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Thanks for that @Dx Revision Watch good to have that clarification.

Very interesting about the situation in Germany Inara, But in the UK, the 'experts' advising judges would all say they are the same thing. While there do exist the odd medic who might say that ME is distinct, they are very few & they are seen as 'fringe'. I'd be shocked to my core to discover a...

So they are still not allowing you to actually HAVE your booster until 6mnths after your 2nd dose, they are just letting people BOOK it after 5mnths. So nothing has changed except access to booking an appointment? How ridiculously confusing. What a shower. I agree @Dx Revision Watch the...

What I cant understand, is whether you can book your jab until after 5 mnths have passed, or if you cant have it until 5mnths has passed. I not eligible until next monday (the 5mnth mark) so is the reason the national nhs online booking system wont give me access because i cant book it until...

Edit, cross posted with @Keela Too :) who said it rather more politely lol err, excuse me, but you're doing it too. I dont feel shame when i am dismissed or abused, your contempt doesnt shame me despite the fact that it's supposed to. It hurts yes, it cuts deeply when people think things about...

IIRC thats a very good book. I read it when i was 21, on my way to London on the train, i was going, alone and terrified, to Heathrow airport to catch a plne to go and work abroad. It's about not letting fear stop you from doing what you need/want to do, or that will make your life better. Not...

@meg22 thanks for that further info its helpful @CRG how awful for you at the school! I wasnt implying that others with ME inc you, didnt have similar issues to myself, only that its a lot more/worse than brain fog, but since brain fog is the only formally docummented issue that we are...

It has been automatic that all consultants reports to GPs were automatically copied to the patients (by post) for some yrs now (i'd guess a little over a decade?), in my area at least. Is that not the same across the NHS? I'd assumed it was as i am under 2 different Trusts

Oh for .... sake! Why are they unable to hear, dizziness, sound sensitivity, clumsiness, poor coordination, muscle power, cognitive difficulty... etc etc etc all get worse the more i do. 90% of what she's written is literally backwards. Its opposite to the reality. Not to mention infantilising...

Yes @CRG but my problems are very, very much worse than brain fog. I cannot understand what is being said to me. I cannot understand the written word. I do not know where i live or how to get home if i am out. I do not understand money or how to assess if i have been given the correct change or...

I think the problem with issues with communicating & with cognitive dysfunction, (which can be very severe for me, such that even if i could physically leave the house alone it isnt safe for me to do so, because it can come on at a moments notice), is that they will only accpet you have such a...

Thanks @Simbindi thats reassuring, i see better what you mean now. I only saw that specialist once (it was Myhill, but she wrote an excellent letter at the time, she wasn't quite so 'out there' then). It makes sense what you say about the neuro stuff nowadays. Edited too much personal info

Quick google reveals someone by that name left a psotitve review on Nina Muirhead's CPD module, so possibly a new meber of DwME?

Thanks for that info @meg22 very helpful. I also use that forum a lot but i somehow must have gotten the 'short window' mixed up with the short window for MR. Just to clarify - so you addressed it to 'Dear Decision Maker, please would you consider... etc' How did you address the envolope? IIRC...

Well that is all very worrying frankly. Very worrying indeed. I have never been to a specialist clinic and i dont intend ever to go to one, well not until the entire CBT/GET,GAT,GAM or whatever crap they want to call it next has been thoroughly dismantled. I still have my original dx letters...

didnt the old guideline say we were supposed to have a care plan?

When you talk about writing to the decision maker @meg22 i'm not sure what you mean... presumably you dont mean for a mandatory reconsideration- because otherwise you would have said so, but I wasnt aware you could write to a DWP DM independantly. I assume you're talking about after the...

no but it may have an impact on the assessors, which would massively impact the assessments. I dont know how that can be affected, but if we could change the attitude of many of the assessors it would help.

I dont think so @Peter Trewhitt because i know some people do get longer PIP awards. I havent had an ESA reassessment in 6 yrs... it has been twice 'deferred'. so while an ESA 'award' may not be more than 3 yrs, they certainly dont do everyone every 3yrs regardless what the law says. I think...

because that would be to rub salt in the unface-able wound that is the fact that everything there is to know is not yet known. Its too distressing for them, they cant go into their working day feeling as if they (collectively) dont know everything, it would be too scary. with many lives in...