Covid Citizen Scientists Provided Quick and Useful Knowledge

The essay quoted below claims that patients can provide useful knowledge about the symptoms of the diseases that afflict them. I agree, but would go even further. One source of knowledge that all humans have, and even non-humans to some extent, is the observation of patterns. Patients can observe which behaviors, medicines, circumstances make their disease better and which make their disease worse. Of course sometimes patients can be biased, can fool themselves. That can be a reason that patients disagree about what works. But another reason that patients can disagree is that patients have different bodies so that what works for one patient may not work for another. Researchers and clinicians are increasingly recognizing this when they advocate and practice “personalized” (aka “precision”) medicine.

And the academic and popular literatures have exaggerated the extent to which biases undermine our observation of patterns. The exaggeration is partly because bias is bad news, and bad news sells. The usual reliability of observed patterns has been persuasively defended in Gary Klein’s The Sources of Power.

Note another point in the passages quoted below. Patients have a sense of “urgency” that scientists often lack. Sometimes quick imperfect conclusions are actionable, while slow peer-reviewed conclusions are too late to be actionable. And sometimes peer-reviewed conclusions give us conclusions that are both slow and imperfect. Ioannides argues that “most published research findings are false” (2005). I am currently reading Piller’s Doctored that discusses highly-cited papers from the Alzheimer’s literature that illustrate Ioannides’s claim.

(p. C3) A month after her Covid-19 diagnosis last March [2020], Lisa McCorkell wanted to know why she was still struggling with a cough, shortness of breath and other debilitating symptoms. Her doctors didn’t have answers, so she and a group of other Covid patients took matters into their own hands. They formed a research group on a Slack channel and launched their own study.

“I was looking for validation, that my experience was reflected in the others,” said Ms. McCorkell, 28, of Oakland, Calif., who was finishing her graduate studies in public policy when she was diagnosed.

. . .

Covid citizen scientists generated information about symptoms, such as neurological issues, that didn’t garner a lot of attention at the start of the pandemic. They highlighted the overlooked challenges faced by people whose symptoms last longer than 28 days. The studies were limited by drawing largely from patients who joined online support groups, but they gained the kind of recognition by professional scientists that citizen science doesn’t always get.  . . .

The pandemic has created an opening for citizen scientists, because even now clinicians don’t fully understand the virus. Early clinical trial data comes mainly from studies involving hospitalized patients, whose experiences may not apply to those who are suffering but don’t end up in the emergency room.

. . .

Patients who want to lead Covid research projects often must navigate tension between their sense of urgency and the traditional scientific process, which typically requires a long peer review process before publication in a journal, said Emily Sirotich, a Ph.D. student at McMaster University in Canada. On March 12, the day the WHO declared Covid a pandemic, Ms. Sirotich joined a Twitter conversation between rheumatology patients and doctors, who were on equal footing when it came to Covid: No one understood the disease. “Everyone was worried,” she said.

. . .

Patients wanted to share the survey data right away, but the researchers argued that the scientific community wouldn’t use the information to inform patient care without the validation of going through peer review. “It has to be accurate,” said Ms. Sirotich.

The two groups tried to strike a balance, Ms. Sirotich said. Patients created overview summaries of the raw data that they immediately disseminated to support groups for use in personal decision making. The physicians and patients also co-wrote and submitted articles with more detailed data analysis to peer-reviewed journals and conferences.

“Covid gave us the opportunity to show that patients can produce valid data and reliable information about what they are experiencing,” Ms. Sirotich said.

In December [2020], the Patient-Led Research for Covid-19 group posted a paper based on analyzing data from over 3,700 patients to the MedRxiv public server, which professional scientists have used throughout the pandemic to quickly make results available to the wider community before peer review. The group also plans to submit the paper to a scientific journal.

Eric Topol, director of the Scripps Research Translational Institute in La Jolla, Calif., and a proponent of patients tracking their own health, tweeted the results. “There is a dearth of information about Covid,” Dr. Topol later said. As a professional scientist, he added, “The paper provided invaluable new insights to me.”

For the full essay see:

Amy Dockser Marcus. “Patients Are Doing Their Own Covid-19 Research.” The Wall Street Journal (Saturday, Jan. 30, 2021 [sic]): C3.

(Note: ellipses, and bracketed years, added.)

(Note: the online version of the essay has the same date as the print version, and has the title “Covid-19 Patients Are Doing Their Own Research.”)

Marcus’s essay is consistent with the theme of her book:

Marcus, Amy Dockser. We the Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine. New York: Riverhead Books, 2023.

The Gary Klein book I praise in my comments is:

Klein, Gary A. Sources of Power: How People Make Decisions. 20th Anniversary ed. Cambridge, MA: The MIT Press, 2017.

The Ioannidis paper that I quote above is:

Ioannidis, John P. A. “Why Most Published Research Findings Are False.” PLoS Medicine 2, no. 8 (Aug. 2005): 696-701.

The Piller book that I praise in my comments is:

Piller, Charles. Doctored: Fraud, Arrogance, and Tragedy in the Quest to Cure Alzheimer’s. New York: Atria/One Signal Publishers, 2025.

When Levi Strauss Forced Jennifer Sey to Resign for Speaking the Truth on Covid

Knowledge in general, and science in particular, advance through a process of questioning, evidence gathering, and debate. So it remains ironically outrageous that during the Covid pandemic much of the academic, government, and corporate establishment censored or even cancelled those who expressed then-heterodox views. Considerable evidence has since accumulated that Jennifer Sey’s skepticism of Covid school closures was highly justified.

(p. B4) A top Levi Strauss & Co. executive has left the apparel giant, citing clashes with colleagues, including Chief Executive Chip Bergh, over her public views regarding Covid-19 restrictions in schools.

Jennifer Sey, who led the Levi’s brand as president since 2020, said she resigned Sunday after more than 20 years at the company. Ms. Sey, 52 years old, has tweeted frequently and did media interviews to discuss her opposition to school closures through the pandemic.

In an essay posted online Monday [Feb. 14, 2022], Ms. Sey wrote that she was “condemned for speaking out” and that Levi Strauss executives urged her to limit these public statements. She wrote that in a recent meeting with Mr. Bergh, he told her that it was untenable for her to stay.

In a statement Monday [Feb. 14, 2022], Levi Strauss confirmed Ms. Sey had resigned and said it had initiated a search for a new Levi brand president. It appointed another executive, Seth Ellison, to temporarily fill the role.

For the full story, see:

Jacob Gallagher. “Levi Strauss Executive Quits Over Covid Views.” The Wall Street Journal (Tuesday, Feb. 15, 2022 [sic]): B4.

(Note: bracketed dates added.)

(Note: the online version of the story was updated Feb. 14, 2022 [sic], and has the title “Levi’s Executive Resigns, Citing Her Public Views on Covid-19 Curbs.”)

The Hurdles to Getting Paxlovid Reduce Its Use

Requiring prescriptions for most drugs is defended as a way to protect patients. But getting a quick physician appointment, making the appointment, and then getting the prescription filled, can all take nontrivial amounts of time and effort, especially burdensome for the poor or for those with work or family duties. Many drugs, such as Paxlovid for Covid, only work if taken in the early days of the disease. As a result, few people end up taking Paxlovid.

How does that protect patients?

If we respected the right of adult patients to make their own decisions, as soon as they had symptoms of Covid, they could go to a pharmacy and purchase Paxlovid.
Showing respect would both be moral, and would be more effective against the disease.

(p. A19) . . . Paxlovid seems to reduce the chance of hospitalization and death from Covid by more than 85 percent, . . .

. . .

But having drugs, especially highly effective ones like Paxlovid, is critical. And for these medications to succeed they must be taken correctly. People need to start them within five days of an infection, and because of the deficiencies of our testing system and other problems in health care, beginning treatment that quickly is difficult.

. . .

If you test positive, you can’t go straight to a pharmacy for the drug therapy like you did for the test. You need a prescription for the medication, which often requires a doctor’s visit. That presupposes that you have a doctor (many people don’t), and that there’s an appointment available. Before the pandemic, fewer than half of people in the United States could get a same-day or next-day appointment with their provider when they were sick.

If you’re lucky enough to traverse this gantlet successfully, though, you now need to get your prescription filled. Most insurance will restrict where you can get your medications paid for, and it’s hit or miss whether that pharmacy will have pills in stock. If not, hopefully they’ll be in a few days later, but those are precious days.

Too few people understand that much of the U.S. health care system is set up to make it harder for people to get care — an attempt to drive down overall health care spending. That’s why your insurance likely has higher deductibles than it used to, and more visits come with co-pays or coinsurance. But poorer people have a harder time covering these costs, so this worsens disparities and makes it harder for those who need help the most to get it.

We see this play out with Covid-19 treatments. A recent study looked at how efficiently and effectively Medicare beneficiaries (all of whom were elderly) received monoclonal antibody therapy from 2020 to 2021 for Covid. It found that those at highest risk were the least likely to be treated, in large part because it was difficult to navigate these hurdles within the 10 days from infection that treatment requires.

It doesn’t need to be this way.  . . .  Pharmacists could be more empowered to talk to patients about whether the pills are safe for them and distribute pill packs without a prescription if patients qualify.

For the full commentary, see:

Aaron E. Carroll. “Covid Drugs Might Work Well, but Our Health System Doesn’t.” The New York Times (Monday, February 14, 2022 [sic]): A19.

(Note: ellipses added.)

(Note: the online version of the commentary has the date Feb. 13, 2022 [sic], and has the title “Covid Drugs May Work Well, but Our Health System Doesn’t.”)

A Nimble Evolving Virus Can Outpace Sluggish Vaccine Clinical Trials

The long time that Phase 3 clinical trials take is a major cost. This is especially true for the poor souls whose dire disease will kill them soon. It is also true, as was the case for the rapidly evolving Covid virus discussed below, where the disease is evolving so fast that it is a moving target.

We should calibrate relative risks. What is the risk from delay? What is the risk from less certainty about efficacy?

When the risks from delay are huge, it makes sense to use quicker, allegedly less certain, sources of knowledge, rather than wait for the allegedly certain results of Phase 3 clinical trials.

(p. A13) WASHINGTON — A panel of independent experts advising the Food and Drug Administration is set to recommend on Tuesday [June 28, 2022] whether to update existing Covid-19 vaccines to target a newer version of the coronavirus in a booster shot that Americans could get in the fall.

The federal government is hoping to improve the vaccine to better boost people’s immunity before a likely resurgence of the virus this winter. But to move that quickly, it may need to abandon the lengthy human trials that have been used to test coronavirus vaccines over the past two years in favor of a faster process that relies more on laboratory tests and animal trials.

The most recent trials with human volunteers have taken five months, even using relatively small groups. But the virus is evolving so quickly that new vaccine formulations are out of date before such trials are even finished.

For the full story see:

Sharon LaFraniere. “Chasing Fast-Evolving Virus, F.D.A. May Move to Update Covid Vaccine.” The New York Times (Tuesday, June 28, 2022 [sic]): A13.

(Note: bracketed date and bolded words, added.)

(Note: the online version of the story has the date June 27, 2022 [sic], and has the title “F.D.A. May Move Toward Updating Vaccines.”)

Using the Blood of the Young to Rejuvenate the Organs of the Old

The strange longevity therapy described in the passages quoted below, are hard to test, especially if started at a time in life early enough to do the most good.

Phase 3 clinical trials to establish the efficacy of a therapy are in general very expensive, and they are especially very expensive for therapies aimed at extending lifespan. To know the efficacy of such therapies you have to run the trial for many years, before you can learn the lifespans of all of those in the trial.

This may be one reason why pharma firms instead invest in incremental improvements in health tested for those predicted to be near the end of their lives.

Azra Raza claims that the most promising therapies for cancer would be those applied early in the disease. But it is precisely these candidate therapies that would be most expensive to test through a hyper-expensive Phase 3 clinical trial. The result? Unnecessarily slow progress in curing cancer.

(p. B3) Several years ago, scientists studying aging at the Harvard Stem Cell Institute used a somewhat Frankensteinian technique known as parabiosis — surgically joining a young mouse and an old mouse so that they share blood — to see what would happen to the heart and skeletal muscle tissue. They knew from previous research that putting young blood in old mice caused them to grow biologically younger, and that young mice exposed to old blood aged faster.

The Harvard researchers, Amy Wagers and Dr. Richard Lee, found that the old mouse’s heart tissue had been repaired and rejuvenated, becoming young again. In fact, the size of the old mouse’s heart had reduced to that of a young heart.

“We all wondered, what’s the magic stuff in the blood?” said Lee Rubin, a professor of stem cell and regenerative medicine at Harvard and the co-director of the neuroscience program at the Stem Cell Institute. The “magic” they identified was a protein, GDF11, one of tens of thousands produced in the human body.  . . .  The scientists’ discoveries were published in the journals Cell and Science in 2013 and 2014.

. . .

“We’re interested in proteins like GDF11 that are excreted into the bloodstream because those can cause changes throughout the body,” said Dr. Mark Allen, the chief executive of Elevian. “And those are the kind of changes we want.”

. . .

The initial research into the rejuvenating properties of GDF11 has gotten some pushback from the scientific community. In 2015, after Dr. Wagers and Dr. Lee had published their results, a group of researchers led by David Glass, the executive director of the Novartis Institutes for Biomedical Research in Cambridge, Mass., at the time, challenged the accuracy of their findings in an article in the journal Cell Metabolism. The Harvard researchers subsequently countered the Novartis team’s findings in another paper published later that year in the journal Circulation Research, in which the Harvard researchers cited a problem with the Novartis team’s findings.

Dr. Glass, who is now at the biotechnology company Regeneron, said in a recent email that he stands by his original work, which showed that GDF11 inhibits, rather than helps, muscle regeneration. But, he added, “our work still leaves open the possibility that there could be positive effects of GDF11 in particular settings.”

Dr. Allen said that since the original controversy, Elevian’s research team has reproduced and extended its original findings in multiple studies, but none have yet been published in peer-reviewed journals. However, institutions unrelated to Elevian have conducted and published many preclinical studies demonstrating the therapeutic efficacy of rGDF11 (the form of GDF11 developed in a lab) in treating age-related diseases.

. . .

A significant challenge lies ahead for all of these companies: Commercializing a drug for aging is nearly impossible because the F.D.A. doesn’t recognize aging as a disease to be treated. And even if it were considered a disease, the clinical studies required to prove that a treatment for it worked would take many years.

“It is likely that clinical studies to see if some drug slows aging — and thereby delays the many consequences of aging — would take a long time,” Dr. Miller said.

. . .

The next big hurdle for Elevian is scaling its manufacturing, which requires specialized equipment and conditions. So much research is being conducted in biotech that contract manufacturers are “full up,” Dr. Allen said. “They are busy with Covid-related work, and there has been a lot of funding in biotech generally,” he added. “So it’s a challenge finding the space that meets our specifications.”

. . .

“By targeting fundamental mechanisms of aging, we have the opportunity to treat or prevent multiple aging-related diseases and extend the health span,” he said. “We want to make 100 the new 50.”

For the full story see:

Eilene Zimmerman. “Biotech Start-Up Invests in Anti-Aging Therapy.” The New York Times (Monday, August 1, 2022 [sic]): B3.

(Note: the online version of the story has the date July 19, 2022 [sic], and has the title “Can a ‘Magic’ Protein Slow the Aging Process?”)

The published academic articles supporting the promising effects of GDF11 are:

Katsimpardi, Lida, Nadia K. Litterman, Pamela A. Schein, Christine M. Miller, Francesco S. Loffredo, Gregory R. Wojtkiewicz, John W. Chen, Richard T. Lee, Amy J. Wagers, and Lee L. Rubin. “Vascular and Neurogenic Rejuvenation of the Aging Mouse Brain by Young Systemic Factors.” Science 344, no. 6184 (May 9, 2014): 630-34.

Loffredo, Francesco S., Matthew L. Steinhauser, Steven M. Jay, Joseph Gannon, James R. Pancoast, Pratyusha Yalamanchi, Manisha Sinha, Claudia Dall’Osso, Danika Khong, Jennifer L. Shadrach, Christine M. Miller, Britta S. Singer, Alex Stewart, Nikolaos Psychogios, Robert E. Gerszten, Adam J. Hartigan, Mi-Jeong Kim, Thomas Serwold, Amy J. Wagers, and Richard T. Lee. “Growth Differentiation Factor 11 Is a Circulating Factor That Reverses Age-Related Cardiac Hypertrophy.” Cell 153, no. 4 (May 9, 2013): 828-39.

Poggioli, Tommaso, Ana Vujic, Peiguo Yang, Claudio Macias-Trevino, Aysu Uygur, Francesco S. Loffredo, James R. Pancoast, Miook Cho, Jill Goldstein, Rachel M. Tandias, Emilia Gonzalez, Ryan G. Walker, Thomas B. Thompson, Amy J. Wagers, Yick W. Fong, and Richard T. Lee. “Circulating Growth Differentiation Factor 11/8 Levels Decline with Age.” Circulation Research 118, no. 1 (Jan. 2016): 29-37.

Sinha, Manisha, Young C. Jang, Juhyun Oh, Danika Khong, Elizabeth Y. Wu, Rohan Manohar, Christine Miller, Samuel G. Regalado, Francesco S. Loffredo, James R. Pancoast, Michael F. Hirshman, Jessica Lebowitz, Jennifer L. Shadrach, Massimiliano Cerletti, Mi-Jeong Kim, Thomas Serwold, Laurie J. Goodyear, Bernard Rosner, Richard T. Lee, and Amy J. Wagers. “Restoring Systemic Gdf11 Levels Reverses Age-Related Dysfunction in Mouse Skeletal Muscle.” Science 344, no. 6184 (May 9, 2014): 649-52.

The book by Asra Raza that I praise in my introductory comments is:

Raza, Azra. The First Cell: And the Human Costs of Pursuing Cancer to the Last. New York: Basic Books, 2019.

W.H.O. Ignored Those Who Knew Covid Was Airborne

The article quoted below provides more evidence that the World Health Organization (W.H.O.) failed to protect world health during the Covid pandemic. Its funding and decision-making processes made failure highly likely.

In the absence of W.H.O, how can we learn quickly of potential pandemic threats from around the world? The Covid book co-authored by Ridley documents quick and effective Twitter (now X) networks that spread and evaluated Covid information. Maybe a proof of concept?

(p. D3) In early February 2020, China locked down more than 50 million people, hoping to hinder the spread of a new coronavirus. No one knew at the time exactly how it was spreading, but Lidia Morawska, an expert on air quality at Queensland University of Technology in Australia, did not like the clues she managed to find.

It looked to her as if the coronavirus was spreading through the air, ferried by wafting droplets exhaled by the infected. If that were true, then standard measures such as disinfecting surfaces and staying a few feet away from people with symptoms would not be enough to avoid infection.

Dr. Morawska and her colleague, Junji Cao at the Chinese Academy of Sciences in Beijing, drafted a dire warning. Ignoring the airborne spread of the virus, they wrote, would lead to many more infections. But when the scientists sent their commentary to medical journals, they were rejected over and over again.

“No one would listen,” Dr. Morawska said.

It took more than two years for the World Health Organization to officially acknowledge that Covid spread through the air.

For the full story see:

Carl Zimmer. “Covid Proved Airborne. Could Bird Flu Be, Too?” The New York Times (Tuesday, February 4, 2025): D3.

(Note: the online version of the story has the date February 3, 2025, and has the title “Could the Bird Flu Become Airborne?”)

The book co-authored by Ridley that I praise in my initial comments is:

Chan, Alina, and Matt Ridley. Viral: The Search for the Origin of Covid-19. New York: Harper, 2021.

S.B.A. “Forgives” Most Covid “Loans” Even Though at Least 17% Were Issued to Fraudsters

We used to handle suffering during crises by mutual aid societies or by giving philanthropy to those we know best–our friends and neighbors. The potential fraudster is less likely to defraud their brother or neighbor, than some unknown taxpayer in a distant state. And the local philanthropist is more likely to be able to judge which relative or neighbor will benefit from aid. Giving billions to fraudsters fueled the future inflation that ordinary decent citizens would latter struggle with.

If the federal government wanted to reduce the pain from the pandemic, the best way would have been to reduce the number, and shorten the length, of mandates. Handing so much money to fraudsters, with so little due diligence, is outrageous.

[Admission: I was the victim of identity theft when the S.B.A. gave a fraudster, using my name, tens of thousands of dollars for a potato farm supposedly run by me. Then the S.B.A. had the audacity to start sending me threatening letters about my alleged failure to pay back the loans they had given to the fraudster.]

(p. A1) When J. Bryan Quesenberry first learned that the federal government was sending out hundreds of billions of dollars to help businesses survive during the Covid-19 pandemic, he thought: “There’s going to be fraud here. There just has to be.”

A few months later, Mr. Quesenberry started sifting through a list of businesses that received Paycheck Protection Program loans, which were intended to help small businesses ravaged by the pandemic continue paying their employees. The Oregon lawyer said he knew businesses were not allowed to receive more than one loan during a single round, so he searched for “double dippers.”

He soon found dozens of businesses across the country that appeared to improperly obtain P.P.P. loans. During the summer of 2020, Mr. Quesenberry started suing those firms to try to help the government recover funds.

“It just blows my mind,” Mr. Quesenberry said. “That’s tax money that comes out of your pocket and that comes out of my pocket.”

As federal officials try to retrieve billions in stolen pandemic relief funds, private citizens are scouring public data, company websites and social media pages to help identify potential cases. Those who have filed suits say they are motivated by the desire to root out wrongdoers and expose corporate fraud.

But there is also a strong financial incentive. Under the False Claims Act, private citizens can file lawsuits on behalf of the federal government against those who may have defrauded the United States. If the government recovers funds, those citizens can typically earn between 15 and 30 percent of that amount.

. . .

(p. A15) The armchair sleuthing highlights how widespread pandemic fraud was and how federal investigators have struggled to keep up with it. In its haste to stave off an economic crisis and provide immediate aid to Americans, Washington distributed billions of dollars with few strings and little oversight. The Small Business Administration’s inspector general has estimated that more than $200 billion — or at least 17 percent of the pandemic loans the agency distributed — was awarded to “potentially fraudulent actors.” The majority of P.P.P. loans have been forgiven by the federal government.

While federal investigators have gone after some of the biggest perpetrators of fraud, limited resources have hindered their ability to go after the estimated thousands of people who improperly took government money.

. . .

Some private citizens said that it often took hours to investigate leads, and that they were unearthing cases that might otherwise slip through the cracks. Although Mr. Quesenberry said he relied primarily on information available on the internet to build cases, he said it was a time-intensive process that often required combing through government websites, Yelp pages, news articles and LinkedIn profiles. He said he thought he added value because he was pulling together evidence to “paint the picture of fraud.”

Mr. Quesenberry has earned more than $400,000 from 10 cases that have helped the federal government recover more than $3 million, according to a review of documents from U.S. attorney’s offices. Mr. Quesenberry said he had been investigating pandemic fraud for about four and a half years and was now working on his cases full time.

. . .

Hadar Susskind, the president and chief executive of Americans for Peace Now, said officials thought they had qualified for the loan because they did not consider the nonprofit to be a political organization. He said they had settled because it could have been costlier to go to court.

Mr. Susskind said he had never met Mr. Abrams, but he believed the complaint was “very much ideologically motivated” because of the nonprofit’s work to promote Israeli-Palestinian peace.

In an email, Mr. Abrams said: “In America these anti-Israel organizations have the right to spin, distort or even outright lie about Israel. However, they do not have the right to subsidize their activities with government monies for which they were not eligible.”

Mr. Abrams said he had long done other activist work, including recently representing a Jewish high school student who was the victim of antisemitic bullying. He said that he did not charge fees in those matters, and that the “whistle-blower cases do generate significant revenue so things more or less balance out.”

For the full story see:

Madeleine Ngo. “Fraud Hunters Earn Windfalls Tied to Covid.” The New York Times (Monday, November 25, 2024): A1 & A15.

(Note: ellipses, and bracketed date, added.)

(Note: the online version of the story has the date Nov. 23, 2024, and has the title “They Investigated Pandemic Fraud, Then Earned Thousands.”)

“Stand for Health Freedom”

I believe that respecting each other’s freedom is what makes America exceptional. It is the right thing to do. But what a wonderful miracle, that on balance respecting freedom results in much else that is good, including better health and more happiness.

I believe that vaccines sometimes have bad side effects, but that on balance some vaccines are among the greatest contributions to human health.

But we should convince, not mandate. We should respect freedom because that is what is moral to do. And if we do, there will be more medical innovation; more and faster cures.

(p. A11) Ms. Wilson’s organization, Stand for Health Freedom, has become part of a grassroots push . . . .  . . .  To Ms. Wilson, those involved have coalesced around one idea: “There’s roles for government, and telling us how to care for our bodies is not one of them.”

. . .

Stand for Health Freedom is a young organization, but the wider movement “goes to the very roots of America,” said Lewis A. Grossman, a professor at American University’s law school who has studied the history of libertarianism.

“There’s always been a robust portion of Americans who embrace these values,” Mr. Grossman said. As early as 1902, organizations like the American Medical Liberty League were pushing for freedom from vaccine mandates. In the 1950s, the John Birch Society and National Health Federation took up the cause. In 1975, a group opposed to water fluoridation in Rockland County, N.Y., called itself the Citizens for Health Freedom.

But by and large, these groups and others like them existed outside the mainstream. Starting in the 1960s, however, American trust in institutions began to wane.

. . .

Then, Covid struck and cities were locked down. Public health officials also fumbled critical early messaging, painting the vaccines as a “miracle” that would provide permanent immunity, said Michael T. Osterholm, the director of the Center for Infectious Disease Research and Policy at the University of Minnesota.

“We really lost credibility, because that’s not what happened,” Dr. Osterholm said.

Suddenly, medical freedom became a salient issue to many more Americans, and resistance to Covid restrictions became their unifying principle.  . . .

Much of that growth occurred online, as people lost faith in traditional medical institutions and searched for like-minded thinkers, Dr. Osterholm said. New supporters flocked to Ms. Wilson’s organization as it took on all sorts of causes.

. . .

As it grew, Ms Wilson’s organization gained support from a politically diverse group of advocates. Roughly 40 percent of the people who have taken action on the platform are Democrats, she claimed. Ms. Wilson saw this as evidence that “there are plenty of people who care about being the one who makes the ultimate health decisions for their children,” she said.

“This is common sense,” she added, “not strange or rare.”

For the full story see:

Kate Morgan. “Vaccine Protesters Find Winning Slogan: ‘Health Freedom’.” The New York Times (Wednesday, January 1, 2025): A11.

(Note: ellipses added.)

(Note: the online version of the story was updated Dec. 31, 2024, and has the title “How ‘Health Freedom’ Became a Winning Rallying Cry.”)

During the Covid Pandemic, “Public Health Officials Could Not Be Trusted to Tell the Whole Truth”

From the review quoted below, Rivers’s book is refreshingly open about the downsides of public health actions against epidemics. But in the end, I infer that Rivers still gives pride of place to public health actions in fighting epidemics. She wants public health actions to be reformed but believes that public health officials will be and should be the dominant actors during epidemics. I, to the contrary, believe that innovative medical entrepreneurs will be and should be the dominant actors. I believe that partly because medical entrepreneurship respects human liberty, while public health official commands do not respect human liberty, but also partly because medical entrepreneurship is more effective at ending epidemics.

(p. A15) As recently as 2019, confides Caitlin Rivers, an epidemiologist at Johns Hopkins, “I was confident that we knew how to navigate, if not control, a pandemic.” But within a year “that hubris was laid bare.” Covid-19 “overran us,” leaving in its wake a striking loss of confidence in public health.

“Crisis Averted” is Ms. Rivers’s ambitious and, given its charge, surprisingly successful attempt to reset our relationship with the field of public health. With a judicious blend of candor, hopefulness and pragmatism, she calls out its mistakes, reminds us of its historic accomplishments and emphasizes the need for the discipline to adjust its strategies if its full promise is to be realized.

. . .

. . . for every public-health triumph there are heartbreaking disappointments. In 2010, a lack of clean water and adequate sanitation allowed a cholera epidemic to rampage through Haiti after a catastrophic earthquake; worse, the disease, not endemic in the region, arrived through foreign aid workers. Human error was also responsible for the last recorded smallpox fatality, a medical photographer in the U.K. who died after the virus leaked from a sloppy lab on the floor below.

. . .

Animating much of Ms. Rivers’s narrative and analysis is the Covid-19 pandemic, a crisis that, as she laments, wasn’t averted.  . . .  She . . . describes early advice from public-health officials claiming that mask use was “not recommended” and “should be avoided” as “odd and brittle assertions that did not hold up to the slightest scrutiny” and left many with the impression that “public health officials could not be trusted to tell the whole truth.”

. . .

After years of relentless insistence that we “follow the science,” it’s refreshing to hear an expert illuminate all that remains unknown—from the vagaries of the common cold to the vexing challenge of coaxing healthy behavior change. Most epidemics of the past century, Ms. Rivers points out, “took forms that were slightly off-center from what epidemiologists expected”—the recent pandemic, for example, was caused not by an influenza virus, as anticipated, but rather by a coronavirus. Her advice: Expect a surprise.

For the full review see:

Shaywitz, David A. “Bookshelf; What the Doctors Ordered.” The Wall Street Journal (Wednesday, Oct. 2, 2024): A15.

(Note: ellipses added.)

(Note: the online version of the review has the date October 1, 2024, and has the title “Bookshelf; ‘Crisis Averted’ Review: What the Doctors Ordered.”)

The book under review is:

Rivers, Caitlin. Crisis Averted: The Hidden Science of Fighting Outbreaks. New York: Viking, 2024.

“Trusting the Experts Is Not a Feature of Science. It’s the Opposite of Science.”

Over my desk, in the biggest font my printer will print, I have the Latin motto “Nullius in Verba.” That is the motto of the Royal Society of London, the first association for the advancement of science. In English the motto says “on no one’s word” and is usually interpreted to mean that if we are doing science we rely on evidence, and not on the authority of experts. C.S. Peirce said truth is what results from infinite inquiry. Science is a process of asking questions, not a body of unquestionable truths. During the Covid pandemic we were told to stop asking questions and blindly accept the orders of “experts” who the government identified as scientists. Citizens who valued free speech and understood Nullius in Verba rebelled.

Vaccines and antibiotics are two of the greatest achievements in medicine. But both have side-effects and risks. By denying the real side-effects and risks of Covid vaccines, the “experts” destroyed their credibility with the thinking (i.e., the scientific) public. The public’s anger at being lied to was so great that some went so far as to reject all vaccines, even in the frequent situation where on balance the benefits of the vaccine outweigh the side-effects and risks. This was the unnecessary, outrageous, and sad result of government regulators who did not value freedom and did not understand the meaning of “science.”

(p. A1) The rise of Robert F. Kennedy Jr. from fringe figure to the prospective head of U.S. health policy was fueled by skepticism and distrust of the medical establishment—views that went viral in the Covid-19 pandemic.

. . .

Lingering resentment over pandemic restrictions helped Kennedy and his “Make America Healthy Again” campaign draw people from the left and the right, voters who worried about the contamination of food, water and medicine. Many of them shared doubts about vaccines and felt their concerns were ignored by experts or regarded as ignorant.

. . .

(p. A8) Much of Kennedy’s popularity reflects residual pandemic anger—over being told to stay at home or to wear masks; the extended closure of schools and businesses; and vaccine requirements to attend classes, board a plane or eat at a restaurant.

“We weren’t really considering the consequences in communities that were not New York City,” the places where the virus wasn’t hitting as hard, former National Institutes of Health Director Francis Collins said at an event last year.

Authorities focused on ways to stop the disease and failed to consider “this actually, totally disrupts peoples’ lives, ruins the economy and has many kids kept out of school,” Collins said. The U.S. overall took the right approach, he said, but overlooking long-term consequences was “really unfortunate. That’s another mistake we made.”

. . .

. . ., Jessica Malaty Rivera, an epidemiologist with hundreds of thousands of Instagram followers, shared information on the importance of vaccines and face masks. She dismissed unsupported claims as misinformation and described some of their purveyors as grifters.

Looking back, Rivera said her sometimes scolding messages weren’t helpful. “Everybody has been tempted by the slam dunk,” she said. “It’s not an effective way to communicate science. It’s just not.” She and others say they are dialing back the use of the word misinformation, saying it makes people feel they are being called liars or dumb.

During the pandemic, Palmira Gerlach had questions about the Covid-19 vaccines, but doctors “were very dismissive,” the 44-year-old recalled.

Gerlach, a stay-at-home mother outside Pittsburgh, said she falsely told her child’s pediatrician that she got the shot, seeking to avoid judgment. The doctor told her, “Good girl.” Gerlach turned to podcasts featuring Kennedy, drawn to his willingness to question pandemic measures.

. . .

“We were all told in Covid: ‘Trust the experts.’ But that’s not a thing,” Kennedy said in an episode of the “What is Money?” podcast in April [2024]. “Trusting the experts is not a feature of science. It’s the opposite of science. It’s not a feature of democracy.”

For the full story see:

Liz Essley Whyte. “How Science Lost America’s Trust.” The Wall Street Journal (Thursday, Nov. 21, 2024): A1 & A8.

(Note: ellipses, and bracketed year, added.)

(Note: the online version of the story has the date November 19, 2024, and has the title “How Science Lost America’s Trust and Surrendered Health Policy to Skeptics.” In passages where the online version is more detailed, I quote from the online version.)

Innovative Medical Project Entrepreneur Karikó Long Persevered to Develop mRNA Technology Behind Covid-19 Vaccines

The basic science and technology behind mRNA did not come easy and did not come quick. If the skeptics of Covid-19 vaccines knew this they might be less skeptical because one of the reasons they sometimes give for their skepticism is the speed with which the vaccines were developed. (Other reasons for skepticism I think are more defensible, such as the worry that the authorities downplayed the real side-effects that some vaccine recipients suffered from the vaccines. But on balance I still think the vaccines were a great achievement.) One of the heroes of the long slog is Katalin Karikó. Part of her story is sketched in the passages quoted below. She is a good example of an innovative medical project entrepreneur. When she was named a winner of the Nobel Prize she identified part of what it takes to succeed: “we persevere, we are resilient” (Karikó as quoted in Mosbergen, Loftus, and Zuckerman 2023, p. A2).

(p. A2) The University of Pennsylvania is basking in the glow of two researchers who this week were awarded the Nobel Prize in medicine for their pioneering work on messenger RNA.

Until recently, the school and its faculty largely disdained one of those scientists.

Penn demoted Katalin Karikó, shunting her to a lab on the outskirts of campus while cutting her pay. Karikó’s colleagues denigrated her mRNA research and some wouldn’t work with her, according to her and people at the school. Eventually, Karikó persuaded another Penn researcher, Drew Weissman, to work with her on modifying mRNA for vaccines and drugs, though most others at the school remained skeptical, pushing other approaches.

. . .

. . . on Monday [Oct. 2, 2023], when Karikó and Weissman were awarded the Nobel, on top of prestigious science prizes in recent years, the school expressed a different perspective on their work.

The reversal offers a glimpse of the clubby, hothouse world of academia and science, where winning financial funding is a constant burden, securing publication is a frustrating challenge and those with unconventional or ambitious approaches can struggle to gain support and acceptance.

“It’s a flawed system,” said David Langer, who is chair of neurosurgery at Lenox Hill Hospital, spent 18 years studying and working at Penn and was Karikó’s student and collaborator.

. . .

Penn wasn’t the only institution to doubt Karikó’s belief in mRNA when many other scientists pursued a different gene-based technology. In a reflection of how radical her ideas were at the time, she had difficulty publishing her research and obtaining big grants—prerequisites for those hoping to get ahead in science and gain academic promotions.

Another reason her relationship with the school frayed: Karikó could antagonize colleagues. In presentations, she often was the first to point out mistakes in their work. Karikó didn’t intend to offend, she just felt the need to call out mistakes, she later said.

For the full story see:

Gregory Zuckerman. “Penn Toasts Winning Scientist After Shunning Her for Years.” The Wall Street Journal (Thursday, Oct. 5, 2023 [sic]): A2.

(Note: ellipses, and bracketed date, added.)

(Note: the online version of the story has the date October 4, 2023 [sic], and has the title “After Shunning Scientist, University of Pennsylvania Celebrates Her Nobel Prize.”)

The source of the Karikó quote in my opening comments is:

Dominique Mosbergen, Peter Loftus and Gregory Zuckerman. “Pair Met With Doubts, Now Win Nobel Prize.” The Wall Street Journal (Tuesday, Oct. 3, 2023 [sic]): A1-A2.

(Note: the online version of the story was updated October 2, 2023 [sic], and has the title “Pioneers of mRNA Find Redemption in Nobel Prize.”)

For more detailed accounts of Karikó’s life, struggles, and research see:

Karikó, Katalin. Breaking Through: My Life in Science. New York: Crown, 2023.

Zuckerman, Gregory. A Shot to Save the World: The inside Story of the Life-or-Death Race for a Covid-19 Vaccine. New York: Portfolio/Penguin, 2021.