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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!

It’s very frustrating because I know I am/was intellectually capable of understanding. But my cognitive fatigue isn’t stable, it has highs and lows, so I guess if I wait for a “good bit” to come along, I can make progress.

No I was specifically thinking of learning biochemistry, or law/legal arguments. When I worked I attended court/prepared responses etc, now I can’t learn new legal concepts, or recall old ones well.

I find at some later point I can discuss the issue, or deal with it better. This is a nightmare if there’s a deadline.

I have experienced these “loops” but only on a very small scale. I tend to recognise it and distract myself when I notice it happening. Which is the weird thing - being able to acknowledge your cognitive dysfunction and think about it. Are there any other patient groups who do this?

It’s one more ME paradox Think about what you need to do/don’t overthink and use all your energy Don’t overdo it/don’t do nothing

I think it’s an executive function problem compounded by a lack of memory. At times I struggle with double-negatives. Luckily I can intellectually understand the issue. At times I get lost in them as they are four things at once - the thing, the negative of the thing, and another thing with the...

No, I think some humans would have her experiences and behave differently. Of course, some will behave the same.

It’s the proselytising that’s the weird part. And the very black and white thinking that x is right, y is wrong in all cases. Also this idea that ME charities or communities are “keeping people sick” or somehow preventing recovery. It’s all very cult/conspiracy/evangelical type of thinking, no...

Apparently it’s “made very clear” that this isn’t suitable for physical injuries (I read the Reddit) but also it seems that physical injury doesn’t matter because scans show lots of things, many of which don’t hurt. There was talk of a Facebook group which sounds like the Wild West, where MRI...

I find cults, and their cousins grifters and MLMs fascinating. That’s the kind of psycho-social I’m interested in.

I didn’t know “emeritus professor” meant someone was infallible!