RFK Jr, the Department of Health and Human Services, and Myalgic Encephalomyelitis

Scientists and the mainstream press are horrified by Trump's choice for HHS secretary. It's complicated.

Copyright 2024 Hillary Johnson. All Rights Reserved.

In 2016, Trump picked Tom Price as secretary of the Department of Health and Human Services for his new cabinet. The former republican congressman was anti-abortion, pro-gun, wanted to see Medicare entitlements cut and was one of the era’s most vocal opponents of the Affordable Care Act. Price was also a long-time proponent of defunding Planned Parenthood and supported the right of insurance companies to deny women insurance coverage for birth control. 

Democrats were shocked—shocked!—by Trump’s choice. A year later, Price resigned after his first year amidst inquiries about his $1 million bill for use of private jets at taxpayers’ expense. He was the first Trump cabinet secretary to resign under pressure; at least seven more members of Trump’s cabinet were forced to resign in similar fashion in the next four years.

Cut to the present and Trump has shocked people again with his choice of RFK Jr. for the important post. Only weeks ago any notion that RFK Jr. might someday run the Department of Health and Human Services with its 80,000 employees seemed just too wild to take seriously.

In the days since last Thursday’s announcement, cable news shows on the left have played host to former administrators in the public health realm who think Trump’s choice of RFK Jr. is a terrible one. Former DHHS secretary Kathleen Sebelius who served from 2009 to 2014 and Richard Besser, who had a brief stint as acting director of the CDC in 2009, have both piped up. It’s hardly surprising current DHHS employees aren’t weighing in just now.

“Chilling,” is how Besser described the prospect of Kennedy at the helm of HHS; Sebelius called it “terrifying” and “very frightening.”

Besser and Sebelius aren’t the only public health veterans who find the specter of an HHS run by Kennedy unthinkable, with RFK’s history of criticisms of vaccine technology leading the list of complaints. Several are weighing in with their dismay. They emphasize the importance of “public health messaging,” and worry Kennedy will send the wrong messages to the public.

Kennedy’s possible ascension to a cabinet-level post may be controversial—but from the ground it looks like cosmic justice. The nation’s medical establishment and a deeply bureaucratic, slow-moving public health establishment in concert have willfully consigned entire patient constituencies to summary judgements of worthiness and unworthiness for decades, absent any scientific investigation. Millions are sick and DHHS agencies have done next to nothing to stem the tide of disability. Has that bill come due in the form of Bobby Kennedy?

For several decades Kennedy has been an independent agent, operating as an investigative gadfly. He’s been attentive to big issues that have received less than adequate attention from the nation’s public health bulwarks, the CDC and NIH. His activism has focused on toxic chemicals, beginning with New York’s Love Canal catastrophe in the late 1970s, and the exponential explosion of autism in the 1990s, which has led to an estimated prevalence rate of one in every thirty-six children today.

Kennedy has pursued these problems for years, winning big lawsuits against polluters and challenging assertions by the Centers for Disease Control about autism, backed by a sizeable group of autism parents who have quit trusting their government. His positions on vaccines have been the most polarizing of all, beginning with his claim several years ago that vaccines cause autism. Kennedy has performed extensive investigation into the Centers for Disease Control’s vaccine research. In Rolling Stone magazine and elsewhere he has accused the agency of hiding data about vaccine safety. As recently as February 21, 2017 Kennedy and actor Robert DeNiro held a press conference in which they offered $100,000 to anyone who could prove that the presence of mercury in children’s vaccines was safe. The government finally removed mercury from all childhood vaccines in 2021 as a “precaution.”

Kennedy has been on Trump’s radar for several years, initially as a result of vaccine politics. In his first administration, Trump expressed his concern about the vaccine schedule for infants. Trump felt strongly enough about the issue that he sought Kennedy out to establish a vaccine safety commission, although that commission never materialized.

Kennedy is now suggesting that his view is more nuanced about the relationship between vaccines and disease, a message the mainstream press has yet to appreciate. He has complained, “I got the toxins out of fish, but nobody calls me anti-fish.” I’ll add: vaccines may not have caused the increase in autism since the Sixties, but something did. Maybe it’s reasonable to point out that Kennedy made finding the cause of autism a crucible for years, unlike the CDC or NIH. Currently, in a jumble of hypotheses that might sound familiar to ME sufferers, the government posits toxic chemicals, air pollution, maternal infections, genetics, increased awareness and, yes, stress may cause autism.

One result of his ancestral entitlement is that Kennedy remains unfazed by people inside federal institutions who dismiss him. He will not be intimidated, and that’s a great strength in advocates, as long as they are your advocates. In August, numerous members of his own family publicly expressed their “disgust” over his decision to endorse Trump, yet he persisted. Bear cub corpses and whale heads aside, it’s probably unsurprising that the nephew of JFK and the son of RFK will not be denied his say. It’s easy to imagine that RFK’s Jr.’s chutzpah alone is a turn on for Trump’s bro club. Trump is offering him a chance for his own power base, a bully pulpit he might not have foreseen even a few months ago. Kenney has warned FDA staff to “preserve your records” and “pack your bags,” and has said he will fire six-hundred people at NIH immediately. His language is redolent with pent-up fury, or bravado, or both.

My first reaction to the news was disbelief, quickly followed by—I admit—cotton candy-like schadenfreude. I contemplated the Edvard Munch-style screams, whether internalized or vocalized, among the public health stalwarts in Washington, D.C, Bethesda and that wayward agency in Atlanta, the CDC.

Before knocking me for my moment of sophomoric glee, understand that I have had a thoroughly jaundiced view of the federal health agencies ever since writing a book about the government’s handling of the epidemic of myalgic encephalomyelitis that began in the mid-1980s. Originally, I thought my book would document the government’s effort to end that epidemic. Instead, I sat through hundreds of hours of interviews with DHHS scientists while I was reporting my story over a period of a decade. I struggled to keep my expression neutral as they explained to me that this virulent disease didn’t exist, or was the purview of “under-achieving women” or was hypochondria, or a malaise of over-achievers. Nevermind that the science indicated otherwise. Instead of chronicling the heroism of these agencies as planned, I ended up documenting the CDC’s well-coordinated theft of approximately $150 million dollars from US taxpayers afforded them by Congress to study myalgic encephalomyelitis. I also identified startling falsehoods and dissembling by administrators at these agencies in their testimony before appropriation subcommittees in Congress. I watched the agencies’ propaganda machines at work as staff cranked out misleading press releases and defamed scientists, doctors and patients in their comments to big media.

The government’s wholesale dismissal of this outbreak has resulted in, by 2024, more than one in every one-hundred citizens in this country becoming ill and disabled. That’s three million people gone from the workforce and gone from their lives. But that number is—even the CDC agrees—likely significantly higher because so many ME sufferers are undiagnosed. By DHHS fiat, there has been scant effort during the past forty years to even identify the cause. Nor has DHHS expended any effort to realign the public’s understanding of ME with reality.

More generally, DHHS has an insidiously patronizing view of the US population. The departments’ administrators are overly concerned with preventing public panic and they undervalue the merits of alerting the public to dangers and harms. Government health officials say they’re worried about RFK Jr.’s possible incorrect “public messaging,” for instance, but they have been pushing a dishonest message about ME for decades. That message has been: “Nothing to see here—keep walking.”

What connects RFK Jr.’s appointment with ME is the fact that Kennedy’s mandate from Trump dovetails with his own desire to address chronic disease. ME is nothing if not chronic at the moment—but is it the kind of chronic disease Kennedy seeks to target? Trump and Kennedy seem to be talking about diabetes and obesity, which are commonly described as avoidable chronic diseases because they are often fueled by poor diet. They tend to be considered avoidable with behavioral changes. So far, Kennedy has yet to issue any statements that indicate his focus will be on chronic diseases caused by viral infections, such as post-Lyme and the mother of them all, ME, which are not behavioral.

Kennedy’s presidential campaign made chronic disease reduction a platform. A downside for me is that he’s is on record as pledging to ask NIH scientists to “give infectious disease a break...” NBC reported the following on November 3, eleven days before he was named by Trump for the top post at DHHS:

“Kennedy’s campaign has been supported and led by the anti-vaccine movement he helped build. In November, he credited activists at Children’s Health Defense, which he chaired until he took leave to run for president, for boosting his campaign. Accepting an award at the group’s annual conference, he said he would stop the National Institutes of Health from studying infectious diseases, like Covid and measles, and pivot it to studying chronic diseases, like diabetes and obesity. Kennedy believes environmental toxins, a category in which he places childhood vaccines, to be the major threat to public health, rather than infectious disease. 

“I’m going to say to NIH scientists, God bless you all,” Kennedy said at the time. “Thank you for public service. We’re going to give infectious disease a break for about eight years.” 

Given my recognition of ME as a pathogen-caused disease, I would argue that NIH scientists fail to give infectious diseases enough attention. More not less attention is desperately needed. If Kennedy belongs to what I call the Bill Maher School of Medicine, wherein most chronic disease derives solely from bad habits like poor nutrition, overeating and sloth, I doubt ME will fare well. Feel free to add to the hackneyed list of personal failings that healthy people, the “worried well” as they are known at the Mayo Clinic, think cause disease.

Social media posts seem to reflect optimism among ME sufferers and even researchers that Kennedy might cast his activist focus on ME and take it up as a cause. Certainly, Kennedy is more than a change of personnel. He has a different kind of energy. He’s the consummate outsider who may be about to enter a sea of bureaucrats who have adhered to a decades-old system of doling out research funds. This system has been rigged in such a way that ME has never seen the love.

How much does Kennedy know about ME? A great deal more than most people. RFK Jr. invited me to do a podcast with him in May of 2022. Our interview began with his assurance that he had read Osler’s Web. He took a moment to loft his Post-it Note laden, dog-eared copy into the air before our interview began. Let me now count the number of people who have not only read but have annotated my book before interviewing me: one. In our conversation, I described what ME historians consider to be evidence for a pathogen as the cause of ME. Alternatively, Kennedy floated toxic chemicals and an early polio vaccine as potential culprits. “Allow me to push back,” I said, reiterating why I think a virus is left standing as the best explanation. What might inhabitants of Akureyri in 1948, Los Angeles in 1934, and Incline Village in 1984 have had in common?

Near the end of the interview, Kennedy said, “I don’t believe it’s a toxic chemical, either. I think it’s viral. That’s my core belief. I can’t support it.” But then he asked, “How do you start a viral epidemic?” Not wishing to be insolent, I thought but did not say, “With a virus.” But he continued, “It’s a process of elimination,” and then returned to toxic chemicals.

Kennedy also noted that the NIH wastes money on looking for genetic explanations for far too many problems, including autism, which I considered heartening. Certainly, having two XX chromosomes is a serious risk factor for ME. Aside from that, in my observation—and I could be wrong—searches for genetic predispositions in the field of ME have generated little actionable information.

Ultimately, Kennedy might be a champion for people with ME if for no other reason that he understands like few others in public life that NIH, CDC and FDA often get things terribly wrong. He is a skeptic who judges the federal health agencies as they should be judged. They are agencies led by administrators who sometimes waste money pursuing hypotheses that do not bear fruit, who are often subject to extraordinary bias and who may even commit malfeasance. The government’s health agencies should be assessed and monitored by the press with the same attentive oversight the press brings to their coverage of other federal agencies like the Justice, Commerce, Labor, Housing and Urban Development and Treasury departments. There is no reason to suspend critical faculties and genuflect when these agencies declare white is black, or black is white. Their “public messaging” requires close scrutiny.

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Expect more news about DHHS in the near future. Directors of both the Centers for Disease Control and the NIH are political appointees, and every four years, they are required to submit their resignations, providing new presidents the opportunity to start fresh with their own designees.

In 2016, Trump’s choice of born-again Christian Francis Collins for NIH director came at the urging of Trump’s friend Newt Gingrich, a born-again Catholic. The right-wing Tea Party leader Gingrich and Collins are also good friends. Collins had already served for two presidential terms when Trump handed him another four years at NIH. Ultimately, Collins became the longest serving NIH director, with twelve years in the post.

Before settling on Collins, Trump considered Dr. Patrick Soon-Shiong, a billionaire South African surgeon, for the top NIH job. Soon-Shiong bought the Los Angeles Times in 2018. Much like the Washington Post billionaire owner Jeff Bezos, Soon-Shiong ordered his Los Angeles staff to spike an editorial endorsement of candidate Kamala Harris just days before the election, a decision that motivated the Times’ editorial board editor Maria Garza to resign.

In spite of his quavering singing voice, Collins liked to strum a guitar to accompany his renditions of folk songs at NIH functions. He played in a rock band composed of NIH colleagues. Once, he dropped in for ten minutes at an ME science conference in Bethesda to address an audience comprised of an abundance of ME patients. He concluded his brief comments by reading bible scripture before leaving. No matter—he was rewarded with standing ovation. It’s called Stockholm Syndrome.

Stayed tuned.

Below: my interview with RFK Jr. conducted on May 7, 2022