When you see a media representation of someone suffering with Myalgic Encephalomyelitis (also called Chronic Fatigue Syndrome), do you feel that you are being represented? Do you see your face when you see photos of people with ME or CFS in the media?
“Who can become ill with ME/CFS? Most of us can answer that question with no trouble – anyone!” writes Wilhelmina Jenkins. “There are people struggling with ME/CFS in every age group, ethnic group, and gender. But sometimes the range of the images that are presented is far more narrow than the reality of this disease.”
#MEAction is hosting an online, global concert called #BedFest on May 6th as a showcase for people living with ME to express themselves through song, poetry and art. As part of the virtual concert, musician Kaeley Pruitt-Hamm will re-release her music video “Believe Her” to include faces of people with ME from around the world (along with informational slides about ME).
We want pictures from throughout the ME community, but we especially need pictures from underrepresented groups – African Americans, Latinos, Asians, youth, elderly people, LGBT people – everyone. We want to show the faces of all groups of people living with this disease represented. See below on how to participate.
“When I was diagnosed in 1988, the answer to the question – “Who can become ill with ME/CFS?” – was not clear,” Wilhelmina writes. “As an African American, I was told that I could not have this disease – that it was a disease of middle-aged white women. That misinformation was dispelled in 1995 when Dr, Leonard Jason and his colleagues published a community-based prevalence study showing that African Americans become ill with ME/CFS at least as frequently as other groups. Research has confirmed what we all know – no group is immune to this disease. We need the images presented of those with this disease to reflect that reality.
“I am a shy person and don’t really like having my picture taken. The one reason that I am always willing to have my picture shown in public is to let others who may look like me know that this disease can affect their lives just as it has mine. We need to see the faces of all who may be affected – young Latino men, older Asian women, African American elementary school students – everyone! And then we can all come together to fight our common enemy – a life-crushing disease that does not discriminate.”
Send in your photo
To be part of the re-mix of Kaeley’s music video, send in a photo of yourself in bed holding a sign that says #BelieveME or #BelieveHer by April 30th. Send in submissions to [email protected]
Read about Kaeley’s journey here.
For more information about #BedFest, our global, virtual concert on May 6th, and how to submit a video of yourself performing a song, poem, or other form of art, visit http://stgmeaction.wpengine.com/bedfest/.