Severe ME

The Great Beyond


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 […]

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.


  By Pheobe Boag in Puffins, Penguins and Me.   It’s been a good few months since my last post, and you’ll soon find out why, I’ve had a lot going on. With so much happening, my limited brain function has had to be directed elsewhere, and my poor wee blog has been neglected as […]

Severe ME: I Had To Fight The People Supposed To Help Me

Me Australia

      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

Severe ME

  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)


  From A Journey Through The Fog by Jo Moss.   I have created a very honest video about the reality of living with severe ME to try to raise awareness. I would really appreciate it if you could watch and share. Thank you. “ME has stolen so much from me but the most frustrating […]

Care For Someone With Severe Myalgic Encephalomyelitis

Severe ME

  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’


  By Jo Moss in The Mighty.   When you have severe ME/CFS, or any illness that causes you to become housebound, you feel isolated. It’s very easy to feel forgotten. Your life is put on hold but the world goes on outside without you. How can an event that is so catastrophic for you […]

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


  By Stonebird. People with Severe and Very Severe ME are not safe within the current health system; this is not an exhaustive list by any means : 1. It is virtually impossible for the most severely affected to travel to a clinic or a hospital. 2. It is extremely difficult to find a knowledgeable […]

We Are Death, Warmed Up

Severe ME

By Paul Tomkins at   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

Severe ME

  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’

Severe ME

    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 […]

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) […]

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