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If only people would follow these regimented rules about how to divide up their time and energy. Then the researchers could do an evaluation on what difference it makes, they could study the degree of improvement That could be measured against the effort expended to prove its worth doing!!!But...

I have been pleasant and well-presented, from urology to gynaecology, ENT to psychiatry. I have also just been a “young lady” to rheumatology and psychiatry. They all do it, its code for “normal” or “unlikely to have been a guest on Jerry Springer/Jeremy Kyle” or “she turned up and Ive nothing...

It appeared to be badly-thought through. Now we have confirmation that it was.

Amen

Amazing that he ever questioned whether it actually was PEM, given that it was so inconsistent for him and that more exercise didn’t induce it….

A very basic suggestion - privacy screen for a smartphone. It sticks on, you can only see what’s on screen if you look directly at it, it slightly dulls the light, sideways on it just looks black. I used to have some issues with flicker on computers and they were resolved completely by a...

If they are fishing and spinning, they will do it regardless.

It’s the Daily Mail reporting this.

Interesting to see Conversion Disorder (hysteria) listed as one of the illnesses in “other”

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