A life-changing illness
To my friends, family, and anyone else who’s chanced upon this:
Some of you know what I’ve been going through, or you may not fully understand why I suddenly fell off the radar. While I’m open about my experience with illness when it comes up, I have not broadcast the news across my network.
But as I’ve leaned into advocacy, I have found myself investing precious energy alerting the world to the existence of my condition while most of the people I have known over the years remain unaware.
Well here goes…
Six years ago, I developed a condition known as ME/CFS, or myalgic encephalomyelitis/chronic fatigue syndrome.
It all began when I woke up one day feeling super off. I thought I had the flu. Or maybe it was a relapse of the mononucleosis I’d recovered from several months prior. Actually, I had developed a life-changing chronic illness overnight. I would only come to understand this as symptoms continued to progress over the weeks, months, and years ahead. In time, my rigorous lifestyle of early morning bike rides across the Golden Gate Bridge, trail running, weekend camping, and snowboarding trips would be replaced with long stretches of couch rest, quiet solo time, and meditative strolls around my neighborhood.
Though many symptoms come with this condition, the leading one is exertion intolerance, or the inability to exert oneself in most any way, which can include socializing, walking short distances, doing basic cognitive tasks, even undergoing sensory stimulation — as well as engaging in more rigorous exercise, which for most is completely out of reach.
The penalties for exertion, known as “post-exertional malaise” — or its more serious variant, a “crash” — include the onset of heightened fatigue, weakness, flu-like symptoms, and a peculiar quality of confusion (“brain fog”), as well as a host of other symptoms, which can last days, weeks, or even longer. On several occasions I have knocked myself onto a new trajectory of illness for months through over-exertion, a commonly reported phenomenon. For those with ME/CFS there is always the concern that exerting oneself in basic ways to get through life could make your condition permanently worse.
The worst thing about ME/CFS
A brief animation I made about exertion intolerance in ME/CFS
youtube.com
Because I am still able to communicate with others (with some discomfort), slowly walk medium distances, and work (fully remote for years now, and often reclined), my case is considered moderate. But many others are permanently housebound or bedbound. I have caught glimpses of this way of living on my worst days. The specter of losing even my current limited lifestyle is always lingering.
Over the years I have also learned something truly shocking. There are conditions like ME/CFS out there, affecting millions of Americans, ending peoples’ lives as they know it, and yet are barely even recognized by the medical establishment or the agencies that fund biomedical research.
How could this be? In the year 2022 what does it even mean for a commonly occurring illness to be “controversial,” “contested,” or “stigmatized”? If you know full well what that means, then you now know how naive and privileged I was when I had the poor sense to come down with one of these conditions myself.
The more I learned, the more I was floored by the divide between the enormous amount of suffering this condition causes (some of which I have now experienced firsthand) and the lack of recognition across much of the medical community. Even worse, there are small but powerful lobbies of “experts” who actively undercut the physical basis of the condition, often with vested interests in various forms of psychological treatment protocols, or with their academic reputations on the line (doubling down on their outdated positions even as new biomedical findings have come to light). But most doctors simply never learned about ME/CFS in medical school although it has seen growing research since the ’80s. Despite scant funding, thousands of papers have been published over the years reinforcing the very real pathophysiology of ME/CFS, often by way of technologies we could not even have imagined until recently.
When it comes to the pathophysiology of ME/CFS much remains to be learned, but signs point to autoimmunity, altered immune signaling and function, cellular energy production problems, neuroinflammation, vascular problems, an imbalanced gut microbiome, and malfunctions of the autonomic nervous system (which subconsciously controls many core bodily processes). One fascinating line of thought is that ME/CFS biologically resembles a dauer state, or an evolutionarily conserved mechanism for hibernation when the body senses something seriously amiss. What that something is remains to be uncovered.
Another unifying hypothesis describes how an autoimmune process could be impairing blood/oxygen delivery to the muscles and brain, altering cellular metabolism. It could potentially explain many of the symptoms of ME/CFS. There are too many other theories to list here, but it’s fascinating to think that many could be approaching the same problem from different angles. We are desperate for a breakthrough that would allow these theories to converge on a single pathomechanism behind the disease.
There are no FDA-approved treatments for ME/CFS and there is no cure. Fewer than 5% recover.
The chief blocker of progress is the lack of funding.
Even before the pandemic, ME/CFS received a minuscule portion of the research funding it was due, in relation to its impact on human livelihood, or “disease burden”. In fact, it would need to be funded at least 14x more to receive its equitable share of the NIH budget. A more recent estimate that incorporates rising incidence of ME/CFS following COVID-19 infections revises that figure to 40x more funding.
In early 2022 I released a video covering this funding disparity in more detail:
So how did it get this way?
In short, there is extraordinary inertia in our system for allocating funding to biomedical research, which generally continues to fund well-known conditions and neglects conditions that are not yet well-understood. Part of this comes down to risk-averse bureaucrats looking for quick wins that will pay off during their tenure, the personal biases of grant reviewers to favor their own established fields of study, and misguided psychologization of poorly understood diseases. Even world-renowned researchers routinely have their ME/CFS grants turned down for being insufficiently “hypothesis-driven”. But formulating a hypothesis requires some foundational understanding of the biological differences between the healthy and the sick. It demands basic science research — the very exploratory studies the NIH refuses to fund. Yet NIH grant reviewers and leadership are unmoved by the catch-22 they have imposed on this field. They claim they would fund ME/CFS research if only there were more researcher interest. But the truth is there is already interest, and the NIH has mechanisms at its disposal for driving further interest by soliciting grant proposals for specific fields of study. They have simply been unwilling to use these for ME/CFS.
Additional barriers to progress include the trivializing name given to the condition in the late ’80s, “chronic fatigue syndrome”, which has been likened to calling Alzheimer’s something as benign and reductive as “chronic forgetfulness syndrome”. (Everyone forgets things sometimes, right?) While everyone has experienced fatigue, few have been truly incapacitated by it. As Seabiscuit author Laura Hillenbrand put it, “ME/CFS is to fatigue what a nuclear bomb is to a match. It is an absurd mischaracterization.”
Myalgic encephalomyelitis is arguably the condition’s true original name, dating back to the 1950s, but it imperfectly describes the condition as it is defined today and is difficult to pronounce. It rarely makes it into print.
One of the biggest setbacks over the years has been deciding who even has ME/CFS. Until there is a diagnostic test for reliably detecting who has the condition, doctors and researchers must rely on agreed upon criteria that describe what symptoms a person must have, and what other tests must be done to exclude other diagnoses. The trouble is, there’s little agreement on which set of diagnostic criteria to use. Many versions have proliferated over the years, and some of those used most frequently in historic research have evidently included people with different conditions that also experience persistent fatigue, hindering our ability to detect what is biologically unique about people with ME/CFS.
Developing a diagnostic test and accurately tracking the prevalence of ME/CFS must be top priorities moving forward.
Another fundamental challenge is the complexity of the condition itself, affecting so many systems of the body. It happily slices across medical disciplines, which not only demands new forms of interdisciplinary collaboration but has at times left the condition homeless at institutions like the NIH, without a well-resourced institute to sponsor research. (After years in exile following an unceremonious rejection by Dr. Anthony Fauci’s National Institute of Allergy and Infectious Diseases (NIAID), ME/CFS was finally housed under the National Institute of Neurological Disorders and Stroke (NINDS).)
Despite all these setbacks, few are equipped to protest the ongoing inequity that surrounds ME/CFS, as it incapacitates many of its would-be advocates. Moreover, it incapacitates them in such a way that they might suffer quietly for years or decades without imposing any extraordinary burden on our medical system. The condition often follows an infection, but it is not contagious. It rarely kills.
In other words, it would be difficult to design a condition that causes as much suffering while demanding any less attention from policymakers and the general public.
Most of the symptoms of ME/CFS are invisible. Even those confined to their beds for years may look relatively healthy. And because symptoms fluctuate for those more moderately affected, this can lead even loved ones to doubt the severity of the condition. (“If they were well enough to stop by that party how sick can they really be?”) Of course, they may only be seeing the person on their best days, in their best hours. On their worst, they are confined to bed and hidden from view. This type of doubt is a struggle shared by many with dynamic disabilities.
From personal experience, it is particularly cruel that this condition lures you to take part in life on your best days, only to punish you for it with a vengeance the next. ME/CFS has been likened to a straight jacket that constricts as you struggle against it. Rallying against the condition to reclaim your life is not an option. Only exceedingly careful energy management (known as “pacing”) allows some to reclaim any part of what they’ve lost.
As many as 3 in 4 afflicted with ME/CFS are women — another clue that autoimmunity may be at work, as autoimmune conditions are substantially more prevalent in women. Studies have shown that diseases primarily affecting women are substantially underfunded. These conditions are also more likely to be psychologized. We may have modern euphemisms for “hysteria” but the effect of disbelieving sufferers is the same. (Disease skepticism may be even more insidious when done implicitly, where it cannot easily be pinned down and refuted.)
In 2015, a landmark government-commissioned report was published by the Institute of Medicine that set into motion what might have been a sea change for ME/CFS. One of its conclusions included the following:
“Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world… The committee was struck by the relative paucity of research on ME/CFS conducted to date in many areas related to this disorder. Remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted.”
Around the same time the Director of the NIH, Francis Collins, pledged to take the condition more seriously and a major study was launched by the NIH to deeply probe the physiological differences between the healthy and the sick — the very type of far-reaching exploratory work they had so often declined to fund previously. It was an honor to get to participate in this study.
In late 2019, I spent two weeks as an inpatient in Building 10 at the NIH campus in Bethesda, Maryland, the same complex where chemotherapy was first developed to treat cancer. With the full might of the cutting edge technology employed by the NIH brought to bear against this illness, would we finally get a breakthrough?
Although I have only been able to take part in a handful of studies over the years (see lack of funding), I have found it to be a meaningful way of replacing some of the sense of purpose this condition has taken from me. Someday, people who develop ME/CFS will have access to treatments that restore their quality of life, or perhaps people will take for granted the preventative measures that make the condition a thing of the past, much as we look back on polio and the iron lung. Despite the risks and discomforts of participating in biomedical research, what a gift to be able to contribute in a small way to make this future a reality.
Two and a half years later, I still await the published results of this NIH study. It was prematurely suspended when the pandemic struck. It’s a sorry outcome for a study once billed as a potential turning point for ME/CFS. Yet there are murmurs that at least some interesting findings did emerge from the data they were able to collect. I hope to see these in print any day now.
Despite its promises to take ME/CFS more seriously, NIH funding remains stagnant at a paltry $13–15 million per year, which comes out to less than $10 per person afflicted. (By comparison, multiple sclerosis received $128 million in funding last year.) In recent weeks the NIH declined to increase funding for a handful of ME/CFS collaborative research centers, despite the progress they have made on the shoestring budget they were granted five years ago. It is profoundly disappointing.
Looking ahead, there are a few signs of hope, although they come on the back of new tragedy. Millions of Americans with long COVID have developed a condition that meets the criteria for an ME/CFS diagnosis. (As previously mentioned, ME/CFS often, but not always, follows an infection. It has been known to follow other types of physical traumas as well, or in some cases develop gradually with no apparent trigger.)
Long COVID has now attracted a sizable Congressional appropriation of $1.15 billion in research funds. President Biden recently released a presidential memorandum directing government agencies to support efforts to research and treat long COVID. In conjunction with several forthcoming Congressional bills, this may indirectly serve to support those with conditions like ME/CFS, as well as related disorders that many people with ME/CFS also experience, such as dysautonomia, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), small fiber neuropathy, and fibromyalgia. Learnings may also apply to post-treatment Lyme disease and other post-infectious chronic conditions.
It must be added that none of these applied learnings will come for free. If those with related conditions are also to benefit, they will need to be included as control arms in long COVID studies, or new funding will be needed to replicate long COVID research in a timely manner. Some days there seems little hope of either of these becoming priorities for our government or medical research agencies, even as they move to support long COVID research. It is cruel treatment for all those who have been ill for many years only to be passed over once again.
Still, it has been deeply heartening to see a wave of brilliant new minds enter the field by way of long COVID research, of the likes of Yale’s Dr. Akiko Iwasaki, Mt. Sinai’s Dr. David Putrino, and Dr. Resia Pretorius of Stellenbosch University in South Africa. Some journalists have stepped up in a big way. Long COVID patient advocates can also take a bow for all they’ve done over just the past few years to invigorate this field.
And while funding is always an issue, it also brings me hope to see some extraordinary ME/CFS researchers continue to advance their long-standing work. I’ve spotlighted a number of them as part of an advocacy project called @mecfsquotes, which appears on Twitter, Instagram, and Facebook.
Before I close, I’d like to acknowledge the support provided by my employer and colleagues over the years following my switch to fully remote work. It is an extraordinary privilege and wonderful diversion to be able to contribute to a team that’s building something together, even as I grapple with substantial personal challenges. My family too has always been there for me, somehow always lending the support I needed the most at any given moment. To the friends and housemates who’ve brought me joy during some hard times, thank you.
Above all, I so appreciate being able to share all of this with you. We may not be able to spend much quality time together these days but I always welcome a note. Never hesitate to share whatever fabulous things may be going on in your life. To the extent that I’m limited from partaking in some of this for now, it brings me joy to experience it vicariously through you.
— Winston
P.S. If you’d like to pitch in, I’m leaving some ideas below that could really help make a difference.
How to help
Using the guides below, it takes just a few minutes to contact your elected officials to ask them to co-sponsor the following legislation supporting those with long COVID and ME/CFS:
If you’d like to make a monetary contribution, some outstanding charities are the Open Medicine Foundation (for funding biomedical research into ME/CFS) and MEAction (for influencing policymakers, supporting the patient community, and driving awareness of ME/CFS). The resources linked above are from the Solve ME/CFS Initiative (which lobbies Congress for much-needed funding and provides grants to early-career researchers).
