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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

Was her weight discussed, perchance?

When I worked, in an office they wouldn’t let me have a phased return or a work from home day, so I don’t have much confidence in “barriers being removed”.

Yup, that’s me. Peter White Pooh-poohing GP’s diagnosing ME and giving people an alternative diagnosis of depression, fibromyalgia etc should not, in my opinion, be cited as evidence of anything other than Peter White’s incompetence. Obviously in my case he was wrong, how many others? My GP...

The link doesn’t work. Is this the White study that I’m in where he said I was wrongly diagnosed with ME except he was wrong, I do have ME. That study seemed to be Peter White blowing his own trumpet and telling 40% of referrals to his clinic that they didn’t have ME they were depressed or had...

We know they are looking at letting you “try” work for a period without losing benefits. However, you can do some work on benefits and have your benefits reduced/wage taken into account (say if you were part-time). My concern is more that (like PIP) if you’re moderate or mild you will just be...

In fairness, it was the same trust but different clinic who Pooh poohed Visible,that was the ME (Infectious Diseases) service. IDK where LC has been yeeted to.

There might be a bit of an issue with the NHS and/or Social Care not doing what you’d expect, hence lots of “removing barriers to work” whilst glossing over the “how am I supposed to function, eat, wash and dress” part.

It’s the spin which is galling “disabled people want to work and are being shut out” well that will be true for some. As I cited earlier, the biggest offender regarding Disability Discrimination EmploymentTribunal cases is ….the DWP. So maybe Charlie can have a word with them for starters…

To be devils advocate, he was describing the medical model and telling people (possibly wrongly) that the medicine treats the disability or something. I think what he was trying to describe was a very basic type of physical disability I.e. if you’ve no legs then you get a wheelchair=problem...

I received my £150 winter fuel letter this weekend!

This was one of them https://assets.publishing.service.gov.uk/media/6762b502ff2c870561bde779/UA-2024-001023-PIP.pdf I use this site https://pipinfo.net/ NB this might be overwhelming if you’re not familiar with the law or PIP, for me I worked in court and had a little bit of experience, I...