Long Covid, The Long History Version

It's the tip of a long-term scandal in how we approach complex chronic conditions and post-viral syndromes

I spent most of my summer researching our Long Covid response. The first (I hope) of many pieces on this topic is out today, in the New York Times:

When the influenza pandemic of 1918-19 ended, misery continued.

Many who survived became enervated and depressed. They developed tremors and nervous complications. Similar waves of illness had followed the 1889 pandemic, with one report noting thousands “in debt and unable to work” and another describing people left “pale, listless and full of fears.”

The scientists Oliver Sacks and Joel Vilensky warned in 2005 that a future pandemic could bring waves of illness in its aftermath, noting “a recurring association, since the time of Hippocrates, between influenza epidemics and encephalitis-like diseases” in their wakes.

Then came the Covid-19 pandemic, the worst viral outbreak in a century, and when sufferers complained of serious symptoms that came after they had recovered from their initial illness, they were often told it was all in their head or unrelated to their earlier infection.

Of all the topics I’ve researched throughout the pandemic, none have left me more despairing, on behalf of the patients, but also captivated by the historic, scientific and human story—I knew a few broad outlines from before, but everywhere I looked, I saw hugely-important issues and dynamics that, to this day, are underappreciated.

This particular piece focused on our response, especially our inadequate and even confusing and poorly-done research efforts. But there’s so much more to cover.

To start with: how medicine dismisses things it doesn’t (yet) understand, and worse, refuses to learn from episodes that make the denial hard to maintain. Post-pandemic or post-epidemic discovery of complicated post-viral conditions occurs again and again in history, to be forgotten till the next time.

Post-viral ailments pop up in so many areas: cancers, neurogenerative disorders, chronic complex conditions and who knows what else, and yet, while the dots are hard to connect, and not enough is properly researched to begin with. Imagine trying to understand the connection between shingles in 50+ year-olds and childhood chickenpox, without even a proper germ theory of disease. That’s how some of this feels like.

Also: the way a forced, binary mind/body duality operates in both clinical medicine and scientific research is an important sociological and scientific story, both to be written more about but crucially, to address. This could impact everything from how we understand and approach conditions like depression and anxiety, as well as many chronic conditions. For all we know, there are deep dynamics that are mutual and multi-directional that connect all of this, and an integrated and humane approach to neuropsychiatry can bring so much benefit to so many.

And then the patients and the sufferers… Not just Long Covid, but many other chronic conditions that have long been ignored or denied. Historically, both multiple sclerosis and ulcers were once treated as “in your head” diseases, with patients blamed until the imaging showed the brain lesions, and the bacteria causing the ulcers was finally discovered. And again, we all would benefit from an integrated approach that uncovered more.

I also despair at how much poor research is being produced in this area—going viral on social media, uncritically amplified by traditional media as well, and some honest, rigorous scientists being incorrectly villified as minimizers or deniers when they are the ones doing the right thing, which is to try to bring rigor, science clarity to all this. If we chase away all the good scientists, who will work on this? Sympathy is great, but we need the highest levels of science to make progress. I think this stems from a combination of issues: weak, muddled definitions, inadequate data and researchers overselling their findings to gullible journalists.

I also think poor research has really, really hurt the effort to get this condition understood and recognized because many people look at the terrible, vague definitions and clearly implausible claims floating around and incorrectly decide it’s all fake.

Under the C.D.C. definition, someone with a single symptom just four weeks after illness can be lumped under the long Covid umbrella with someone bedbound for years.

And such vague definitions that don’t distinguish transient issues from chronic conditions, mild symptoms from debilitating ones, and different categories of illness from each other, impede research, treatment and acceptance.

The symptom descriptions for long Covid are too vague. Do “brain fog” and “fatigue” mean people don’t feel as sharp as they were and are a little off their jogging times, or are they experiencing a cognitive crisis so profound that they cannot find words and are so fatigued that brushing their teeth leaves them unable to get out of bed for the rest of the day? The latter has happened even to some people who had mild bouts of Covid-19.

Without clarity, how can we research or treat?

Existing definitions fail to capture the subcategories of long Covid, with different symptom clusters and levels of severity and persistence, creating an obstacle to research and treatments.

So my piece calls for a National Institute for Post-Viral Conditions. For real. We owe it to the many, many people suffering from a chronic, debilitating condition that they caught during a pandemic where the public health response was inadequate in many aspects.

But I mean this most sincerely: I think we all would benefit:

But solving this puzzle could be revolutionary, unlocking the door to understanding many conditions that cause much human suffering.

The 1971 National Cancer Act changed the way scientists deal with disease, pouring money into prevention, detection and research.

Scientists battling debilitating, chronic conditions like long Covid and other postviral conditions deserve this sort of commitment in leadership, funding and recruitment to get the best minds in the fight.

We need a National Institute for Postviral Conditions, similar to the National Cancer Institute, to oversee and integrate research. Neither academia — prone to silos and drawn to work that leads to notable publications, which can leave important questions underexplored — nor the private sector — focused on profits — is up to the task alone.

With such an initiative, we could honestly tell so many looking for answers that help is on the way.

The more one looks, the clearer it is that viruses are indeed “bad news wrapped in protein”, as two scientists memorably described them before. Developing more vaccines against more of them, and broadening how we understand, research, approach and, hopefully, treat these conditions is a very promising avenue for improving our well-being. Here’s to hoping for change, and soon.