10/29/2025
Dear ME/CFS Community,
After decades of dedicated service, education, and advocacy, the Patient Alliance for Neuroendocrineimmune Diseases Organization for Research and Advocacy (PANDORA Org) will officially dissolve. As we close this chapter, we pause to honor the remarkable work, compassion, and perseverance of all who have advanced awareness and improved the lives of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and related neuroendocrine-immune diseases.
PANDORA Org, previously known as CFS Solutions of West Michigan, was led by Lori Chapo-Kroger, RN, President and CEO, along with Board Members Donna Robillard, Teresa Dutmer, Dawn Schulte, and Laurie DeDecker (deceased). Together, this dedicated team guided the organization’s mission to support patients, educate medical professionals, and advocate for recognition and research.
Our work began in 2005 with in-person support groups across Michigan, continuing through 2014. These gatherings provided education, resources, and fellowship at a time when few medical professionals understood ME/CFS. In 2007, we hosted the first-ever ME/CFS continuing medical education conference in Traverse City, presented by Kenneth Friedman, PhD.
On July 15, 2011, Marly Silverman of PANDORA Org, Mike Munoz of the Rocky Mountain CFS/FM Association, Lori Kroger of CFS Solutions of West Michigan, and independent advocate Mary Dimmock submitted the first-ever advocacy proposal to the CDC’s National Center for Health Statistics to reclassify the U.S. ME/CFS diagnostic code. This effort sought to move ME/CFS from R53.82 (unspecified chronic fatigue) to the neurological chapter of the ICD-10-CM. After years of persistence, the proposal succeeded in 2022, establishing the new code G93.32 for myalgic encephalomyelitis, chronic fatigue syndrome, and myalgic encephalomyelitis/chronic fatigue syndrome.
In 2012, PANDORA Org and CFS Solutions of West Michigan merged and continued operating under the PANDORA Org name, expanding our advocacy at both state and national levels.
In May 2018, Michigan advocates met with Senator Debbie Stabenow’s office to discuss advancing ME/CFS funding and medical education. Her staff connected us with the Michigan Department of Health, medical leaders, and members of the Health Policy Committee to help move forward Resolution 0372.
On May 12, 2018, PANDORA Org helped host a free community screening of the documentary Unrest at the Clinton-Macomb Library, followed by a panel discussion and visibility action. Led by Kristina Osobka, attendees recorded messages to NIH Director Dr. Francis Collins, urging for increased research funding and a cure.
In March 2019, Senator Lana Theis introduced a resolution recognizing ME/CFS as a serious, debilitating disease and calling for improvements in patient care, medical education, and research. With the leadership of Michigan advocate Brian Schull, the resolution was adopted on May 15, 2019.
That same year, Kristina Osobka reached out to the Michigan State Medical Society (MSMS) to propose continuing medical education (CME) credits focused on ME/CFS. Through collaboration between PANDORA Org and the Bateman Horne Center, this initiative helped educate physicians across Michigan.
In 2019, PANDORA Org presented a poster at the International Conference for ME/CFS on the challenges patients face accessing knowledgeable care. That same year, our study, “Lack of Knowledgeable Healthcare Access for Patients with Neuro-Endocrine-Immune Diseases,” was published on ResearchGate, highlighting the urgent need for systemic change. Tina Tidemore was the lead author.
Also in May 2019, Congressman Jack Bergman met with Dr. Ron Davis at Stanford University to learn more about ME/CFS—an introduction made possible through our advocacy. Congressman Bergman later spoke at ME/CFS Day in Washington, D.C., and sponsored letters supporting increased federal research funding.
In September 2021, PANDORA Org joined other national organizations to submit a proposal to add ME/CFS to the U.S. International Classification of Diseases (ICD-10-CM). The proposal was approved, and as of October 1, 2022, ME/CFS is officially recognized in the U.S. classification system—allowing improved data tracking and visibility for patients, including those who developed ME/CFS following COVID-19 infection.
Beyond advocacy and education, PANDORA Org reached people in deeply personal and practical ways. Under Donna Robillard’s leadership, the “Covered in Love” Quilt Program provided more than 150 handmade quilts to people with ME/CFS as gifts of warmth and hope. The “PANDORA Delivers” Meal Program supplied over 1,200 meals to patients across the U.S., led by Sandy Sizemore. Volunteers also distributed gas cards for medical travel, testified before the Chronic Fatigue Syndrome Advisory Committee (CFSAC) in Washington, D.C., and provided in-service education for hospitals and physicians’ offices.
As PANDORA Org concludes its formal operations, we do so with deep gratitude to every volunteer, advocate, donor, and supporter who made this mission possible. Together, we built community, educated the public, and gave voice to thousands of patients too often overlooked by the medical system.
Though the organization is closing, our shared commitment to awareness, compassion, and change will live on—in every quilt sewn, every meal delivered, every voice raised, and every life touched by PANDORA Org’s enduring legacy.
In Loving Service,
Lori Chapo-Kroger, RN, President & CEO
and the PANDORA Org Board of Directors
