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Hi Caroline, Excellent. Just one possible typo and maybe lost text? Apart from the double commas, not sure if it reads quite right?

To me, anything that can have an effect on someone at all, can potentially have either a positive or a negative effect. In a sense you can broadly perceive an effect as being on an analogue scale, ranging from negative through zero to positive. What we think of as benefits would be the positive...

Absolutely! If there is ever a Paramedics for ME, or Ambulance Crews for ME, then I'll feel like things are really rocking.

Given the Covid 19 situation, and the implications for possible ME/CFS (or ME/CFS-like) resulting illness for some patients, there will presumably be considerable interest amongst scientists into past papers on the subject. PACE of course will loom large, and scientists new to it need to...

But I've not seen the questionnaire yet, so I don't know if it will ask about delays before onset, nor if such delays would be used to ascertain if it was deemed 'real' PEM or not. And no, delay often is a very significant factor and should not be ignored, but just not a go/no-go decider.

A possible concern I have regarding PEM "entry criteria" for this study, because I note that for some a significant delay before the onset of PEM is considered prerequisite. But for my wife, although there is sometimes a delay involved, there is not always. By way of example. Earlier this...

Or none :p:p

No it wasn't TMI, just right in fact. Many thanks for that. :thumbup:

Sorry, yes I already understood the bit about secondary conditions, but thanks very much for clarifying anyway. The bit I did not understand was that I assumed comorbidities were secondary by implication anyway, but I'm clearly wrong on that.

Can you explain the difference for me please :).

I don't think the notion of "truest disease" is especially relevant here. If that was already known then a study such as this would likely be redundant. It is more about identifying a "symptom catchment envelope", in order to capture a fairly wide spread of symptoms and symptom severity mixes. I...

Yes, workflows. Adjusting workflows to best suit the need is a very sensible approach to always consider.

Makes me think maybe Cochrane has simply outlived its usefulness. If things evolve to a point where something no longer functions effectively because it's stuck in a time warp and can no longer evolve, then what's the point.

Merged thread https://www.bbc.co.uk/news/health-53291925

Cheese on toast with baked beans on top is yummy too.

Exactly. This is the huge blind spot the BPS crew have, in assuming pwME are essentially physically healthy other than being deconditioned. But pwME are far from healthy, and cannot recondition until the health issues preventing that are first fixed.

[My bold] Many thanks for this. One more follow up to this if I may please @PhysiosforME. Before you got to learn more about ME/CFS, how difficult (or easy) was it for you to distinguish between people who are deconditioned, compared to people with ME/CFS, of varying severities? Since your...

My guess, and only a guess (I'm not qualified for anything else), is that any improvement might be pretty marginal. Maybe that is what pacing is about, getting the most from what little you have. Maybe that is why my wife has improved slightly over the years, but only slightly. She is good at...

Depressing isn't it ...

Although this doesn't surprise me in the least, I'd not appreciated it until mentioned here.