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My opinion - the concept is to build a body of data on pwME primarily to measure NHS outcomes on NHS fatigue services. That’s the starting point. Working back from that is a fudge of rehabby stuff for patients to complete. Whether any of this is helpful, useful or needed by pwME is less than an...

Whole concept is wrong, we’d be shifting the deckchairs on the Titanic, polishing a poop, tinkering around the edges and other similes for “the whole thing is garbage so any difference you make will be pointless” my opinion only.

Haven’t read through properly, I see Sarah is still a stranger to brevity. If you need me I’ll be in front of a mirror repeating “FUNCAP” until this is all over.

PIP

There is a lady on YouTube called Charlie, she does some good videos and one of her latest ones she said that a lot of people lately aren't being called for assessments, it’s just being assessed aka dismissed on the paperwork. This is what happened to me last year, and the CAB also said it seems...

May be of some interest to @Maat

It does seem that you would need to get PIP in order to be “excused” from the 35hrs per week job preparation and searching that is required to receive UC.

I love that their evidence section is evidence that their app works and the questionnaires they use work. Wonder whether they have read Nice 2021?

Was it Trump who proposed stopping Covid testing, because the numbers of people with Covid were too high? This seems similarly- privileged idiocy.

People see what they want to see, at the end of the day the BPS crew will always find a way to word salad everything back to “they’re making themselves ill”. When I worked, resilience was always lacking, apparently. Then when lockdown came and my job went and I was bedbound alone, guess what...

Same, I had a very good GP who explained that pwME are always trying, they’re always pushing against it, always looking for info, answers, help etc. Depressed people tend to somewhat “give up” and be depressed, until they’re not.

Following, because I’ve always had traits of narcolepsy and cataplexy since teenage and wouldn’t be surprised by a link with ME/CFS for me personally.

In fact, the miller tells lies that his daughter can spin straw into gold, so the king has her locked in a room with straw and a wheel, with a deadline to turn the straw to gold by morning- otherwise she will be killed. It’s kind of easy to see why she promises her first born child to Rumples-...

I was certain I remembered having the ladybird book of Rumplestiltskin, and it was because he put his foot through the floorboard! The internet tells me, when the Queen said his name he stamped so hard in anger, his foot went through the floorboard and was stuck. In a rage, trying to pull it...

I hate the “why are you so keen to be labelled” I’ve had it a few times, last one was when I thought I had mumps. On that occasion I wanted to be tested (labelled if you like) because it’s a notifiable disease and NHS advice was to see GP for a test. I also remember early on in Me/CFS being...

Me either

This is worse than just us. Obviously as per usual, it’s worst for us and those of us who are severe/very severe. This has been in the background whilst they were trying to cut PIP and merge it with LCWRA. We need to go to Benefits and Work, Crips against Cuts etc

We knew there was something, well sleuthed! We need to tell activists.

Is thee a name for the “whataboutery” involved in the constant, constant rehash and re-writing of inappropriate and harmful rehab approach? It’s draining. Always having to read through projects, papers, app proposals, testing, questionnaires etc which after you distill all the information down...

Reading about LP just takes me back to that CBT. No more treatment if you don’t agree things are better. If things aren’t getting better, you’re not doing it right. If you do it right you will feel the benefits.