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...
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 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.
I don't know if anyone else uses it, but I find resting heart rate maps the periods when I'm feeling better or worse—it's the only thing I've found that has any consistent relationship at all. My daily average rises on days when I'm unwell with PEM or a viral illness, and the amount of increase...
Funny that no one diagnosed me with a music disorder when I was young, despite spending all my time and money on it and throwing sickies to attend gigs.
My housemate didn't have a rugby disorder, despite losing jobs for turning up with black eyes or missing teeth after playing, or hungover...
That struck me too—I was expecting to see it being put in context with the other findings. When it wasn't, I assumed it must be due to publishing conventions, or the work being done by separate labs/in separate studies, or some other technical reason.
Or perhaps Walitt thought it might...
Perhaps misunderstood—I thought you meant where she'd made a post but then edited it later. I never see the MEA FB page and had no idea she'd been involved, so I haven't seen the pattern.
Oh I definitely agree, but I can't see it would be of much practical use for benefit applications, workplace adjustments, or medical care. They all need it set out in detail, with examples, timelines, and (often) evidence.
I can't really think of a context where I'd use a measure like this...
On FB it's very easy to screenshot the post you're commenting on, and add it to your post as a picture. I've done that before just to make clear who I was replying to on a busy thread.
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