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The people I saw offered no therapies at all and had no connection with ME clinics. That may have been important. Their job was to look at individuals' needs. They didn't give me any sense of arriving pre-equipped with theories about what would be best for me based on my diagnosis; they...

If we separate post-exertional malaise from post-exertional effects (measurable changes after exertion), I dare say it'll have the support of folk whose PEEs include urinary output going from the pretty-ordinary to the frankly-bloody-ridiculous.

I think they're safe in that assumption. If the biological underpinnings of ME were discovered next week, I bet some of them would be totally unabashed. "Oh, we didn't mean that chronic fatigue syndrome." "It doesn't explain all cases, of course." "Well, it's what the scientific* evidence† was...

My auntie didn't like bananas and died at 93, so there you are. (I'm not keen on them either if I'm honest, so I won't be making old bones.)

I had a good example today of why postponing things to a random future date helps make decisions. The calendar ordered me to find and order some smart winter boots. :confused: I have a good quality pair already. They look like big chunky ski boots but are much lighter, they have a hidden zip so...

It would be the same for me if I didn't put things in my diary as soon as I think of them. I schedule them for a random date in the future; if it's something that needs an appointment to be made first, I remind myself to make one on that day. Then I get a reminder popping up on my screen in the...

I found it useful at work, but people knew the background already. There might be useful comparisons with some other chronic diseases, perhaps including some cases of MS, rheumatoid, FMS, post-treatment cancer fatigue, etc. Probably not respiratory diseases, that does seem a bit confusing...

Galway accent: "That'll be rheumatism and disappointment."

Maeve's care contrasts starkly with that of a relative of mine. She was complicated too, because she was in her 90s, drastically underweight because she had bulbar palsy and was struggling to eat, and although she wasn't senile, her inadequate nutrition made her confused at times and the illness...

That sounds familiar. I can be completely ready, yet still not manage it. Luckily I only play Irish stuff now, and being late's the norm—you often don't know what tune somebody's starting until you've heard a bit of it. The most frustrating thing in practice is losing a single eighth or...

It seems plausible. When people have naturally flexible connective tissue, low body weight and can't use their muscles much, it probably exaggerates joint discomfort and subluxations. By the time my mam was 90, thin and frail, the head of her right femur would barely stay put—but she had bendy...

It is. You have to disconnect most of your attention to play anything well, and all of it to improvise. But improv's not so much a musical skill as a cognitive switching skill. Plenty of good musicians struggle to do it, just as some sportspeople and dancers regularly experience a block to...

I think it's driven by people seeing an apparently strong association being highlighted by apparently knowledgeable people online, and it piques their interest. Add to that the fact that they're desperate for answers but there are none, and there are charlatans who know this but make money out...

It never seems to dawn on any of them that people aren't criticising them for trying to help those with ME, they're criticising them for being absolute grifters.

As far as I can see, it means regulating kids. By people who've forgotten that normal, obsessive kids have a habit of growing into normal, wised-up adults. It'll always be dangerous to be young and inexperienced, whether the harm is from world wars, institutional abuse cultures, or online...

It happens. I've had two good remissions, which occurred for no obvious reason—nothing in my life had changed. It was before I was diagnosed, so I didn't know they were just remissions and I could easily push myself back into relapse if I did too much. So of course I did exactly that.

Also, it tends to affect women, and quite a lot of younger women are naturally bendy. Some would probably answer Yes if asked – because it's true, not because it's ever been much of a problem.

The economic costs of supporting people who qualify for the highest rates of out of work and disability benefits, plus full housing benefit and council tax support, are more than £30K per person per year. That's before administrative costs, assessments, etc. Multiply that by a hundred and you...

I'm suspicious of anyone who puts the words 'brain' and 'training' next to one another and suggests it's somehow meaningful.

I'm not suggesting it was deliberate, but that's another worry about only studying recently diagnosed people. It takes a number of years to get wise to the way all this works, meaning it's much harder for new patients to make informed decisions about which research (and researchers) to support.