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Here goes with another one of my daft ideas. I'll say it anyway, though, just in case anyone can come up with anything better! What if one of the major ME charities or groups put up a very simple online survey, asking people with ME to click whether they would – or wouldn't – be willing to take...

No, different focus altogether!

:rofl: Heard it go out live yesterday, it was quite interesting. They looked into how misinformation spreads, and the fact that the way the internet is structured can actually exacerbate the effects even before the bots get going.

My Moron seems okay too – I asked our practice nurse which model she used, and bought the same. Readings have always been in line with those done the old-fashioned way by the GP and the rheumatology clinic.

If this is the case, it might even suggest that those who benefit may have something other than ME. Depends how big the cohort was – but if, say, only one person out of 20 benefits, it begins to look fishy.

I'm uncomfortable about the label 'junk food' – it's food, and if it's all you can afford or you don't have access to cooking facilities, it's what you eat. Food, body weight, and self-image is such a tangle of complex issues that I think it's helpful to try and get away from implicit value...

You see, if science had been explained like this when I was at school, I might have got a bit further with it!

I genuinely thought it was one of those joke studies that people submit in order to prove that they'll literally print anything if you pay the fee. (I'm still only half-convinced it isn't. :laugh:)

It is interesting to try and tie down these definitions. I think my own experience is something like this: Sleepiness (daytime) Associated mostly with non-ME illness such as a virus, or tiredness after insomnia Fatigue Associated mostly with strong wakefulness Fatigue plus immune symptoms...

In the early stages of PEM I have the opposite to fatigue. I feel 'wired', I have to pee every half hour, and I'm constantly throwing off and pulling back on blankets or clothes because I can't regulate my temperature. It's impossible to rest, let alone sleep. The fatigue only arrives when the...

It's not even necessarily harmful. We could be producing an abnormal reaction to something that's perfectly normal and will be found in everyone's blood at times. That's what makes it so complicated – we may need to identify both the substance and whatever it's setting off. :confused:

Our family has quite a few people with what for decades was simply called hypermobility. I don't understand why we can't just continue with this term, as it's not exactly uncommon – specially in women. Some of us have subluxations and some don't, just as some of the redheads are able to tan in...

Me too. I've learned how to discriminate now after many years' experience, but it's not immediate. I have to wait to find out whether my nose actually streams or just feels as if it's about to; whether I actually have coughing fits, or just a painfully tight chest; and whether I have a real...

I don't think this has been published, even in the PNAS article – you might have to find a contact for Rahim Esfandyarpour to find out. Only the two mentioned above restored the signal to something like normal, so those are the ones that tend to have been discussed.

Before we invest in it, I think we need to wait at the very least until the Phase 3 trial of the drug is complete, and the nanoneedle project has tested many more samples, including people with ME, people with other diseases, and healthy controls. If it still looks interesting, there may be a...

Must confess I didn't listen. I have a new-ish TV, and I don't want it to go the same way ours did when my Dad saw Mrs Thatcher being interviewed about the miners' strike.

:rofl::rofl: To the best of my highly unscientific knowledge, neither the presence nor absence of caffeine has caused me to crash. Genetically I'm supposed to be a slow metaboliser (if you believe any of that stuff, and largely I don't; I just regret not having the energy at the time to...

I'm not completely sure it's the caffeine that benefits me, although it's difficult to compare because I've never been able to cope with the taste of tea or coffee. I did once try taking bits of a caffeine tablet to help me get a grant application in, and even though I only took a crumb at a...

Then we need to stop using the argument that ME causes harm, because harm in those terms really isn't our problem. I do have evidence of harm: 11 of my hand joints are permanently fused by a weird mix* of psoriatic and erosive osteoarthritis. But the consequences of it are fairly minor (you...

Interesting. I saw several psychiatrists in the early years of my ME (late 1970s and early 80s), which, although I felt a bit baffled by the reason for the referrals, I found to be positive and interesting experiences. They were also a bit baffled by the referrals, and told me I wasn't...