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OK this job description (at the bottom) is ominous and explains some of the downhill slide in knowledge/increase in tropes that can be found in their documents. Chronic_Fatigue_Syndrome_Care_Plan_2014_B.docx (live.com) CFS_Self_help_A3_Booklet.pdf (geh.nhs.uk) - this one could be used by one...

So if real knowledge manages to sneak in through them accidentally letting a qualified patient into the process who is heard then it is quietly getting removed at a later stage?

It looks like a complete website update has happened: Chronic Fatigue Syndrome :: George Eliot Hospital (geh.nhs.uk) renamed to Chronic Fatigue Syndrome Still the same consultant listed on the main website pages. But strangely google AI seems to want to associate Dr Edmond Sung...

We've got a lot of things that are based on ... is the word politics? where things end up being based on compromise and committees because even if there is somewhat 'one truth' (I know there never is) and for anything to work there just needs to be simplicity in some of the basic foundation...

Well said it’s that weaponising of mental health insinuations that’s got to be driven out as unacceptable behaviour in the community - I don’t care if it’s utter ignorance and/or delusion /wishful thinking (I’m a hero with the secret to life rather than lucky for having recovered from long...

edited as I'd mulched in another post I'd half done when I hit reply thanks for sharing. it just flags to me the clash of old with new. this is an aside (not for meeting) but there is the awkward internal community bit that the changes to new guideline, CDC and Workwell type stuff coming...

Oh goodness please don't tell me I've lost these decades and it could have all been so different if only I'd loved spinach?

Myalgic Encephalomyelitis: 9 Jun 2005: Scottish Parliament debates - TheyWorkForYou I've just come across this and whilst I'm sure the existence of this project is old news to some, I couldn't be sure this was on here. And whilst it sounds faintly familiar it is always worth reminding myself of...

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?