By Whitney Dafoe. Having Severe ME/CFS is so close to being dead. There’s really no other way to describe the experience I have had. I don’t think it’s something that people who haven’t had severe ME/CFS can likely understand. Looking back at who I was when I had mild and moderate ME/CFS I’m not […]
Severe ME
Celebrating Whitney Dafoe And His “Awakening” On His 37th Birthday
By Cort Johnson in Health Rising. It’s Whitney Dafoe’s 37th birthday. He’s had chronic fatigue syndrome (ME/CFS) since 2004 and has been severely ill since about 2012. Fed by feeding tubes, eyes and ears covered, too weak to move, unable to speak or tolerate almost any stimuli. Whitney has hovered in a kind of […]
My Story – Living With Severe M.E.
By Jo Moss in A Journey Through The Fog. Foreword: Myalgic Encephalomyelitis (M.E.) is an incredibly isolating and debilitating condition but I don’t want your sympathy, that’s not why I’m writing this piece. All we (the M.E. community) ask is for understanding and education. We want to be taken seriously by medical professionals and […]
Post Thirty Four. Planning For A Future With Severe ME.
Severe ME: I Had To Fight The People Supposed To Help Me
by Sam* in ME Australia. Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says […]
The Severe ME Bedbound Activity Masterlist: Part 1
By Sarah Stanton in Medium. Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. With that in mind, here […]
Living With Severe ME – A Glimpse Into My World (Video)
Care For Someone With Severe Myalgic Encephalomyelitis
By Greg Crowhurst in M.E. Support. Linda, my wife, collapsed over two decades ago and very quickly became bed bound. In the months leading up to her collapse, she had had several operations and a long chest infection. For almost two years prior to that she was in constant pain, experiencing severe pins […]
Olwen Tinnion – RIP
I just heard this morning that we have lost Olwen Tinnion who had become very ill with pancreatitis. Sadly, we also know that Olwen had severe ME. Her sister has said that she passed very quickly and peacefully, surrounded by love and family. This has hit me like a bombshell this morning. Olwen was […]
When The Isolation Of Illness Causes The Outside World To Feel ‘Alien’
Interview: An insight Into Life With Severe ME
From the ‘Not Just Tired’ Blog. This is the first interview of my new blog feature – “Interviews with people living with ME/CFS.” The idea is to interview people living with ME, and gain an insight into their lives, to help raise awareness and increase understanding of this disease. You can read more about it here. […]
55 Reasons Why NICE Must Recommend A Home Visiting, Biomedical Service, For People With Severe Myalgic Encephalomyelitis
We Are Death, Warmed Up
By Paul Tomkins at paultomkins.com. It is torture, of a kind. The unrelenting jab of needles into the spine. The vice clamped to the temples and tightened. The syringes slowly draining blood from the thighs, injecting concrete into the calves. Poison swelling in the stomach, pumping to the veins, tying knots in the guts. […]
What It’s Like To Have Severe ME/CFS
By Isabel Walter in The Mighty. Around 25 percent of people with myalgic encephalomyelitis (ME) are severely affected by the disease. Typically they’re housebound or bed-bound, sometimes for years, unable to carry out the basic tasks of day-to-day living. I’m one of them. When you have ME, the world gets magnified. Things become too […]
Severe ME: ‘Took Nearly 40 Years To Be Diagnosed’
by Sasha Nimmo in The Blue Coffee Mug Blog in ME Australia. Between 24,000 – 60,000 Australians have severe ME. This is the first in a series telling the stories of Australians with severe ME. Given the wrong medical treatment and intervention harmed this patient’s health to the point of no return. Disbelief […]
Severe ME
Studies have shown that about four in every 1,000 people in any population suffers from ME. In York the population is around 200,000. That means there are about 800 people in the York area with ME. Published figures also suggest that 25% of people with this illness have it at a severe level. That […]
Body Count: The Tragic Stories Of Severe ME
By Russell Logan in Shout About ME. “…the opposite of life is not death, it’s indifference” — Elie Wiesel They’re known as the ‘invisible’ ones, the severe Myalgic Encephalomyelitis (ME) patients that governments, doctors, researchers and communities refuse to acknowledge. The US CDC even renamed the illness Chronic Fatigue Syndrome (CFS) […]