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Public Awareness of ME/CFS : A Changing Story

Millions are missing. This tragically summarizes the status of research funding for ME/CFS and FM, the staggering financial blow to the economy as patients and caregivers decrease or withdraw their workforce involvement, and most importantly, the millions of people who are missing from communities all over the world due to these debilitating diseases. For decades, this story has been the same.

This story, however, is slowly beginning to change.  We saw small but significant progress when Utah’s Governor, Gary Herbert released an official declaration that acknowledges the ME/CFS community as legitimate, and “recognizes the struggles faced by those afflicted with this disorder, respects their courage, and stands with organizations and individuals throughout the world that are fighting to research, treat, and eradicate this disease.”

The declaration concluded by designating May 2018 as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Month in Utah.

Although formally recognizing ME/CFS in one state for one month might seem insignificant, it is important to recognize the state-level traction this declaration introduces. The story of ME/CFS and FM is no longer a purely hidden narrative of suffering and rejection, but a story where formal government action is beginning to validate and support people living with, in the words of Governor Herbert, “a complex, chronic disease responsible for causing extreme fatigue, widespread muscle and joint pain, and a host of other symptoms.”

BHC is continually working to change the narrative of support, resources, and research for people with ME/CFS and FM. This May, the Center is accomplishing this goal by honing in on three major advocacy efforts to celebrate and advance International ME/CFS and FM Awareness Day. First, the Center was a major force in moving forward Governor Herbert’s declaration, described above. Second, the BHC recently hosted a private event that spread greater awareness of the reality and significance of ME/CFM to influencers of policy, philanthropy, and medical practice; this event included a major representative of the Utah Department of Health.

Bateman Horne Center co-hosted the Millions Missing event in Salt Lake City as part of worldwide Millions Missing demonstrations that took place on May 12. This event, in collaboration with #ME Action, centered on the south steps of the Utah State Capitol and brought ME/CFS and FM awareness to center stage through volunteer efforts showcasing empty shoes – a tangible, powerful demonstration of the millions missing to ME/CFS and FM.

A brief news report of the event can be found at Good4Utah, with the relevant information beginning 1:03 minutes into the video. Pictures of the event can be found in a photo album on the BHC’s Facebook page. We gratefully thank all those that were able to organize and attend this event.

In Dr. Bateman’s words, “The science has moved very slowly because of the lack of awareness and funding.” Therefore, the routes to greater awareness and funding created by these advocacy events is a key step in the BHC’s mission to envision a world where patients with ME/CFS are readily diagnosed, effectively treated, and widely met with empathy and understanding.

The story of ME/CFS and FM is changing, not by chance, but by the dedicated, coordinated efforts of patients, caregivers, advocates, policy makers, and community members worldwide. Bateman Horne Center is steadfast in our dedication to all who suffer from this devastating and debilitating illness. Consider supporting BHC today.