(An Extract from my forthcoming book"More Notes ForCarers" ).   
STOP WHAT YOU ARE DOING RIGHT THIS MOMENTThat 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 instant, beyond your …


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 of Severe…

Stonebird Review of Dialogues from a Neglected Illness

With a wealth of moving and harrowing material, thisseries of Videos informs, illuminates and manages to convey something of what the most severe ME patient is going through. As Stonebird provides information and raises issues pertinent to Very Severe ME, that is what this review will focus on. On a practical note there were problems opening the videos on the website, one contributor’s voice was completely missing when played, repeatedly, so that content and important information was missing from the Management of Very Severe ME video; the film also froze repeatedly and would not continue at one point. Some of the other films would not open at all or froze too. That could be very disruptive and off putting, especially to anyone with visual and cognitive disability or with depleted levels of energy. We do not know how widespread this issue is or why, but it did make it hard to watch and review the material. We also found that some of the written material was not displayed long enough o…


Severe ME is a hellish experience that you live and endure without treatment, cure or respect. Severe ME is not knowing how to cope from minute to minute, moment to moment. Severe ME is being tormented by people doing ordinary things. Severe ME is being inhibited by paralysis. Severe ME is being totally ill, all the time. Severe ME is being unable to read. Severe ME is being unable to hold anything. Severe ME is falling over regularly. Severe ME is your mind not working. Severe ME is being unable to speak on the phone. Severe ME is finding that going to bed or remaining in bed makes you feel even more ill. Severe ME is discovering that there is no possibility of rest, ever. Severe ME is being unable to see anybody because they make you more ill, because you are so hypersensitive. Severe ME is not knowing what to eat that won't hurt you. Severe ME is being neglected by the Health Service. Severe ME is having to regularly have to prove you are ill, just to get your benefits. Severe ME …

Lock Down Forever

As Lock Down eases here in the UK, the agony of permanent isolation and endless neglect for the most severely ill, is much more acute, as Linda expresses in this terribly poignant poem :

They make me feel lonely. They do, With their laughter and easy chatter, The sound of champagne corks bursting And the general loud jollity of their gathering, Echoing across the garden To me, Sitting In isolation, Not just for Lock Down’s sake But Always. For their noise Is a danger to my health The champagne uncorking Paralysed my left leg, Increased my pain, Blanked my mind further, Left me stumbling. As people start to meet up Have garden parties And begin to mill about again Or cycle at speed past my door, Let us remember the truth That the virus has not actually gone away. Despite the frivolity, It's still there Lurking And can still kill The innocent bystander Who has no chance of survival. As they dismember the support chains, Will the understanding still be there I wonder? The understanding th…


Bravery is required: * To keep going when you feel like despairing,when there doesn't seem to be any hope of things getting better, of a clear way forward. * To dare to stand up against any system that tries to deny or bury the truth of the physical seriousness of this disease. * To advocate for your loved one, to find the self confidence to speak up and keep speaking up year after year. * To look beyond the dreadful suffering to see the person you love fighting against the illness to still function and maintain their self-integrity and identity while it is being daily stripped away by the illness. * To give up your job and all you used to hold dear are in the world so that you can give the one you love the best care possible and the most comfort possible. * To learn and grow in spite of the suffering you both experience. * To believe in your marriage, your relationship still and to refuse to let it disappear and be destroyed by the complexity of daily living, the massive losses…