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Screenshot they have not described this well. so you go homepage>health & social care>NHS Specialist Services for ME/CFS and Long Covid enter a postcode and it pulls up all nearby Here is an example with a review somebody left I don’t really see the point of this, it’s mainly going to be...

I don’t like to compare and compete with other illnesses….but the figures on people with MS are just dwarfed. Also I know a lot of people with MS, at least 4. Whereas I only know of one “friend of a friend” with ME (and all you guys of course) weird.

A new estimate of 404,000 pwME. I don’t love the extrapolation to come up with that figure, but it’s better than anything else we have.

This is the thing isn’t it. It doesn’t sound unreasonable to say that the money you get to cover the extra cost of your disability, should be spent on your disability. But we know the reality is that UC isn’t enough to live on, low paid part time work and UC isn’t enough to manage on, Councils...

I have to say I am getting worried because I can see a line of argument to justify cuts. First it was “giving a voucher to pay for your aid/appliance” now it’s “how do you spend the PIP cash?” Both have the same underlying Current - prove you spend PIP on specific items related to your...

sadly the Google translate wouldn’t turn it into English and I don’t really understand much Norwegian, so I treated myself to Dave Tuller’s excoriating blog which was linked in the article.

Who didn’t he tell?

Oh I didn’t realise that was the survey you posted! I don’t necessarily agree that completing a survey gives ammo for nefarious purposes. Let’s face it, if nefarious intentions are at work, they will work in any case and the results of surveys (including “no results”) can be spun in any way. I...

The Government is sending out surveys on how you spend your PIP. The Canary is urging people not to fill out any such survey, whether from Government or the There For ME survey https://www.thecanary.co/uk/analysis/2025/04/17/dwp-pip-survey/

It’s the same FOI they’ve quoted

I have just seen this FOI on social media via “crips not cuts” activist group The numbers of people on PIP at standard and enhanced daily living, and % who score lower than 4 in all activities 87% of standard daily living claimants, of whom there are 1.2mil

The right kind of contacts can do a lot. Look at when Andy Burnham championed Hillsborough justice.The editor of the Daily Mail, who happened to have hired the father of Stephen Lawrence just before he was murdered. There have been great strides made by Sajid Javid, Sean O’Neill, Sarah Boothby...

Quite honestly it’s hard to get an appointment with a private practitioner, the demand is so high

On forums, it’s really useful to use the “ignore” button if there’s a poster who particularly upsets you

I’ve done this. I was disappointed that they didn’t ask about potentially losing LCWRA as that’s a massive issue for me and others who can’t work and got super ill from 2020. I think ESA is an older benefit.

It seems like you’re trying to apply logic to BPS? They don’t like logic.

Hopefully not whilst being an undergrad, but yeah, cant rule it out.

Yeah it’s a mystery why women with monthly hormone fluctuations and associated energy expenditure not to mention additional financial costs and reduced safety and near guaranteed sexual assault, should by their 20s be more fatigued. Fatigue, as we know, is caused by repeated negative thoughts...

I can’t imagine why men and women would be different /s

Would it be worth sticking with the English word “pacing” purely because it’s used in literature a lot?