ME Personal Stories

Marcel Robert’s View Is A Darkened Room In A Rest Home: Life With Chronic Illness ME

    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 […]

4 Downsides (And Bright Sides) Of My Illness

      By Siobhain Simper in The Mighty.   As you may be aware, living with a debilitating chronic illness is no fun: the challenges thrown at you by a disease which dictates your every move can be overwhelming. But today, I’m choosing to celebrate the bright side. By putting a positive spin on […]

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

    By Chloe Leanne Brooks in ME Support.   I used to live by the motto “Don’t wait for the storm to pass, learn to dance in the rain” – but unfortunately, in my life this is no longer the case. My life is stormy. I can’t dance through this pain and heartache any more because […]

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

  By Paul James.   I’m not writing this for me, I’m not writing this for Amy my wife either, today I was made aware of a lady who suffers not only from ME but also from her family’s disbelief and ignorance – so this is for her.   I need however, to start with […]

‘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

From Syndrome A.   When I was in second grade, a little girl started calling me Weird One. I was elated. I felt that I had been knighted with some sort of public identity and it felt wonderful. I felt as though I belonged in some way and I hardly ever felt as though I […]

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

  By Zeraph Dylan Moore in #MEAction.   Here is a question for you:  Is your life small or large? How do you know? Is it possible to have a big life in a single, small room? Or to lead a small life that is lived in many places? Questions like these have become more pertinent to […]

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

  By Johnathan Davis in HUFFPOST.   I have, for a long time, struggled to fully get across the impact this illness has on my life.   I have been asked many times what it is like to have myalgic encephalomyelitis (ME) and I have, for a long time, struggled to fully get across the […]

Makayla And Her AV1

    From No Isolation.   Makayla was diagnosed with ME at the age of 8. Due to her condition, she is not able to attend school full time. “I get tired, so have to pace myself and am not able to see friends and family as much as would like to.” AV1 has helped take the […]

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 […]

Humans Of ME/CFS

  By Lori J. In The Mighty.   When I developed ME/CFS (chronic fatigue syndrome), I had never heard of it. I went to a doctor, hoping to get a prescription, and I expected to be back up to full speed in a few days. But, that didn’t happen. So, over the course of the […]

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