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So, help me out. During the pandemic I was doing the Zoe survey, then fast forward and Zoe and Tim Spector are selling a diet device. To be honest I found just that distasteful and have ignored it as far as possible.

But but but Sarah Tyson has ME, she assures us Gladwell “gets it” and is a “good bloke” as is the other “good bloke”.

There are patients with ME, then there are patients with ME… I suspect we are “the wrong type of patient” as usual

Well I do a lot of things at one point in time, but then avoid doing that same thing at another time (so I can do other things) so one day Imight see friends or have a call and the next two days I won't, so I can tidy up. Then I abandon tidying up in favour of a lift to a shop. Which I’d avoid...

I can’t quote the post @JemPD but here is a screenshot “no I avoid doing this so I can do something else”

That’s what you do - reduce your overexertion. Stay under your pace points.

Pacing has always been about resting. This is just a scientific way to see what your body counts as rest or exertion.

https://workwellfoundation.org/wp-content/uploads/2023/01/HRM-Factsheet.pdf

It has the self-reported activity tags, daily symptoms by severity and the monthly FUNCAP. They’re at the point they can predict HRV days ahead. David Putrino is using the data for a research project.

Excellent Trish. I’d like to review some items before making suggestions if that’s ok, will maybe take a few days. What I have in mind is to strengthen your points, not criticisms!

Actually laughing that Gladwell published a whole paper undermining the CFQ then went on to produce this rubbish. yes they did, we discussed it around the 20-30 pages of this thread!

I don’t know who regulates Tyson or Dr Gladwell. Could be HCPC, depends what regulated title they use.

This is the third questionnaire- how many are there in total? It would be worth adding them all together to get an estimate of “time” and also “effort” to complete these. How long is the clinic visit going to be, even I, who is quite quick on a good day, would need near half an hour just for...

I think it’s great they are looking at publishing imminently. One in the eye for BPS and a massive step forward for patients.

They’ve done PROMS for mental ill health in NHS https://www.southwestyorkshire.nhs.uk/service-users-and-carers/useful-information/patient-reported-outcome-measures-proms/proms-frequently-asked-questions/

I wish we could have seen the presentation toBACME that Tyson and Gladwell gave the other day

They put together a Patient group from applications on the MEA website

I thought one of the other two questionnaire was about “what is vigorous activity for you and there was debate about how that was subjective and not a good way to measure. Now we have to choose between whether we “can, can with adaptations, avoid, can’t or erm really can’t” swim or play golf?

I mean, first of all, the thing to do would be set out descriptors 1-5 then just ask you to rate the following 90ish activities, no? I’m not a scientist but I did a bit of marketing and in question design terms, this is poor

It’s ok, they’re going to email everyone who takes the survey again, in a couple of weeks. Why? “To see how answers change over time” apparently. But it is an “at present” snapshot of an average day this month. And they want to see an “at present” snapshot of…the following month? To see what...