I commented to the BBC twice that whole series of programmes would pass without any acknowledgement that disability even exists. There weren't...
Yup, and I'd add that it's true a lot of studies have been done, but most of them were rubbish. The work needs to be based on detailed clinical...
Yup! Though if you're ginger with see-through skin that has no tanning ability, you're insanely conscientious about covering it up. Only takes...
Hell yes! Our lot all had metal hips and knees by my age, and it cost a lot of pain to earn them. Mine are in fantastic nick. Also, I have an...
I've only had it for a few periods, but I agree it's the worst. It feels as if there's a pollutant or something that you need to flush out, but it...
I don't define it that way. Mine would be more like: A delayed increase in daily ME/CFS symptoms, a reduction in functional capacity, and feeling...
Theoretically, they're interested in how the illness affects you rather than the diagnosis itself. "Osteoarthritis" can mean anything from people...
The same reason you don't try to read the British Library's 13 million books in the hope of finding the one you want. It's not a rational way to...
Yes, push-crash is often expressed as a cycle. We need something that conveys having so little functional capacity you're never able to escape...
Oh God yes. Because "boom" means doing an essential activity, and "bust" means being made ill by it. What the expression conveys is more like...
That's not really true, though. I've never been severely ill, but PEM can be triggered by both environmental stimuli (mostly noise) and eating...
What would make me hesitant is the fact that for many with ME/CFS (probably the majority) it's nearly always the trigger. It would be very hard to...
The first that came to mind: Complex (can imply a psychosocial component) Tired Energy envelope (implies the meaningful existence of such a thing)
Consultant called mine pseudo-parkinsonism. Whatever that means!
No, me neither. It doesn't even make sense of the experience of it. Go way over your activity threshold, then retire to bed exhausted to rest...
Yes. Mobility element's not included in the proposed new rules. Yet, anyway!
I only know the difference in what it feels like. When I get up from sitting on a rested day, my leg muscles are reasonably willing. Getting up...
Because individuals saying they work isn't enough to make the case for a trial. You need more, including basic scientific plausibility and an...
I guess one of the ways to solve that is to ask if they're still liable to PEM? I had nearly nine years (split between two periods) of what...
They really need to sort out council tax discounts nationally, it's very inconsistent and unfair. We had full exemption for people on i-ESA for a...
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