The Hardest Video I've Ever Had to Make | Health Update

Thank you all for your support and understanding during this difficult time. I don't know if I truly explained my point here. Brain fog and speech difficulties made it difficult to find the words. I want to carry on making videos despite being this ill because I know it's important. Not just to me but to people out there. I personally do not have the emotional fight to tackle the big issues our community faces and I don't expect my work to make the kind of difference to people's lives that many of my peers have made to mine or to the progress we've made as M.E. patients to be taken seriously. But I must do what I can: to honour those braver than me and to support our community in my own way. All the links below will contain content you may find distressing. The list of trigger warnings is long and includes: medical abuse/neglect, death and grief, suicide and euthanasia, malnutrition, disability discrimination, as well as profound suffering. If you don't know what Very Severe M.E. is I recommend this video:    • Severe and Very Severe ME/CFS (Myalgic Enc...   I will always be grateful to the families of Merryn Croft and Maeve Boothby-O'Neill who's stories and campaigning reached me when I needed it. You can learn more about both in this news piece from Channel 4:    • M.E.: Lives devastated - and sufferers tol...   Sam Schofield known as Heros.My.Hero on Instagram passed away on the 27th August 2026. His family are continuing his advocacy work there:   / heros.my.hero   If you would like to donate to support M.E. research and advocacy here are a list of organisations: M.E. Action do advocacy work to fight for better education, recognition and research. They organise the #MillionsMissing campaign and there are US, UK and Scotland* divisions: USA: https://www.meaction.net/ UK: https://meaction.org.uk/ Scotland: https://meaction.org.uk/about/about-s... *There is a separate division in Scotland due to devolution of NHS powers and charity registrations. You cannot donate specifically to the Scottish Division. M.E. Research UK fund biomedical research into M.E. via grants for researchers and scientists. They're also selling Christmas cards this year if you'd like to support them that way. https://www.meresearch.org.uk/ https://shop.meresearch.org.uk/ Invest in ME Research UK funds biomedical research and is campaigning to develop a UK/European Centre of Excellence for ME: https://www.investinme.org/index.shtml In Canada the NATIONAL ME/FM* ACTION NETWORK work with governments to improve funding for research as well as advocate for patients: https://www.mefmaction.com/ *FM stands for Fibromyalgia In Australia the two largest M.E. charities providing support to patients are: Emerge Australia: https://emerge.org.au/ ME/CFS Australia: https://mecfs.org.au/ In New Zealand ANZMES, Aotearoa New Zealand Myalgic Encephalomyelitis Service, helps to fund research projects and educate medical professionals. https://anzmes.org.nz/ If you're in Europe I recommend checking which organisations in your country are a part of the European M.E. Alliance: https://www.europeanmealliance.org/gr... Many smaller nations have no recognition or official organisation for M.E. meaning many patients struggle to get diagnosed or understand what is happening to them. If you know of an organisation in your own country fighting for individuals with M.E. please leave a comment so I can update this list. Thank you. Follow me elsewhere for more sewing inspiration: 📸Instagram:   / retroclaude   📌Pinterest: https://www.pinterest.co.uk/retroclaude/ ☕Ko-fi Shop: https://ko-fi.com/retroclaude/shop