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I agree, but I've been trying to reassure myself that NICE and the NHS don't themselves have an interest in the BPS approaches. There's no point spending money on clinics and services that don't help, when patients could be managed via existing GP resources. It's therefore in NICE's interest...

I suspect a lot depends on how long you've been ill. If you've recently lost your income, home, or relationship, or you're struggling to care for your children, of course you're going to be emotional. After 45 years, it's impossible to get emotional about something you can't even remember not...

Or Brian Hughes

I'm relieved to hear this happened to others, I felt like a bit of a freak when most seemed to have very little reaction at all, or an exacerbation of ME symptoms. I'm hoping – although not expecting – that it'll happen again next month when I have O-AZ #2. It was lovely while it lasted!

Desperation?

Yeah, it's nothing to do with patients or illness, is it. The danger of support groups is that bright, articulate people get to talk to one another about who's gaslighting them, and discuss how to resist using better arguments and a firmer grasp of scientific principles. That's really not on, is it.

I think one of the differences may be that we have a series of directly-controlled government departments led by ministers of state, plus hundreds and hundreds of executive agencies, arms-length bodies, and quangos that are publicly funded but may or may not be directly controlled by a...

It does looks interesting. If there's no explanation for it that's already understood, it needs replicating and then studying further with a carefully defined group of patients. If it's real, and unusual, it could be important.

How interesting – my experience is similar, but not quite the same. I have red hair and skin that can't tan at all, so severe sunburn was frequent in the days before the effective sunscreens that came onstream in the 1980s. They do still happen, of course. I burnt my wheelchair controller hand...

Yes, indeed. For me, a good part of PEM is immune-type symptoms (after the sleeplessness, the second symptom is always my throat swelling up so much that my neck disappears), and it's not possible to provoke that within minutes. So soon after exertion, it's just fatiguability, the effects of...

If anyone wants to watch it on a laptop or desktop, I think it might be possible to block the hands by making a couple of blank browser windows, and sizing and positioning them so they cover them. Fortunately, the subtitles seem to occupy a narrow space in the centre of the screen – I've only...

This is an aside, but I spotted this same account a week or so ago. Initially it came across as a potentially like-minded group of allies, but it quickly got a bit weird. I'm only posting it in case anyone decides to retweet their stuff without reading all of it; let's say that it's unclear...

I'm glad to see that at least one MP, Alex Norris, has a presence. He's my MP, and I'm hoping to recruit his help with disseminating information locally (and if possible, get mentions in Parliament or committees) about DecodeME once formal recruitment is launched. I haven't yet met him; I knew...

It is good. Designing the zero gravity effect, so that you can shift the chair by making tiny postural or weight adjustments and then it stays balanced there even if you don't lock it, is an engineering feat on its own! My mum had a good quality modern one, but it took a lot of muscle effort to...

Slightly off-the-wall suggestion, but I've just bought a restored Gimson & Slater Rock 'n' Rest chair from the early 70s. My granddad used to have one for his bad back and legs; they cost a fortune at the time, and restored ones aren't cheap now (I saved up for ages, and was gifted part of the...

My rheumatologist insisted that I had fibromyalgia. I may have – certainly have the pain – but I've never been diagnosed with it. She's the only who told me in all seriousness that ME and FMS are the same thing...anyway, I asked her to change it when I got to my next appointment, and she did.

I think there's a lot of sense in this, but we still need ME as an interim diagnosis. Partly because it tells the patient what they need to avoid doing (trying to exercise or work themselves better), and partly because it's a clear signal that their lives are changed significantly for the...

Or what they're supposed to be treating, or how written English works. Be awfully nice to see someone recruiting a practitioner to engage with local patients and ask what would help them.

I can't remember whether I posted my experience here (apologies f I have). Anyway, I had my first dose of the AZ vaccine on 27 February. My arm was a bit sore the next day, but I felt fine. Over the following days, my cognitive function recovered temporarily to pre-ME levels; I haven't had...

Wins the ME internet for the best analogy ever! :trophy@ :rofl::rofl: