by Lex Thomas
For Michele Miller, co-founder together with her husband Ken of the Central Mass Lyme Foundation, Lyme disease awareness and prevention are missions and goals she strives for every day. Michele Miller’s commitment to spread awareness of Lyme disease has its roots in a personal tragedy. On February 9, 2013, her mother Jeanne Cloutier died as a result of late stage Lyme disease, following several years of disabling pain, suffering, and misdiagnosis. Since launching the foundation in 2014, Miller has counseled hundreds of individuals and families affected by Lyme disease, and provided information and resources that she claims are not readily available and are largely unrecognized by the traditional medical community. Miller believes the illness is misunderstood, frequently misdiagnosed, and often left untreated, with potentially devastating results.
On Saturday, September 23, the third annual Central Mass Lyme Conference will bring together medical experts, researchers, healthcare professionals, and patients and their families for a day of presentations, workshops, and support. Speakers include Dr. Kenneth Liegner, a Board Certified Internist with additional training in pathology and critical care medicine, and a well-known Lyme specialist, practicing in New York state; Dr. Daniel Cameron, an epidemiologist and Lyme disease pioneer; Dr. Elena Frid, a Board Certified neurologist and clinical neurophysiologist in New York, with a clinical focus in autoimmune disorders and neuro-Lyme conditions; Dr. Steven Phillips, a Yale-trained physician and researcher specializing in the diagnosis and treatment of Lyme disease; and Dr. Neil Spector, an oncologist and a cancer researcher at Duke University School of Medicine, who has described his painful near-death experience with Lyme disease in the recently published memoir, Gone in A Heartbeat: A Physician’s Search for True Healing. (On Friday, September 22, Barnes and Noble in Lincoln Plaza, 541 Lincoln St., Worcester, will sponsor a book night featuring six authors who will sign their books from 7 to 8:30 p.m. A portion of all in-store sales, including non-Lyme related books, will be donated to the Central Mass Lyme Foundation.)
Twenty exhibitors, including testing laboratories, educational groups, supplement and essential oil suppliers, and Massachusetts-based support groups, will also participate.
While the conference is one of the foundation’s yearly highlights, it’s only part of what Miller does to spread awareness and information throughout the year. The foundation has recently added a phlebotomist to its resources to help people with Lyme disease testing. Miller, formerly a librarian with the Wachusett Regional School District, has also been busy with her Lyme library campaign, distributing kits that include books, videos, flyers, and symptom checklists to public libraries in Central Massachusetts. She’s frequently invited to speak to groups, and says that one of her favorite questions is what “ticks” her off.
“Medical doubt is what ticks me off the most,” she says without hesitation, “as well as how patients are treated and even invalidated. Lyme disease is the elephant in the room. It’s time for that to stop.”
She believes that information and the willingness to advocate for oneself are the most important things Lyme disease sufferers can do, and the conference is designed to give patients and their families the tools they need to fight the disease head-on.
“The event is a wonderful and knowledge-packed day when we all come together to share information,” says Miller. “Everyone can benefit from the conference. Anyone with a chronic illness should attend. Healthcare providers should attend. Our goal is to empower people with information. No one should have to suffer with Lyme disease alone or without the best possible treatment and care.”
The Central Mass Lyme Conference will take place on Saturday, September 23, 9 a.m. to 4:30 p.m. Registration 8:30 a.m. Worcester Technical High School, 1 Skyline Drive, Worcester. $10 in advance, $20 at the door. Tickets available online at CentralMassLymeConference.com.
Photo: (Left to right) Ken Miller, Paula Denoncourt, Michele Miller, Ron Gangemi, and Darlene DiBara O’Connor.