Stonebird

 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....

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. 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, m...

 Excerpt From  More Notes For Carers Greg Crowhurst https://www.lulu.com/en/gb/shop/greg-crowhurst/more-notes-for-carers/paperback/product-m6qv7n.html?fbclid=IwAR1JS6sGo2v10B5NmQTlBE4K64ZVjdQTTO-7qlCETRXniWu0YW6boJfexr4&page=1&pageSize=4 https://www.amazon.co.uk/dp/B08QW7932V THE CORE COMPONENTS OF A PROPER ME SERVICE For 27 years and counting, we have lived in hope that the NHS would provide a safe, appropriate medical service for people diagnosed with Myalgic Encephalomyelitis (ME), a complex multisystemic disorder, involving profound dysregulation of the central nervous system immune system dysfunction, cardiovascular abnormalities and autonomic nervous system dysfunction. Despite numerous engagements at both local and national level, there is still no such service available. This is not an exhaustive list, just some suggestions, that we would still like to see come about. A specific ring-fenced definition of what "Myalgic Encephalomyelitis” means, incorporating the...

Excerpt From More Notes For Carers Greg Crowhurst https://www.youtube.com/watch?v=A6dDUcs5vo8 https://stonebird.co.uk/morenotes/index.html COMMUNICATION: A COMPLEX ISSUE EVERYONE NEEDS TO COMMUNICATE in order to get their needs met, whether it is asking a question, relaying information, interacting with others for work or other business or building relationship, for pleasure and personal fulfillment. How easy, then, you might think, to say what you mean and mean what you say. Yet even in the ordinary world understanding and meaning can be unclear, confused and not as straight forward as you might hope, depending on how well you articulate your information, as well as how closely the person is listening to what you are saying and also how they interpret what has been said or conveyed. Feelings too can be hard to identify and difficult to express. When a person seeks to communicate with someone who has been diagnosed with Severe or Very Severe ME, communication difficulties are greatly i...

NEW CARE DOCUMENT, SEVERE ME; WHEN YOU HAVE TO SAY, "GO AWAY". I am very excited to announce our brand new Care Document, which you can download from the link below. Here is an extract, raising some very important issues around how people can easily be misinterpreted by Assessors and the importance of a Risk Assessment. "People with ME need a biomedical interpretation of their disease and recognition that it is a neurological disease in order to truly understand their needs. Be aware of any language used in reports or assessments incorporating the words, “ feels as if”, for example, “ the person feels as if their symptoms are too extreme to engage,” rather than the more accurate phrase, “the person’s symptoms are too extreme to engage.” Or “ the person feels as if their pain is so extreme it overwhelms them” as opposed to “ the person’s pain is extreme and overwhelming”. Or, “the person feels as if they have been poorly treated and misinterpreted”, as opposed to, “ the...

  BARRIERS TO PHYSICAL HELP There are many barriers to getting physical help, when you have Severe or Very Severe ME. What SHOCKS us is how little the issues below are recognised, understood or thought through by Professionals and Services. This list is from my new book, “Severe ME More Notes for Carers” : How can you wear comfortable clothes that you feel good in, if the material on your skin irritates, hurts, feels as if it is you crushing you? How can you protect your feet or find suitable footwear when any pressure on your feet is agony? How can you keep warm in bed if the lightest sheet over you hurts you? How can you cover your eyes to protect yourself from light, if you cannot tolerate sunglasses on your nose or eye masks on your face? How can you protect against torturing sound, if you cannot put earplugs in your ears, due to the pain of pressure in your ears or wear ear defenders on your ears or cope with the pressure on your head, due to hyperesthesia? How can you get bac...