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I don’t like that wording “terrific > bedridden” an emotion vs a physical disability, nice. Thanks.

https://me-pedia.org/wiki/Migraine#:~:text=Migraines%20commonly%20occur%20in%20people,a%20cohort%20of%20healthy%20controls. A 2011 study found higher incidence of migraine in CFS patients

Like many women who have migraines, I couldn’t use the combined pill. I’ve no idea what the crossover is of female+migraine+ME/CFS but I’m sure there is one. edit - ah rats, this is my data again! Sorry. They must have asked if I was on the pill etc when I enrolled.

The Guardian is a tabloid disguised as a broadsheet. It almost went under before Kath vainer brought it back from the brink with affiliate links and rage-baiting. It trades on its past reputation. It’s closer to the Daily Mail than you would think.

I’d posit they would lean toward higher antibodies, given it’s not the cleanest!

apologies, I was referring to GPs only

It’s not rocket science - do less than you’re able to and don’t exercise. That’s pretty memorable. They just don’t like the idea.

Yes. But only because they have a “distressed personality” and everything causes them excessive distress.

It reminds me of the doctors under the Maoist rule. They couldn’t diagnose depression in their patient as that was a dissident political act, to be in any way discontent with the magnificent regime, and the patient would be arrested. We all just need to pretend not to be ill.

Simple. If you’re in widespread pain of unknown source and you think about it, have feelings about it or it affects your behaviours, it’s excessive. If you just keep quiet and don’t seek treatment, assistance, research etc it’s not excessive. If you bother a medic, it’s excessive.

The shrinking “blame gap” is one reason we will never see a proper pacing trial. Although, I guess if you don’t feel better, you’re doing it wrong! And we all don’t feel better…

I’d like to see some people design a pacing/energy management trial, then try to evaluate it, just for laughs. It’s such a poorly-defined “cookie cutter” concept which has quite little real-world basis. My imaginary pacing management study Part 1 - researchers set out an idea of a “baseline -at...

I was reassured by Sonia’s letter. I got the impression that whatever slack gatekeeping had been happening in the past was not going to be allowed going forward. I don’t think it’s too much to ask that our charities consider our needs before issuing guidance. I know in practice that isn’t...

We need a celeb (non-bps) champion who then wants to go out and bat for us.

Good point. When first diagnosed, I was working in Central London and a friend of a friend was a consultant. They mentioned I had been diagnosed. He asked if I travelled on the tube to work? As that was plenty enough “exercise” and not to feel the need to do any extra.

I think if I were reading about how to pace, I’d have needed someone to tell me it’s a coping mechanism not a cure. It’s nice to “even out” energy expenditure so that you’re not pushing yourself then recovering, but just being on an even keel, whilst it has its benefits, it still hurts, I’m...

Oh, so does this mean you are, in fact, entitled to see the 2014 minutes, after all!

Good job there’s a cat in hells chance of anyone doing anything, then.

They are good at the high level policy stuff, aren’t they? Some really good “asks” identified.

I knew he’d been reported as being fair convinced of death in 8 months. I wonder why.