On Tuesday, May 12th at noon, 110 people, reclined, sat and stood gathered around Zoom powered computer screens to commemorate ME/CFS and FM Awareness Day. BHC partnered with Rebecca Cain, #MEAction Utah Representative, to conduct the live virtual #MillionsMissing event. (Link to recording at the bottom of this post.)
The SARS-CoV2 pandemic has changed the lives of people around the world. However, the need to convene virtually was a silver lining for this important day. Previously, the annual #MillionsMissing event took place in the form of a rally on the steps of Utah’s capitol. Speakers addressed the need for health equality in the form of research and medical provider education. Participants brought shoes that they or their loved one is too ill to wear along with a card or sign indicating the years missing from their hiking, biking, running, work, dance or even walking shoes. In the past, few people with ME/CFS and FM were able to attend due to the severity of their illness. But this year was different. The virtual gallery view showed individuals missing from previous years in attendance lying in their beds, or reclining on couches and chairs as they listened to words of acknowledgement, optimism and hope from presenters. Here are the highlights.
Rob Ence, BHC Executive Director
Kicked off the meeting with news that Governor Gary R. Herbert declared May 12, 2020 as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day in Utah.
Addressed BHC’s mission to empower patients, advance research, and improve the lives of those with ME/CFS and FM. She reminded participants of the many dedicated individuals, medical providers, researchers, and volunteers who are working very hard on behalf of those impacted by these debilitating illnesses.
Rebecca Cain, #MEAction Utah Representative and daughter of person with ME/CFS
Explained how the longing to help her mother led to her co-hosting the annual #MillionsMissing events in Salt Lake City, Utah. She now plans to establish a Utah #MEAction chapter and requested volunteers to help her meet the requirements.
To inquire about how to help email: [email protected]
Canada Johansen, “For the Missing” author and person with ME/CFS
Read “For the Missing,” a powerful poem illustrating her experience with ME/CFS.
Messages of Hope from the Missing: All participants were invited to write a short message or single word of hope and inspiration to others on the call, and around the world, who are also impacted by ME/CFS and FM. Holding up their signs with messages of hope in one hand, and the shoes they miss wearing in the other, participants engaged in a collective act of community and solidarity. During these emotional moments, BHC Communication Coordinator, read out loud the messages on the signs and ask about the shoes that represented a part of their life they are missing.
Related how the decision to put up a shingle 20 years ago pushed her into the world of scientific inquiry, clinical research, and provided an unparalleled opportunity to meet like-minded clinicians around the world. These physicians care more about helping their patients than any accolades or financial gain. She acknowledged the millions of people who have already walked the path of having a virus upend their life. “As an advocacy community for ME/CFS and FM our suffering and hard work has put us in a position to help those who once turned away from us when we needed them. So, all will benefit. We, the world, will never be the same. But there will be important changes and progress.”
Spoke about scientists around the world working together to solve COVID-19. This collaboration is speeding up solutions and the ME/CFS and FM community will benefit from the answers they find. Dr. Vernon advised that it’s important to keep practicing handwashing and social distancing since most people infected with COVID-19 do not have symptoms. Furthermore, it is good practice for patients to have a hospital bag already prepared in case they need to go to the hospital for any medical issue. “We are living in a really unprecedented time. If anyone is prepared to live like this, it is our ME/CFS and FM community!”
Dr. Bateman has said many times that the people with ME/CFS and FM are the strong and brave ones of our world. We recognize that it can require a monumental effort, that of climbing a mountain, to write a message, select shoes and log into a computer. We are inspired by your tenacity and inner strength. Thank you for participating in this event, sharing your hope, and sending your pictures.
Watch the #MillionsMissing Event Recording