources. It's possible...

Just looked at the poll again, and I keep getting the impression that the answer I gave indicates paracetamol is effective for ME/CFS pain ("No, one or both of them is effective for my pain"). It seems to have no effect at all on the daily above-the-skin nerve pain and burning muscles I get with...

I've heard people say it, for sure. When I was working full time I picked up most of the office colds, but I got noticeably fewer as I gradually had to pull back on work and other activities. Which makes sense, specially when you also take into account that people tend to become less prone to...

I drive both my car and my wheelchair like that. Lean forward to create a space behind my back and the seat whenever there's a bump coming up, because it's...really unpleasant in a way I can't describe. I'd no idea I was even doing it until somebody pointed it out, it was just automatic. It's...

There might not be any need to, but it doesn't stop it happening. It's the same reason travelling as a passenger in a car can be as tiring as driving it, because not only is there the awful dizziness and nausea, you can't anticipate the vehicle's movements in the same way when you're not...

@Trish has basically written my submission for me! The only differences are that my response to physical exertion isn't as severe (I need to rest but not be in bed), and I've never had a migraine.

I haven't voted yet, as I can't take one of them. (Some asthmatics find aspirin and ibuprofen cause wheezing or chest spasms that are more uncomfortable than whatever it is that hurts.) I do keep paracetamol in the house for bugs and viruses. Little or no effect on ME/CFS pain, but it seems to...

People have chosen to end their lives because of it, though, that's the worry. Very severely ill people are likely in PEM most of not all of the time. I'd always start by arguing the same, but...theoretically, someone might say they'd rather not be fed if they had to endure X or Y to access...

No, absolutely not. But whether the problem is to do with the guidelines themselves or how they're applied, it has to be approached transparently. Denying nutrition when there are ways to supply it isn't an unfortunate omission, or an unexpected failure, or outside of what doctors can...