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Just to be clear, I wasn't referred for ME/CFS. It was because my gait changed in an oddly distinctive way in middle age. Two different GPs thought it might be a sign of a neurological issue, and each referred me for a scan. Long story short, I was just compensating for a weakness in one muscle...

Not to speak of feeding ourselves, and paying our bills, and buying necessities on an inadequate basic income. The danger in exercises like this is that there are no questions allowing people to make clear that some of the extra costs of disability result directly from government welfare...

I'm interested in this too. The only test we seem to have devised is the two-day CPET, which is (a) risky, and (b) to trigger PEM people have no need to exercise to ventilatory threshold anyway. But how do you deal with individual thresholds and triggers in a trial, where you need to be sure...

Made a PDF with added spacing for folk who struggle with dense text. Content is the same, but the text is left-justified in a san-serif typeface, and the heads and subheads are bolded.

This is a really impressive piece of work—thank you! I didn't chip in before, but I saw another small proofing thing. It's just a few missing spaces in the fourth set of references on page 5. Corrected here for easy cut-and-paste: Carruthers, B.M., Jain, A.K., De Meirleir, K.L., Peterson...

It's a mess, isn't it. Specially as the medical professionals charities call on to talk to the media also have a tendency to make it up as they go along. They seem to think they have to talk up their 'expertise' in ME/CFS in order to justify holding the mic. It's really frustrating when there...

That's part of the problem of not having a qualified doctor leading clinics. If the treatments are delivered by various types of therapist, presumably those people have had specific training on them—they're not just drawing on their on their original clinical discipline. But if no one devises...

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...