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It can bankrupt you defending the claim - that’s the real threat. It’s famously expensive, a notoriously complex area of law and therefore frequently very lengthy. The truth is an absolute defence to defamation, but you still have to spend years and money arguing. It doesn’t mean you will win or...

I strongly doubt it would

Probably here at S4ME online, as he has an account and you can see when he was last online… He is an employee of The MEA. If his employers are content with his performance then fine. From what I’ve seen of the board, the problems come from the top.

I’m not sure, I guess you’d need to hold it at an angle to use the edge or corner of it to get right in. I think you can get handheld scrub devices for grout (they look like a giant electric toothbrush)...

Looking at the phenomenon through a Foucaultion lens is absolutely appropriate. Gaslighting (as per the film) refers to the behaviour in a romantic relationship, so it follows that the behaviours in a different context need to be labelled (workplace gaslighting, medical gaslighting, familial...

New purchase! This time it’s the simple scrubber, it charges up and then you can hold it or attach it to the pole it comes with. It moves side-to-side rapidly. So far I’ve used it on -parts of the bath the spinning scrubber wasn’t doing too well -tiles and cupboard door -oven door - laminate...

Interesting thanks. I think I have a deviated septum. Based on your post I bought some nasal spray and it was already a lot easier to breathe/sleep!

I do in phases. A week or so of napping every day, then a week or two without. I certainly could not work though. Some of those info/scales of ME/CFS say “moderate” need to rest in the afternoon, some say nap. Many say moderate May need to use a wheelchair when out - I wouldn’t manage a...

Interesting, what exactly was the surgery (I cannot use the CPAP and am looking at other solutions now)

I take the phrase “unrefreshing sleep” to mean that we don’t get the same kind of reset that non-ME people do. I thought it meant that sleep doesn’t cure our fatigue. I do think it’s one of those ubiquitous phrases that gets trotted out everywhere and means different things to different people...

I’d like to do one of those TV jokester type of tricks, where we listed the endless ruminating and obsession with a disproved theory, magical thinking, gaslighting, paranoia etc to some big cheese like Simon Wessley and got them to diagnose it….then revealed it was BPS. Maybe Philomena Cunk is...

How hard is it to pull together a consultant, a few OTs and the Elaros app? /s These things don't just go to tender as a big shock, somebody somewhere has been preparing a bid.

Just added bib in second line

NHS palliative care is only a small part. I think there is an initiative to build new hospices in the future (maybe in the 10 year plan) however in the meantime Marie Curie have been closing down hospices. Many people reporting the “virtual hospice at home” being used and it’s not good. The...

Yup it’s institutional exclusion of people disabled byME/CFS

In the current times, it’s key that articles etc use “ME/CFS” for two reasons: -it’s the current standard term most widely used, and we are still trying to replace the “CFS” part that’s still in use, so they need linking And in relation to the above - it helps with SEO ME is a nightmare of a...

I’m not even reading it all, it’s too long. It’s a discussion that is inaccessable to me, due to my ME.

This. Can we have a thread. I don’t have the energy for the other stuff.

I absolutely had, which is why I am wondering why there is this interminable hand-wringing over whether physiotherapy as a discipline is wrong. So no I’m most certainly not behind but I am drained by the discussion of “the concept of physiotherapy is useless and does no good so needs to be...

It’s a bit hard to discuss the document when people want to abolish physiotherapy and physios per se more than deal with the real-world situation I find myself in, which is that -physiotherapy exists -I sometimes need to see physiotherapists - physiotherapists sometimes run ME/CFS clinics - some...