{"id":458683,"date":"2025-12-19T22:37:21","date_gmt":"2025-12-19T22:37:21","guid":{"rendered":"https:\/\/www.europesays.com\/us\/458683\/"},"modified":"2025-12-19T22:37:21","modified_gmt":"2025-12-19T22:37:21","slug":"rfk-jr-could-help-patients-or-could-be-a-disaster","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/us\/458683\/","title":{"rendered":"RFK Jr. could help patients, or could be a disaster."},"content":{"rendered":"

Sign up for the Slatest<\/a> to get the most insightful analysis, criticism, and advice out there, delivered to your inbox daily.<\/p>\n

When Robert F. Kennedy Jr. convened a panel on Monday to discuss \u201cchronic Lyme,\u201d many leading researchers of the disease were genuinely excited. Kennedy\u2019s Department of Health and Human Services promised to allocate more resources to understanding the disease. There was hope, among experts, that this would mean an important new chapter for Lyme research.<\/p>\n

But there\u2019s a problem: Kennedy is a conspiracy theorist with seemingly little understanding of how modern science works. It didn\u2019t emerge in Monday\u2019s roundtable, but Kennedy, for example, once claimed<\/a> Lyme disease was developed by the U.S. military as a bioweapon<\/a> in the \u201970s. He still maintains that the medical community has \u201cgaslit\u201d the public over Lyme and even asserted, without evidence, that during the Biden years, there were top officials within the U.S. Department of Health and Human Services who, due to political motivations, were \u201csaying Lyme disease did not exist.\u201d<\/p>\n

This is not an ideal mindset to bring to any medical topic, but it\u2019s particularly troubling for Lyme, given that it is already one of the most controversial diseases.<\/p>\n

Active Lyme disease, identified in the 1970s, is not a particularly mysterious illness. The tick bite that transfers the bacteria typically causes an easily identifiable bullseye rash; once spotted, symptoms, which can include fever, headaches, stiffness, and fatigue, can be resolved with a round of antibiotics. The treatment of active Lyme is fairly straightforward. But the aftermath of active Lyme remains a deeply unsettled area of science. A subset of Lyme patients go on to complain of arthritis-like joint pain, fatigue, and neurological issues for years afterward. For a smaller population, the symptoms become debilitating. Some patients grow desperate and even suicidal.<\/p>\n

Until recently, many mainstream medical professionals disputed the idea of \u201cchronic Lyme\u201d altogether, insisting that Lyme was done once it was treated with antibiotics. Any complaints the patients had afterward, they argued, likely resulted from other conditions or from psychiatric disorders, which can indeed cause severe physical symptoms. But patients don\u2019t like being told something is all in their head, particularly when their lives are falling apart over a maddeningly persistent illness. As a result, a \u201cLyme community\u201d began to form of patients who felt forced to become their own champions and validate one another\u2019s suffering. Many looked for answers outside conventional medicine.<\/p>\n

The rush of pseudoscientists, grifters, wellness influencers, and celebrity advocates into the space only made the chronic Lyme debate more fraught. Even the term \u201cchronic Lyme\u201d was, and is, highly charged: In medical literature, doctors call it Post-Treatment Lyme Disease Syndrome, in part to clarify that they are not referring to a continuous, chronic infection with the bacteria but only to a constellation of symptoms that develop and linger after confirmed bouts of Lyme disease. The people this term doesn\u2019t include are those\u2014often self-diagnosed laypeople or the patients of anti-scientific practitioners\u2014who believe that they have insidious Lyme infections missed by blood tests and persistent beyond any normal antibiotic treatment. (The research does not show any evidence for a chronic Lyme infection, experts said.) These patients never developed the rash or had any other concrete evidence of Lyme infection. These are the cases that caused many in the mainstream medical community to dismiss \u201cchronic Lyme\u201d as nonsense.<\/p>\n

But mainstream scientists weren\u2019t entirely ignoring the possibility of both undetectable and chronic Lyme, as much as Kennedy may insist otherwise. Many researchers agreed there was a need for better testing and that it was possible that real Lyme sufferers were going undiagnosed. And even in the earliest Lyme studies, experts said, the National Institutes of Health had attempted to suss out longer-term damage. The problem, said Dr. Brian Fallon, the director of the Lyme and Tick-Borne Diseases Research Center at Columbia University, was that most Lyme research dealt primarily with \u201cwell-defined\u201d patients\u2014those with telltale rashes and active infection that showed on blood tests\u2014in order to have clean, careful studies. Those patients were those with the easiest cases, with easy diagnostics and prompt treatment. The potentially messier cases, without rashes, or with long periods of infection without treatment, were not taken into account. The pace of the research moved relatively slowly, given that Lyme was never such an urgent problem. It is not deadly or contagious like Ebola or AIDS. For many patients, it\u2019s more like a temporary inconvenience.<\/p>\n

But two things changed. First, climate change has made Lyme an increasingly visible and pressing issue. As the tick population explodes across North America, Lyme has become a virtually inescapable threat in the Northeast and parts of the Midwest. Second, a global pandemic struck. In its aftermath, research institutions turned their resources to questions about COVID\u2019s long-term effects. As they did, they began to bring those same questions to other infectious diseases that might result in chronic conditions.<\/p>\n

\u201cIt shouldn\u2019t come as any surprise to the world right now that infections can cause chronic problems, because of what we have learned from long COVID,\u201d Fallon said. \u201cI think it\u2019s helped tremendously in changing the conversation. \u2026 There\u2019s a great deal of interest in looking at something that\u2019s been ignored.\u201d<\/p>\n

It is now a potent moment for Lyme research. If scientists can get the funding and resources they need to develop better diagnostics and unlock the mechanism that explains what is making chronic Lyme patients sick, it could bring profound relief to hundreds of thousands of Americans, allowing them to get the care they need. But a large part of pursuing a major medical breakthrough is separating science from pseudoscience in order to allow the scientific process to proceed with its dispassionate methods. And Kennedy has shown that he is incapable of that\u2014and is steering his HHS accordingly<\/a>.<\/p>\n

There are urgent reasons, beyond the success of future research, for the leading medical institutions in the country to try to purge the lingering anti-scientific elements in the Lyme conversation: They may actually put patients\u2019 health at risk. When confusion meets desperation, as it does when the Centers for Disease Control and the National Institutes of Health cannot provide any clarity, patients and doctors may seek out unconventional answers.<\/p>\n

\u201cA lot of these patients undergo bizarre, unapproved therapies, like extended intravenous antibiotic therapies, for months or even years,\u201d Dr. Durland Fish<\/a>, the chief executive officer of the American Lyme Disease Foundation, told Slate. \u201cA lot of them are bogus.\u201d<\/p>\n

These treatments, Fish said, can be expensive, as they usually aren\u2019t covered by insurance. And they can be deeply dispiriting when they don\u2019t work. Some patients, he said, can become depressed and even suicidal.<\/p>\n

And perhaps even more worryingly, if a patient becomes convinced they have chronic Lyme based on an influencer\u2019s videos, they may be diverted from identifying something else. Part of the reason chronic Lyme has always been controversial is that its symptoms are so nonspecific. Fatigue, brain fog, headaches, and joint pain can be caused by anemia, sleep disorders, mental illnesses, arthritis, multiple sclerosis, lupus, ALS, fibromyalgia, cancer, and many other conditions.<\/p>\n

\u201cFrom my perspective, I think the misdiagnosis and mistreatment is a bigger problem than the actual Lyme disease,\u201d he said.<\/p>\n

Now, as chronic Lyme emerges from its era of hazy theories and pseudoscience, it continues to be tainted with its previous associations. As an example, New Jersey Rep. Chris Smith, who attended Monday\u2019s hearing, slipped a provision<\/a> in the National Defense Authorization Act, which passed Wednesday, requiring the Government Accountability Office to investigate whether Lyme disease was bioengineered by the U.S. military. (Lyme disease, it should be noted, predates the United States itself by millennia.) During Monday\u2019s hearing, he complained that mainstream news media, including the Washington Post<\/a>, had portrayed him and his allies \u201clike we have a tinfoil hat on our heads.\u201d Smith is a Republican, but conspiratorial thinking on Lyme is a bipartisan problem.<\/p>\n

And few are as damaging to chronic Lyme\u2019s reputation among skeptics as Kennedy himself. As head of HHS, Kennedy has baselessly attributed deaths to the COVID vaccine<\/a>, connected both Tylenol and circumcision to autism<\/a>, and linked SSRIs to mass shootings<\/a>. In one throwaway comment in the hearing, he claimed that the antiretroviral drug developed during the AIDS epidemic under Anthony Fauci\u2019s NIH killed more people than AIDS itself.<\/p>\n

The panel he convened was similarly questionable. Participants were largely not the leading experts in Lyme research but instead patients, medical technology business owners, politicians, and people with out-there theories about the disease. One person claimed there was a connection between Lyme disease and autism\u2014something no mainstream researcher seems to find credible. Another person, who is a patient and an HHS official, asserted that had she followed standard medical Lyme treatments, \u201cI would be dead today.\u201d Lyme disease is not a fatal disease.<\/p>\n

Still, Fish, like the other experts, said that Kennedy\u2019s NIH putting more resources into understanding chronic Lyme could be extremely helpful for the thousands of Americans struggling with mysterious symptoms. These patients, he said, need answers and better diagnostic tools.<\/p>\n

\u201cThese patients have serious illnesses, and I don\u2019t blame them for raising hell about the situation,\u201d he said.<\/p>\n

Lyme is a disease that makes sense as a target for Kennedy, as obsessing over chronic illnesses is a core tenet of the \u201cMake America Healthy Again\u201d movement. Kennedy has said one of his sons developed Bell\u2019s palsy from Lyme and that one son developed severe, debilitating chronic Lyme. Kennedy is also, fittingly for his family\u2019s reputation for being full of robust outdoorsmen, a big proponent of getting outside into the woods\u2014advice being made dangerous by the ticks. He noted the \u201cspiritual\u201d value of the outdoors in his address Monday.<\/p>\n

Lyme also makes some sense as a target for the moment, when there is no epidemiological crisis such as SARS or COVID or AIDS consuming all the oxygen in the conversation. Leading experts in Lyme say people are beginning to understand the \u201cinsidious epidemic\u201d of Lyme, as Dr. John Aucott, the director of the Johns Hopkins Lyme Disease Clinical Research Center, put it. He and Fallon expressed the need not just for studies and testing but an entire built-out academic infrastructure around it. Right now, most academic programs are struggling under federal budget cuts; Lyme research is one area where Kennedy\u2019s personal interest may be of use.<\/p>\n

<\/p>\n

\"\"<\/p>\n

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For countless Americans, this could be great news. Aucott noted that he watched AIDS go from a death sentence to a manageable condition\u2014proof that painstaking, rigorous research can revolutionize the understanding and treatment of a new disease. Today, he said, some of his Lyme patients are sicker than the AIDS patients were at the end of his time treating them.<\/p>\n

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    Hopefully, Kennedy\u2019s anti-science approach will not impede the evidence-based Lyme research that comes. His sloppiness, as when he repeatedly during panel discussions conflated Lyme disease and Post-Treatment Lyme Disease Syndrome, may not carry through to actual policy. And in at least one way, experts gave Kennedy credit on something else: He\u2019s right, they said, that most people are not just sick from psychosomatic causes. \u201cThese are complex illnesses we\u2019re just starting to understand,\u201d Aucott said. \u201cThey\u2019ve got a hard-to-explain illness. That doesn\u2019t mean it\u2019s just in their heads.\u201d<\/p>\n

    But when diseases are particularly complex, and when the medical understanding of a topic shifts rapidly, it\u2019s particularly damaging to have a man who consistently undermines the mainstream scientific community as the face of its public health response. The public needs clarity from its government, not just disruption. In this case, clarity doesn\u2019t just mean validating suffering patients\u2019 frustrations. It means acknowledging the limits of our knowledge while having an open mind\u2014and focusing not on heated feelings but on the scientific process.<\/p>\n

    <\/p>\n

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