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I hope these “antibiotics what can cure the ME” aren’t like all the other ME cures, which only work if you believe they cure you.

Apparently not.

Thought experiment. What does the fact that those in the study, who have ME/CFS, agreed to take part in the study say about “effort preference”? Somebody feeling unwell yet choosing to take part in research is making a greater effort just by turning up, aren’t they?

Thanks Trish. I’ve looked at IGLOO and it’s just an initiative about return to work, what the Individual, their colleagues Group, their manager Leader and the Organisation should all be doing. Like many of these, good luck to any Individual assuming their G, L and O will be at all interested...

Still looking for figures on people deemed unfit to prep for work but not awarded any 4s on pip. I want to determine how many people judged as unable to reach, sit type or speak are found to be able to prepare food, wash, dress and speak with an aid.

I got Covid last year and managed to 38c My normal temperature is 36.2, so even going to 37 is an increase for me, but I rarely manage it. Last time I was sweating and feeling unwell (PEM) I took my temperature it was 35.9

It’s limited to one year anyway. I think it’s being phased out as well by 2028/9 because the UC Health payment will replace it

No sorry there’s no LCWRA info in with any of the PIP data

There just needs to be some voices saying - “rest, honestly you really do need to” because it’s never explicit in the 10,000 versions of “how to pace” which get endlessly tinkered with.

ESA will cease to exist anyway, everyone is supposed to have transitioned now aren’t they? So going forward it’s only UC Health anyway which has the tapering and rejoining within 6 months already built in. Spin, spin and more spin. Thanks for the links, I will have a read and digest later

Seems like high expectations for employers in the US, who don’t even let people take annual leave.

I get the flu jab under the WHO “neurological” classification being the reason I’m entitled. I’m such an anti-recovery activist! It’s probably not even neurological is it.

Good luck with that, my GP wouldn’t be getting involved. One once wrote a letter that they didn’t really know me or my situation so they couldn’t comment.

You definitely need these carefully tailored personal things from experts who do not exist and will not be involved in your care at any stage. These fairytales just get repeated across guidance. It gives false hope to people. It sets them up to be let down.

I want to see the venn diagram of people unfit to work (LCWRA) and on PIP, then on PIP with no 4’s for daily living. My LCWRA assessment is really well written but PIP won’t look at it, despite it being in the bundle.

UC WCAs have skyrocketed as ESA WCAs declined, as I expected. https://www.gov.uk/government/statistics/universal-credit-work-capability-assessment-statistics-april-2019-to-june-2024/universal-credit-work-capability-assessment-statistics-april-2019-to-june-2024

I still think the drop in ESA assessments was from Covid, then due to it being phased out. Because they don’t still have a backlog, and the drop is huge, hundreds of thousands. And also not everyone having a WCA has applied for ESA.

WCA is separate from PIP, it’s not even carried out by the same contractors. I had WCA in west London and PIP in South, although I didn’t attend PIP in person, but WCA I was required to attend between lockdowns. So PIP is unlikely to affect WCA assessments carried out to date, although they...

I only had this when I was first ill, I looked really odd walking so slowly, it only lasted a few days. I just couldn’t move any faster. Now I start off normal, decline, then stop. Sometimes I feel like the gravity is heavier than usual, I’m in a crash and it’s like that now, like a force is...

Interesting, but I didn’t apply for ESA. I applied for UC, was sick and then was referred for WCA, and was then awarded LCWRA. So me and anyone like me wouldn’t be counted in these stats? Massive reduction in assessments from Covid onwards, is that because ESA was being phased out at the time?