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Thanks Trish. This really is dire.

I think part of human rights is not to be tortured, maybe we can top trump their “right to rehab” with that, seeping as they are championing something proven to cause harm…

We could question their theory from the other angle? What is the “ceiling” of improvement and how do you know when you are there? C’mon Petey G, let us know! You’re the expert, right? You’ve been practice this for goodness knows how many years. What is the average maximum? Recovered to as...

Can we report the clinicians to their professional bodies? BACME need taking out. I hope AfME are on our side, even quietly.

Highly unlikely, with ill health retirement at full rate you need an illness that is guaranteed it won’t improve. And it’s guaranteed there is no treatment. With LC both are unknown, you would be lucky to get ill health retired at half rate with a review after a year or three. You will most...

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?