Long Covid: Disease expert on living with a disease with no cure – STAT

I have spent my career studying infectious diseases that fall under the heading of neglected tropical diseases. Now I have a neglected disease long Covid an incurable (for now and for me) disease.

As a medical anthropologist working in global health, I thought I understood the despair of poor health. I didnt. I join 7% of the U.S. adult population or about 18 million Americans who have experienced long Covid. Diagnosis of long Covid remains uncertain and contested, and treatments, ranging from repurposed drugs to hyperbaric oxygen, are even more so.

I was infected with SARS-CoV2 during the Omicron wave of January 2022. It crashed through my kids kindergarten class and swept our household along with it. We had none of the underlying conditions that may indicate increased risks of poor outcomes from Covid (and which have been used throughout the pandemic to allay fears that dangerous outcomes would only happen to others). My acute infection wasnt scary: I had fever, aches, and chills for about four days. My initial Covid aches and pains were nothing in comparison to when I had dengue fever, known as bone break fever, while working in Guatemalas remote mountains.

And then I just never got better. It took a couple of months for me to realize that. I developed crushing chest pain and a heart rate that would rival a hummingbirds. I couldnt walk around my block without stopping to catch my breath. I was often dizzy, and my arms and legs felt like leaden sausages that had grown too big for their casings.

Like many of my global health colleagues, I love a good adventure and dont mind flirting with danger a little. Ill go anywhere and talk to anyone. I once talked a Guatemalan street gang out of harming my small research team as they held a Kalashnikov to our heads during a robbery. It was scary, but I didnt fear for my life. I knew it wasnt the end of my story. But I have thought that long Covid might be: At its worst, I wrote letters to my children in fear that I wouldnt survive the night.

More than two years in, Im among the luckiest of those living with long Covid. My symptoms are managed, though imperfectly. I have the academic background to follow the latest research findings and access to brilliant colleagues doing some of that work. I have the money, insurance, and health care providers that have enabled me to try several treatments.

Heres a bit of what Ive tried so far, all shots in the dark: A beta blocker controls my chest pain and high heart rate. A 3-month course of powerful blood thinners improved numbness and pain in my limbs. Constant use of electrolyte fluids like Gatorade and Pedialyte (ironically what I studied in graduate school) improves my dizziness and is essential for propping myself up to teach a class in a lecture hall or get through a day of Zoom meetings. My iliac vein has completely collapsed in my left leg, and my cardiologist wants me to get a stent.

I wouldnt be able to hold down the jobs in warehouses, factories, and farms that many in my family have had.

Though my world has gotten small, and Im not able to travel for my work as I once did, most days I feel like I just got off a long-haul flight and live in a permanent state of jet lag. I have one of those pill organizers stuffed full of medications and supplements that I hope will help at least a little. (I still struggle to reconcile my self-identity with this new reality.)

I was able to take a 15-day course of the antiviral Paxlovid, and it was the best Ive felt in two years. For many people, the side effects of this medicine are terrible, but I never wanted its hallmark metallic tang to end. About two days after my course of Paxlovid ended, though, my symptoms crept back. Recent findings of viral persistence came as no surprise to me, and new results from a clinical trial investigating a 15-day course of Paxlovid in long Covid patients has shown no benefit.

I am now taking (at great cost) maraviroc, an antiviral used to treat HIV, which helps partially control my symptoms. I recently slid into the whirring tomb of an MRI machine to try to find an explanation for persistent post-Covid migraines in my brain, but that was a dead end. Nothing was found, and I dont know whether to be disappointed or relieved.

I admit I am scared. This is not a funny story I will tell colleagues over drinks later. Theres no gangland drug lord to negotiate with this time. Instead, I spend a lot of my time lying in the dark (Im here now, even as I type this) negotiating with god and science to make me and all of us suffering with long Covid and other post-viral illnesses better. Its surprisingly been the short periods when I have felt better that are the most upsetting, as they highlight how terrible I feel most of the time.

So I fake it. I need the pretense of being my old, fearless self. I need to discuss interesting things with colleagues and teach and run my lab. I need to take the snacks to soccer and help my kids with homework. Thats what makes me who I am, even as I playact a poor facsimile of my healthy self that requires hours (sometimes days) of recovery time afterwards.

I will continue to bargain with the universe to get to live the life I have worked to build for myself. I want that for everyone. My work in global health has shown me both the fragility of life but also the value of fighting for everyones right to a full and healthy life.

I understand that no one cares much about Covid anymore. Its been a long haul for all of us, even those who arent long haulers. I hope everyone who hasnt experienced long Covid never really understand what Im talking about what others with chronic illness and disability have tried to teach us that our abled bodies are only temporary. Long Covid and the SARS-CoV-2 infections that cause it are harsh teachers.

I am inspired by the work of the long Covid Patient-Led Research Collaborative and the research being done to uncover the causes of and cures for long Covid. But its not enough. Given the widespread burden of disease and the losses to the economy and social fabric it is causing in the U.S. and around the globe, the U.S. government must act quickly and decisively to curb long Covid. The Long Covid Moonshot is a collective advocating for $1 billion in annual research funding for long Covid, akin to the Operation Warp Speed that enabled the first generation of Covid-19 vaccines. U.S. Senator Bernie Sanders (D-Vt.) recently released a Long Covid Moonshot legislative proposal. Bipartisan support for long Covid is essential so that someday no one needs to care about Covid and its lasting effects.

Long Covid feels like living with a gun to my head. Please pull the trigger on the moonshot.

Rachel Hall-Clifford, Ph.D., is an assistant professor of global health, human health, and sociology at Emory University in Atlanta.

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Long Covid: Disease expert on living with a disease with no cure - STAT