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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.

But she was calling in ME. She said it’s undermining and a waste of time to discuss a name.

Did you find that reference by Dr Roy in the end? I know I recalled it but you wanted to see where it was.

Is that good enough reason to think you should “tell” people not to discuss the name? The whole point of my post being the unreasonableness of charity trustees/ex-trustees wishing to “police” what is discussed?

One theme I find interesting (and a turn-off) is people who want to police what others say/discuss etc. You may find it unhelpful, useless and undermining to discuss the name of the illness. However this maybe the first time I have had the opportunity to do so. And in any case, if people wish...

It’s really hard for me to understand being “misdiagnosed” with agoraphobia if it was really ME/CFS. I was always an extrovert who loved being out, going to places. I still would be if I had the energy.

It’s annoying that it’s seen as an “ME patient community” behaviour. There are countless examples of people doing a “pile-on” or bombarding people, politicians, TV presenters etc with opinions. I’m sure there are strategies to deal with it, in this day and age. It’s a feature of social media...

Nobody has been on to police the comments since this morning?

It would not be appropriate. However, issuing guidance in accordance with Nice 2021 could be. But Neil would fall foul of that.

It’s ok we have Charles and Neil to represent. I’m being sarcastic.