This September marks 1 year since I became sick with ME/CFS, a complex chronic illness that has left me disabled and dependent on my parents at the age of 32. To honor the time lost and attempt to transmute this tragedy into something good, I am putting on a fundraiser for an organization called the Complex Disorders Alliance (CODA). Before talking about CODA and its mission, I want to share a bit about my experience with this illness.
The best analogy I’ve found to describe this disease is that it feels like the combination of the flu and a concussion. Every morning, I wake as though someone beat me with a bat overnight - my whole body sore and aching. I spend roughly 12 hours in bed each night, but the sleep I do get is fragmented, shallow, and disrupted by distressing “fever dreams” that I’ve only ever associated with severe infection. When I finally do get out of bed, I'm in a state of flu-like malaise and fatigue that persists throughout the day.
The concussion comparison stems from the cognitive and neurological symptoms. “Brain fog” is something that’s difficult to explain to someone else, but uncanny for the experiencer. My memory, concentration, and critical thinking all feel slowed. It’s as though for all my adult life, I metaphorically “pushed the button” in my brain to get it to do something, and now the buttons feel broken. Neurologically, I experience sensations of vertigo, tremors, and a constant sensation of unsteadiness as though I’m rocking on a boat out at sea.
In the first few months of my illness, when I still didn’t understand what was going on, I described to doctors that it felt like I was “allergic to gravity.” I had a profound urge to lie down as standing or even sitting upright would bring on dizziness, a racing heart, and shortness of breath. I came to learn that this condition is called Postural Orthostatic Tachycardia Syndrome (POTS) and is a common comorbidity with ME/CFS. When a healthy person stands, the autonomic nervous system instructs the blood vessels in the lower half of the body to constrict, thereby working against gravity and sending blood back up to the heart for circulation. When the autonomic nervous system is dysfunctional as it is in POTS, this process fails and blood pools in your lower extremities, causing reduced blood flow to the heart and brain and a cascade of symptoms.
The hallmark of ME/CFS is something called post-exertional malaise, which essentially means that, for unknown reasons, exertion can make you sicker. The pattern that I, like many patients, fell into was having a streak of “good” days, then doing something exertional like travelling to a doctor's appointment, resulting in a “crash” where my symptoms worsened significantly. Once I had crashed, it took several days to get back to “baseline,” then the cycle began over again. It would be one thing to feel like crap and still be able to make a conscious choice to try to power through and do some stuff, but the fact that these excursions made me sicker created a hellish prison. I would often say “the walls are invisible,” meaning I didn't know when I was crossing the exertional threshold - there are no warning signs whatsoever.
Over the past year and with the support of my wonderful parents, I have painstakingly learned my limitations as well as experienced genuine physical improvements, allowing me to return to some activities that I thought I might never again be able to tolerate. It is difficult to put into words how grateful I am for that. But even so, my world remains shrunk in unimaginable ways. I’m unable to work, rarely leave my parents’ house, and spend the majority of the day seated and reclined. I am able to perform wellness for a few hours at a time when needed, but I struggle with symptoms every day and have not felt "good" in over a year. I still carefully pace my activity to avoid crashing.
And yet, incredibly, my condition is about average on the spectrum of ME/CFS severity. The most severe cases of ME/CFS render patients bedbound 24 hours a day, 7 days a week, for years on end. Many of these severe cases are unable to tolerate light or sound, so they wear eye masks and ear plugs and stay confined to a dark room. Many of them are too weak to eat or drink, so they must be hooked up to feeding tubes and IVs. Some tragically choose to end their own lives rather than endure another 10 or 20 years of aimless suffering, contributing to a suicide rate that is 6x that of the general population.
There’s lots to say about the history of research and funding for ME/CFS, but the punchline is that this is one of the most poorly funded diseases in the history of modern medicine in the context of its “disease burden.” Across an estimated 1-3 million afflicted Americans, 75% cannot work, 25% are housebound or bedbound, and only 5% seem to make a full recovery. This disease typically strikes down its victims in the very prime of their lives, with the average age of onset being 33 years old. Research has shown that ME/CFS carries a quality of life worse than Multiple Sclerosis, bleeding ulcers, and many forms of cancer. Despite all of this, the National Institute of Health, the U.S. government entity responsible for investing in research to advance our society’s health, allocated only ~$12M towards ME/CFS research in 2025, a laughably low figure when compared to other immune and neurologically-mediated diseases:
- HIV/AIDS - $3.3B across 1.2M patients ($2,750 per patient)
- Lupus - $148M across 1.5M patients ($99 per patient)
- Multiple sclerosis - $112M across 1M patients ($112 per patient)
- ME/CFS - $12M across 1-3M patients ($3-$12 per patient) - we don’t have a diagnostic test for ME/CFS so the exact number of patients is unknown
Given the desperation of so many patients in the U.S. alone, one might think this to be an attractive market for pharmaceutical and biotech companies. However, private capital will not fund disease research until adequate de-risking has taken place, and a complex, multi-system chronic illness with no biomarkers is about as risky a bet as you can place. As such, no large private company has touched ME/CFS research in decades, and there remains zero FDA-approved treatments.
It is for these reasons that I and millions of others seek refuge in the power of philanthropy, perhaps the only remaining societal arm capable of solving disease, and draw hope and inspiration from historical examples of foundations that succeeded in channeling pain and suffering into money and action. Nobody is coming to save us, but that means that we must save ourselves, not that we cannot be saved.
The organization I am fundraising for, CODA, was founded by Amy Rochlin, whose daughter, Gracie, has suffered from ME/CFS for 12+ years. Amy worked under the legendary cancer patient-advocate, Kathy Giusti, at the Multiple Myeloma Research Foundation and has seen first-hand the herculean accomplishments of well-executed philanthropy come to life. Amy’s co-founder, Fidji Simo, is the former CEO of Instacart and has been suffering from POTS for more than a decade, which forced her to step down from her most recent position as CEO of Applications at OpenAI. CODA is an organization that deeply understands the toll that complex chronic illness enacts on its victims and has the professional firepower to make a difference.
CODA’s mission, put simply, is to fund high quality research focused on these “neuroimmune” illnesses (e.g., ME/CFS, Long Covid, POTS, Fibromyalgia, MCAS) that seem to cluster heavily in the same patients. Tactically, that means bringing researchers that have historically been siloed and fragmented under the same umbrella to focus them on the same questions. One of their most urgent goals is to establish a clinical trial network to accelerate the rate at which we actually test on human beings the many hypotheses that swirl around these diseases. CODA has a “program expense ratio” of 90/10, meaning 90% of total spending goes towards research and only 10% goes towards administration/overhead (the market standard is 80/20 and many research foundations fall well short of that).
As one might imagine, I’ve done quite a bit of soul searching over this past year, desperate to find some solid ground in my mind that I can rest on when the weight of what’s happening becomes overwhelming. I was surprised when I found some solace in the words of Jalen Brunson after their 29 point comeback in game 4:
“You’re allowed to think about the worst possible scenario, but then you’ve got to go out there and do something about it.”
I think about the worst possible scenario all the time. I think about whether I’ll ever get well enough to live on my own, to go back to work, to start a family. I think about what will happen the next time I get the flu - will it send me into more severe levels of ME/CFS as it has to so many other patients online? I think about what will happen when my parents get older and face their own medical problems, and whether I’ll be too sick to care for them as they’ve cared for me.
These are not dark, irrational ruminations. These are real possibilities, and I appreciate The King of New York giving me permission to stare them in the face. I have to be able to sit with these possibilities, to be at least halfway at peace with them if I’m going to do the next part - do something about it.
This fundraiser is a small step towards that. I am humbly asking friends, family, and anyone moved by this story to please join this fight by making a contribution. Together with my family, we will be matching the first $10K of donations. With persistence, time, and your support, we can fund research that could change the trajectory of this disease and the lives of millions.
Thank you very much for reading and for anything you can contribute. Take care and stay healthy.
