Good points. I suspect many of us do our best to escape the culture by not participating in these clinics once we've been diagnosed, learned the...
This is key. But I'd still like to know who the forms are for. Most pwME are managed by GPs, as almost no one in Britain seems to have an ME...
And is anyone going to do it? I've never had an assessment, and nobody monitors me the way the rheumatology and asthma clinics do.
Patients will only be able to give useful answers if the questions are related to their real lives. They can't compare themselves with someone...
Apart from the use of CFS, I think it's rather good. I'd change "extreme physical and mental tiredness" to "mental and physical exhaustion" and...
I think I have a slightly different understanding. During a sustained activity I'll experience rapid muscle fatiguability, pain and OI; if I keep...
Not in the slightest. I feel like I'm wearing a lead suit, have the 'flu, am wearing something I'm allergic to, am developing cystitis, and have...
That, and protecting the herd from infection, perhaps?
Not entirely, no. I think this is saying the person either can't complete the task, or abandons it because completing it isn't worth the...
Just wanted to say that this is so much more interesting than the publication!
People with co-morbidities might be excluded from some trials because they have diseases with overlapping symptoms, so it's not possible to say...
"I need to publish something, and I've already done the cranial massage, the electronic detox, and the happy app. Crystals, maybe? Oh, I know –...
He was probably mirroring the sort of language he hears from patients, as it was for a general TV audience. He might phrase things differently...
This. I'm not severely ill, but I've never experienced PEM that only lasts minutes or a couple of hours. I find it worrying that something so...
Thanks and congratulations to everyone involved in this broadcast—I've only just found out about it by logging on here. What struck me most was...
Wasn't it. I'd assumed a good number of the exclusions could be due to comorbidities / medication / recent surgery / ongoing investigation /...
I agree, but think it's only practical to do that if they're broken down into groups of symptoms on questionnaires. For instance, I'd never...
Me too, I just keep a amount for other stuff, or spot-cleaning obstinate stains on garments. My current bottle's getting a bit elderly now, but...
It's brilliant for getting accumulated breath condensate out of the heads of tin whistles, too, but that's probably a less useful tip for most...
Nothing to add about rice, but I do have a cleaning tip for yucky pans and bowls. I discovered it when I was 17 and too disorganised to put...
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