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I was broken by you

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I lie here Pain-filled, screaming at the empty desolation of a broken life Unable to move Unable to think Unable to do almost anything Except hope or despair Tortured without end by every simple thing Just consider this When you walked about your comfortable lives doing your everyday normal things  Ignoring that I existed I was broken by you When you wore your putrid perfume, infiltrating  my space again and again - harming my body I was broken by you When you said, for God-knows-how many times, hope all is well - how could it ever be I was broken by you  When you never asked about my reality - left me weeping in total isolation I was broken by you When you ignored my indescribable moment-by moment suffering - for 27 years I was broken by you When you pretended to know what would help me- then effectively pushed me off a cliff into utter torment with no way back I was broken by you When you arrogantly wrote lies about me- then refused to withdraw them I was brok

What is Tomorrow?

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What is tomorrow except a thousand impossible moments, waiting to not happen for me? Sliced to nothing by every sound imaginable, my body will not comply with tomorrow. All that tomorrow brings then, is great risk and ever-approaching never-ending suffering. Demolished by imperceptibly little, no one sees the tortured life I live, Reduced to a stiff statue on the outside, by even the slightest noise, I am left with nothing but empty jelly and silent screaming, within. Tomorrow lies beyond the shifting strands woven by hope and possibility, Defies the likelihood of any probability to be anything more than tragic pain And anguished dissipating energy. Tomorrow is already crying as it approaches, Then passes me by, Burying its head in a hundred million other lives more interesting, demanding, flamboyant, Yet sees me not, Buried as I am, under a heap of crushed moments from tortured brutal ignorance And broken promises of hoped for better days, long denied. Tomorrow then,

A poem for ME Day 2021

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Poster for ME Awareness Day 2021

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A Brilliant Exposé

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 After almost thirty years of struggling for the medical truth of ME to be recognised, I cannot thank George Monbiot enough for this absolutely brilliant exposé: https://www.theguardian.com/commentisfree/2021/apr/14/super-spreading-long-covid-professor-press-coverage   Affecting more people than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis, Myalgic Encephalomyelitis, which appeared in the standard textbook of Neurology as long ago as 1962, can leave a person as functionally impaired as someone suffering from diabetes, heart failure and kidney disease and as severely disabled as someone with late-stage AIDS, Multiple Sclerosis or a person undergoing chemotherapy.   Psychiatrists, however, with strong links to the Insurance Industry, greatly aided in this by the seemingly all powerful Science Media Centre, have spent the last 30 years spreading the untruth that Myalgic Encephalomyelitis (ME), a WHO G93.10.3 classifie

Severe ME : THREE VERY BASIC CONCEPTS THAT CARERS NEED TO GRASP

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1. Severe ME is unlike anything else you have come across. Just about all you think you know will be turned on its head. Do not, for one moment, ever think you know better than the person. It is extremely unlikely you will even begin to grasp the depth and breadth of what the person is going through, they are so unimaginably profoundly ill and disabled, so you must, gently and always in partnership with the person, respond accordingly. 2. At all times, be aware that if you get it wrong, you may cause catastrophic harm. You can never, ever afford not to be aware of the potential impact of your presence, your movement, any perfumes on your clothes, the slightest noise you make, even your energy levels. You are going to need to learn, on multiple levels, the best ways to be with that person, so that you do not make an intolerable situation much worse. 3. Everything depends on how well you communicate with the person. You must learn how the person communicates and how YOU must communicat

WHAT IS REQUIRED IN A GENUINE BIOMEDICAL ME SERVICE

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  What is required in a genuine Biomedical ME service. This topic is so important to us that I am going to continue to share some of the ideas published in my new book in the Chapter called, ‘Core Components of an ME service: More Notes for Carers.’ A commitment to better recognise, investigate if necessary, treat if possible and support all symptoms, including paralysis. Typically many symptoms go unrecognised or under described and people are left to get on with them to the best of their ability. Appropriate care and support for the the acute hypersensitivities people experience. The hypersensitivities found in Severe and Very Severe ME are not well recognised, explained or supported. Ensuring accountability and responsibility through conducting proper, accurately recorded, sensitive, aware medical Risk Assessments. It is extremely challenging to learn how to safely be with someone with Severe and Very Severe ME without triggering deterioration, even long term harm. A flexible, momen