Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID .

A Message for Severe ME Awareness Day

Whitney Dafoe Shares a Message for
Severe ME Awareness Day 

Today, August 8, 2020, marks Severe ME Awareness Day. In recognition, OMF has launched #TheViewforME campaign to increase awareness of severe Myalgic Encephalomyelitis/chronic fatigue syndrome (ME / CFS), by demonstrating the reality faced by many people with severe ME.

It’s estimated that 20 million people have ME / CFS worldwide, with approximately one in four patients housebound or bedbound.

Those who are severely affected can be confined to bed for years, unable to tolerate light or sound, and disappearing from the world outside. Living inside one room, their view stays the same day in and day out.

Today we are honored to share a message from Whitney Dafoe as part of #TheViewforME Project.

Whitney has profoundly shared his experience living with severe ME in dedication to “All those living in silence and darkness.”

Whitney explains,

“This is my view. 24/7 every day of the week of every month, for the past seven years. There’s a window but I have to keep it covered because I can’t tolerate looking outside for more than a few moments.

There’s a window to my right that I just avoid looking at for too long. I have crashed many times from looking outside for too long and then I get even more sensitive to it.”

There is another view that Whitney has of his IV pole that delivers his only source of fluid and foods:

“I can’t tolerate seeing the LCD display on the pump or the writing on the saline/liquid food bags so both have to always be covered with plain brown (not a bright color) pillowcases.” 

We send our gratitude to Whitney for increasing the visibility of all those living with this devastating disease. And to everyone in the community who participated in #TheViewforME project, your words are powerful, and you are in our thoughts and actions every day.

Together, we will continue raising awareness, and funding critical research into ME / CFS so that people like Whitney may return to having a view far beyond the confines of their bedroom.

To see more #TheViewforME submissions, be sure to follow us on Facebook, Instagram, and Twitter where we will be continuously sharing stories from people with severe ME throughout the month of August.

If you are able, we encourage all those severely affected by ME / CFS to continue participating in #TheViewforME project on your own social media platforms.

Simply take a picture of your daily view, and post to social media using the hashtag #TheViewforME.

Let’s make sure the world sees who you are, and why we need to fund research today.

 


 

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