Long COVID: America’s Newest Disability

The National Institutes for Health (NIH) is exceptionally keen on the study of “Long COVID.” The federal agency recently allocated over $1 billion in funding for this purpose, and NIH Director Francis Collins has made the claimed ailment a recurring subject of his press commentary over the last year. The Department of Health and Human Services similarly signaled that it intends to classify “Long COVID” as a recognized disability for government funding and classification purposes.

So what is Long COVID, and why is it drawing so much attention and funding out of the federal government? As with any respiratory illness, COVID-19 does appear to have long-term sufferers who do not follow the normal recovery pattern and continue to demonstrate symptoms for weeks or months after an infection. At the same time however, the push to make “Long COVID” a distinctive medical classification onto itself appears to be a political phenomenon, wrapped up in clear signs of pseudoscience and linked back to a fringe “alternative wellness” blog that originally coined the term in March 2020.

A recent study published in the Lancet-owned journal EClinicalMedicine purported to document over 200 symptoms of Long COVID, ranging from fairly common COVID-19 ailments such as fatigue, cough, or long-term loss of smell to an eclectic assortment of problems such as hallucination, brain fog, tearfulness, insomnia, and mood anxiety. Media reports breathlessly repeated these findings to press the urgency of funding for Long COVID research, while also hyping the syndrome as a further justification for alarmism in justifying lockdowns and similar measures. After all, if Long COVID afflicts a sizable subset of COVID patients – as some claim – and can strike young people who are at a much lower mortality risk from the virus itself, then perhaps more restrictive measures are warranted on the general population – or so the argument goes.

Many lockdown advocates have seized onto the Long COVID narrative, incorporating it into their defenses of the draconian non-pharmaceutical interventions they have advocated over the last year and a half. The COVIDFAQ website – a UK-based project set up by “neoliberal” activist Sam Bowman and British MP Neil O’Brien – invokes the threat of Long COVID in its attacks the Great Barrington Declaration (GBD), arguing that the hypothesized syndrome undermines evidence that the virus is substantially less-severe among younger demographics. Several pro-lockdown scientists and epidemiologists issued coordinated statements attacking the GBD in October 2020 for “ignor[ing] the emerging burdens of long COVID.” These statements are usually offered as declarative assessments, treating Long COVID as an established medical fact.

With billion-dollar budgets and the prospect of additional sweeping policy measures at stake, it only makes sense to ask if the science behind Long COVID is sound. There is no doubt that some COVID-19 victims have symptoms that linger for weeks or months beyond the typical recovery, although that is true of many diseases. Whether it has 200 plus symptoms is another story – and a closer look reveals an alarming amount of outright quackery is currently shaping the scientific and media discourse around Long COVID.

The problem arises from the amorphous definition of the phrase “Long COVID” itself. Far from a careful clinical diagnosis, Long COVID has become a catch-all term for any extended medical ailment, real or imagined, attributed to the effects of the COVID-19 virus. An alarming amount of alleged data about the phenomenon traces back to a single source called the “Body Politic Wellness Collective” – an alternative medicine blog with dubious scientific credentials. To quote one recent study of the term’s origins, “the emergence and recognition of Long COVID as a potentially major public health problem is largely due to advocacy groups such as the Body Politic COVID-19 Support Group, and Patient Led Research For COVID-19” – the latter an affiliated survey administrator that, according to its own website, was “born out of the Body Politic Slack support group.”

The same Body Politic group frequently appears in an already large and growing literature on “Long COVID” in other scientific journals. In September 2020, NIH Director Collins devoted his personal column on the agency’s website to touting the group. He later credited their work when launching the aforementioned $1 billion research initiative. In July 2021, Body Politic reappeared at the center of the aforementioned EClinicalMedicine study along with a spinoff organization called the Patient-Led Research Collaborative. The two groups administered the survey behind the claim that Long COVID carries over 200 symptoms.

Before we get into the survey itself, it’s useful to take a closer look at the Body Politic group. The Wall Street Journal recently ran a lengthy expose of the organization by Jeremy Devine, an Ontario-based psychiatrist. Devine found that the group’s initiatives sprang to life at the outset of the pandemic in March 2020. They first coined the Long COVID moniker around this time, promoting it in a flurry of media appearances. In early April, the New York Times ran an op-Ed by Body Politic’s co-founder calling attention to the syndrome and recounting her own experience as a “long hauler” (which, at the time, consisted of experiencing symptoms for about three weeks after testing positive).

As Devine documented in the WSJ, the Body Politic group’s approach to scientific survey design appeared highly unorthodox. It frequently relied on self-reported descriptions of Long COVID symptoms, instead of independent medical verification. It also had a habit of diagnosing people with Long COVID even after they tested negative for COVID-19 itself. A March 2021 report by Adam Gaffney for StatNews called attention to similar problems with Body Politic’s research design. “[A]t least some people who identify themselves as having long COVID appear never to have been infected with the SARS-CoV-2 virus,” Gaffney noted. They were nonetheless touted by the media as case studies in the alleged syndrome.

A closer look at the Body Politic group itself raises several red flags about their scientific qualifications. The group’s executive board boasts few, if any, actual medical practitioners or scientific experts. Instead we find an eclectic assortment of political activists, musicians, poets, and journalists, many of whom share common interests in “alternative medicine.” Body Politic’s Treasurer and principle support group organizer describes herself as a “practicing Spiritual Medium” who specializes in detecting “invisible illness.” The website’s Vice President is a “social & racial justice activist,” and its Secretary is an “aspiring sex coach.” Other affiliates include a self-described “socialist poet,” multiple “social justice activists,” and people who describe their careers as operating at the intersection between art and natural wellness. The group’s website and social media accounts frequently invoke political terminology from the critical theory literature. They describe themselves as “a queer feminist wellness collective and a space for inclusivity, accessibility, and crucial discussions about the very real connection between wellness, politics, and personal identity.” Their values statement espouses “patient-led” research to “democratize” medicine – descriptions that appear to forgo traditional scientific methods of testing and verification in favor of placing heavier reliance on patient testimonials and personal experience.

While the group’s activism alone does not disqualify their commentary, the unconventional qualifications of its leadership should raise suspicion about their claimed expertise on Long COVID. When NIH Director Collins personally promotes Body Politic’s work, he is creating a false sense of scientific credibility around their work. Few who read Collins’s statements are aware that the group he praises as “citizen scientists” might be better characterized as an odd assortment of psychic healers, magic crystal gurus, and alternative medicine activists. As a leading public health official, Collins’s many endorsements of this quackery border on irresponsible.

Turning to Body Politic’s survey projects, we quickly find that skepticism of their credibility is warranted. The group’s survey design specifically eschews requiring a positive COVID-19 test or antibody test to confirm that their respondents actually had the disease. “[W]e do not believe people’s experiences with COVID-19 symptoms should be discounted because they did not receive a positive test result,” states one justification for this unconventional data collection procedure. To qualify as a sufferer of Long COVID, it seems, a person needs only to claim that he or she suffers from Long COVID. Lived experience of the disease trumps any requirement of scientific verification.

The prevalence of unverified and untested COVID claimants being classified nonetheless as Long COVID sufferers is stunning. In the WSJ, Devine reports the numbers from the group’s first survey, administered through their website in 2020: “Nearly half (47.8%)” of Body Politic’s survey respondents “never had testing and 27.5% tested negative for COVID-19. Body Politic publicized the results of a larger, second survey in December 2020. Of the 3,762 respondents, a mere 600, or 15.9%, had tested positive for the virus at any time.” As Gaffney notes in StatNews, this practice raises the distinct possibility that survey respondents are misattributing other chronic symptoms to the virus.

Their new study in the Lancet’s journal EClinical Medicine does not offer much hope that Body Politic has improved its survey design. Its authors state that “We analyzed responses from 3762 participants with confirmed (diagnostic/antibody positive; 1020) or suspected (diagnostic/antibody negative or untested; 2742) COVID-19, from 56 countries.” Unconfirmed COVID patients with self-reported Long COVID symptoms outnumber confirmed COVID patients by almost 2.7 to 1. To their credit, the group discloses the lack of PCR or antibody testing confirmation among the majority of their respondents. The extremely high rates of unconfirmed cases, however, are more than sufficient to cast doubt upon their claims to have identified over 200 separate Long COVID symptoms.

The survey’s design also appears to self-select for people who are inclined to claim Long COVID symptoms, whether valid or not. According to the paper, the survey consisted of 257 questions, took almost 70 minutes on average to complete, allowed participants to revisit their answers for up to 30 days, and was primarily marketed to readers of the Body Politic group’s various blogs and Slack channels. This design practically ensures that the majority of the people who received and completed the survey were drawn from a readership that already gravitates towards the group’s political messaging and medical eccentricities.

Imagine if a survey on diet products collected its sample entirely from the mailing list of Gwyneth Paltrow’s “Goop” store. And imagine if the CDC decided to use that survey as a basis for a billion dollar program to revise its food nutrition guidelines, claiming that it is a representative study of the average American’s diet. Because that’s essentially what NIH Director Francis Collins has done with Body Politic’s surveys when justifying his current research initiative into Long COVID before the public.

With most Long COVID research at the moment, self-diagnosis by amateur groups appears to have supplanted scientific rigor in driving the NIH’s research priorities. Even minimal scrutiny should cast doubt upon the Body Politic group’s deficit of scientific credentials and surplus of outright “alternative medicine” quackery. Yet in January 2021 the New York Times heavily leaned on testimonials from Body Politic’s resident psychics and alternative wellness healers in a feature story on so-called Long COVID, aiming to demonstrate the scientific validity of the diagnosis.

So did an August 2020 piece in the Atlantic that is widely credited with popularizing the concept. Indeed, the New York Times has turned its opinion page over to Body Politic writers on multiple occasions over the last year, giving them free rein to promote unscientific claims about the concept. Simply scanning over mainstream media coverage of “Long COVID” in the last year reveals that Body Politic-affiliated activists with dubious scientific credentials have become go-to “experts” on the subject. Here they are being interviewed in Vox, in the Guardian, in the Washington Poston NPR, in Buzzfeed, and on MSNBC

In calling attention to Body Politic’s influence over shaping the Long COVID narrative, I do not question the possibility that some of the organization’s activists may exhibit genuine long-term COVID-related symptoms, even if they are not a distinct classification unto itself. But scientific assessment of their claims remains woefully inadequate relative to the authority that the media has bestowed upon them. In this sense, much of the Long COVID literature bears striking resemblance to other claimed chronic illnesses that have less-than-robust scientific grounding (for example, consider the difference between Celiac disease – a rare but severe dietary illness involving gluten – and the mid-2010s “gluten sensitivity” craze, which mixed together real and imagined but also self-diagnosed symptoms, fad dietary practices, and dubious scientific attestation)

Despite their scientific shortcomings, Body Politic’s own surveys have found a welcome audience among many academics who should know better. Even leading medical journals now regularly tout Body Politic’s dubious survey results as if they are scientific fact.

Last fall, the BMJ published an article on “Long COVID” from a team of scientists led by Oxford’s Trisha Greenhalgh, an outspoken pro-lockdown regular on the BBC and other UK media circuits. Greenhalgh’s team estimated that perhaps as many as 10% of people infected with COVID develop “Long COVID” symptoms – a number that has since become a standard estimate for Long COVID risks. 

Their empirical “evidence” for Greenhalgh’s claim, in turn, derives primarily from Body Politic’s “patient-led survey” of alleged Long COVID sufferers – the same survey where half or more of respondents never even had a confirmed COVID diagnosis. This was no accidental reliance on a substandard source, deriving from insufficient scrutiny of the survey’s methods. Greenhalgh credited the Body Politic group by name on Twitter for inspiring their paper, endorsing the “lived experience” of their “patient-led research.” Echoing the Body Politic survey, Greenhalgh and her co-authors further embrace the proposition “that a positive test for covid-19 is not a prerequisite for diagnosis” for Long COVID. It’s apparently sufficient to simply believe that you had a prior bout with COVID, and attribute your claimed long-term symptoms to the same.

Not surprisingly, Long COVID has become a favored fallback argument among lockdowner epidemiologists to argue for prolonged restrictions. Duke University’s Gavin Yamey has made a name for himself by credulously circulating conspiracy theories about the Great Barrington Declaration by blogger Nafeez Ahmed. Sure enough, he’s also a Long COVID activist, promoting Greenhalgh’s study as well as an assortment of news articles that blur the lines between legitimate reporting of long-term symptoms and quackery.

Although Body Politic is far from the only group advocating for Long COVID research funding, their high-profile promotion by the NIH, by leading news outlets, and by medical journals suggests a similar phenomenon to the pattern seen among other lockdown advocates in allegedly-mainstream epidemiology. We’re witnessing a full-scale breakdown of the screening mechanisms that normally steer scientific discourse away from fringe and conspiracist viewpoints – provided that those viewpoints may be used to advance the alarmist ideologies that have emerged around COVID policy over the last year. The doors have, sadly, been thrown wide open to psychic healing and alternative wellness gibberish. Lockdowner scientists have, in turn, given these suspect claims and defective survey designs a welcome home in the most prestigious institutions of journalism, government, and the ivory tower.

Phillip W. Magness

Phil Magness

Phillip W. Magness is a Senior Research Fellow at the American Institute for Economic Research. He holds a PhD and MPP from George Mason University’s School of Public Policy, and a BA from the University of St. Thomas (Houston).

Prior to joining AIER, Dr. Magness spent over a decade teaching public policy, economics, and international trade at institutions including American University, George Mason University, and Berry College.

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