We are excited to announce the launch of the ME/CFS Collaborative Research Center’s outreach and engagement initiative led by the Center for Solutions for ME/CFS at Columbia University.
The cornerstone of this effort is the establishment of a Community Advisory Committee (CAC) to partner with the NIH Clinical Research Centers (CRCs) at Columbia University, Cornell University, The Jackson Laboratory, the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network, and the Data Management Coordinating Center at RTI International. The CAC is comprised of 14 individuals including people living with ME/CFS, caregivers, advocates, and representatives from #MEAction and Solve ME/CFS Initiative. We at the Center for Solutions for ME/CFS at Columbia University will serve as the bridge between all stakeholders by coordinating the effort.
The CAC has designated working groups based on the needs of the community as well as the Collaborative Research Centers (CRCs). The initial working groups will focus on information dissemination to address communication matters, study feasibility to aid in clinical study design, and scientific priorities to develop recommendations for future ME/CFS research pathways. The goals of the CAC will be to increase communication, research participation, and accelerate the pace of research.
To complement this work, we have also created the Center for Solutions for ME/CFS Communications Hub, which is comprised of representatives from nine network-affiliated organizations. The Hub encourages cross-promotion and amplifies the distribution of network developments and findings. Our cooperative effort ensures the timely distribution of information and significantly broadens the reach to ME/CFS stakeholders.
For more information on the launch of the ME/CFS Collaborative Research Center’s outreach and engagement initiative, tune into the NIH’s ME/CFS Working Group Call this upcoming Thursday, November 5 at 11AM ET.
Click the link below to join the webinar:
Center for Solutions Community Engagement and Outreach Team
Director, Community Outreach and Engagement
Manager, Community Outreach and Engagement
CRC Community Advisory Committee
BA Occupational Therapy
Microbe Discovery Project
Person living with ME/CFS
Bateman Horne Center
Angela is the Communication Director at Bateman Horne Center (BHC). She has a bachelor’s degree in organizational communication from the University of Utah. After spending 10 years managing public involvement for Utah Department of Transportation projects her ME/CFS progressed to the point that she was forced to leave her career and receive care from a family member for several years. Angela served on the BHC Board of Directors (formerly OFFER) for 10 years before taking on her current role. Having experienced the medical system’s lack of understanding about ME/CFS before connecting with a knowledgeable and experienced provider, she is passionate about provider and patient education.
Cherylle McFarlane, RN
Challenged with ME/CFS
Cherylle has been an RN for 30 years. She holds a MHA and is a Certified Life Coach. Cherylle is passionate about health, advocacy, education, alternative medicine and bridging the gap between Eastern and Western medicine. After seeking help for 21 years, in 2014, she was officially diagnosed with ME/CFS and Arnold Chiari Malformation, a brain defect linked to ME/CFS. During recovery from brain surgery in 2019, Cherylle published a children’s book “Mommy Wants to Feel Better” to initiate conversations for families dealing with family members challenged with chronic illnesses. She also has an inspirational Podcast called “Just Praying”.
Emily has over fifteen years of policy, organization, and advocacy experience in both the non-profit and government sectors. With five years experience on Capitol Hill, Emily contributes a keen understanding of both state and federal policy processes while cultivating strong grassroots organization and patient representation. Prior to joining the Solve ME/CFS Initiative, Emily served as the director of policy and advocacy for an autism organization. There she spearheaded major overhauls in disability, early intervention, and education policies. She is also a veteran of several successful electoral campaigns, where she trained others in effective social media and online organization. She received a B.A. with honors in politics and international relations from Scripps College in Claremont and earned her M.A. in American politics from Claremont Graduate University. Emily draws inspiration from her mother who has battled ME/CFS as well as chronic autoimmune and thyroid conditions since 1999.
Jaime is the Director of Scientific and Medical Outreach at #MEAction. She is responsible for fostering communication between research scientists, clinicians, and people with myalgic encephalomyelitis. She has represented #MEAction at CDC, NIH, Capitol Hill, Columbia University (Collaborative Research Centers), and Stanford University; and she has been the invited author and/or committee member for national healthcare organizations CIHR (Canada), Office of Health Protection (Australia), National Institutes for Health Care (UK) and NIH. She works as a research consultant to Stanford University’s Stanford Genome Technology Center on ME/CFS-related projects.
Jessie is the Engagement Coordinator at Solve ME/CFS Initiative. She has a bachelor’s degree in psychology from Pepperdine University where she also studied non-profit management. Before joining Solve M.E., she served as an educational advocate for students with disabilities and the coordinator for a children’s literacy organization. She is passionate about advocating for access to healthcare, information, and support for the ME/CFS Community.
Kathi Kuehnel, J.D.
Kathi is a lawyer in Michigan. She retired from the auto industry, having held director level positions at Ford in the Chairman’s office, Dealer Policy Board (alternative dispute resolution), and State and Local Government. She has worked as an electron microscopist, and has a passion for evolutionary biology and genetics. She holds a B.A. (highest distinction) from Northwestern University in Biology and Anthropology, a J.D. from Cornell University School of Law with a specialty in Science, Technology and Law and a Professional Certificate, Harvard Kennedy School of Government-State and Local Government. She is active in environmental organizations and is the mother of a daughter with ME/CFS.
ME/CFS Caregiver and Patient Advocate
Mary worked at Pfizer for 31 years in roles that spanned drugmetabolism research, clinical data management and database administration, development of R&D information systems, and R&D business process improvement and integration. She retired in 2011 when her son became ill with ME. Since then, she has worked on a number of US and international advocacy initiatives to advance research and improve clinical care for people with ME. More recently, Mary has partnered with Dr. Lucinda Bateman of Bateman Horne Center to organize the US ME/CFS Clinician Coalition and its annual Summit, now in its third year. Mary is passionate about finding ways to accelerate research and the delivery of treatments to patients and to broaden the research.
Neal Goldberg, PhD
Neal holds a doctorate in Psychology from Fordham University with post-doctorate training in both child/adolescent and adult psychotherapy. Neal is a passionate proponent of healing through laughter and empowerment through joy. He founded and is the Executive Director of Lev Leytzan: The Heart of Therapeutic Clowning, Inc. Neal collaborated with Open Medicine Foundation to launch Hope & Heart, an initiative to build international awareness for ME/CFS. The campaign elicited poems and art submissions from people in 17 countries. In addition to the poem and art contributions, the campaign culminated with an original song, “Keeping the Hope,” used an anthem for many with ME/CFS. His awareness of ME/CFS began five years ago when his child had become progressively more ill from this debilitating disease. The difficulty in his child receiving a diagnosis, the little scientifically known by doctors about the disease, and limited resources available to patients led him to become more involved by becoming a liaison between those suffering and the medical community.
Nina Muirhead, BMBCh MEd
Chair Education Group, CMRC
Forward ME, UK
Individual Living with ME/CFS
Miss Nina Muirhead is a Dermatology Surgeon working in the UK National Health Service. She qualified in Oxford and is a member of the Royal College of Surgeons, she has a Masters Degree in Medical Education. She is a Director of Doctors with ME, Chair of the CMRC Education Working Group, Member of Forward ME and an active member of education working groups within CDS and ICanCME. She has personal lived experience of ME/CFS following EBV glandular fever (mononucleosis) in 2016, for at least 6 months she was severely affected and is now mildly affected. She works part time as a doctor and has established international connections with ME/CFS researchers and clinicians.
Rochelle Joslyn, PhD.
Rochelle has a PhD in Immunology and over a decade of experience working as a scientist in human biomedical research. After developing ME/CFS in 2004 and seeing the immense need for scientific breakthroughs to transform poor medical care, she pursued a research career during intermittent remissions in her disease. Rochelle participates broadly in the ME/CFS scientific and advocacy communities, volunteering with many institutions, organizations, and individuals to drive progress for the disease on many fronts, largely behind the scenes. She has served in many patient and scientific advisory roles, bridging the gap between the lived experience of ME/CFS and its scientific inquiry. Having experienced the devastation of this disease, she is driven to do everything she can to move the ball forward for people living with ME/CFS, from informing scientific study designs to combatting medical stigma to federal advocacy.
ICanCME Research Network
Patient Partner in Research
Individual Living with ME/CFS
Sabrina has worked within the private, public and not-for-profit sectors for over 20 years. Her work in politics, education and community development helped shape her perspective and fine tune her approach to meaningful engagement and positive systems change. In addition to her role with the CAC, she also serves as a member of the ICanCME Steering Committee, the Chair of the ICanCME Trainee Development/Medical Education Working Group and as a passionate patient advocate. She also served as a Patient Engagement Research Ambassador for CIHR’s IMHA Institute from 2018-2021. Sabrina uses her passion, skills and personal experience as an individual living with ME (and common comorbidities), in the fight to have the illness understood, researched and removed from the shadows once and for all. She’s very thankful for the opportunity to learn from, and collaborate with, others on the CAC.
Susan is a retired professor of Pediatrics and Social Work whose career focused on healthcare with an emphasis on the impact of HIV/AIDS on women and children, intellectual/developmental disabilities and family-centered care. She taught graduate and undergraduate students from diverse professions and maintained an active clinical practice during my academic career. As a pwME, she faced challenges obtaining a ME diagnosis (>5 years), appropriate care (treatment denial by insurance), in addition to the stigma that comes along with the illness. She is committed to improving the dissemination of scientific ME knowledge, decreasing the stigma experienced by patients, along with expanding access to diagnosis and treatment, particularly for people of color (POC), who are disproportionately affected by ME and are currently underrepresented in individuals receiving ME care.
Bateman Horne Center
Tahlia has over fifteen years’ experience working in a variety of healthcare settings. After graduating with her degree in exercise science, she worked as the lead rehabilitation specialist at a local Level II trauma center. Once in Salt Lake City, UT, she worked for the University of Utah Health creating and disseminating health education to a network of twenty-five affiliated hospitals and clinics spread throughout seven surrounding states. It was in this role, that she was introduced to the work of Dr. Lucinda Bateman, and began to find commonalities in what Dr. Bateman was teaching and that of her father and sister’s unexplained illnesses. In an attempt to learn more and find answers for her family, her profession and personal life merged, findings its beginnings as the Education Director at the Bateman Horne Center, where she strives to increase awareness and education on ME/CFS, FM, and related comorbid conditions.
Therese Russo, MPA
ME/CFS Patient Advocate
Individual Living with ME/CFS
Therese is an ME and health justice activist based in Brooklyn, NY. She is currently a volunteer lead with #MEAction’s federal advocacy team. Before becoming too sick to work full-time, she was the senior health equity programs analyst at NYC Health + Hospitals’ Corporate Office of Diversity and Inclusion. She holds a Master of Public Administration in health policy analysis from NYU Wagner School of Public Service, where she contributed to research on the effects of the Affordable Care Act’s Medicaid expansion on out-of-pocket healthcare spending. She joined this committee to help build communication channels between people with ME and researchers, as she believes patient engagement is critical for effective research.