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If you were a window cleaner and the weather was blowing a gale making it unsafe to scale a skyscraper that day, but your employer begged and implored you to go with some extra harnesses on, and you were blown off, broke your back and couldn’t work, you would be entitled to industrial injuries...

I didn’t find my way to my conclusion. If you were doing a project - let’s say a science fair for high school kids, and you gave them a brief to design something to log and monitor and create data for pwME, I guarantee no one of the kids would come up with a self-reporting measure. That’s how...

If you want to be cured you’re denying your valid lived experience. If you don’t want to be cured then it can’t be all that bad and you like being special. It’s all a victim blaming exercise. And clouds the point. The point is our lives could be improved by others in society, but are not...

As a pwME, an app is better than an appointment. However, an app isn’t good. Me having to look at a screen, answer questions, fill out info daily, isn’t good. What would be good would be devices doing the monitoring and a clinician using and interpreting the data to help me.

I think all the people who are getting fired for sickness absence from the NHS are a bit p-d off that they caught Covid at work in the NHS. Imagine going to work for the state during a pandemic, getting ill, then permanently disabled and unable to work. Then the state doesn’t recognise your...

Breaking news : Study finds that prompting people to ruminate every 3 hours causes rumination. Aren't there supposed to be ethics for these kind of psychological experiments?

Oh wow I am never asked, they always come at me with the micropore then get offended that I say it gives me a rash. Last time I was pointedly told “we don’t have plasters instead, because they give everyone a rash” which seems like either a pointless tit for tat lie, or a bizarre coincidence.

It’s cultural. I’ve been in tribunals where large employers say phased return didn’t suit because we have too much work on, so they had to come to work on their usual pattern. Not for specialist jobs, but for admins etc of whom there were 100s but they can’t spare 1 person doing reduced hours...

Wasn’t someone going to ask Sarah Boothby?

I still find that kind of crazy, despite years of experience! I still don’t really know whether I had Covid in March 2020 or if I had a massive crash. Or both.

Do you think we should ask them to stop the campaign?

Yup, I recently did a Covid test on my PEM. Years of experience tells be I can judge after it’s tailed off, but I still wonder whilst in the midst of it!

I suspect it’s secondary gains rather than “treating” the condition.

Everyone references it, doesn’t mean you can get a bed there. Idont think they take inpatients at all? Also I don’t believe they treat S/VS, because there isn’t a single S/VS bed in the UK. And the point of the J4ME update was the government seeming to acknowledge the need for an S/VS service...

Maybe, I thought it was closing down though?

Oh, I think it means they will have to put funding to the delivery plan for a S/VS service. So that’s quite a good win. I’m not sure we can rubbish it as a “doomed to failure” rehab unit at this early stage. Leeds has been closed a long while.

My experience is opposite. I spent a whole HR career harassing managers to make entirely inconsequential, easy “reasonable adjustments” crossing out grossly offensive comments about staff in OH referrals, letters, emails and explaining that they couldn't fire someone because dialysis is...

I actually haven’t read it, it wasn’t making much sense. I assume you’d need to read it alongside the document itself commenting on.

Updated Update on NHS care for ME now Everyone who knows anything about ME knows pressure of time is not conducive to optimal health. Your support in enabling us to instruct lawyers to represent the interests of people living with the diagnosis (and nobody else) has been astonishing...

I wasn’t sure whether we had a thread about #justiceforME but there’s been an update to their campaign