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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...

Ummm, I wonder how many gentlemen this applies to? In any case, it's an utterly bizarre attitude, and I'm sorry you encountered it in such a brutal way. Feeling less uncomfortable is the underlying objective of most of the medical interventions people will experience during their lives.

Deep engagement with patients in order to shape a country's management recommendations is exactly the sort of thing for which EU funding could and should be sought, especially given that it's very difficult to shoehorn projects like this into many current national funding setups.* It's not an...

The reason I prefer 'activity' is that it naturally feels more inclusive of mental work. That isn't true in a strict sense, of course; 'mental exertion' is perfectly understandable. But I think for ordinary patients, especially ones new to the illness, 'activity' is a friendlier word that still...

It also encourages people to think of exercise and activity as different things, which is very unhelpful when you're trying to learn to manage ME. In the last eight days I've swum 1.9 km and put up the Christmas decorations; the later was hugely more demanding than the former, but because it...

Indeed, but I'd argue it would help us if the word 'exercise' could be banished and replaced by 'activity'. That's a much more inclusive term when it comes to discussing the very broad spectrum of ME.

No, I can't be sure. I just know that the longer I sleep after 7am, the more at risk I am for a crash that can last for anything from a few really horrible hours to several days. It happened a couple of weeks ago – I'd been kept up late by noise outside, and slept until almost 11am. It took me...

I must just be used to it, after half a century of a frankly disgraceful cola habit... :whistle: Given it up a number times for an extended period, but it doesn't make that much difference! Hope you feel better soon, @svetoslav80.

The fact that 'harm' – in the shape of worsened symptoms over an extended period – can be caused by different factors adds another layer of difficulty in establishing causation. For instance, certain patterns of sleep have at times made my symptoms worse than exercise, as have common viruses...

It would – but proper engagement and listening could take them a very long way. Case in point: one of our GPs (now retired) tended to brush off ME symptoms a bit, but was deeply sympathetic and engaged about my psoriatic arthritis. Clearly, that was a much more impressive diagnosis. The other...

Just to throw something else in: to me, fatigue and pain are to some extent the same thing. I'm unwell with a virus at the moment, but as my friend had been out and fetched me a Christmas tree, I decided to decorate it. I carried on until the Stop That Right Now fatigue kicked in, and crashed...

Presumably, there's also a considerable lag in learning how to use it to best advantage too? Not to speak of restricted access, exorbitant costs, etc. That's what cheers me about Dr Davis's approach at Stanford: they look for cheap, accessible options rather than trying to design a new...