New York Magazine Article Biased and Riddled with Errors

Posted on November 22, 2022 by Jennie Spotila

Today I sent the following email to the Editor of New York Magazine:

As a reader of New York Magazine, I have come to expect your articles to be accurate, well-researched, and fair. Unfortunately your recent piece, “Has Long COVID Always Existed?” by Jeff Wise is none of these things. As someone familiar with the topics covered, I can tell you that the article is misleading, biased, and riddled with errors. Worse, it exacerbates longstanding misconceptions that people with ME/CFS and Long COVID must overcome when seeking effective care, and it risks reviving myths about this condition that I and many others have worked for decades to dispel.

I have personal experience with ME/CFS and its consequences. I was an Ivy League-educated attorney when I got sick with ME/CFS almost thirty years ago, and I have spent more than two decades advocating for scientific research into the disease. For the past ten years, I have covered issues and developments in the ME/CFS community on my blog, Occupy ME. My work has also been published by the Philadelphia Inquirer, STATNews, and on Psychology Today.

I find the bias and inaccuracies in Mr. Wise’s article especially surprising and discouraging given that his previous reporting, including on Paxlovid and Omicron, has been accurate, balanced, and reasonable. Those articles relied on solid research and experts in the field and fulfilled the journalistic goal of helping readers understand complex topics.

Sadly, Mr. Wise’s most recent article stands in sharp contrast to those previous pieces in terms of both quality and accuracy. Instead of investigating the science of Long COVID and seeking to help readers understand the possible origins and nature of the condition, Mr. Wise seems to simply promote his own views of the illness. Time and again, he reinforces the myth that Long COVID is a psychiatric disorder treatable with exercise and therapy. He presents a biased view of the state of the science on Long COVID and ME/CFS that is not supported by the evidence, as many journalists and experts have already pointed out. (See Putrino, Davenport, O’Rourke, Tufecki, #MEAction, Tuller)

Throughout the article, Mr. Wise used selective quotation, vague or inaccurate descriptions, incomplete or misleading statements, and biased sources to convince readers of his conclusion that Long COVID is merely “the latest manifestation of an endemic psychiatric condition.” I wish to draw your attention to three specific instances where Mr. Wise misused source material in support of his argument.

1.Mr. Wise grossly mischaracterized the finding of a Harvard University study into the relationship between psychological distress and the risk of developing Long COVID.

Building on previous studies suggesting that mental distress can be associated with longer and more severe respiratory infections, the Harvard researchers sought to examine associations between psychological distress and Long COVID. They surveyed participants for self-reported psychological distress at the beginning of the study, and then monitored them for over a year to determine how many reported having COVID and/or post-COVID symptoms. Analysis of the data showed that people who reported pre-infection symptoms of depression, anxiety, worry about COVID, loneliness and perceived stress were more likely to report Long COVID symptoms, and those with high levels of two or more types of distress were at nearly 50% greater risk of Long COVID symptoms.

Mr. Wise reported this factual finding of the paper, but he then remarked that some patients might reject idea that Long COVID is a psychiatric condition, implying that the paper’s results prove that this is the case. Indeed, his interpretation of this research is so wrong that it is almost as if he read the abstract but not the full text of the paper.

Most perplexing is Mr. Wise’s failure to mention that the study authors stated explicitly that Long COVID is not a psychiatric condition. The authors wrote, “Our results should not be misinterpreted as supporting a hypothesis that post-COVID-19 conditions are psychosomatic.” More than 40% of participants with Long COVID reported no pre-infection emotional distress. Symptoms of Long COVID differ substantially from symptoms of mental illness, and the correlation between pre-infection distress and Long COVID remained even when people reporting only psychiatric, cognitive, or neurological symptoms were excluded from the analysis.

Notably, the authors cite several papers that found, “more than 50% of patients with post-COVID-19 conditions report relapses triggered by physical activity. In contrast, physical activity is protective against relapse of mental illness.” This acknowledgement that patients did not improve with exercise but, in fact, worsened their condition is especially relevant given Mr. Wise’s contention that exercise is an effective treatment for the disease. Finally, the authors identified multiple biological factors that could explain why pre-infection emotional distress might increase the risk of developing Long COVID. They cite, for example, the link between distress and chronic systemic inflammation.

Ultimately, Mr. Wise took research that adds an important if nuanced dimension to our understanding of risk factors for Long COVID and distorted the finding to match his own conclusion that Long COVID is a psychiatric condition. The truth is that the authors of the study expressly rejected that conclusion in the discussion section of the paper. Mr. Wise fails to acknowledge any of that in his article, and as a result misleads the reader.

2.Mr. Wise selectively edited a quote from a paper in SN Comprehensive Clinical Medicine to overstate the authors’ conclusion.

For this study, doctors at the Mayo Clinic Florida reviewed and summarized published research on the characteristics and clinical management of Long COVID. The authors did not attempt a meta-analysis to quantitatively analyze the pooled data from the included papers. Rather, they synthesized and summarized the “narrative evidence” from 117 articles covering dozens of treatments across fifteen broad categories of symptoms and signs, including respiratory, cardiovascular, and neurologic complications.

Mr. Wise cited this paper as support for the use of CBT and exercise therapy as treatments at Long COVID clinics, writing, “This approach has been endorsed by researchers: Mayo Clinic researchers published a study in April that recommends treating chronic fatigue patients with ‘Cognitive Behavioral Therapy (CBT)…graded exercise, mindfulness, and sleep hygiene.’” However, the discussion of treating chronic fatigue is limited to four sentences in the Specialty Care section of the paper and one bullet point in Table 1. Mr. Wise edited the text from Table 1 to make it sound like a clear recommendation. A review of the full quote, however, shows that this is not the case. Here is the full quote with the deleted material italicized:

“Chronic fatigue: There is potential role for Cognitive Behavioral Therapy (CBT) and Health & Wellness Coaching (HWC) programs focused nutritional status, graded exercise, mindfulness, and sleep hygiene, with the goal of improved quality of life.”

This study did not “endorse” CBT and graded exercise as a treatment for Long COVID; it merely suggests a “potential role” for CBT and Health & Wellness coaching to “improve quality of life.” What’s more, Mr. Wise did not acknowledge, as the study authors did in the body of the paper, that, “There is a paucity of information on the management of patients with fatigue, myalgias, and exercise intolerance.”

Because of how Mr. Wise selectively edited that quote and failed to accurately describe the full context of the study, readers are led to the erroneous conclusion that the paper firmly established CBT and/or exercise as effective treatments for Long COVID. This false narrative can do real harm to people with Long COVID because, as the previous paper noted, the majority of them experience relapse after physical activity.

3.Finally, Mr. Wise unfairly and inaccurately portrayed the ME/CFS patient community as spiteful and extremist.

Throughout his article, Mr. Wise quoted blogs and blog comments without naming, citing, or linking to the comments themselves. As I reviewed and fact-checked his assertions, I was surprised to discover that one of those comments had been cherry-picked from my website (without attribution). Indeed, Mr. Wise omitted the context that contradicts the point he was making—that ME/CFS advocates are extremists who have undue influence on medical guidelines. 

To help paint this picture of advocates consumed by vitriol, Mr. Wise devoted an entire paragraph to the conflict between the ME/CFS community and Dr. William Reeves from the Centers for Disease Control, even though that conflict ended with Dr. Reeves’ death more than ten years ago. This section of Mr. Wise’s article jumps around in time from 2015 to 2021, then back to 2012 for the Reeves discussion, before going forward again to 2013-2015, which must be confusing to readers not already familiar with the history. After stating that patients were “enraged” by Dr. Reeves’ claim that people with ME/CFS were mostly suffering from personality disorders, Mr. Wise wrote that Dr. Reeves’ death in 2012 “did little to assuage the community’s enmity.” He then quoted “one blog commenter” in support of that statement. In fact, the quote came from a comment someone posted on a blog post I wrote when Dr. Reeves died, but Mr. Wise took it out of context and misrepresented it as indicative of the opinion of the entire community.

When Dr. Reeves passed away, I wrote about some of his history with ME/CFS and my own impression from meeting him in person in 2006. I concluded with this statement: “And in the end, he was a man and not a caricature. He has often been viewed as disdainful of the suffering of people with CFS; we should not make the same mistake and be disdainful of the pain his family and friends must feel at his passing.” But obviously, my statement doesn’t match the impression Mr. Wise is trying to create, so he didn’t quote me. Instead, he presented as representative of the whole ME/CFS community a single comment posted on the blog by someone who “can not bring myself to have one ounce of any sympathy” because of all the suffering caused by Dr. Reeves’ influence on ME/CFS research.

Mr. Wise advances the idea that the community hated Dr. Reeves because that would support his portrait of advocates as self-absorbed extremists. He presented without context a single comment made on a blog post ten years ago, as if it reflected the views of millions of people in the ME/CFS community. It does not. There was disagreement, expressed on my blog and in the community as a whole, about the legacy of Dr. Reeves and how we should move forward. This is always the case in a community as large and diverse as people affected by ME/CFS.

Unfortunately, the complexity and nuance of the community does not appear to interest Mr. Wise. He presented only material that supports his view that advocates are extremists, and the misleading and selective way Mr. Wise quoted from my blog is just one example.

To be honest, I am surprised that the New York Magazine Intelligencer published this article in its current state. It reads more like a hit piece than journalism. I do not speculate as to Mr. Wise’s intentions. I can only say that this article is biased, misleading, and inflammatory. Mr. Wise misrepresented the state of the science on both ME/CFS and Long COVID, omitting all the evidence that contradicts his views. By publishing it, you have contributed to the misinformation about these diseases, and many people face potential harm as a result.

I understand that calls for corrections and even a retraction have been sent your way, and it is indeed important to correct the record. Beyond that, however, it’s clear that the issues of Long COVID and chronic illness are a growing concern for Americans, one that New York Magazine could play a leading role in addressing. As such, I would like to propose writing an article for your publication that would contribute to the public’s understanding of Long COVID, ME/CFS and other poorly understood chronic disease. If you are interested, I would be happy to share a summary of points I would cover.

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How to Avoid Covid

Posted on October 9, 2022 by Jennie Spotila

For the first time in three weeks, I live in a Covid-free house.

Day 0: My husband was the first to get sick. He woke up with severe congestion and a headache, but tested negative for Covid on an antigen test. In an abundance of caution, I put on an N95 and he began isolating in our bedroom. Two relatives staying with us chose not to mask. I set up a table in the hallway so that I could deliver meals and medication to him contact-free. We all expected him to test negative the next day and then he would be able to rejoin us.

The next morning he had a fever and tested positive.

Day 1: He called his doctor, who prescribed Paxlovid. My relatives masked up, and I pulled out the supplies I had accumulated for this very situation–hand sanitizer, latex gloves, bleach wipes, over-the-counter decongestants, cough drops, surgical masks to put over my N95, thermometers, a pulse oximeter–and staged them around the house. He started the Paxlovid, but his fever kept going up. That evening, it got to 103 degrees and I started packing a bag for the emergency room. Several hours later, the fever began to go down.

Day 2: I was certain that I would get sick next. In the meantime, I carried meals upstairs and brought dirty dishes down. My husband felt ghastly–headache, fever, congestion, coughing, sore throat, brain fog, and intense fatigue. At least four times a day, he texted me his vitals (temperature, oxygen saturation, blood pressure, heart rate) and I recorded them on a log sheet. I worried about his temperature and his saturation rate. A low sat rate is among the problems that send many people to the hospital with Covid.

Where did he get it? My husband and I have had our Covid vaccines and two boosters. We were holding off on getting the bivalent booster until closer to the holidays when we are likely to be in more high-risk environments. We have worn masks in public since April 2020, and socially distanced to an extreme until recently. Our best guess is that he caught Covid at an indoor concert we attended three days before his symptoms began. I wore an N95 for the entire event. He wore a triple layer cloth mask because it seemed to give him a tighter seal and prevented his glasses from fogging.

Day 4: Both of the relatives who had been staying with us tested positive. One was mildly congested, and the other was asymptomatic. We lived with the windows open in every room, and fans and air filters running on both floors, to keep fresh air circulating through the house. I wore my N95 around the clock, except when I was eating outside or using my CPAP machine while sleeping.

Day 5: My husband finished Paxlovid and felt much better. He was still coughing, but otherwise felt ok. However, he tested positive again. Yes, CDC guidance said he could end isolation because he had no fever and his symptoms were resolving. CDC does not require people to test to end isolation. But given that I am very high-risk and was still testing negative, we decided to err on the side of caution. My husband stayed in the bedroom. I continued to sleep on the couch. We decided to wait until he had two sequential negative tests before letting him out.

Day 6: For most of our marriage, my husband has been my caregiver. Seven years ago, he had a disabling stroke and I became a caregiver too. Over time, we reconfigured our relationship to take care of each other in the ways we each need. Now with him confined to our room, I was back in crisis mode like when he first had the stroke–taking care of him and everything in the house. My body went through the motions, doing what was necessary, while my brain stopped participating. Instead of reading or listening to podcasts or watching tv, I did a lot of sitting and staring into space, worrying about how we would cope when I inevitably tested positive too.

Day 10: For several days, my husband was feeling better. The most annoying thing was a spell of feverishness and slightly elevated temperature every afternoon. But on Day 10, Covid seemed to come roaring back. His headache, congestion, brain fog, and fatigue were almost as bad as when he first got sick, with some nausea added in for good measure. The rebound was upon him.

Rebound: I know people say that it’s Paxlovid rebound, as if the drugs cause the virus to resurge. It turns out that many Covid cases have a rebound, even without Paxlovid. The rebound may be caused by a robust immune response, not an increase in virus. CDC guidance says that anyone with rebound needs to isolate for another five days, whether they took Paxlovid or not, so it was just as well that we kept him isolated.

Day 15: His CDC-recommended additional five days of isolation ended, but he continued to test positive. At this point, he felt much better, with only lingering congestion and slight headache. And he was bored. He had tried to keep himself occupied with different interests each day, but as everyone with ME knows, being confined to a single room for weeks is very difficult to take.

Ending Isolation: When is it truly safe for someone to come out of isolation? According to Dr. Daniel Griffin of This Week in Virology, transmission has not been seen after Day 10 except in severely immune-compromised patients. The rapid antigen test is not a reliable measure of infectivity. I guess my husband could have ended isolation after Day 5 or 10 (or 15), depending on which part of CDC guidance we chose to follow, but we don’t regret waiting longer.

Day 19: At long last, my husband tested negative twice (on two tests 48 hours apart) and came out of isolation! And I tested negative throughout the entire time–the only person in the house not to catch Covid.

So how did I avoid Covid? Here is what I think protected me.

  1. I began wearing an N95 as soon as he showed symptoms, and I kept wearing it 24/7 for three weeks. Putting on the N95 immediately was key, because the other people in the house did not mask that first day and they both caught Covid.
  2. He isolated at the first symptoms, despite a negative test, and stayed isolated for three weeks.
  3. We used a table in the hallways to pass items to each other, and we stood at least 10 feet apart when speaking to each other (both of us double masked).
  4. I wore gloves when I handled dishes and trash, and I washed and sanitized my hands constantly.
  5. We kept windows open throughout the house except when it rained. We already had air filters on each floor of the house, and my husband kept a fan running in a bedroom window to increase air circulation.

Minimizing Covid severity. We are vaccinated and boosted, which is the most important thing you can do to prevent severe Covid disease. My husband’s doctor prescribed Paxlovid as soon as he tested positive. Tracking my husband’s vital signs helped us monitor his condition, and would have told us if he was getting worse (like if his sat rate dropped).

Good fortune. This experience was awful, but it was mitigated by many things. We could afford to stockpile the supplies that got us through these three weeks: rapid antigen tests, masks, gloves, hand sanitizer, over-the-counter medications, thermometers, a pulse oximeter, and a freezer full of food. We live in a house that is big enough for him to comfortably isolate in our bedroom and have his own bathroom, and I could stay in my own space on the first floor. Multiple friends and relatives came to our rescue, practically and emotionally. We knew enough about the science that we reached out for Paxlovid, and that drug is free (for now). My husband’s doctor was easily accessible whenever we had questions or concerns. We’re both disabled, so we weren’t being pressured to come back to work too soon and we know how to cope with isolation.

It’s also true that we could have done everything right and I could still have caught Covid. I know I probably will, at some point.

All we can do is prepare as best as we can. Get vaccinated and boosted. Wear an N95 (seriously, where one everywhere you go). If you can afford it, purchase supplies that will help get you through illness and isolation. Know if you are eligible for Covid medications (Paxlovid, Evusheld, remdesivir, molnupiravir) and make a plan with your doctor in case you test positive.

Avoiding Covid is possible, but it is not guaranteed. In the current “the pandemic is over” environment, it’s up to us to protect ourselves and each other. Winter is coming.

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In The World

Posted on August 23, 2022 by Jennie Spotila

I have spent more time in public in the last month than I have in two-and-a-half years. We were having some work done on the house, and I could not stay there in the midst of the noise, dust, and chemical smells. So, I relocated to a hotel in a nearby community for a few days, but I may as well have been on a different planet.

For the entirety of the pandemic, I have taken safety precautions very seriously. I am at high risk for severe complications if I catch COVID-19. My doctor said that my biggest risk is a worsening of my ME and disability. Friends, I am disabled enough. I’m willing to make a lot of sacrifices to avoid losing even more functionality.

Now that the vast majority of people have decided to live as if the pandemic is over, I knew that very few people in this nearby community would be masked. But I was not really prepared for what I saw and how I felt during my stay at the hotel.

No one in the hotel–including hotel staff–wore masks. No one on the street wore masks. No one in restaurants or coffee shops wore masks, including staff. All the restaurants were busy. Some had outdoor seating, but we were in a heat wave so not many of those tables were occupied. Inside the restaurants and coffee shops, there was no social distancing. In other words, it looked very much like the summer of 2019.

And here I was, wearing an N95 every single time I left my room. I had packed my own breakfast and lunch for each day, but I had to go out to retrieve dinner each night. When I walked into a restaurant to pick up my takeout order, the twenty-something hosts looked at me with a mixture of surprise, bemusement, and pity.

I’ve lived with ME for twenty-eight years, and I’ve gotten used to looking different. On good days, I walk with a cane, but other times I need a wheelchair. I’m used to pitying glances and inappropriate questions. But being the only masked person in an entire community in the midst of this ongoing pandemic made me feel extremely conspicuous and vulnerable. I felt unvoiced social pressure to blend in, to take off the mask, to relax.

I would love to ditch my masks, put on some lipstick, and go back to normal (which admittedly still doesn’t look like everyone else’s normal). To blissfully sit in a coffee shop for an hour. To enjoy a meal without checking how close together the tables are. My life was pretty sedate and simple before the pandemic, but during the pandemic it has been downright monastic. It would be a luxury to return to how I navigated the world in 2019.

Will this ever be possible? Will I build up enough immunity with enough booster shots so that eventually, catching COVID will be like catching a cold? Or will I have to wait until there are better treatments, and (hopefully) a way to prevent long COVID and the other long-term risks of COVID?

As I wrote for the Philadelphia Inquirer on August 22nd, I believe there is a smarter way to move forward collectively, and that it is to approach COVID as a community. After all, we take care of each other in all sorts of ways during rough weather conditions. Why can’t we do the same with COVID?

Maybe a day will come when I decide to give up on masks and take my chances. But not yet. If saving my life means being the odd one out and enduring funny looks, so be it. My life is still worth it.

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A Million More, and Counting

Posted on May 12, 2022 by Jennie Spotila

Today is #MillionsMissing, a worldwide day of protest and awareness for the millions of people missing from their lives due to ME. We raise our voices on behalf of our own community, and also on behalf of our compatriots with Long COVID.

For six years, the ME community has joined together for #MillionsMissing to speak with a united voice–demanding health equity through research, treatment, and support. More than one million Americans have ME. #MEAction estimates that 75% of us are unable to work, and 25% of us are homebound or bedridden.

To this tally, we now add Long COVID. The US Government Accounting Office estimates that 23 million Americans have Long COVID, and one million of them are unable to work.

We are in the midst of a mass disabling event.

Yet this is not the end of the accounting. We cannot ignore that one million Americans have now died of COVID, leaving at least nine million people to grieve. More than 200,000 children have lost a caregiver to COVID.

When I write these numbers out like this, it feels clinical and unreal. Abstract numbers on a spreadsheet. But if I think about what ME has done to my life and to my family, and then try to multiply it by one million, and then add another million or more–when I think about suffering on that scale, I feel despair.

In COVID, I see ME writ large–both the suffering and the turning away. Everything the ME community has endured is now the Long COVID experience. The disinterest, callousness, and denial that we have received from institutions and people in power has gone full scale. Our public health system failed to heed our warnings about Long COVID. Our country has decided we no longer need to protect one another from COVID, and the suffering is compounded and then compounded again.

Will there be a reckoning? Can we ever come to grips with what we have done to each other–to our healthcare workers, our children, our marginalized communities? Even if we can somehow count the cost, could we ever pay that bill?

It is so easy to witness the suffering and our failures, and stop there. Grief is heavy, and it is tempting to sit still with its weight. Yet people with ME have always fought. We raised the alarm about post-infection illness from the first days of the pandemic, and we have extended our knowledge and support to the Long COVID community.

We are–all of us–connected.

The ME community has sought justice and health equity for decades. We have achieved so much, but we are still far from our goals. A drippy faucet gets little attention, but a flood requires a full response. One million people with ME has not been enough, but when we raise our voices with millions of long haulers, maybe now we will be.

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Ten Years of Unreal Time

Posted on February 12, 2022 by Jennie Spotila

Ten years ago today, I tapped the internet microphone and published the very first post on this blog, then known as Occupy CFS. My intention was to step into the light, to bring attention to the disease by writing openly about my own experiences, as well as the politics of our movement. Hundreds of posts later, I can say that I have done my utmost to achieve that goal.

There is something odd about the passage of so much time, though. Since the pandemic began, people have joked that time has no real meaning any more, but I have felt that way for more than a decade. I have few exterior milestones to mark time–no job changes or growing children. Where I live, late fall through early spring looks exactly the same when viewed through a window. Sometimes, I can’t remember what month it is.

Ten years feels like an interminable and unchanging tunnel of days, each one like the one before and the one after. Living housebound with chronic illness is a grind, and it has worn me down, much the way that centuries of footsteps wear down the stone steps of a cathedral. Yet so much has happened in the last ten years that it also feels like the time has passed in a few blinks. I’m always a tiny bit surprised when I remember my age–how did that happen?

If I had made predictions ten years ago, I would have said that I would still be sick today and that ME would still be grossly under-recognized and underfunded. Those outcomes were easy to anticipate and have proven true. Other predictions would have been wildly off base. Ten years ago, I had no intention of writing a memoir. I never could have guessed that my husband would become disabled, too, nor the ways that grief and loss would change my life.

I have always been a self-starting, goal-oriented person. I don’t wait to see what happens; I chase desired outcomes. This blog and my advocacy are a manifestation of my drive and determination, and I have pursued both at great personal cost. What’s odd about where I am now is that I don’t have much of a plan. I’m working as much as possible on my book, but I don’t know if it will ever see the light of day or how I can make that happen. I can’t begin to guess what might happen in my life or in ME advocacy over the next ten years.

Pierre Teilhard de Chardin wrote a beautiful poem called Patient Trust that captures this feeling I have of being in between:

We are quite naturally impatient in everything
to reach the end without delay.
We should like to skip the intermediate stages.
We are impatient of being on the way to something
unknown, something new.
And yet it is the law of all progress
that it is made by passing through
some stages of instability–
and that it may take a very long time.

ME advocacy has been irrevocably changed by the pandemic and Long COVID. Perhaps we are closer to treatments, or at least greater research investment. It is too early to say. And perhaps I will finish my book. Perhaps you will read it. It is too early to say. Progress takes time.

I didn’t start this blog with an end goal or timeline in mind. I just wanted to speak loud enough to be heard so that I could make a contribution to our fight, and I hope I have succeeded. As much as we have accomplished in the last ten years, there is more work to do. I’m here for it, for as long as it takes–even if I’m not quite sure what that will look like.

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Pandemic Low

Posted on January 18, 2022 by Jennie Spotila

I hit a new pandemic low last week. CDC Director Walensky’s comments about the “encouraging” news that most vaccinated people dying of COVID had multiple comorbidities was the catalyst (see my op ed in the Philadelphia Inquirer), but my despair has been deepening for some time.

Hospitals are breaking. Schools can’t function. Services and business are disrupted. There are shortages in stores again. People we know are getting sick. COVID is blazing through, spreading more wildly than ever before. In many ways, this looks like the worst case scenario that we were all so frightened of in March 2020.

Except most people aren’t scared anymore. Everyone seems to be shrugging their shoulders and giving up hope that we can control this pandemic. “We’ll all get it,” they say, and risk death and disability with casual disregard for the consequences. Our callous treatment of the healthcare workers who must still nurse us through those consequences is appalling. Vaccines are keeping many people out of the hospital and alive, but there’s no comfort in saying that a disaster could be worse.

One of the root causes of our current situation is the individualizing of the pandemic. Mask wearing, social distancing, vaccination–there are no mandates for the general population anymore, just under certain circumstances. We have relegated public health measures to individual choice, opening the door to misinformation and conspiracy theories, and silently giving people permission to be selfish or myopic in making those choices.

The belief that vaccinated people would be fine drove the early end of CDC’s masking recommendations last May. Not only was this overconfidence, but it placed emphasis on the individual’s choice to vaccinate over and above masking’s role in reducing the spread of infection. Policymakers lost sight of the benefit of layering protection. By making it about individual choice, we set aside collective and community-level thinking.

You might think your vaccination or mask choice is just about you and your family, but it’s not. It’s about every single person you come into contact with every single day. If you are infected (which is possible even if you are vaccinated) then you could be passing the infection to anyone in your path (although wearing a mask would lower that risk). Other people could be vaccinated and masked and still catch the virus from you, particularly if you are not taking steps to prevent passing it along.

How many of the people you come into contact with are vulnerable or high risk in some way? You can’t look at a person and know if they have diabetes or cancer or autoimmune disease. Your coworker might have high blood pressure, and you would never know. What about the family members of people you interact with? It’s impossible for you to know that the teenager you sat next to on the bus lives with elderly grandparents, or that the clerk at the convenience store has a child with cystic fibrosis. Yet your behavior and choices place all of them at risk.

No one is safe until everyone is safe. That’s not a hyperbolic slogan. It’s science. But we’re not thinking about it that way. Whatever collective motivation we had to flatten the curve two years ago is gone now. People have decided they’re “done” with the pandemic–as if what we want has anything at all to do with it. Our government and public health apparatus has completely failed to remind people that public health requires action from everyone.

Public health measures, which should be about science, have become politicized hot potatoes. We’re fighting about whether to mandate masks or vaccines, instead of coming together to fight the virus. COVID is never going away. We do have to find ways to live with it. What I don’t understand is why living with it can’t include minimizing disease and transmission. Why can’t we take steps to protect one another from the worst impacts of COVID? We live together in a community, with a social contract. Why doesn’t that social contract mean that we do what is necessary to limit the damage of this historic pandemic?

I don’t want division, but we are divided. Some of the people I love are not vaccinated. I love them just as much, and I don’t want to be separated from them. Yet in order to protect my own life, I cannot spend time indoors with these dear ones. Their choice to forego vaccination has taken my choice to interact with them. They have made that choice for me.

I want this pandemic to be over. I want to leave my house again without wondering how many infected people are crossing my path. I want to interact with my friends and community again. But America has decided that the individual choice to forego precautions is more valuable than my safety. I don’t understand how that calculation balances out.

I know I’m not alone in wearing despair that cloaks my rage. Read what people are saying, like Amil Niazi, a parent of children under five, who writes, “I’m angry, sad, frustrated, obliterated, abandoned, but more than that and worst of all, I feel nothing.” Read these powerful words from disability justice advocate Mia Mingus:

You are not entitled to our deaths. You are not entitled to the deaths of our loved ones in the name of capital, privilege and “normal.” You are not entitled to our silence about our pain and suffering and the wet tar grief that envelops us. You are not entitled to our fear and terror at the worsening conditions and chaos of this pandemic, wondering if we will ever be able to safely leave our homes again.

The effects of this pandemic will stretch years into the future, and many books will be written about it. There will be many reckonings at all levels of public life, and continued grief in individual lives. But one thing I don’t think most people realize is that there will be a reckoning over whose lives and choices were valued, and whose lives and choices were tossed aside.

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My Favorite Books of 2021

Posted on December 31, 2021 by Jennie Spotila

I have always loved books, and now that I am writing one myself, I love them even more. I read for entertainment and education, and I pick them apart to see what makes them work (or not). There is nothing like the feeling of falling through the page into the world of the story. And make no mistake, all books are about Story in some way. Even an instructional manual creates a story in your mind. For me, the best books immerse me in Story and make me feel something, especially strength (either my own or the author/character’s). Here are my favorite books that I read in 2021.

Memoir

A Still Life by Josie George: I loved this book so much I reviewed it here on the blog. Josie’s memoir of her life with chronic illness is gorgeously written, but it is Josie’s strength that takes my breath away. She has created tremendous beauty and meaning in her life, working within her body’s limitations, and tells her story with intention and grace. I cannot recommend this book highly enough.

When Breath Becomes Air by Paul Kalanithi: This memoir was a Pulitzer finalist in 2016 and makes most “Best Memoir” lists. Dr. Kalanithi wrote this book while he was in treatment for stage IV lung cancer, and he died before he could finish it. It is a memoir of a life interrupted by catastrophic illness, and of enduring love. I sobbed through the last few chapters.

No Cure for Being Human by Kate Bowler: This is Bowler’s second memoir of facing the prospect of death from stage IV colon cancer before age 40. Like her first book, Everything Happens for a Reason: And Other Lies I’ve Loved, Bowler combines stark honesty and witty humor to carry the reader through her experiences. Her tremendous love, commitment to her work, and Christian faith form the bedrock of her life, and her strength is inspirational in all the best ways. Bonus: Bowler also has a podcast, Everything Happens, in which she interviews fascinating people like Stanley Tucci, Gretchen Rubin, and Jenny Lawson.

Fiction

The Last Graduate by Naomi Novik: This is book two from the Scholomance Trilogy, and every bit as good as the first book. It’s got teenagers with magical talents, and an infinite variety of monsters trying to eat them, at a school on the boundaries of reality. Think Harry Potter meets the Hunger Games. Suspenseful, clever, and funny.

A Spindle Splintered by Alix E. Harrow: I will read anything by Harrow, and The Ten Thousand Doors of January remains one of my favorite books of all time. A Spindle Splintered is a feminist reimagining of the legend of Sleeping Beauty, with Harrow’s characteristic wit. My only complaint is that it is too short.

Rivers of London series by Ben Aaronovitch: There are eight books in this series so far, and the ninth is due next spring. A constable in London learns that not only is magic real and that he has magical talent, but that there is a Metropolitan Police unit dedicated to handling “weird bollocks.” These novels are fun, light mysteries with a sense of humor.

The Book of Accidents by Chuck Wendig: I read this book despite its classification as Horror because I’m a fan of Chuck Wendig’s other work. I haven’t read much horror since my teens, and that was mostly Stephen King. But this book checked a lot of boxes for me: rural Pennsylvania; owls; alternate realities; strong kids; powerful family bonds; mystery. It is gripping, creepy, and it really sticks the landing.

Razorblade Tears by S.A. Cosby: What I love most about this book is the seamless way Cosby combines the thriller plot with an examination of social issues. Many authors don’t do this well, but Cosby is a master. Two fathers, one white and one black, seek vigilante justice for their murdered sons, even though neither of them had accepted their sons’ marriage. The plot is fast and tense, and be warned–it is violent and bloody. Throughout, the two fathers have to confront racism and homophobia in themselves and others. It is an unexpectedly moving thriller.

My Heart Is A Chainsaw by Stephen Graham Jones: Let me state up-front that this book is gory and violent, and it is also one of the best books I read this year. I’ve been a fan of Graham Jones since reading The Only Good Indians, one of my favorites from last year. In Chainsaw, a teenage girl copes with her problems through her obsession with slasher films. She becomes convinced that a serial killer is active in her small town, but no one will listen to her. Is she a reliable narrator or a troubled teen? Horror films and novels frequently glorify violence for shock value, but Chainsaw interrogates and transcends the tropes of slasher films to tell the story of this strong female protagonist in a gripping narrative that I could not put down.

Reading Tech

I also want to mention a few things that made my reading life more enjoyable this year:

  • When I am physically unable to hold a book or e-reader because I’m crashed or in too much pain, the Book Seat holds it for me.
  • The Reading Glasses podcast is an entertaining discussion about reading and the reading life, and I found some great books this way.
  • I stan for libraries, and during the pandemic I have borrowed more e-books to avoid physically going to the library. Check if your library offers e-books through the Libby app or some other way.
  • And speaking of libraries, did you know that you can get library cards for some major libraries even if you don’t live in the library’s location? Any resident of Pennsylvania can get a library card from the Philadelphia Free Library, giving you access to their e-book collection and online resources. I know, right? Check the major libraries in your state for their policies.
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Community Gratitude

Posted on November 25, 2021 by Jennie Spotila

Talking about gratitude on Thanksgiving Day (in the U.S.) is cliche, I know. But I have to chime in because this year, I am feeling overwhelming gratitude for my communities.

I have been blessed in my family and friends for my entire life. My family is wacky in its own unique way, but it is a soft and safe place to land, and my in-laws have always welcomed me as one of their own. My husband is everything.

Friends have filled my life. A. has known me the longest, since we were neighbors in our freshman dorm at college. K. and I have been as close as sisters since the day she sat down and introduced herself before our Criminal Law class. And T.–well, I have only spent one day with her face to face but she is as dear to me as any member of my family.

Another friend from my pre-ME life is T., who was in the law firm trenches with me. After I got sick, I thought I would not be able to make new friends ever again, but I was 100% wrong. There is M., who I cold-called when fundraising and we ended up talking for hours. And J., who is practically my twin. We have only met in person once, but she is family. D. reached out to me on the suggestion of a third person, and became a fixture in my life. There are still more, and I don’t want to leave anyone out. I am surrounded by women who I trust with my life. I don’t have one best friend; I have many.

The ME community is another blessing. This past year in particular the ME community has shown up for each other and for people with Long Covid. I hesitate to list individuals, but there are two people I need to mention. Jaime Selzer is killing it, along with the entire #MEAction leadership team. Mina Jenkins is a cornerstone of advocacy, calmly speaking truth to power for longer than I have been sick. The Long Covid community has been a true ally to people with ME, promoting science in our field and reaching back to include us on their platform. I am deeply impressed with and grateful for the work they’ve done.

I am grateful for another community that has become a powerful presence in my life in the last year. The Autonomous Creative Collective has transformed my writing practice. To the extent I have made progress on my book, it is in large part due to what I am learning there. I am especially grateful to my small co-working group. I didn’t think co-working would mesh very well with my limitations, but this fabulous group of people have supported and encouraged me in ways I did not know I needed.

Living with ME is lonely. The pandemic shutdowns that freaked everyone out were just mini versions of what we deal with all the time. My life has been enriched by all of my people. I am happy–despite being sick, housebound, and disabled–and that happiness is largely thanks to all the people who love me. I am forever, deeply grateful that you are in my life.

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Do We Ever Stop Counting?

Posted on October 6, 2021 by Jennie Spotila

I have been sick for twenty-seven years, today.

My sickaversary gives rise to different feelings every year. Burdened. Triumphant. Heartsick. Contented.

Marking the day, here with you or on my own, feels important. October 6th is the day my life changed forever. It is as significant to me as the day I met my husband, as the day my mother died. This day was a turning point in my life.

So many others have their own sickaversaries, and my heart is with them too. Friends with ME who have been sick longer than 27 years. Those with Long COVID who have passed their first sickaversary, or who see it coming at them fast. We feel trapped in amber, always looking for a way out.

The anniversary effect or anniversary reaction is a recognized aspect of trauma. Dates associated with losing a loved one, experiencing a natural disaster, or any other traumatic event can have an impact on us even many years later. Gentle self-care and support from others can help us get through it. There’s no official duration of the anniversary effect, though. It might hit us every year forever, or just a couple years, or sporadically over time. Grief is a wave, and sometimes we just have to surf it.

Yet, it is a hard and heavy thing, carrying a day like this around. When I woke up yesterday, I found myself wondering if I could put it down. Could I stop counting?

When does the Day I Got Sick become just another day? Is there a point where my Sick Life becomes just . . . my life?

Maybe that point exists for me, but it is not today. I was twenty-six years old on the day I got sick, twenty-seven years ago. I have now spent more than half my life with ME. With each passing year, the healthy portion of my life will shrink further and further away.

Maybe there is a day when I will stop counting. But not today. Not today.

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The Coding Problem: Why No American Can Develop ME/CFS, Including After COVID

Posted on September 16, 2021 by Jennie Spotila

Guest post by Mary Dimmock

Please sign this petition to fix the coding problem making Americans with ME/CFS invisible.

If a tree falls in the forest, does it make a sound? And if an American develops ME/CFS, would the US disease mortality and morbidity tracking systems know about it? Philosophers make debate the first question but the answer to the second one is decidedly NO.

As far as US disease tracking systems are concerned, the 1 – 2.5 million Americans with ME/CFS are invisible. You can’t die of ME/CFS in the US. You won’t experience any morbidity (suffering, impairment) from ME/CFS. And you certainly won’t develop ME/CFS following an acute COVID-19 infection, in spite of the remarkable similarities noted by many researchers, including NIH’s Dr. Anthony Fauci.

That’s because the US ICD codes used to track diseases do not include a code for the term ME/CFS, the name adopted by US federal agencies and in clinical guidance. At the same time, the term “chronic fatigue syndrome,” the term most often used by US doctors, has been assigned the same ICD code as the symptom of “chronic fatigue, unspecified.”

As a result, virtually all cases of ME/CFS are effectively lost in a bucket of unspecified chronic fatigue due to any cause.

These ICD codes, short for the International Classification of Diseases, are maintained by the World Health Organization (WHO) as a globally agreed classification system to support tracking of diseases across countries. ICD codes are used to track disease mortality and morbidity and to assess disease burden and healthcare utilization and cost. In the US, they are used in insurance billing. They show up in electronic health records and are used to research issues such as the causes and long term impact of diseases. NIH and CDC have both announced extensive plans to use electronic health records to do exactly that kind of research into Long COVID.

But as CDC reported at a recent conference, ICD codes alone are not sufficient to find the cases of ME/CFS in these electronic health records. Doing that required an expensive and time consuming manual chart review. Such manual reviews are unlikely to be done in reporting on mortality and morbidity or in most research using electronic health records. This includes those planned Long COVID studies. The obvious impact on Americans with ME/CFS is huge.

How is this possible and why has it never been fixed?

In WHO’s current ICD, the ICD-10, ME and CFS are classified in the neurological chapter. The WHO also allows countries to create their own versions as long as they follow WHO standards. When the US implemented its version, the ICD-10-CM, in 2015, it reclassified CFS from the neurological chapter to the Symptoms and Signs chapter and gave it the same code as the symptom of “chronic fatigue, unspecified.” This is not aligned with the WHO classification and no other country has done this, making it a uniquely US problem.

Proposals to fix this were submitted in 2011, 2012, and 2018 to CDC’s National Center for Health Statistics (NCHS), the US group that manages the ICD-10-CM. But NCHS rejected each of those proposals because of a lack of stakeholder consensus, including from patients and coding associations, on how to fix the problem. As a result, cases of ME/CFS are still coded as “chronic fatigue, unspecified.”

This year, seven ME/CFS organizations* submitted a fourth proposal, asking for the most basic change to move this forward–to add the term ME/CFS to the ICD-10-CM and support both viral and nonviral triggers for the disease. NCHS then added additional coding changes, including some that were previously rejected.

This situation is such a gordian knot that no single set of recommendations can possibly address all stakeholder concerns. But the status quo is completely unacceptable because it leaves those with M<E/CFS invisible–not coded, not counted, not researched.

For the sake of the 1 – 2.5 million Americans who had ME/CFS before the pandemic and for the sake of those who could develop ME/CFS following COVID-19, we must find a way to resolve this problem. Continuing to lose track of people with ME/CFS in US medical records, tracking systems, and research is simply not an option.

Please sign this petition calling on the US to fix its ME/CFS coding problem. Background on the ICD and why this is important are available on the petition site.

Thanks to Dr. Robert K. Naviaux, University of California, San Diego (UCSD), CA for the idea for the title.

*The organizations submitting this proposal were: The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, #MEAction, Open Medicine Foundation, Solve M.E., Massachusetts ME/CFS & FM Association, the Minnesota ME/CFS Alliance, Pandora Org.

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