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Agreed. :) the part that was powerful if I'm remembering the correct one from the MEAction survey was the open comments. Which could be filtered by clinic. I don't think it is that unmanageable for most (healthy and even a very much more motivated pwme who is in a better position) to read...

That reliance on assuming on those factors is starting to look a bit weak when you’ve a generation who have enough people who clearly can say it’s not those isn’t it? not to say eating badly or not exercising is good for you but I’ve felt uneasy for a while about these things moving from being...

I hear good things about the doctors stuff and claire Taylor seems to be doing good things on social media but yes obviously as the point is that it should be set up so that things can’t go wrong etc and that if so it would be picked up on so understand that leading by example on oversight and...

This

This we need to be thinking about to unpick ourselves out of being avalanched under functional ‘initiatives’ that it seems may be insidiously pushed through the various areas pwme might end up in contact with. Like hospitals and GPs but are working like some big third way that really doesn’t...

yep this seems pretty dated cliches. Can't have come from the 2021 guidelines which I'd have thought would have been the starter. And to me some of these seem 'new' and possibly rather than 'debunking' are potentially going to put new myths out there by mentioning things that don't need to be...

Apologies I haven’t read the thread in full snd am possibly coming at this from a side note angle. I’ve found headphones and earphones a not easy solution because I’ve had really bad ear pressure pain all my adult life, get shooting pains to the bit just in front or my ear (dismissed by gps...

it’s tricky with long covid because the timing was such bad luck vs the new nice guidelines for me/cfs Those new guidelines made it clear that the old people hadn’t been testing me/cfs at all, but manipulating access and using chicken and egg coercion and treatment that harmed to exclude...

I have a real issue with this I don’t have the terms right now but don’t know why it isn’t talked about in the scandals terms of the abusive remove all rights deliberately rewrite their history with rumours of their personality take advantage of their fragility abuse of vulnerable people issue...

It’s the abandonment and denial of acknowledging the existence of those who get worse or are harmed (and it’s numerous ways because I think the CBT is a complete mind screw that lasts forever and prevents you being able to ask fir care and think what your symptoms are it trains you so hard to...

Yes basically dying under a different label where it gets called suicide or even death by a different label (if they call it an earring disorder) but really it’s more complex than that and calling it that. I remember watching I think it was the end of the first episode of the Miriam margolyes...

Did that happen? Is one person enough to go up against all that? Of course not so I assume the role was more defined than that in some way? Do we know how long the fixed term was for?

I thought similar when I saw that stat. I don’t know how narrowed down that is too given lots might be misdiagnosed and it certainly seems feeding issues might involve either dumping into a functional box, mental health or sending away. And some might never have come back (gone elsewhere ). It...

Wow that is quite an angle even vs eg three pillows

A way not to have to hear the real stuff so they can if they want carry on doing harm and pretending it bith doesn’t exist and isn’t the consequences of what they recommend med in the past It’s absolutely about healing denial and whitewashing by those who can’t let go

Yes. I was thinking there might be n issue of trying to push a whole new definition of what the illness is through this s I’ve watched the proms come through and this is no different . But it might be their false beliefs / lack of understanding of it plus unwillingness to hear that new...

Bloomsbury Mentorship Programme 2024 In case anyone here is a writer of fiction and would be in a position to benefit from the prize which involves a mentor and other things. Those with a disability are listed among other underrepresented backgrounds eligible to apply. "Submissions for the...

This might be relevant to have its own or another thread (but it relates to the articles above) and I think if I haven't posted this before, even though I drafted a post ages ago when I found it, it was because I didn't quite know what to call the thread, but this is relevant to the...

Yep I agree. If they leave that loophole in they could inadvertently make it not just more likely, but more covered up too. Unintended consequences of targets. 'do something' when the clock hits 4hours even if it was discharge is something ringing in my mind. What options are going to be on...

I don’t think I’ve ever tried it without or would be comfortable enough . In the past when I’ve been in hotels etc I’ve used towels or even bought extra pillows if there weren’t extras available? but I have so many pillows and move position so much I couldn’t guarantee what angle I sleep the...