Support and advice
“Tymes Trust is the only (UK) national ME charity dedicated to children and young people with ME and their families. Our entire team work pro bono and in 2010 we received the Queen’s Golden Jubilee Award for Voluntary Service, for pursuing the educational rights and advancing the care of children with ME.”
“The ME Association aims to support people with ME/CFS through all stages of their illness. Through our research arm, The Ramsay Research Fund, we support biomedical research into the causes and treatment of ME/CFS.”
A comprehensive reference book written by the late Emily Collingridge and published in 2010. The book contains over 130 pages offering guidance on every conceivable area of life with severe ME. It also contains specific help for carers, family members, friends, and professionals of all types.
This site contains extensive information on the history and politics of ME, explaining how the illness came to be regarded and treated in the negative way that has been for decades. There are also very thorough descriptions of the symptoms of ME and the reality of living with the illness, as well as sections devoted to research findings. Created by the late Jodi Bassett.
Although now archived and out of date, this site nonetheless provides detailed information on past research showing some of the many physiological abnormalities found in ME. Created by activist Maryann Spurgin.
“MEpedia is a project founded by MEAction, powered by the patient community, and built by volunteers including patients, students, and researchers. We are crowd-sourcing a knowledge base on the history, science and medicine of ME, CFS, and related diseases.”
“Voices from the Shadows shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. It was filmed and edited between 2009 and 2011 by the brother and mother of an ME patient in the UK.”
“Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure.”
Blogs and advocacy
This is only a small selection of the many ME blogs available. My limited ability to be online means that I’ve been unable to explore other blogs in anything like the detail I would wish. I apologise in advance for the excellent sites that will inevitably be missing
“The Stonebird represents the idea that you don’t have to do anything to be of beauty and value in the world. Even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters.” Greg and Linda Crowhurst have lived with Linda’s very severe ME for over 25 years. They have produced many documents on every aspect of living with the illness at its most severe: from the agonising symptoms to the political situation that has exacerbated the suffering of so many.
Sophia Mirza was the first person in the UK to have ME registered as the cause of death. This site, created by her mother, Criona Wilson, details the medical mistreatment which led to Sophia’s fatal decline.
Tom Kindlon, a severe ME sufferer, is well-known for his work in re-analysing the PACE trial data. He has co-authored a number of academic papers. His Facebook page details news and developments in the ME world.
“ME Research UK is a charity with the principal aim of commissioning and funding scientific (biomedical) investigation into the causes, consequences and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS).”
“Invest in ME Research is an independent UK charity finding, funding and facilitating a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS), and promoting better education about ME.”