OI is a hard one for me. But I get leg symptoms that are very PEM distinctive and come on exactly 36hrs after legs being down eg for an hr for an...
PS I suspect, horribly, most pwme (we just don't hear about because of this) are trapped in some dystopian hell where they are surrounded, at...
I think we absolutely cannot ignore that because of what we are battling against with the cognitive dissonance/status quo way of thinking that has...
it's important because it is the aspect that directly relates to the can't issue and seems to be being directly and deliberately made ambiguous by...
Tetris - that’s what it kind of reminds me of. And how quickly you get to the rounds where you are hardly in control of stopping it all mounting...
Nailed one important issue there. Robbing Peter to pay Paul/APR technically does it but not quite conveying the severity of the situation yet. I...
:heart:
Thanks - can I assume what is fatigue syndrome in this translation is exhaustion disorder?
Yes it’s hilarious but not isn’t it. If it is a medical clinic then appointment might be a few times a year. Certain aspects of the blood will...
Could the pattern that the systems that have tracked it and know in future a recipient could track it back ie legal case possible have banned...
Really refreshing to hear the response of ‘we are finding out what they think before we reply’ from a patient association which to me makes the...
It really is all just propaganda being allowed to charade political selling of ‘how we’d like the world to be’ under a very thinly veiled pretence...
It might help requests for better support for me/cfs and what that looks like if an illness like ED has its current blueprint rather than the...
That’s outrageous - how does this happen, is it political that someone unqualified can inveigle onto it?
Am I being a bit bonkers in saying it seems almost as if -removing the disorder part from the name, exhaustion is still a thing in its own right...
The old evidence based medicine tricking people into short term measures bolstered by false hope (and the natural frustration all humans have at...
Having found steroids calmed my body a bit on these things (rather than opposite) and knowing the adrenaline vs cortisol stuff I do before that...
I just re read that first paragraph and ohhh yess wouldn’t it now!
I did wonder .. just from other current neurologists having been trying to get the message out there for the last five years about the dangers of...
The physiosforme pilot where they measured people in their home was an important step here I think because of the cumulative and all the little...
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