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I think there are two separate issues here. One is, is this test any good as an objective test of grip strength, and therefore of decline in grip strength after the test is repeated? On the face of it (and I stress that I haven't read the paper, which isn't yet available), I don't know that it...

No, just a clinical trial. If we have a solid outcome measure, then we'll be able to tell whether an intervention is any good or not. So if an intervention is rubbish - such as CBT/GET - we'll see it; and if there's something truly good, we'll see it. And we need these measures ready now. People...

There aren't yet, but surely it's a good idea to have a useful outcome measure in any intervention trial?

This is exactly my concern. Just because it's seen as a valid test in 'valid' diseases doesn't mean that it will be seen as valid in ours.

I wonder how they can show that people exert maximum force on each attempt? In CPET tests, I think they can show maximum effort by means of a ratio of gases exhaled, I think (RER? I can't remember what it stands for - maybe 'respiratory exchange ratio'). Otherwise, I can see this new test being...

Just read about this movie in a praise-showering review in New Scientist mag, and it does sound really good: Movie review Paywall: The business of scholarship – exposing a scandal Expect to feel righteous anger and astonishment as the film Paywall exposes the dull-sounding science journal...

https://me-pedia.org/wiki/Greg_Crowhurst

Fantastic news (though it would have been even more fantastic if they had actually appointed you to the committee). What determines when or how often you get called in to give evidence/opinion?

Not a recommendation, clearly, but this is on in 15 minutes. :(

In haste - #MEAction have come up with something but I haven't had time to read the form-letter provided: https://www.meaction.net/2018/11/03/action-needed-nice-appoints-committee-rife-with-bias/

I've read that urine strips aren't very useful because as your body transitions more fully into ketosis, it gets more efficient at using the ketones for fuel and doesn't expel so many.

Same happened to me, but in a cardiologist's office, who dismissed the published criteria that I mentioned. Took me five years to get my OI diagnosed via a longer test.

Pity this doesn't address NMH (another form of OI), which requires a considerably longer test.

Sounds very interesting: Read the whole thing at: https://www.bbc.co.uk/programmes/b0bqjq0q I wonder if part of the reason that PWME have difficulty getting diagnosed, let alone treated, is that doctors don't have the time or the tests to deal with us. Perhaps AI plus better testing tech...

So he imputes to others the motivation that they have 'a big agenda that they want to force on others' and yet he doesn't debate with people who impute their own motivations onto his replies. No wonder he's sorry.

Maybe you're on the Google ghost game I was just playing (on the Google home page today). :)

I'm getting the same.

A bump for this, which is on this evening and was going to be livestreamed. @JoanNI, is there a link, please?

Thank you @dave30th - excellent summary and I'm so glad that you're helping us. You've been extremely effective!