The View for ME
Project

August 2021

In recognition of Severe ME Awareness Day on August 8, 2021, Open Medicine Foundation (OMF) is taking this month to share stories from people living with severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to increase the visibility of this devastating disease.

Approximately 20 million people suffer from ME/CFS globally. It is estimated that 25% of these people with ME/CFS are severely ill. Many cannot leave their beds, and in some cases are tube fed, unable to care for themselves.

To date, there are no FDA-approved treatments or a cure for ME/CFS. Those severely affected can be confined to bed for years on end, disappearing from the world outside. As many people with severe ME/CFS live inside one room, the view stays the same day in and day out.

Learn more:

Read an illuminating account of severe ME
written by severe ME patient Whitney Dafoe.

Let's make sure the world sees who you are and why we need to fund research today!

Donate to Open Medicine Foundation and help those with severe ME/CFS return to the healthy lives they deserve. Your donation of any amount supports critical research conducted across the OMF Collaborative Network.

View for ME Gallery

Stephanie-California

Sick 8 years
I’ve had ME/CFS for 34 years, 8 of those severe and confined to my bed and house. While I’m grateful for the good in my life, it is not without deep grief for the loss of my life that existed outside this window.

Tina-Allentown, PA, USA

Sick 1 year-Well, today I finally looked at pictures from before ME, and it solidified how much of my life has been taken away. How much I used to smile, how full of life my face was.

Rachel-West Yorkshire, UK

Ill since 2021 I first got ME and POTS in June 2019. POTS symptoms only appeared when I crashed.

Evelyn-Mount Holly VT

Sick since 2011
Having your life hijacked with bone crushing exhaustions with NO medical understanding, support, treatment or cure is challenging.

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Nancy-Pennsylvania, USA

I've had ME for 21 years, severe ME for 5 years.
I live in a bubble of loneliness, sickness, and isolation I'd never imagined was possible.

Kate-North Yorkshire, UK

Sick 4 and a half years
Its like being in a cage, and seeing the world pass by through a tv screen, distant and removed from my daily reality. Every day is a fight to cope with the discomfort, the pain, the loneliness, and the tediousness of every day being the same, a struggle to get to the end of the day, so I can start another. Hope is the only thing stopping me from falling apart.

Nicole-Manchester UK

Sick 5 years
Going from an active human to little more than a lump is depressing. Being so alone is too. Being an infant on the outside with an adult brain is the worst.

Mieke-Netherlands

Severe ME from the year 2017
To have ME, means losing your friend being isolated, constantly fight for care, life between 4 walls..

Barcelona, Spain Since 1991 Impossible to do anything

Denise-Beautiful Cumbria, UK

I’ll since 1984. Severe for 5 years.
Having severe ME is worse than being dead. I am alive but not living. This is no life for anyone.

Paul-Toronto, Ontario, Canada

Sick 10 years
My experience with severe ME has been of loss, loneliness & acceptance. I'm grateful to social media groups, online support & new research initiatives.

Holly-Manchester, UK

Ill 3 years
Complete loss of life.

Valerie-Midwest USA

Sick since Fall of 2019
I live alone and had to give up my loving canine companion, as I could no longer care for her (or myself). My new companion: Wilson!

Virginie-France

Sick 4 years
First I have company with my dog, Ludwig. But I wasn’t able to take care of him and was obliged to let him in another home. I live in complete loneliness.

Hazel-SF Bay Area

Sick for 14 years
Despite over half her young life lost to severe pain and isolation, though unable to operate camera or computer, Hazel could point out this view of beauty cast by hazy sunlight through her window, so her mom and caregiver could capture it on camera to share with you.

Marika - Berlin

Sick 2 years
I have two kids. Being bedridden is hard, Not getting better is terrible. But being a source of grief for the family is unbearable. We need more than hope. We need HELP! The picture shows the five doors of my wardrobe stuffe with clothes from a live that’s gone - my daily view

Deena-Rugby Warwickshire

Sick 29 yrs
Spent between 21-24 hrs a day in bed over last 29yrs

Cher-Washington State

Moderate to Severe since 2015
I still hope I'm going to wake up and discover this has all been a nightmare. I want the last 15 years of my life back.

Taylor-Australia

Yolanda - Algeciras

Sick 4 años
Sin vida...muerte en vida

Sick 25 years
I've had ME since surviving a viral infection at 9 months, have been homebound and bedridden for two decades. Everything I've worked for vanished like a mirage, and surviving from day to day is now my greatest challenge.

Kristine-Norway

Sick 5 years
It made me make a digital dance I perform once a month to describe it well. Its an isolated life, you can see here: https://fb.me/e/13u1CL9Mo

Gertien-the Netherlands

Sick 2 years mostly bed bound
I've been homebound for over 5 years and I miss the world outside so much. Not being able to see family and friends is the worst.

This is my view - my desk. It is not even 8 steps away, but I rarely make it there anymore. It’s waiting for me though with my poems and cards, calendar and bills — my life. Some days it gives me hope. Some days it taunts. I wait.

Karin-Switzerland

Sick 4 years
bedbound, even breathing is tiring, and speaking is not possible without getting worse.

Sick 28 years
Bedridden for 28 years. No medical help whatsoever.

I have had severe ME for over 2 years and am bedridden all the time. Always I "live" in darkness and hope that soon a cure will be found for all of us.

Bridgett. Wisconsin, USA

I’ve had ME/CFS for 35 years and severe for 5 years.
People’s presence hurts. Thankful I can still tolerate natural light and at least view the nature around me.

Celeste Eden-kingston Ontario

Sick 7 years
I was active and at my prime; I just want my life back. I can’t breath, move or do much for my own self care.

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Sick 2 years
I spend 80% of my time in bed. I had to re-home my beautiful 6 yo dog because I couldn’t care for her anymore, and I miss her everyday.

Sick for 5 years. Moderate for 24 years.
Missing seeing my family.

Karl-California

8 years total bedridden. Sick since 1989
Like being poisoned all over my body with severe migraines

Sick almost 25 years
Due to severe ME, I've watched two decades pass by as I persist on the sidelines, forced to spend each day primarily in this one little room, quiet and immobile. While time escapes me, the magnitude of that time does not.

Dejan-Switzerland

Ill 3 years
i stare at the hill cluttered with trees. I stare, because i can no longer climb, hike nor walk.

Sick 24 years
Somewhere between living & dead. A zombie life