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but the clinic won’t accept them as a patient

This is true, but the point being - why are services which won’t accept severe/very severe patients asking a PROMS question about if your illness is severe or very severe? How will these SVS patients get to the appointment - at a clinic which won’t take them?

I thought there were no services for severe/very severe in the NHS? The first question on the PROMS Sarah showed was to categorise the level of severity. Why would you be at a clinic which doesn’t accept you, to answer that question?

I think the MEA needs to clarify why they funded this. It’s becoming less and less like the biomedical research they claim to fund.

Sarah Tyson explained what the gold-standard techniques were earlier in the thread.I think they’re applying the gold to the outcome measurement methods.

We’re supposed to be able to give the data or health reports to our clinicians - like they care- so they can help us. Good luck with that.

I think the FUNCAP is supposed to gather like 12 months of data, it’s to give a view over time if things vary (or not) we all have better or worse months sometimes.

The health reports are different, they’re generated from your info. It should be above health report on the profile page. Maybe the monthly FUNCAP was rolled out to paid members first? I had trouble with opening it.

I thought the letters were brilliant, thank you for all your hard work!

And a discussion from the other thread - how does funding PROMS fit the MeA’s criteria. Some suggestions were made of how they might argue it fits, I for one am unhappy that my donations are being spent on this sort of “research” (and this researcher!) I’d expect the NHS make PROMS if they want...

Some PROMS info from NHS data https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/patient-reported-outcome-measures-proms#finalised-proms-data-releases They seem mainly to have been used for surgical procedures like hip replacement

Does anyone really measure how they’ve been in “a month” I can do days, maybe weeks as a summary of great/good/bad/awful or whatever scale, but a month contains at least two extremes for me. And measuring what I can’t do is useful too. The PIP process taught me that.

And this is the issue - PROMS is going to measure people who attend an NHS specialist clinic. We know many people are doing their own monitoring (yes, using different technologies, or none) so there’s actually a really good, big patient group who could supply a good data set, if that was truly...

I don’t know how to move my messages over, apologies. Trish has summarised most of the ideas. 1. Tyson et al approached the MEA asking for funding to do this project, and it doesn’t seem to fit with the MEA’s stated aims for only funding biomedical research. Why are they spending (our) money on...

I don’t think a “core data set” should be generated by data from NHS specialist clinics, because that’s going to be skewed by the fact that very few people attend them, it’s usually the newly-diagnosed, and there are no services for severe or very severe in the NHS. I’ve I’venever come across a...

I found this organisation. They have a section on Equality, Diversity and Inclusion, with videos. One by a University of Manchester Biology Professor. Perhaps Sarah knows her. https://ukrio.org/

It only “appears” on the Home Screen once a month, after that it’s listed in your Profile, just above Health Report PDF

It’s the new monthly thing on the home page. I don’t know if it’s because I’m on the paid version though?

Visible has added a monthly self-report item FUNCAP27 I see this questionnaire was discussed here https://www.s4me.info/threads/assessing-functional-capacity-in-me-cfs-a-patient-informed-questionnaire-2023-sommerfelt-et-al.35464/page-2 I thought it was quite good, I scored 3 out of 6 and I’m...

Oxymoron is the word I was trying to find!