Help Andrew Recover from Long COVID and ME-CFS

In April 2023, our son Andrew Kirvin-Quamme was diagnosed with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a highly debilitating disease associated with neurological, immunological, cardiovascular, and endocrine dysfunction. Andrew’s ME/CFS began in the wake of a tick-borne illness in 2018 and was made significantly worse by a COVID-19 infection in May 2022. Shortly after his COVID infection, Andrew moved to Boston, where he currently lives with his partner Eva.

Andrew’s illness has developed into a serious disability. Every day, he experiences intense fatigue, brain fog, headaches, muscles aches, and orthostatic intolerance, among many other symptoms. He has had to stop working and postpone his plans for grad school because of his symptoms, which force him to stay in bed most of the day and rarely allow him to leave the house.

Medical care for ME/CFS is extremely expensive because there are no FDA approved treatments and most specialists do not contract with insurance companies. Andrew’s out-of-pocket medical costs from the past six months exceed $22,000. He is now taking on significant debt to continue his treatments. Please consider helping Andrew afford much needed medical care!

Andrew’s Story

Prior to his illness, Andrew was an avid hiker, skier, poet, traveler, mental health researcher, and healthcare volunteer. When he first got sick in 2018 at age 24, Andrew was living as a Zen Buddhist monastic student in San Francisco, studying mindfulness and volunteering weekly with AIDS hospice patients. He hoped to attend graduate school to focus on improving access to mental health care for people with chronic and terminal medical conditions like AIDS and cancer.

Andrew had to leave the Zen center because of the severity of his tick-borne illness. His symptoms never resolved and he was told by his doctors at the time that there was nothing they could do for him. He continued on with his life and worked for three years as a neuroscience research specialist at the University of Wisconsin’s Center for Healthy Minds. He then began working remotely as a clinical research programmer for Woebot Health, a mental health startup, and applied to graduate school. In spring 2022, he had just been accepted to Harvard’s Health Data Science master’s program when a COVID-19 infection significantly worsened his symptoms and he had to defer his admission.

Andrew initially sought care at Brigham and Women’s Long COVID clinic when he moved to Boston in fall 2022; unfortunately, there was an 18 month waiting list to see their only specialist. Left with few options, he kept working and tried living as normal a life as possible despite his illness. As time passed and Andrew kept pushing through debilitating symptoms, his condition worsened. In early 2023, he was able to get into a different Long COVID clinic in New Hampshire. He finally received the Long COVID and ME/CFS diagnosis and a framework for understanding his experience, but he was offered few treatment options. At this point Andrew’s symptoms had significantly worsened so he took medical leave from work and went on employer-sponsored disability benefits in April 2023.

These days Andrew must spend about 23 hours per day lying down. In order to minimize symptoms, he passes several waking hours in silence with ear plugs and an eye mask. In addition to constant headaches and body aches, he has significant cognitive impairment that makes his mind feel slow and thinking feel effortful, as if he recently had a concussion. He has constant, crushing fatigue that makes his body feel like it is weighed down with sandbags. Doing essential activities around the house causes him to develop post-exertional malaise (PEM), a worsening of all symptoms accompanied by a burning, full-body poisoned sensation.

Expensive Care + Limited Disability Benefits

Andrew is lucky to be seeing a top ME/CFS specialist based on the West Coast. Remarkably, this doctor is one of only approximately 20 such specialists in the country. Like nearly all ME/CFS specialists, Andrew’s doctor is not an in-network provider with insurance companies due to their frequent refusal to reimburse for ME/CFS care. In addition, since there are no FDA-approved treatments for ME/CFS, many of Andrew’s treatments are considered “off-label.” Insurance companies often refuse to cover related tests and medications.

Andrew has spent over $22,000 on healthcare over the past six months. Expenses include testing, treatment, adaptive equipment, appointments, and cross country travel for care. Andrew’s savings have run out and he is now taking on significant debt. Also, because he’s on medical leave, his employer no longer sponsors his health insurance and Andrew has to pay $1,000 out of pocket every month just to maintain his current coverage. Andrew’s disability benefits cover his living expenses but not most of his medical care costs.

How will your donations be used?

Your generous contributions will help pay for Andrew’s healthcare expenses!

1) $22,000 – covers the past 6 months of medical expenses and will allow Andrew to pay off his current debts

2) $18,000 – covers Andrew’s health insurance premiums for the next 18 months, after which point he will hopefully be eligible for Medicare through federal SSDI benefits

3) $20,000 – goes towards Andrew’s medical care moving forward and should cover:

Despite his challenges, Andrew feels optimistic!

After years of suffering without a diagnosis, there is finally a clear path forward and he is eager to get back to fully living his life. Hopefully his condition will improve enough that he can begin part-time grad school next fall. If he is able to regain his health and return to work, he is keen to dedicate his career to improving the lives of people with ME/CFS and other chronic illnesses.

Any amount you’re able to give to support Andrew’s health would mean so much to us! No gift is too small. Donations will be spent exclusively on Andrew’s medical care costs; if there are any leftover funds when all is said and done, they will be donated to ME/CFS research.

Thank you for considering our appeal!

Barry & Eileen Fox-Quamme

Resources for learning more about ME/CFS:

CDC Website Overview of ME/CFS

Unrest - A Sundance award-winning documentary about an ME/CFS patient’s journey

#MEACTION - An ME/CFS advocacy organization with lots of education material