Showing posts from August, 2020

Stonebird Review of Dialogues from a Neglected Illness

With a wealth of moving and harrowing material, this   series 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


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

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 s


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,


Time and again, our experience is that people rarely, if ever, appreciate how difficult or impossible just about EVERYTHING is for the most ill. That is why we wrote this piece. WHY DO SOME PEOPLE HAVE TO STAY IN BED? Orthostatic intolerance/dysautonomia Muscle weakness Extreme pain Paralysis Shaking spasms/tremor No energy Muscle fatigue Difficulty waking up Need for extra sleep Difficulty feeling rested Nausea Feeling extremely ill Post-exertional deterioration Dizziness Breathlessness/low oxygen Difficulty processing environment Heart issues Loose joints Inability to sit up/be upright WHY DO SOME PEOPLE NEED TO STAY IN ONE ROOM? Safety Security Perfume-free environment Noise protection to limit exposure Light sensitivity requires darkened space Comfortably arranged to meet need Decorated minimally to avoid over-stimulation No energy to move Not able to tolerate interaction with others Not able to tolerate motio