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Yep—and we talk an awful lot about what we don't want. We need to pipe up more about what we need.

Thank you, I think I'll go for that version. (Don't know a word of Norwegian, so it won't annoy me at all.)

So only people who know nothing at all about an illness are qualified to understand it. Well, that explains an awful lot of the last 30 years.

Especially as people get into old age, surely. A relative of ours developed ME during the second world war, and had it until she died of pneumonia aged 92. It'd be surprising to live with blood clots for 70 years, and yet never develop problems such as thromboses or TIAs or phlebitis. (Someone...

I suspect that (carefully?) excludes most ME patients, to be honest!

I know it starts off with the usual guff about exercise, but to be fair, it's about showing an effect in humans with cognitive impairment and mice with brain inflammation / a dementia equivalent, and anything that could help with that is worth researching in my book. My elderly mum developed...

One way would be to find funding for a trial in a country where this treatment is not currently being offered, but which has the capability to do it—most European and Scandinavian countries would probably fit the bill, as would the UK. Those potential recruits wouldn't be missing out by being...

I think you could reveal how ME affects my cognitive abilities pretty well by giving me an easy crossword (like the Guardian Quick) when I was well rested, and after making me stand up for a few minutes. I know this because I've been doing that crossword most days for donkey's years. I can...

I think @Barry's right—worth checking out. I do get a very similar thing, but there are several causes that all result in quite similar symptoms: Big peak in blood sugar, i.e. eating a cake without any other food – confirmed by blood glucose meter; Low blood sugar, i.e. reactive hypo – ditto...

I'm not convinced anyone really knows, especially given the new variants that are going to keep popping up. My decision, given that I've never had a really bad vaccine reaction, would always be to hedge my bets by accepting any top-ups that are offered, plus taking as many reasonable...

I know this is an OMF thread, but the emails I get are actually all from UK-based charities. The run-up to Christmas* is when our budgets are most stretched—quite apart from the gift-giving, food-buying, card-sending and Christmas-tree decorating, our heating costs are doubled because it's...

It's not a great time of year to try and raise money from people who mostly don't have enough to manage in the first place, is it.

Patients don't pay directly in the UK—but the taxpayer does, of course. In the case of ME, we're often stumping up for services that are largely useless to patients.

The pool is used for club training, so it's kept cool enough that you shudder when you first get in. It probably wouldn't make much difference, as you don't get too warm even when working hard. Hope your viral 'thing' departs soon! They're so infuriating, specially when they can't even be...

Never tried it myself, but then again I can't even stand up in heat, let alone exercise! :laugh:

Its would be nice to think that the extraordinary way our community responded to the challenge will ripple out and change things for the future. Not every patient group is so organised or so well-informed—most probably aren't—but it's a case study on what can be achieved. That can only be a good...

Probably not in Hansard, which records what was said/written (even if it's not entirely correct).

I think one of the problems is that whether it's a helpful way to do medicine or or not, a group of traditional specialisms does still exist. If nobody really knows what is wrong with a patient, it's hard for them to say which specialism should look after them. There's so little in the way of...

Another great article, Turning the Nostalgia Up to Eleven: https://thesciencebit.net/2021/11/24/psychogenic-me-cfs-turning-the-nostalgia-up-to-eleven/

The pharmacist at our Tesco does very slow 'flu jabs, as he thinks people get less soreness. Doesn't make any difference to me, but could it have been someone with their own theories about it being less painful? My Pfizer was done at a vaccination centre by a med student, and got stabbed in in...