The Lived Experience Taskforce (LET) will serve as leadership partners with Solve M.E. This partnership will be based on the principles of meaningful community engagement, where equity is our goal and expectation. LET partners — many from historically under-engaged communities — will improve our ability to deliver responsive services, programming, training and technical assistance to organizations and other partners affected by ME/CFS and Long Covid.
We are actively seeking:
Heartfelt thanks to the Community Advisory Council (CAC), a previous iteration of LET, for providing guidance and recommendations on numerous Solve M.E. programs throughout the years.
Lived experience helps to develop a deeper understanding of the conditions affecting certain populations, the solutions that are most appropriate for those impacted by the issue, and the potential harmful unintended consequences of the current and past actions taken by the existing system on the people it aims to serve. Solve intends to involve LET partners throughout the entire decision-making process, including at the conceptualization, implementation, and evaluation levels to the fullest extent possible.
LET partners receive equitable compensation for their expertise.
Nate (he/him) is a grants consultant currently based in Appleton, Wisconsin, where he founded Interwoven Threads Consulting and works with a statewide antiracist policy advocacy center. He is the Vice President of the Grant Professional Association’s Wisconsin Chapter and sits on their national Governmental Advocacy committee. Additionally, he sits on a local nonprofit leadership institute steering committee. He holds an MA in International Cultural and Creative Industries from Taipei National University of the Arts.
Nate has had me/cfs since 2010, when he was 18, and has experienced being bedbound and housebound, the medical violence and negligence, and the emotional/physical extremes me/cfs brings. Joining LET is an opportunity to contribute meaningfully to the community, and he looks forward to whatever form that manifests.
Tracy is a 58 year old with a professional background in behavioral health, healthcare and computer science. She is a veteran, has worked as a Volunteer Coordinator, managing 120 volunteers on 20 hours a week, computer systems analyst and programmer and has worked in behavioral health, adult health, and as a nurse educator. Her skills also include planning events, performing on stage, delivering sessions at international conferences, and caring for others.
Her experience with chronic disease, as a patient, began in 1985 when she became ill with an unknown viral infection. While she recovered fairly well and worked in all the above fields, it wasn’t without struggles and adversity. She became so ill with a crash in 2015 she was forced to take medical retirement from her position as RN Care Manager where she had managed a panel of 1250 patients. Tracy loves performing in community theatre, gardening, baking (gluten free bread is a passion), learning about and creating herbal and homeopathic medicines/programs to manage her ME/CFS, as well as her many autoimmune and other complex disorders. She brings her experience, creativity, analytical skills and love of research to LET. As an advocate for people with chronic illness, Tracy hopes to represent them not only as a patient but as someone who understands the inner workings and (lack of specialized) training regarding ME/CFS in the healthcare system.
Janice is a retiree from the very rural Montana which has limited medical services. I am a social worker whose career focused on serving individuals with developmental disabilities, their families and communities. I served as part of a team that developed a statewide local system including legislation, funding, organizing and every other piece. This system continues to grow and serve. The county’s search and rescue team was a major part of my volunteer life for over 20 years. This organization was a non-profit group of persons available 24/7 for any call for help. One of many skills acquired was becoming an EMT. The local kennel club was another volunteer activity with my favorite part being that of teaching community members basic puppy obedience. With my increasing physical/mental/emotional limitations due to my self-diagnosed ME, my activities now include voter registration, getting the vote out, lobbying for state legislature/congress and my fellowship work. My german shepherd dog, Tayo, is a faithful companion and we love walking in our woods.
My body first told me something was not quite right in my teens. In my mid-twenties my primary doc said I don’t know what is going on with you. I want you to see a rheumatologist. The rheumatologist says “I can see something is wrong but I don’t know what. See a rheumatologist every 5 years and it should eventually present itself.” Yes, every five that it is what I did. Couple years ago, a new ophthalmologist said, “I can see you have something, I don’t know what it is, I don’t know how to treat. You have never heard that before. Huh?” So I always was researching on my own as my health as worsened.
So Solve M.E. has come to my rescue. I use their site and others to learn all I can. There is so much available that I cannot get here. I use this information to help inform others. I am finding others like me. It is important for me to continue as a LET member as I hope to use the knowledge I have gained to assist in the development of service systems for individuals with our health conditions, their families, their caregivers, their medical care team, and their communities. Important also are the decision makers for laws, funding, and support.
Lisa Hamilton is an occupational therapist and is the host of the VisibilOT Podcast, where she explores the experiences of those living with invisible disabilities, connects with thought leaders, and raises awareness for better care and support. She graduated with her Doctorate of Occupational Therapy from Nova Southeastern University, and her doctoral capstone project focused on The Role of OT in Long COVID Rehabilitation. Lisa has experienced symptoms of Long COVID since her initial infection in 2021. However, following a secondary infection in April 2024, she experienced a significant decrease in function which has altered her life in many ways. Through both personal and professional experiences, she has witnessed the profound challenges that individuals face while navigating this illness, particularly due to its invisible nature.
Lisa is excited to serve on the Lived Experience Taskforce (LET), as the information and education initiatives put forth by Solve M.E. have been an instrumental resource for her throughout graduate school. She is eager to contribute in any way possible, hoping to bring more visibility and understanding to chronic conditions and those living with them.
Matt is a 38-year-old currently unemployed technologist (UX researcher) with a background in activism/community organizing, media/journalism, conflict resolution, and education. In 2022, at the prime of his earning potential, he came down with Long Covid and lost his job as a result. Through major diet and lifestyle changes (and with very little help from the medical system), he’s able to function at about 85 percent capacity on most days—but he’s far from the person he used to be. He is a strong advocate for folks suffering from chronic illness and dreams of being an author. He’s written about his experiences with Long Covid on Medium.
Hollis Mickey (she/her) has a background in education and non profits arts leadership. She has led a museum education department, curated international exhibitions, and supported institutional fundraising at the Anchorage Museum and Rhode Island School of Design Museum, has taught as a university level professor of art history, and also created and facilitated medical arts courses for current and future physicians through Brown University Medical School and the Alaska WWAMI program. She holds a BA and MA from Brown University and an MFA from University Alaska Anchorage. Her experience with chronic complex diseases began in 2010, with more recent diagnosis of ME/CFS alongside several other conditions. She brings her background, creative thought, and perspective as a person with severe ME to LET, with the intent to help current and future patients feel supported and seen. A poet, musician, and artist, who hopes to one day practice again, she lives and loves with her partner in Anchorage, Alaska.
Lillian Mitre is an Assistant Nurse Manger in an Acute Hospital setting. She hopes to use her multiple experiences with Covid and her diagnosis with Long Covid and Chronic Fatigue Syndrome to help spread awareness and participation in advocacy for these disabilities. She has worked in the Maternal Child field of Nursing for 24 years and is now furthering her career in a leadership role. She is bilingual in Spanish and as a first generation Mexican-American, hopes to spread knowledge and understanding of this chronic condition to others with a focus on the Hispanic community. She is eager to use her eight personal experiences with Covid to provide guidance to the medical professionals currently responsible for research on Long Covid. She is a survivor and thrives on the hope that joining the LET helps contribute in some way.
When she isn’t working, Lillian enjoys traveling with her family and exploring new places. Their adventures include camping, sight seeing, and the beach. Lake Tahoe is her favorite place to visit.
Kate (she/her) is a social media/digital marketing professional with a background in non-profit work, advocacy, and public health. She earned her MBA from the Pennsylvania State University. Before her one-and-only COVID-19 infection in June 2022, Kate was a marathoner who enjoyed exploring Washington, DC, on the run. Long COVID destroyed that life, leaving her primarily bed-bounded and unable to live independently. She was later also diagnosed with ME/CFS and POTS. Her greatest advocates are her parents/caregivers, who educate their friends, coworkers, and occasional strangers about Long COVID using Kate’s experiences. Inspired by their success, Kate hopes to make it easier for other caregivers and advocates to teach people about Long COVID, ME/CFS, and other complex illnesses through face-to-face conversations and personal stories.
When she’s not getting poked and prodded by doctors, Kate works full-time from her bed, reads, decorates her symptom journals, and plays fetch with her parakeet, Nemo.
Adriana (She/her) is a former high-level competitive swimmer who became a passionate advocate after contracting Covid in December 2020 and subsequently developing Long Covid, ME/CFS and dysautonomia. She also used to work as a group benefits consultant.
Her personal experience has driven her to raise science-based awareness about Covid prevention and the risks of Long Covid. As a former athlete, she highlights that these conditions can affect individuals regardless of age or health status.
In the summer of 2022, Adriana became the lead of Long Covid Canada, where she works to amplify patient voices and advance understanding of these conditions. She also serves on the Patient Advisory Council at Long COVID Web, contributing her lived expertise to drive meaningful change, she’s a co-chair of the Long Covid Committee as well as a Board member of the Canadian Covid Society.
Mary Riew is a community volunteer with a passion for education and performing arts. A graduate of Wellesley College, Mary has an MBA from Harvard and initially worked at JP Morgan and Kaiser Permanente. Later, she decided to stay at home to raise her three children and committed to volunteerism by serving on numerous educational boards in the St. Louis area. After she returned to New York for her husband’s medical career, their eldest son developed long-covid in 2020, which led her to seek out important organizations making an impact to help those suffering from long covid and similar chronic illnesses. Mary hopes that by joining LET, she can make some meaningful contributions to and become more involved with Solve ME’s critical mission to promote advocacy and increase research with the ultimate goal to help find a cure for those suffering all over the world.
Kate Sanchez (she/her) has thrived despite her almost 20-year battle with Myalgic Encephalomyelitis. She hopes to bring her experience with writing, mindfulness, and DEI work to the Lived Experience Task Force. Kate is an Assistant Professor of English at Community College of Philadelphia and a trained meditation and mindfulness teacher, but her most important work is being a loving wife and mothering her children Millie and Gael. She believes, as Emily Dickinson puts it, “Hope is the thing with feathers,” and that hope’s feathered cape is everything in the face of ME.
Sara (she/her) is based in Madrid, Spain, and works as a content-focused SEO for one of the world’s biggest finance websites, where she breaks down jargon-ridden concepts into easily-digestible articles to help democratise the world of investing. She also regularly mentors recent graduates and those in the creative industries as part of her work running the non-profit publishing house Inspired Quill.
As the wife of someone who has been fully bed-bound with severe M.E for over three years (and completely uprooted her life to better support her partner as a consequence), Sara understands many of the pressures felt by full-time carers first-hand, and is keen to share pragmatic knowledge with other carers and M.E patients to help with day-to-day living. Any spare time is usually spent learning Spanish, hoarding stationery and playing D&D with friends back in the UK.
Jay Stewart (she/they) is an instructional designer with specialization in diversity, equity, and inclusion work who hopes to use their background to help with educational outreach efforts. Her journey with relapsing-remitting ME began in 2017, and she has experienced a full range of severity within this illness. With whatever extra energy they have, Jay can be found knitting, spinning yarn, gardening, and running Covid Safer Seattle: dedicated to organizing and amplifying covid safer events in the greater Seattle area.
Naomi (she/her) is a Long COVID expert-by-experience with a background in education, library and information services, charity, and editorial services. She holds a PgDip in Racism & Ethnicity studies. Since developing a life-changing post-viral illness in 2020, Naomi has been on a journey to develop her medical literacy. She has looked for ways to translate and disseminate this knowledge and make the lived experience of those with Long COVID visible both at work and in her personal life. She uses social media to share transparent accounts of working towards recovery in the hopes of providing support to members of the chronic illness community, and painting a more accurate picture of the impact of energy-limiting conditions. She has a passion for co-production, believing that patient leaders must be offered meaningful opportunities to work as equal partners to facilitate the improvement of experiences and outcomes in the healthcare system, tackle inequalities of care, and make ME/CFS and LC more diagnosable and treatable. She hopes to continue providing guidance to health professionals through a Long COVID Patient, Carer, and Public Involvement (PCPI) group run by the UK’s NHS, and pressing for a need for the mainstream to include more voices that have been marginalised, yet often experience the greatest burden of having a fatigue-limiting, multi-systemic condition. In her spare time she writes creatively, rests intentionally, and enjoys studying languages and Herbalism.
Tina Yesenofski (she/her) is an artist and small business owner who previously worked as a project manager and data analyst within the scientific research software and healthcare industries in Philadelphia, PA. COVID completely upended her life in July 2020, after which she was diagnosed with disabling ME/CFS, POTS, and Long-COVID. She now identifies as a person with a disability, and enjoys her functional time (about 40% of pre-illness levels) crocheting for her small business (who donates 10% of sales to ME/CFS initiatives), snuggling with her cats (don’t ask how many), and watching nature.
Tracy Conard (she/her) is a disabled veteran and retired registered nurse. She has lived with ME/CFS since she was 18. She became ill after a trip to Tahoe Valley in January of 1985 (was officially diagnosed in 1989). Since then she has conducted independent research into ME/CFS in nutrition, immune response and additional areas pertaining to the disease. As an RN, Tracy has cared for numerous patients in civilian and veteran populations. She has used her knowledge to educate nurses and doctors on the illness. She also has family members and close friends that are affected by this and related syndromes. Tracy looks forward to assisting Solve ME and serving on the LET.
Rev. Ursula Carrie
My COVID symptoms began on Sunday, April 19, 2020. A specialist diagnosed me with ME/CFS in September 2020. The blood work also showed a re-triggering of EBV, which I never even knew that I had at some point in my life.
I Am
– An Herbalist and Healer in the Wise Woman Tradition of Healing
– An Ordained (Ecumenical/Interfaith) Priest in the Order if Melchiezedek
– A certified Soul Realignment practitioner
As always, I was following my Intuition when I filled out the application to join the LET. I didn’t have a “goal” or something specific that I wanted to accomplish. When asked, however, why I applied, my first response was, “Because I’m invisible.”
I am thankful for the opportunity to be a part of the Lived Experience Taskforce.
I am hoping that, somehow, I will be able to employ the strength of my Voice, my public speaking and writing abilities, my various trainings as a healer and member of the clergy and my experiences with Longcovid-ME/CFS: 1) to help and help heal others 2) to be a Beacon of Light in the Dark, and help point the way to available resources for help- for women who don’t know where to begin, or know that help is even out there- women like me. Hopefully my input can help change the situation for other low income Black women/women of color.
I was denied help at a leading medical institution because I got sick in the beginning of the pandemic and didn’t have access to testing. Without a proof-positive test, now, many people like me are being denied post-covid care. It is also difficult to impossible to find any medical help for navigating the issues associated with ME/CFS because the majority of ME/CFS specialists don’t take Medicaid or Medicaid associated insurance plans. I earnestly feel that this needs to change. It sounds like a tall order, but starting anywhere is a start.
I Love
– Cloudy days, Rain and Thunderstorms, the Nighttime, Autumn and Winter
– Everything Japan, most especially Anime (all genres) and teaching myself to cook Japanese style foods (energy permitting)
– Agatha Christie and the British crime/detective genre
– The 100+ houseplants and cuttings in vases that enliven my living room
– Wolves, Crows, Black Bears (also- Hawks, Owls, Hummingbirds, Blackcapped Chickadees- all birds- Deer, Coyotes and feeding the wild birds in winter and summer)
– Old school Hip-Hop and R&B, LoFi, Classical Baroque (Bach, especially) are my favorites, but there is always a genre of music to fit my changing moods
– Nerding-out on Celestial Phenomena, most especially Eclipses (Lunar and Solar) in person whenever possible, otherwise via telecast online.
My Creative fire is most recently being expressed, quite passionately, through Video and Photo creation via the apps on my phone. I have dabbled in multiple areas of art, however.
I make my own yogurt on a regular basis and still make herbal tinctures, oils, beers and wines.
I am a native English Speaker. I also speak Portuguese and Spanish, although it’s been quite some time since I have spoken these languages on a daily basis.
Janice Frisch (she/her), a life long Montana elder, who has been involved in social justice for all of us on many fronts. My journey with me/cfs like symptoms was acknowledged in my late teens. Decades later, my rheumatologist saying she didn’t know what it was, labeled it inflammatory polyarthropathy, listed many diagnoses and tried to treat symptoms. My reason for being in this team is trying to help encourage research, obtain services and support for communities and individuals, advocate and assist with the grass roots organization of groups like this.
And of course, Look, Listen and Learn.
Benjamin Ho (he/him) is a fourth year undergraduate student on pause due to ME/CFS. Hailing from the Bay Area, CA and Shanghai, China, and having contracted ME/CFS while in college in rural upstate New York, he is excited to use his experience in global health research to improve patient support, particularly for communities in which ME/CFS and long Covid are underdiagnosed.
Soh-Yeon Lee (she/her) is an advocate for the M.E./CFS community. Founder of the annual M.E. Art Auction and host for a weekly patient support group.
Jailyn Mercadel (she/her) is a 27-year-old patient of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center. After two years of navigating the healthcare system with debilitating symptoms, she was diagnosed with Chronic Fatigue Syndrome along with multiple other conditions in August 2021. Professionally, she obtained a BSN from Emory University in 2017 and has worked as a registered nurse in the oncology setting for 5 years with a certification in Bone Marrow Transplant. Jailyn continues to use her education, knowledge of the system, and access to quality insurance to navigate the healthcare system for her own medical challenges while serving as a patient support advocate for others as well.
Hollis Mickey (she/her) has a background in education and non profits arts leadership. She has led a museum education department, curated international exhibitions, and supported institutional fundraising at the Anchorage Museum and Rhode Island School of Design Museum and has taught as a university level professor of art history. She also created and facilitated medical arts courses for current and future physicians through Brown University Medical School and the Alaska WWAMI program. She holds a BA and MA from Brown University and an MFA from University Alaska Anchorage. Her experience with chronic complex disease began in 2010, with more recent diagnosis of ME/CFS. A poet, musician, and artist, she lives and loves with her partner in Anchorage, Alaska.
Kelly Sullivan Ruta (she/her) is a wife, mom of 2 and entrepreneur. She was a clinical psychotherapist for 20 years and is the founder of Kelly Ruta International, where she coaches and consults with six and seven figure female entrepreneurs. Kelly was diagnosed with MECFS in 2015 and Covid in 2020 and 2022. When she is not working or spending time with family, she is with her ride or die besties or with her head in a fantastic book, trying to embrace life as it is and staying optimistic for what it could be.
Kate Sanchez (she/her) has thrived despite her almost 20-year battle with Myalgic Encephalomyelitis. She hopes to bring her experience with writing, mindfulness, and DEI work to the Lived Experience Task Force. Kate is an Assistant Professor of English at Community College of Philadelphia and a trained meditation and mindfulness teacher, but her most important work is being a loving wife and mothering her children Millie and Gael. She believes, as Emily Dickinson puts it, “Hope is the thing with feathers,” and that hope’s feathered cape is everything in the face of ME.
Lala Shanks (she/he/they) is a multi-passionate cultural practitioner. Their expansive practice honors the interconnected nature of creative expression and liberation work through efforts of storytelling, collective healing, community organizing, and artivism. This work is informed by Lala’s experience as a system-impacted person; they are a biracial Black and white, queer and nonbinary, multiply disabled individual (namely autistic and Mad*, with fibromyalgia and suspected ME/CFS.) It is also an exploration and actualization of Thrivation—coined and defined by Lala as the transformation of material conditions for system-impacted peoples by investing in sustainable creative dismantling efforts and care networks that engender our collective abundance without sacrifice. They believe ME/CFS advocacy and disability justice are key elements in achieving these radically imagined possibilities.
*Mad is a reclaimed identity for psychiatric consumers and survivors, as it pertains to the Mad Pride and Psychiatric Survivors Movement.
Jessica Turner (she/her) is a patient advocate who dreamed of becoming a physical therapist, having a family, and living an active lifestyle when she began a grueling four-year search for answers while fighting debilitating headaches, fatigue, and post exertional malaise and was finally diagnosed with ME/CFS by Dr. Lucinda Bateman (of the Bateman Horne Center, Salt Lake City, Utah) in 2005. Despite the disabling daily symptoms, Jessica was able to meet and marry her Husband Jay Turner in 2006. With extensive family, medical and community support Jessica and Jay have built a life around her disability. They have been married 16 years, have three children, and live in Cottonwood Heights, Utah. Jessica and her husband Jay are tireless advocates for patient and family issues as well as better provider access to those struggling with ME/CFS, FM and similar conditions.
Tina Yesenofski (she/her) is a disabled artist and small business owner who previously worked as a project manager and data analyst for a scientific research software company in Philadelphia, PA. COVID completely upended her life in July 2020, after which she was diagnosed with disabling ME/CFS, POTS, and Long-COVID.