My Whole Deal Re: Long Covid
When I was very fucked up with Long Covid in the summer of 2023, I woke up every morning (if I had slept at all) to immediately google “long covid news”. I had been reading about the lives of other people with LC or non-Covid ME/CFS on twitter and reddit for the past few months, and I was aware that people had been sick for years or decades with no terrain-changing scientific breakthroughs. But I still believed that something would happen very soon. Even though I’ve had a science-adjacent career for years and at times done what some would call science myself, I was susceptible to the breathless news coverage that scientists “may have figured out what causes long covid”. Many articles framed like this were about very small studies, cohorts that only contained older patients, or papers that weren’t about LC at all but about the effects of acute infection on laboratory animals. I could identify these limitations, but I believed that an inflection point would be reached soon and that LC would be solved in five years.
I was doing a lot of magical thinking at that time. I had developed LC after being infected in March, but became suddenly and violently worse when I was reinfected in July of the same year. I imagined that if I had gotten COVID in 2020, before being vaccinated, that I would not have developed LC. This wasn’t an evidence-based theory; what little research is available suggests that I would be sicker with LC if I had not been vaccinated. It wasn’t based in my values either; I support vaccination (although I believe much more research is needed on the rare cases of vaccine-induced ME/CFS, and on why vaccines don’t prevent LC entirely). I also often thought that if I had been able to avoid being reinfected so quickly, I would have made a full recovery. I had been living very cautiously in the four months between developing LC and getting Covid again. I’m still not sure how I got it the second time, but it may have been from a very brief unmasked encounter outdoors.
I developed visual snow syndrome, and struggled to see as afterimages hung in my vision interminably. I slept very little, and no matter how sleep-deprived I got, my body could not remember how to fall asleep. I would be on the verge of sleep, and then jerk awake with my heart racing. This was often accompanied by a sudden, vivid hallucination of the bright outline of whatever visual stimulus had troubled me the most that day (usually the light behind closed window blinds). I struggled to walk short distances again after recovering some of my mobility since the spring. My nerve pain greatly increased, and I developed internal vibrations and vertigo. I pretended that my new trouble stringing thoughts together was just a byproduct of insomnia. I have (or have had) many other symptoms that I won’t go into detail about here.
I tested positive on PCR, but did not have detectable nucleocapsid protein antibodies in my blood, which are often erroneously believed to be perfectly accurate for diagnosing recent Covid infection. An infectious diseases doctor said it was strange that I hadn’t seroconverted after two infections, but it didn’t have anything to do with LC. (This is not scientifically established.) Family members told me that it was normal to take a while to recover from Covid, since it had taken them a few months to fully recover from (fairly severe) acute infection in 2020. I couldn’t get them to understand that developing neurological symptoms after a very mild infection and then getting infected again immediately is different from prolonged recovery followed by years of robust immunity. Online, I read that 10% of people were going through the same thing as I was, but were in denial, or were hiding it. Although I had believed this before I was reinfected, I now wasn’t sure it was possible that 10% of the population was as sick as I was, and I noticed that most studies of Long Covid prevalence did not require subjects to have neurological symptoms. I did not have the tools to make sense of my situation, and I felt like I had permanently lost my mind.
I still don’t have the tools, scientifically or medically speaking. A few good studies have come out since last year, but progress remains slow. I believe that the obvious demand for news coverage is evidence that the public cares about LC, although most mainstream reporting misleads them by living in an eternal present; there is no historically neglected disease (or family of diseases) and there will be no tomorrow, when the poorly spent one-time funding runs out with no plan of renewal. I do feel like I’ve acquired the tools to understand where I am politically. Although I’m not sure if I have ME/CFS, the failure to address the type of LC that I have is a direct consequence of decades of neglect of ME/CFS, POTS, MCAS, Fibromyalgia and other diseases that disproportionately affect women. I would much rather have tons of studies of ME/CFS and post-exertional malaise than studies of lingering fatigue after hospitalization with acute illness, since I do have many symptoms in common with ME/CFS.
Additionally, I now believe that getting infected again immediately reflects weakened immunity as a component of the Long Covid that I already had. I don’t think I’m persuadable based on the current evidence that everyone’s immune system is compromised following Covid; I believe something is wrong with us specifically. I’m open to being wrong about this, but I don’t think LC patients should gamble our future on this theory, or the broader theory that there’s something uniquely dangerous about Covid to most people once enough immune memory has been acquired. It’s been long suspected in the ME/CFS community that some patients are immunocompromised as a result of their illness; the International Consensus Criteria for ME/CFS includes increased susceptibility to viral infections as a possible marker. It’s also anecdotally established that ME/CFS patients can become permanently worse from infections, and this communal knowledge predates Covid. Scientists such as David Putrino have now observed in LC clinics that any infection (and other immune challenges) can worsen LC, although a formal study has not been conducted.
It’s very difficult to go through life with the fear of becoming worse hanging over every in-person interaction. I do mask, obviously, but masks aren’t magic. I don’t trust my immune system anymore because of my experience. Also, although some people find that masking doesn’t diminish their feelings of connection with others, it does for me. As a consequence of all of this, I have withdrawn from public life beyond what is required to manage my ongoing symptoms (as many people with LC have). I very much support the movement to improve indoor air quality. I believe it will reduce airborne transmission of diseases without requiring people to give up the full experience of human connection. I also think truly comprehensive management of LC would include restoring a normal response to immune challenges: biomedical science should prioritize understanding and reducing our disproportionate risk, even as we work to reduce risk for all. Since patient priorities can influence what biomedical research is conducted, I hope others will come to share this priority with me.