Help Camille Kick Long COVID!

Camille Buckner is a brilliant teacher (I’m her former student) and human who has been sick with Long COVID for 22 months. Her ongoing cognitive and neurological symptoms have knocked her over, and she’s been struggling to get treatment within the U.S. healthcare system for almost two years with no luck. She is now pursuing research-based, experimental treatments with documented success that her insurance does not cover. Camille needs help covering some of her out-of-pocket medical expenses and will donate any funds raised in excess of her medical need to three organizations dedicated to improving the lives of people with chronic debilitating illnesses like Long COVID. The arrival of massive numbers of COVID-19 long-haulers is calling attention to the reality of many who have long struggled with complex chronic illnesses.

 

On a more personal note, Camille is a wonderful person, teacher, mother and friend who genuinely changed my life for the better. When I was on the fence in college about pursuing film vs. psychology, she convinced me to follow my dreams, and she has consistently inspired me with her dedication to her students, her rigorous work regarding her healing, and her brilliant sense of humor and heart.

 

Camille deserves better than our healthcare system is offering. Please join me in helping her continue to help everyone else, and by learning more, raising awareness, and making a donation.

April 2020

A message from Camille:

I’ve been a psychology professor for 24 years, and I love teaching and interacting with students. I see my job as creating structures and space for students to be the funky, smart, creative people they are meant to be. I keep in touch with many of my former students, and they continue to inspire me. I met Jay in the 90s when I was a grad student at UT-Austin, and he was an undergrad psychology major trying to find his way. He likes to tell a story about how I helped steer him on his path away from psychology toward film, beautiful film—and I love that story—but TBH I think he was bound to end up exactly where he is today no matter what.

@MU's Student Research Conference (pre-COVID)

 

Why do I need help?

I would like to keep teaching and mentoring students for at least 15 more years, but life has thrown me a curveball. COVID hit me hard in March 2020, and I have yet to regain my health 22 months later (see this reflection  for more about my Long-COVID story).

 

I have made some progress over time, but my remaining symptoms include: nerve pain, short-term memory/focus problems, tinnitus, hearing loss, temperature/breathing regulation problems, joint pain, blood vessel inflammation, and intense fatigue. I now have very limited energy and must use it wisely to avoid collapsing. My brain works differently and much less efficiently, but I’m coping and learning how to navigate life with this invisible disability. I have been fortunate to have access to short-term medical leave (which reduced my pay but allowed me to keep my job) and medical accommodations, but I struggle every day to teach and do work that used to come easily to me.

Wild O2 saturation variations during sleep

It has been another full-time job to navigate the very broken U.S. healthcare system. I have tried my best but haven’t yet been able to access productive treatment within the system. The problem is partly due to the siloed and overspecialized nature of the medical field. Long COVID is a full-body experience that requires noting patterns and connections across many different organs and systems in the body, not something many physicians are inclined or equipped to do. Effective treatment of Long COVID and other chronic debilitating illnesses like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and post-Lyme disease calls for reimagining standard medical practice and care.

 

What do I need?

I have health insurance but found out the hard way that it’s the sort that works well when you’re healthy and not so well when you’re sick. I have delayed seeking potentially effective treatments for months by trying to go through my insurance to minimize costs (all the while, spending over $7,000 out-of-pocket on doctor visits, lab work, and medical devices, and medications). Reaching this dead end has prompted me to seek a new treatment path because it’s too dangerous to let my body stay in its chronically inflamed state.

 

This new path has led me to an integrative medical doctor who is working in partnership with the Chronic COVID Treatment Center . My new doctor is the right fit. I feel seen and heard at long, long last, and I trust that she has the expertise, skills, and open-mindedness needed to treat me. But since I’m going outside of my insurance for treatment, my medical costs are increasing, prompting me to take this personally difficult step to ask for financial help.

 

How can you help?

The bottom line is that people with Long COVID and other similar complex chronic diseases need your help. So many have struggled in the margins for far too long. I hope that the millions of COVID long-haulers arriving on the scene en masse will begin to call more attention to the reality of these struggles. My saving grace came in June 2020 when I found my primary support group (Long Haul COVID Fighters) and read Ed Yong’s article in The Atlantic called “COVID19 Can Last for Several Months." This is when I realized that I was not alone. I began bonding with fellow long-haulers who spoke my language and connecting with experts who took our plight seriously. Collectively, we are moving the needle, and you can join this cause by learning more, raising awareness, and/or making a donation.

Mei Mei love is the best love

To donate…If you’d like to support me personally, please contribute to this fundraiser. I do recognize my privilege and acknowledge that so many others with chronic illness are struggling more than I am. If you’d prefer to contribute money directly to organizations doing excellent work to help people with Long COVID and other similar complex chronic diseases, visit these sites:

Open Medicine Foundation

PolyBio Research Foundation – Science in Action

ME Action Network

Solve ME

PatientLed Research Collaborative for Long COVID

Body Politic COVID19 Support Group

 

To learn more about Long COVID, visit the Long Covid Alliance. To learn more about ME/CFS, visit the ME Action Network. To see how turbo smart scientists are using innovative methods to crack the code on complex chronic diseases, visit the PolyBio Research Foundation.

 

To spread awareness and advocate for more resources, research, and legislation to support and protect people with Long COVID and other similar complex chronic illnesses, speak up and use these hashtags: #LongCovid #LongCovidKids #TreatLongCovid #CountLongCovid #MECFS, #MEAction #SolveMECFS #MillionsMissing #InvisibleDisability #ChronicIllness #ChronicPain #Dysautonomia #EDS #Endometriosis #Fibromyalgia #IBD #Lupus #LymeDisease #MS #POTS

 

How will the funds be used?

I will use any money donated to this fundraiser only to cover the cost of my out-of-pocket medical expenses for doctor visits, lab work, medical devices, medications, and other viable treatments.

 

I will donate any excess funds raised to the PolyBio Research Foundation  (@polybioRF), the ME Action Network (@MEActNet), and the PatientLed Research Collaborative for Long COVID (@patientled).

Doing an at-home sleep study in 2020

 

How will I show my gratitude?

I will pay it forward. I am currently down but hopefully not out. Pre-COVID, I had what seemed like boundless energy (little did she know…), but now my spirit animal is most definitely a snail. If I find treatment that allows me to get even some of my mojo back, I promise you I will pay it forward in every way I can, by being more present and alive with my students, by making my campus community as inclusive and just as it can be, and by advocating for better research and care for people with Long COVID and other similar complex chronic illnesses.

 

The good news is that long-haulers have more reason to hope now than during the first year of the pandemic. Promising research findings come to light with each new day. Dr. Resia Pretorius is doing ground breaking research in South Africa to identify and treat the microclots that damage the vascular systems of long-haulers and deprive our tissues of oxygen. Dr. Beate R. Jaeger is successfully treating Long COVID patients in Germany with H.E.L.P. Apheresis, a dialysis-like process that filters out fibrin microclots and returns clean plasma to the body. And Dr. Bruce Patterson is using targeted immunotherapy  by aligning specific drug treatments with long-haulers’ immune panel profiles.

 

Thank you for your time and attention, lovely people. I have learned so much on this unholy journey, and I am indebted to those who have been navigating the hell of chronic, debilitating illness much longer than I have. I’m committed to doing right by them, I seek better outcomes for us all, and I invite you to join us in this fight.

Sideways Pre-COVID Camille in 2018