Untreated

If you knew anything about chronic fatigue syndrome or myalgic encephalomyelitis or, most tellingly, post-viral syndrome when COVID-19 arrived, then you too knew “Long COVID” was coming. Most people have no idea what these terms mean, even though at this point they really should be common knowledge.

For over a decade of my life I, like countless others, suffered from debilitating chronic back pain. It progressively took over my life. I couldn’t sit through a day of work without being in excruciating pain. I measured every movie, every concert, every night out with friends against the inevitable pain I would be in afterwards, and whether it would be worth it. I researched photos of restaurants in advance to determine how much their seating favored aesthetics over ergonomics and how painful it would be to sit through a meal. And in that time, nothing any doctor or physiatrist or physical therapist or acupuncturist offered me made any long-term difference. By the end of my sentence — we’ll get to how it came to an end later — I was walking into doctors’ offices in tears not only from pain but from the fear and helplessness of being trapped in an increasingly solitary confinement from which the medical system seemed to offer no escape.

This is an experience that many people with myalgic encephalomyelitis are unfortunately all too familiar with. “Myalgic encephalomyelitis,” M.E. for short, literally means muscle pain and acute brain inflammation, which, you know, clearly sounds pretty bad! M.E. is also interchangeable with Chronic Fatigue Syndrome, a much more vague and highly misunderstood diagnosis. C.F.S. has been ridiculed for decades — mocked as “Yuppie flu” or simply laziness; some people, as Kim Kardashian put it, “just don’t want to work” — exemplifying how trivialized the condition’s tragic reality is in our ableist culture. M.E./C.F.S. is also, for reasons the past two years have made abundantly clear by now, known as post-viral syndrome, which I discovered after watching the 2017 documentary, Unrest by Jennifer Brea.

At 28, Brea, a Harvard Ph. D. student, is struck down by a mysterious fever that leaves her bedridden, and never really recovers. Her previously healthy life is taken over by debilitating, chronic exhaustion and excruciating pain. She becomes unable to walk up the stairs in her home, stand, or even finish a sentence. Brea first turned the camera on herself to capture proof for her doctors, who, since they would only ever see her when she could manage to feel well enough to make it into the office for an appointment, insisted her experience was “all in her head.” It wasn’t until they saw the footage of Brea struggling just to crawl to the bathroom or string words together that they began to believe how sick she really was. That video evidence would become the basis for Brea’s documentary, which shows just how common medical disbelief, dismissal, and invisibility is for the M.E. community, and continues to be the case for many with Long COVID today.

What was made abundantly clear in Unrest is how criminally under-researched this disorder is. Yet even amid the profound lack of medical understanding or even acknowledgement, let alone treatment, one thing was already known at the time: this condition seemed to occur in the aftermath of viral infection. Indeed, the myalgic encephalomyelitis diagnosis was first used in 1955 after an outbreak at the Royal Free Hospital in London.

Which is why, as I watched the novel coronavirus spread into a global pandemic in 2020 I knew two things for certain: 1) We were about to witness a tsunami of post-viral disease rolling ashore worldwide; 2) I suuuuuuper did not want anything to do with it, and no amount of defeatist “everyone’s going to get it” medical hexing from so-called healthcare professionals was going to change my mind. I’d already seen firsthand the limits of what they understood.

What I experienced with my back pain was nothing compared to what I saw in Brea’s documentary, but could I relate to chronic pain sucking the light out of my life? To feel my body deteriorate, not knowing just how bad it could or would get or if I would even survive it, while getting absolutely no answers from the medical establishment? Yes. It’s what piqued my interest in watching Unrest in the first place. In my carefree life before back pain I would have never watched a documentary about a life-destroying medical disability, and I’d certainly have had no way to relate to it. After all, who watches horror movies because they relate to them? People who’ve never lost their health don’t know what it’s possible to lose.

Today, it is estimated that some form of post-viral chronic disease occurs in 10–30% of COVID infections. A recent study of over 80,000 children and adolescents found the prevalence of Long COVID to be above 25%. The research into Long COVID could and should be going faster, but the immensity of post-viral disease prevalence over the past past two years has catapulted our understanding leaps and bounds beyond where it was, and, as I’d expected since the early days of the pandemic, there is a (slowly) dawning realization of the connection between Long COVID and M.E./C.F.S.

What the new research is confirming is a model of what viruses really are that is very different from what doctors would typically lead you to believe. Just because something starts out as “flu-like symptoms,” that doesn’t mean it ends there.

Persistence

Since most RNA viruses are teeny tiny they have barely any room for their own genes, usually containing less than a dozen. To replicate themselves and spread they hijack the resources of YOUR cells’ genes. Antiviral treatments work by disabling the cellular machinery that viruses use to replicate themselves, thereby cutting off their resupply lines. Imagine: Ukrainian shoulder-mounted missiles taking out Russian fuel convoys. Even if the invader’s tanks have breached your borders, without fuel they’re left immobilized and useless, hunks of trash waiting to be hauled away. (Bonus: this analogy makes macrophages Ukrainian tractors, I guess. Anyway.)

This is how Paxlovid works. Paxlovid is a highly effective COVID-19 antiviral that literally exists in our timeline today, but most people, including, dismayingly, many healthcare professionals, have no idea.

As Zeynep Tufekci writes in the New York Times:

In the United States, doctor outreach is often, sadly, left to pharmaceutical companies, which spend tens of billions of dollars each year marketing their drugs to physicians. However, Paxlovid received an emergency use authorization, which means that legally, Pfizer cannot directly market it yet, so physicians don’t get even this sort of outreach. This leaves individual doctors on their own for keeping up with new drugs and treatments, even in a pandemic and even when the drug is potentially lifesaving.

There is also widespread misconception among patients. The propaganda that has conditioned people to believe they should surrender and “live with” COVID has created a mindset that rejects intervention. Mask mandates are gone, quarantine is over, testing capacity flushed down the toilet. Why try to mitigate something your entire society is telling you should not be mitigated at all? According to Reuters, eligible patients are turning down prescriptions. “I’m just going to go home and tough this out,” patients tell doctors who seemingly add no further comment, both sides equally clueless about how post-viral syndromes begin.

Research has shown that high levels of SarsCov2 RNA in the blood is one of the factors most strongly correlated with the development of Long COVID. From there it spreads throughout your whole body and even after the acute infection is over the virus persists in various organ tissues, wreaking havoc. The invader’s tanks may be gone now, but landmines and booby traps remain. Researchers have found “viral reservoirs” of SarsCov2 genetic material in, among other places, people’s intestines, livers, kidneys, thyroids, testes, uteruses, and brains many months after initial infection. More than half of Long COVID patients have detectable virus in their plasma, urine, or stool, indicating systemic persistence. Dogs can even smell the virus in Long COVID patients’ sweat.

The virus may not kill you right away, but it persists inside your body, leading to prolonged, multi-organ system damage. Within a year of initial COVID infection people see their likelihood of developing heart failure go up by 72%, heart attack by 63%, stroke by 52%, diabetes by 40%. In one study, half of those who had developed a new neurological disorder soon after being infected were still experiencing cognitive problems such memory loss and trouble focusing 6 months later. The virus also decreases sperm count and motility, and increases abnormally shaped sperm. But you can just “tough it out.”

When Paxlovid was first released, early in 2022, the treatment was in short supply, but now the pills are sitting on shelves. On April 26th, The White House announced the treatment is “in ample supply.” Though keep in mind that some people relapse into COVID positivity after the Paxlovid treatment course, which Pfizer indicated could happen in their Emergency Use Authorization materials. It’s possible that the EUA treatment regimen may not be enough to fully clear the virus for everyone. It’s still early days in terms of what we know. Nothing’s a sure thing, except one thing.

“New evidence has revealed that anyone infected with COVID is at higher risk for heart issues — including clots, inflammation, and arrhythmias,” according to Johns Hopkins. “A risk that persists even in relatively healthy people long after the illness has passed….It spares no one.”

Two years in, most people believe that COVID is now a “mild” respiratory illness. In the long run, we will discover too late just how misguided that idea is.

The Long Haul

Today, acute covid is already our the 3rd leading cause of death in the United States, and Long COVID will undoubtedly become one of the most prevalent chronic illnesses — which causes a multitude of other leading chronic illnesses, such as heart disease — in our foreseeable future. But it’s hardly unique.

In January 2022, a study identified how the Epstein-Barr virus triggers Multiple Sclerosis: “Part of the virus mimics a protein made in the brain and spinal cord, leading the immune system to mistakenly attack the body’s nerve cells.” In essence, Multiple Sclerosis is Long Epstein Barr.

Indeed, as epidemiologist, Dr Ellie Murray, tweeted: “I saw someone say that much of what we see as scary about polio is actually ‘long polio’ & tbh that’s pretty true. I think the ‘long’ framing makes it clear long COVID isn’t unprecedented & that we need to face up to it.” Her list of other “long” infectious diseases includes:

- Rheumatic heart disease ==> long strep throat / long scarlet fever

- Shingles ==> long chickenpox

- AIDS ==> long HIV

- Stomach cancer ==> long H. pylori

- Mono & certain types of lymphoma==> long EBV

- Liver cancer ==> long Hep C / long Hep B

- Kaposi sarcoma ==> long herpes virus 8

- Bladder cancer ==> long schistosomiasis

- Bile duct cancer, blindness ==> long onchoceriasis

- A whole range of birth defects & pregnancy loss ==> long versions of a whole range of infections, including Zika, rubella, listeriosis, & many many more…

obviously not all cases of all of the diseases in the above tweets share the exact same cause, because very few diseases have only one single cause (tho a few do!)

But the diseases above CAN be caused by infections with the pathogens listed.

In addition to Murray’s list, and M.E./C.F.S., as already covered, other greatest hits include:

Viruses can cause cancer. And that, we all seem to agree, is something we don’t want. But the infection that can lead to cancer, we’re totally fine with. Perhaps if we understood viruses as what they really are, we’d show a little more respect.

Brain Fog

Parkinson’s is a degenerative brain disease that occurs when neurons responsible for generating dopamine die. Dopamine is a neurotransmitter that is critical for controlling movement. As dopamine diminishes, patients experience constant, uncontrollable, full-body shaking. It can lead to depression, anxiety, and even dementia.

For decades, neurologists had suspected a link between Parkinson’s Disease, which affects nearly one million people in the United States, and the flu. Several studies had found a sharp increase in Parkinson’s cases after the 1918 influenza pandemic. In October 2021, a study published in JAMA Neurology looking at over 60,000 people found that those who had had the flu, since as far back as 1977, had a 70% higher risk of developing Parkinson’s 10 years later, and a 90% higher risk after 15 years.

The disease develops slowly, beginning perhaps with a subtle hand tremor, so by the time it’s progressed to diagnosis the acute flu infection is long gone, potentially a decade or more in the past. By that point all a patient can hope for is to stave off the progression of Parkinson’s for as long as possible. The disease has no cure and cannot be reversed, but what has been shown to improve patients’ symptoms is nothing short of incredible.

In Suggestible You: The Curious Science of Your Brain’s Ability to Deceive, Transform, and Heal, Erik Vance writes:

Jon Stoessl at the University of British Columbia in Canada has done the most work by far in this area. In a 2010 study, he and his co-author invited a Parkinson’s patient to try a cutting-edge medication and then get his brain scanned using positron emission tomography, or PET, which focuses on the release of chemicals in the brain. The man came in on a wheelchair. After taking the drug and sitting for the scan, he practically sprinted up the stairs to the debrief room… where they informed him that the new drug was a placebo.

The study showed a massive release of dopamine in the brains of people who have very little of it available. It’s common for Parkinson’s patients to show placebo response north of 50 percent.

Because of the high placebo response among Parkinson’s patients, sham surgeries have become almost required in recent years to test the efficacy of any experimental therapy or drug aimed at this disease. Just to give you a sense of what this looks like, the primary measurement of Parkinson’s improvement is a set of mobility and flexibility tests called the Unified Parkinson’s Disease Rating Scale. Studies suggest that placebo pills have the power to give patients as much as 10 percent more mobility, while a sham surgery can provide up to 25 percent more mobility. A common joke among researchers is that the greatest advance in Parkinson’s medicine over the past decade has been the sham surgery.

To recap… influenza virus infection leads to a neurological disease a decade or more later that kills brain cells that generate dopamine and the most effective treatment is based on the brain’s ability to trick itself into generating dopamine?

Very normal stuff. Basic common sense. “Just like the flu.”

Vance goes on:

In cases like the man in the wheelchair, the placebo effect is often temporary. It wears off when the brain stops pumping out excess dopamine. But Stoessl wonders if there might not be a permanent version. What does that mean for chronic pain sufferers? Can you erase years of agony? After all, a placebo tinkers with the fundamental purpose of you brain — its prediction function. If it can lead that function astray temporarily, might it lead it astray permanently?

Which brings us back to what finally cured my back pain. After a decade of floundering around the medical system, being referred to spine surgeons and prescribed things I can’t even believe, the last doctor I ever went to for back pain pointed me in the direction of the work of Dr. John Sarno, who practiced at N.Y.U.’s Rusk Institute for Rehabilitation Medicine from 1965 until his retirement in 2012.

And then, of all the medical nonsense you could ever imagine, the process of reading Sarno’s book, Healing Back Pain, made my pain go away.

How?

What had happened to me?

How could reading a book have this effect??

The entire premise of Healing Back Pain is based on the simple idea that the mind and body are deeply interlinked and influence one another. It presents the possibility that the road to healing lies beyond the reductionism of our “conventional” medical system, and that the first step on that path is to understand pain itself differently.

Last year, a group of researchers conducted a randomized, controlled, clinical trial of an innovative approach to treating chronic back pain. Study participants were randomized into 3 groups to receive either the usually-prescribed standard of care, an open placebo, or “pain reprocessing therapy,” a treatment approach influenced by Dr. Sarno’s work. What they found is that 66% of participants in the pain reprocessing therapy group were pain-free or nearly pain-free after 4 weeks, compared with 20% in the open placebo group, and 10% in the the usual standard of care group. Yes, literally knowing you’re getting a placebo was twice as effective as the usual standard of care that you’re likely to get from a doctor today for back pain. But most effective of all was changing patients’ beliefs about pain itself. And the improvements were largely maintained through 1-year follow-up. These findings, the researchers write, show that “treatment focused on changing beliefs about the causes and threat value of primary chronic back pain may provide substantial and durable pain relief.”

I am certainly not saying that we should treat post-viral infection with placebo (that would be insane: get vaccinated; get antiviral treatment; wear a mask), or tell people it’s all in their heads (I’m not a doctor!), I’m just saying that our false constructs about disease, including viral infections, are clouding us from seeing what is actually there, and holding us back.

Viral Content

We grew up in a time of unimaginable medical progress, heirs to a public health fortune that compounded interest for generations, bathed in the glow of film and TV narratives that glorified all-knowing doctors. We imagine that when something goes wrong we can simply go to a doctor and they’ll know what to do; they’ll be able to do something. “Here,” you’ll say, dropping off your body at the mechanic shop, throwing the person in the uniform the keys, “fix it.”

My decade of back pain opened my eyes to how naive this narrative is. How easy it is to end up completely on your own, abandoned when you need help the most, with no answers. Especially if your ailment doesn’t comply with a convenient set of checkboxes that doctors already understand. It laid bare how limited the scope of our conventional medical understanding really is.

What does it mean, for example, that Long COVID may be partially explained by a neuroinflammatory process involving the activation of microglia? Microglia being immune cells that operate exclusively within the central nervous system and are also highly implicated in PTSD? What does it mean that stimulating the vagus nerve reduces inflammatory markers in people with COVID which could have the potential to mitigate Long COVID symptoms? What does it mean that individuals in the lowest socioeconomic status group are nearly twice as likely to develop long COVID as those in the highest group specifically as a function of increased stress? Literally, what does it mean that the flu virus causes a neurological disease decades later, and that placebo — activating the brain’s endogenous chemical dispensary through pure suggestion — can offer relief?

Do you think your doctor can tell you what it means?

(If so, are they taking new patients?)

It’s been several years since I read Healing Back Pain, and cognitively I still don’t know how to fully reconcile that reading a book that made me understand pain differently cured my pain (even though there’s now clinical evidence!) But experientially, I know that once, I used to be in constant pain, and now I am not. There isn’t a model for how or why this works in our culture, where we use still increasingly nonsensical phrases like “tough it out.”

The ignorant calls to “go back to normal” in this light sound even more stupid. We are only barely starting to see things for what they really are. Why would we want to go back? We knew even less there.

Our society is actively promoting the meme that the pandemic is over, it’s mild, it’s no big deal. If more people were informed of what viruses really are — medical professionals ought to tell us, don’t you think? — how they persist, and how they continue to cause long-term damage months, years, and even decades after initial infection, perhaps we’d have a very different outlook on avoiding infection and mitigating spread. Maybe we’d approach our entire system of healthcare differently.

Changing our beliefs can have powerful results. Perhaps we’ll make a lot more progress in health and medicine in this century once we as a society change our beliefs about viruses to reflect the true nature of what they really are.

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Twitter: @babiejenks || Writing about the future, culture, tech, and experience design || Principal UX Designer @ athenahealth

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Twitter: @babiejenks || Writing about the future, culture, tech, and experience design || Principal UX Designer @ athenahealth

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