Lived Experience Taskforce (LET)

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 community partners who are:

  • Partners affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); these partners can be patients or caregivers
  • Partners affected by Long Covid and associated conditions; these partners can be patients or caregivers
  • Partners from communities that have been historically economically and/or socially marginalized and are currently affected by ME/CFS or Long Covid

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. 

Shared Leadership

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.

Members of the Solve M.E. Lived Experience Taskforce (LET)

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.

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