Showing posts from September, 2020


(An Extract from my forthcoming book   " More Notes For   Carers" ).    STOP WHAT YOU ARE DOING RIGHT THIS MOMENT That means you cannot move any part of you. Your feet are stuck to the ground. Your thighs and your bottom are stuck to the seat, whatever your position was, when it hit you. You cannot change to a more comfortable position, not even an inch. Your toes are immobile, your hands are useless, your fingers too will not move a fraction. You have an itch on your face, another coming to your head. But, you cannot move to scratch them. They are irritating, but impossible to reach. So however itchy or demanding the itches become, you still cannot move to scratch them. Of course you want to. It is a simple enough gesture, quick as a flash in the normal moving world. But no, you cannot move your finger, lift your arm, find your face, move your head, even a degree from where it currently is. None of these movements are possible, all removed from possibility in one bizarre in


Sadly this is a list of some of the ways people with Very Severe ME are let down: Families who do not seek to truly understand Very Severe ME, let us down. Friends who walk away, judge, blame or just get tired of people with Severe ME, as being too difficult to connect with, let us down. Neighbours who chose to ignore the needs of people with Severe ME because they are too inconvenient for them to be bothered with, let us down. Charities who support, in any way, the Biopsychosocial interpretation of ME in any form, by collaboration or validation or simply by not standing up against the misinformation and mistreatment of ME, let us down. Clinicians and other practitioners who chose to follow a psychosocial interpretation and agenda that completely denies the reality of the disease let us down. GP’s and other medical professionals who chose not to do home visiting to those unable to go to them, let us down. Anyone who puts their own opinion and pet theory above the truth