Yes I have met this attitude. I don’t have a consultant treating me, just speak to the GP therefore it’s not serious as there is no hospital involvement.
I was invited to join the ME Association “ME Connected” today via insta stories. I clicked the link (for research purposes of course) it took me to the Discord site but then it couldn’t complete the task as the address was invalid.
So that’s working well.
Yes the plan was to gather information which could be used as a large dataset on ME - something NICE 206 identified as a gap. Sounds good, right? Sounds like the sort of thing the ME association should fund.
Except - the way this dataset would be generated was by the project group of Sarah...
Funnily enough, as I have been doing exercises and silent rest over the past 8 months or so, I realised at one point that I was having more and better conversations (strength of voice-wise) however with this came the old problems I’d forgotten about - slurred words, word-finding difficulties etc...
Gutted, I suffer a lot with voice issues and I’d have loved a decent piece of research. I really think it’s an overlooked symptom.
When I was mild I-started to lose my voice if I got a bug. Except I didn’t get a bug, it was a little crash. It progressed until I lost my voice for over a month...
I do actually wonder why they have gone about this like a bunch of idiots. They could have spun it differently and minimised the fallout, instead of sniggering and calling PIP pocket money etc.
I don’t love reforms but there’s some reasonable stuff as well as the massive cash grab.
Thinking about it more, what conditions do exist which manifest “real symptoms” because you think you’re ill?
Munchausens/Facetious disorder is not counted as that’s manipulation rather than true belief you have the illness you’re play acting.
Health Anxiety can cause issues maybe?
Any...
I feel like we need a “zinger” of a phrase, if there was a catchy, snappy, undermining retort it would go viral and shut down this kind of thing quickly and easily.
I can’t think of one. I’d probably go with “not this magical thinking solution again!” Or “I’m not “manifesting” these symptoms...
I will never forgive mindfulness for robbing me of raisins.
With some barely-overcome disordered eating and ARFID issues I started to enjoy them as an adult. Then, when the NHS CBT and Psychotherapy failed to cure my ME I was directed to a practitioner who asked me to buy a book on mindfulness...
I hated my workplace but miss working. I dream I’ve interviewed for a job then I have to go to work and I remember I can’t when I get there on my first day, and they say I seem fine so I struggle through knowing I’ll call in sick and quit the next day.
Yes, I’m interested to know generally how many pip claimants in % terms get which score. I think I’ll have to email benefits and work or someone as I don’t have the energy to do the FOI but I’m really interested.
On the one hand is the narrative of “scroungers” raking it in getting benefits for...
It’s the “secret” unknown workings of PIP isn’t it?
I know, I’ve “felt” it, that there is some language or something missing from what I’m saying which is keeping me low on points - despite genning up on the rules and putting my case across perfectly well and 8n line with their guidance.
I’m...
Whilst we are on the subject of PIP points, it would be interesting to see a full breakdown of how many get each point category.
Does anyone get 8 for anything?
How many people in EWNI are paraplegic and are they all claiming PIP?
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