The Painful Lies About Long Covid
I made an attempt to reply to the atrocious hack piece by Alan Levinovitz’ online at Wired the day it came out on Monday, but everything hurt. I had my second (CT) scan as part of a prerequisite for my stage IV cancer treatment at UC Health in Denver. Laying on the hard scan bed after the weekend “did me in”—my pelvis, lower back, kidney-area ribs and shoulder all hurt too much. I took notes from the Apple News article on the sofa—extra strength Tylenol didn’t cut the pain, and it was too early to take my nighttime pain medication. Before I discuss the Wired piece, I think it’s important to understand my story as I’m one of the 20-30M Americans afflicted with Long Covid—my case goes back to international travel in the first quarter of the pandemic in 2020.
I thought the Jeff Wise (“Long Covid Comes Into the Light” in Slate Magazine) and Natalie Shure (“We Might Have Long Covid All Wrong,” in The New Republic) hack pieces telling us that Long Covid was fiction was behind us, but along came Allen and Wired Magazine.
Author’s note: Like Allen, I will anonymize or change some of the names and portions of this story to protect those involved.
I spent the better part of 2020 trying to figure out what was wrong with me after virtually racing for my Team Hoyt buddy Liam on March 15, 2020. I remember that date well as the world shut down that weekend. The race was cancelled and my wife (Mrs SBM,) and I went to Fort Collins for the weekend as we knew we’d be sequestered for weeks, or months. Fearing the unknown, we wiped down doorknobs and phones in our hotel room as the guidance was just starting to come out about the deadly virus called Covid-19.
 |
| The last race I ever ran. Virtual 13.1 for Liam Mar. 15, 2020 |
I virtually ran the 13.1 miles for Liam that day, we went out for dinner—I dressed in my kilt as it was also St. Patricks Day—we headed for our favorite bar in downtown FoCo but I walked in and out of the bar just like the Simpson’s meme where Grandpa Simpson walks in, hangs his hat, puts his hat back on, and walks out of the bar.
The next morning, I had a “crash” unlike anything I’d ever had; marathon hangovers were easier than this half. I knew then that the “garden variety virus” I’d been wrestling with for two months was something more serious.
Within two months, I couldn’t run a mile dispelling one of Allen’s myths that part of part of the Long Covid myth is deconditioning. Having raced for twenty years, I know about taking breaks after a big race and what deconditioning looks like. This was not deconditioning. This was “not a boat accident!” This was what would eventually be diagnosed as Long Covid.
I spent the better part of 2020 going to National Jewish Hospital in Denver performing every lung and heart test they had to understand my initial overnight dyspnea (shortness of breath) severe fatigue, chest madness, and violent leg “spasms.”
When traditional tests had no answers, Dr. Goldstein recommended I go to “Ketchup Clinic” in Minnesota (reminder that some names have been changed in this article.) I went through a battery of test over 72 hours and would return another three times looking for answers.
It was world class care, but I also encountered my first case of “world class gaslighting.” I sat down with one of their cardiologists and he proceeded to to tell me a story about one of his patients who had a urination issue (insert irony parallel three years later.) The patient wanted to go to the bathroom before sitting down with the doctor but doc said, he had a few questions first.
The gaslighting doctor talked to the patient for twenty minutes when he finally asked the patient, “I thought you had to go to the bathroom?” Befuddled, the patient said he guessed he didn’t need to go. The whole point of his bullshit story to me was that my difficulty breathing was “all in my head.”
The “Ketchup Clinic” for me was not a complete waste, Dr Van diagnosed me with Long Covid and helped document my case for eventual private insurance and Social Security Disability. He also said that they’ve seen this “movie before” in that post-acute illnesses (or viral persistence) have been around forever (even Long Covid Villain RFK Jr recognizes that in Lyme disease—see RFK Jr.’s commitment to Lyme just this week.)
The Wired piece does make some factual points; RECOVER spent $1B in observation studies and had little to show for it. There are no universally accepted tests or biomarkers nor treatments that exist for Long Covid.
He shares cases where patients are fully-recovered, and did quote Claire Every a patient who runs a Long Covid advocacy group in the UK, “it’s quite soul destroying as someone with severe long covid to be told that its either your trauma or your emotions, or your mental framing.”
Todd Davenport speaks to the labels associated with Long Covid in the article: “they get lazy and they get crazy,” but today retorted on X, “It’s always odd seeing your quotes used in service of a narrative but not supporting that narrative and totally out of context with the actual conversation that took place.”
The “un-Wired” hack piece had zero well-known Long Covid Experts quoted in the article. There was no Akiko, Putrino, Proal, Peluso, Resia,or Kell’s—but he did dismiss the later two experts hypothesis that the culprit was microclots.
Dershowitz did have lots of rage rage bait in the article;
“Rats can acquire a food aversion after eating food that makes them sick. Their gut reprograms their brain, and they will exhibit reflexive distaste for the food.”
“His wife, also a medical professional, became frantic. She thought Larson must be mentally ill—despite clear physical symptoms like inflammatory arthritis—and urged him to try antidepressants.”
“multiple studies have shown that self reports of crashes don’t line up with with researchers findings in controlled settings.”
I’m calling bullshit on that last quote, and redlining most of his article. Annie Leibovitz does interview some of his experts that fit his OpEd narrative including Becca Kennedy who was the former lead of a multistate Long Covid specialty group for Kaiser Permanente, Dr John Sarno (of Howard Stern fame,) and Howard Schubiner.
Been there, done that.
I tried running two months after that cataclysmic 13.1 mile virtual race on March 15, 2020. I couldn’t run a block. Under expert care, I also tried three different GET programs—the last one was halted by the physical therapist as she saw the decline and damage before her own eyes that the incremental treatment (stretches, increased walking on the treadmill, light weights) was doing to my body. Six months prior I was a fitness fiend—often winning age-group podiums in run races and triathlons in the competitive Denver/Boulder run market.
I tried CBT as my eventual disability insurance benefits saw somewhere in my doctors notes that I try CBT (cognitive behavioral therapy)—I would have been better off trying CBD (or THC.)
Desperate to find something that helped, I also went through a (very expensive) version of brain retraining from BrainCode in Highlands Ranch. The only result was being over $5K lighter in the wallet for that treatment alone. I’ve spent well over $100K in medical bills since 2020, and cost me a million in lost future wages as a former software sales executive. All for the glamour of the sofa in my family room.
Perhaps Levinovitz or Kennedy or Schubiner can explain how my mind conjured up vasculitis, micro clots, endothelial damage, mitochondria damage, small fiber neuropathy and an immune system that was so diminished, I required IVIG infusions in 2022.
Perhaps Annie Leibovitz can also explain how the brain study I flew to Boston for with Dr Michael VanElzakker from Harvard Mass General Brigham Women’s Hospital scanned my brain and other study participants and found brain damage—not fog, not imagined. Brain damage.
I won’t link to the 1000’s of papers that describe the biological—NOT psychological damage that Long Covid can do, but I’ll quote Michael Hoerger, PhD MSCR MBA from X who replied to to the Wired piece yesterday;
As a clinical health psychologist who has written >20 papers on COVID, I would emphasize 4 facts:
1) Long COVID is not a psychological diagnosis nor manifestation of a psychological condition
2) Billions of dollars need to be invested in biomedical treatments and preventives, and that money is not being invested because of wealthy short-term interests, which prop up various narratives, including in the media
3) Behavioral interventions can help with infection/reinfection prevention (e.g., COVI-CAN pilot) and stress/coping support (gaslighting/ostracism as huge issues), but these are not cures, and the same interventions are relevant to people with cancer, organ failure, immunocompromising conditions, etc.
4) Many psychological/behavioral “treatments” for Long COVID are directly harmful to patients and are indirectly harmful to society by incorrectly framing the issues
I would consider these issues obvious in summer 2020.
Articles like this should not be written in 2026, but it is a consequences of cultural evolution, or organizational selection by consequences. The organizations that write puff pieces propping up pseudoscience get the gold, while truth tellers do not. It would be useful to examine the organizational practices at WIRED that led to the incentive systems that allowed this piece to manifest.
Lastly, I should point out to Mr Mankiewicz that I’ve lost friends to Long Covid—people ARE DYING FROM THIS. Me personally? With my documented broken immune system (as documented by actual blood tests,) my oncologist said that it either caused or exacerbated my stage IV cancer.
But don’t take my word for it, take a REAL Long Covid expert’s word from it; Akiko Iwasaki from Yale on The Butterfly Pavilion Podcast (hosted by myself and my daughter trying to find light in darkness along my stage IV cancer journey.)
(There are) “A few different ways in which a virus like SARS-CoV2 can lead to cancer.”
Before all the hate mail, no, a Covid infection won’t give you cancer, but a single infection (and exponentially with multiple infections,) can lead to Long Covid. and Long Covid can lead make you immunocompromised.
In other words, Long Covid is no joke, not imagined, and I wouldn’t wish it on my worst enemies—even Mr. Fawn Liebowitz.
I’ll anxiously await the retraction from Wired.
Follow my Long Covid and cancer journey on The Butterfly Pavilion Podcast.
Comments
Post a Comment