Long COVID – a public health crisis taking out women at the height of their lives

After getting vaccinated, I was no longer afraid of COVID-19. I am an emergency physician at a downtown academic hospital in Toronto. Acute infection with COVID now likely would be no more than a cold or flu for me.

I went to work with confidence that personal protective equipment (PPE) would provide another layer of protection. I felt incredibly grateful for immunization and how quickly we had access.

But as a woman in my 40s, I learned to be afraid of long COVID – and for good reason. The first reports of long COVID came out of Italy in June 2020, when most of us were still learning to don PPE. The Atlantic has covered long COVID eloquently throughout the pandemic. While there is a growing awareness of the scale of the problem, the root cause remains shrouded in mystery.

Even before the pandemic, several women I knew had “disappeared” from their social and work lives in their 30s and 40s, consumed by some form of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome after an infection. Post-viral syndromes may affect more women because our immune systems are built for reproductive purposes and are more likely to become dysregulated after seeing a novel pathogen like Lyme, or COVID-19.

What is worse, women are less likely to be taken seriously than men, especially with multi-system complaints that cannot be verified by objective testing. Some women have described this gender bias as “medical gaslighting,” where their persistent, debilitating symptoms are labeled as anxiety, not unlike the historical diagnosis of “hysteria.”

Long COVID symptoms now dominate my life, hopes and dreams. They’ve done so for the past six weeks. I am writing this piece in the morning because I will be back in bed by noon. I am writing now because the “fog” has lifted for a little while; often it is difficult for me to put one word in front of another. I am writing now because I may forget later. I am writing now because the constant headache and breathlessness often worsens as the day wears on.

As soon as I realized that I wasn’t getting better after my COVID infection, I went looking for answers. My identity as a mother, as an active and social person, as a physician, as a researcher, as an advocate all feel so deeply threatened by relentless fatigue, cognitive impairment, headaches and the latest, hyperacusis, which means I cannot sit through a meal with my family listening to the scratching of forks on plates.  The stories of these women by Time Magazine were both validating, and deeply sad. I would do anything to not be like this for the rest of my life.

I found myself on Reddit immersed in scientific papers, anecdotes, hope and hope lost.

I found myself on Reddit immersed in scientific papers, anecdotes, hope and hope lost.

The mast cell hypothesis was very attractive, as it seems treatable, and I started an antihistamine, just in case. “Sticky platelets’” are thought to cause hypoxia to tissues and the brain, and are driving people to spend tens of thousands on apheresis in Germany. Anecdotally, they tend to get much better, and then back to their miserable new baseline again in two weeks. I started taking aspirin, just in case. The mitochondrial dysfunction seems very difficult to “fix,” but like other desperate people, I’m taking Coenzyme Q10 and NADH, just in case.

The inflammatory hypothesis leads down a long road of supplements and dietary “solutions.” Turmeric/curcumin because why not? I’ve been meaning to eat more turmeric anyway. So much celery. Resveratrol is in grapes, but too many grapes would undermine my low-carb, high-fat diet and intermittent fasting, both magical cures purported to cure everything – so resveratrol in pill form, there goes $30. Alpha Lipoic Acid because of oxidative stress. So many omega-3s. N-Acetyl Cysteine (NAC), another antioxidant that we use to save the liver and the lives of people with acetaminophen overdoses, is now part of my daily routine. I’m not sure why, but there was some evidence for people with HIV in the 80s, so that’s good enough for me. Because like everyone who is living with this, I am desperate.

The viral reservoir hypothesis resonated with me and led me down a deep hole in my search for a cure. Is there a live virus in hidden reservoirs – wonderful! That is treatable! If there is a dead virus or fragments, that is also potentially treatable! This is certainly what long COVID feels like – waves of virus launching waves of cytokine release. I quickly lost hope, realizing that the only way to access Paxlovid would be enrolling in clinical trials that were still in the planning stages.

Which leads me to today.

I am trying to come to a place of acceptance. I still hope to escape chronic symptoms, but I have found other people’s stories validating and helpful; I want to help do that for others. I have seen one of the world experts on this subject, and the only thing we know helps is rest and pacing. I am taking more time off work. This is very, very hard for  me to do as it is so much of my identity and source of joy and purpose. I am buying earphones to help with my neurological symptoms.

But save your money, except the antihistamine, in full recognition that “Self-management of symptoms in the long term is often costly, with some individuals using a substantial proportion of their income, which threatens to widen existing health inequalities.” I am trying to be patient, as so many others are, waiting for solutions in the shadows as this “acute on chronic” phase of the pandemic rages on.