By Natalie Akoorie in M.E. Awareness NZ. Marcel Robert lives in a rest home. He is 31 years old. Natalie Akoorie finds out what it’s like to be unable to live life because of an illness and why funding for research is so important. In a darkened room at Oxford Court Lifecare in […]
ME Personal Stories
4 Downsides (And Bright Sides) Of My Illness
This Chronic Syndrome Affects Mainly Women & Is Really Hard To Diagnose
By Katy Fallon in Refinery 29. When I was a teenager, my mother fell ill with M.E. and I saw her struggle to get her symptoms recognised – even though she was a doctor herself. Myalgic encephalomyelitis (M.E.) is a chronic condition which affects 250,000 people in the UK and around 17 million people […]
Inside I’m Dancing
Dealing With Anger Now That I Have Chronic Fatigue Syndrome
By Jamison Hill in The Mighty. I love to break things. Yeah, I know, who doesn’t? But I get such a satisfying feeling when I break something. Maybe not a bone, or a really expensive gadget, but breaking something cheap and discardable is satisfying to me. Very satisfying! In 2011, after I was sick for […]
My Wife Isn’t Tired
‘I Was In Denial And Ashamed By My CFS’
By Simon Del Favero in SBS Insight. When Simon realised that treatment options in Australia for his chronic fatigue syndrome were limited he looked overseas for answers. I was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in early 2011 after a severe bout of glandular fever. In the years prior to my diagnosis I was studying […]
When I Can’t Hide My Chronic Fatigue Syndrome Anymore
By Kirsty Hird in The Mighty. I remember in the late 1990s watching a film about a group of teenagers who dabble in witchcraft, with disastrous consequences. They use a form of magic called a “glamour,” which allows the witches to create an illusion, concealing the true form of something. In the film, glamours are used […]
Humans of ME/CFS – Camille C.
From Solve ME/CFS Initiative. I was an elementary school music teacher, community volunteer, church pianist, wife, and young mother when I became ill in March, 2000. My doctor said I had mono and I was totally bed bound. The sickness wiped away my memory and I lost memories of my children as babies, […]
On Autism & Chronic Fatigue Syndrome
Grandma With Severe Chronic Fatigue Syndrome Misses Daughter’s Wedding And Grandchildren’s Childhoods
By John Siddle in Surrey Live. The cruel condition affects 250,000 people in the UK. An 80-year-old from Farnham has had to skip every family gathering, birthday and Christmas over the past 20 years after a shock diagnosis of a devastating ‘living death’ illness. Nancy Collins a former NHS nurse was struck down with Myalgic Encephalomyelitis (ME) 20 […]
Living Deeply In Tiny Rooms
How To (Almost) Disappear Completely
By Joseph Stashko in Medium. I often wonder how it’s possible to be this sick and still be alive. For the past few months, I’ve had a recurring dream. I’m running. I’m not running from anything, and there’s nothing hostile about where I am; it’s actually very close to where I live. I run and run, […]
Having ME Is Like Being Permanently Encased In A Suit Of Armour
Makayla And Her AV1
Losing A Beloved Career To A Chronic Illness: Caroline’s ME/CFS Story
By Caroline Christian in Health Rising. After 11 years of marinating in chronic illness, my ability to work has all but evaporated and I have entered the world of full time disability for the first time in my life. This time of year would normally mark a return to university life after the summer break. […]
What Would You Do If You Had A Horrible Disease That Doctors Could Not Cure ?
By Liisa Lugus in Quora. I have a horrible disease that doctors can’t cure. It’s called Myalgic Encephalomyelitis. I have a profoundly severe form that has left me paralyzed for 9 months (and then for shorter periods), mute for longer, unable to read/use computer/listen to music for 6 years or to have any one […]