It is with heavy hearts that we share the passing of ME community advocate, Cindy Siegel Shepler. Cindy lived with myalgic encephalomyelitis (ME) and multiple other health issues. She dedicated much of her increasingly limited time and energy to advocacy, increased awareness, and increasing research funds for ME.
She had a true passion to protect the younger generation from dealing with what her generation had to face. She also had a talent for making connections. She would introduce people to one another or lead them to certain projects. Cindy was protective of the community and upcoming advocates, which showed in actions like her offer of a medical disclaimer to be used in #MEAction groups as well as in her advice to other advocates.
Locally, Cindy managed quite a feat of advocacy in May of 2017. She organized a trifecta of ME awareness in her city of Knoxville, TN in the form of a mayoral ME/CFS Proclamation, a ME/CFS City Resolution, and the lighting of the Henley Street Bridge. Read more about her work in Tennessee.
#MEActionTN was proud to have her as part of their state group and hope to help continue to expand on her example of advocacy in their state. She will be missed. She was always willing to share her wisdom and experience with her fellow Tennesseans as well as neighboring states and advocates across the nation.
Cindy was proud to be an Open Medicine Foundation (OMF) Community Ambassador. Cindy established a relationship between OMF and the American Contract Bridge League (ACBL), which will continue to bring much-needed awareness to ME.
“After two years of educating, lobbying, calling, and writing, Knoxville’s Saturday Bridge Club held the first OMF fundraiser in August of 2017, which coincided with the first Annual Community Symposium at Stanford University,” Cindy said. “Additional fundraisers were also held; the momentum was building. My hope was to connect and go National.
In 2018, Cindy was introduced to California ACBL members and fellow OMF Community Ambassadors, Beverly Weiss and Dr. Art Mirin. As a result of their newly formed team and working with the OMF, the ACBL became a sponsor of the recent Stanford Symposium!
“Persistence pays!” Cindy said.
Ryan Prior added, “Cindy was one of my best friends, and we met because of working on a number of advocacy projects together related to ME. She had tremendous vision for what could and should be done for those suffering with the illness. After living with ME for decades, she dedicated much of her final years to pushing for awareness and research.
“One of the things Cindy found most shocking was that a younger generation was growing up also affected by Lyme and ME. She believed the medical establishment should have solved these diseases during her lifetime, and found it intolerable that younger people like me or Jamison Hill or her nephew Andrew would have to experience them. She had a strong will to continue living that creed, even into her final days.
“As a member of a new generation, I was a direct beneficiary of her kindness, compassion, and love on a daily basis. I will miss all of that, but it’s important to note that we can all honor her by embodying the things that she stood for in life. Because she had several different diagnoses, she believed as many do that ME and other autoimmune or dysautonomia diseases were all inextricably linked. Her vision was to help those not just with ME, but with chronic diseases in general.”
It was very important to Cindy that efforts she helped begin would continue on and she made an effort to ensure that they would. Cindy, we will remember you and we will continue this fight. May you rest in power.
Cindy with her husband David and sister- and brother-in-law, Amy and Mark Smith, helped establish the Andrew Eric Smith Chronic Lyme Memorial Fund in memory of her beloved nephew. Donate in memory and honor of Cindy.
Do not grieve alone. If anyone needs to reach out for support, please see our list of resources.