Instead of looking at literature as to whether 1000 eg cats with (or without) the same thing (which I doubt is possible as the comorbidities etc are different) to 'cite' most can deal with x so that cat reacting like that 'is wrong' or used as an inference towards said cat and 'maybe they are being fussy', manipulating, or 'its in their head' you just find something.
such a good analogy Bobbler
We've just got to get rid of that word "Tired". It's being repeated in the Inquest. "Tired" is the most trivialising word, it leads the general public and some/most medical/health professionals to think that ME 'tiredness' is something they may have experienced, or something close to it. Because of the word. Everyone has experienced tiredness. That word is sabotaging us
This times a million. So sick of seeing a life-destroying disease reduced down to 'tired', 'tiredness', 'fatigue', 'chronic fatigue'. That has GOT to GO. ME will never be taken seriously as long as people think it's 'tiredness', which they of course see as just laziness and therefore to be mocked and laughed at.
AMEN! 'tired'....it is grotesque word to use imho
I saw a dr on reddit say something like 'when i tell myself i'm f'ing tired, it becomes a self fulfilling prophecy'
Its just almost impossible when this is what they think, to get anywhere. And why wouldnt they think it? This is what they're taught, what gets repeated over & over.
I'm not tired, i'm ill
I think maybe the needs of people with ME/CFS need to be explained much more in terms of the actual experience of the patient. The problem IS the symptoms, which include both feeling terrible and blocks to function at a reflex level.
And the management has to pivot on management of the symptoms. Quiet side rooms are not just a kindness to sensitive souls. They are a physiologic necessity.
oh thank you, just thank you a 1000 times thank you, for getting it
Explaining it didn't seem to do any good because it was processed by them in a way that led them to tell me it was normal (when it isn't).
No, ime drs are entirely unable to hear things they are not expecting to hear. It doesnt matter what you say or how you explain it, or how much they seem to be listening. The words somehow get filtered and twisted into something they're familiar with, something they're expecting. Its like in their minds there are 500 boxes and everything thats said gets put into one of them. ME needs a new box.
No disrespect to anyone else, but
@Jonathan Edwards is the only Dr i have ever come across who can listen without filtering & morphing whats said into something he's expecting to hear. Its a joy to speak to someone with a kind of 'clean slate', who is actively looking for
whats actually said rather than simply assuming whats said will be some version of what he already knows!
Every hospital in the world has signs and rules about noise: be quiet. It's heavily enforced by staff and with good reasons.
Not in the UK they dont! Goodness, they are louder than a building site! and the nurses are the loudest ones, they positively
shout when talking to you, even on wards full of sick people, even after you tell them you have a splitting headache. I honestly find nurses to be the loudest people of all. It seems to be cultural, they have one volume & its FULL
