PORTLAND, OR – Scientists at Oregon Health & Science University are working on a federally funded project that could turn the human eye into an early warning system for Alzheimer’s disease.
The five-year, $3.3 million award from the National Institutes of Health will support development of an experimental eye drop designed to detect a fluorescent signal from amyloid, a protein associated with Alzheimer’s. Used alongside a noninvasive retinal scanner, the approach could lead to a low-cost, widely accessible screening tool to identify the disease before symptoms appear.
“We’re looking for early-stage patients who don’t have symptoms,” said project leader Lei Wang, an assistant professor of biomedical engineering at OHSU. “The goal is to develop population-level screening involving a simple eye drop and a quick scan.”
The research is funded through a National Institute on Aging program for early-stage investigators, named for the late NIH scientist Stephen I. Katz. The project is considered high-risk, high-reward, but researchers say success could improve outcomes as new Alzheimer’s treatments work best in the earliest stages of the disease.
Alzheimer’s is typically associated with amyloid-beta and tau proteins that form plaques in the brain, contributing to cognitive decline. While brain imaging can detect amyloid, the tests are costly and not practical for routine screening.
Wang’s team aims to detect amyloid through the retina, which is directly connected to the brain and can be imaged noninvasively at cellular resolution. The researchers plan to develop a fluorescence-based molecule that could be delivered as an eye drop, making amyloid visible during a retinal scan.
“The retina is a neural sensory extension of the brain,” Wang said. “If we can detect a buildup of amyloid in the retina, it may be possible to flag early-stage Alzheimer’s among patients who aren’t yet experiencing any symptoms.”
The project brings together experts in chemistry, retinal imaging and neurology. Yifan Jian, an associate professor of ophthalmology and biomedical engineering at OHSU, will refine the ultrawide field fluorescence scanning technology to safely highlight amyloid in the retina.
If successful, the screening approach could be used in ophthalmology clinics rather than specialized medical centers, expanding access in both rural and urban areas. Patients flagged through retinal screening could then be referred to neurologists for further evaluation and brain imaging.
The research will first focus on developing and testing the fluorescent agent for safety and effectiveness in mouse models. Only after that would the project move toward human clinical trials.
“The long-term vision is something that is accurate, affordable and available in many communities,” Wang said. “Not only at large academic centers.”
Nearly 1 in 30 clinical trials were interrupted by funding cuts to the National Institutes of Health, affecting more than 74,000 patients and research into cancer, infectious disease and more, according to a newly published paper.
Clinical trials are the best way for researchers to study how medical interventions affect a patient population, doctors say.
“The types of trials that are affected are among the most rigorous way that we generate scientific evidence: randomized clinical trials,” said Dr. Anupam B. Jena, a study author and professor at Harvard Medical School. “It would be one thing if studies affected by terminated grants focused on less rigorous or important forms of research, but clinical trials are important, gold-standard in terms of evidence generation, time-intensive, and costly. Those are the last types of studies we would want to stop mid-stream.”
The paper, published Monday in JAMA Internal Medicine, found that 383 clinical trials were interrupted by the funding cuts, which Jena said was “surprisingly high” to the research team. To calculate that number, the researchers looked at all clinical trials that received NIH funding between Feb. 28, 2025, the day of the first reported grant termination, and Aug. 15, 2025. There were about 11,008 clinical trials funded by NIH grants during that time period.
More than 36% of the interrupted trials have since been completed. Another 35% were recruiting patients. About 11% of the trials were active and not recruiting patients, while 14% were active but not yet recruiting. The remaining trials were enrolling patients by invitation. Trials that had their funding interrupted had more expected participants enrolled than trials that were not affected, the researchers found.
Trials that were active and not recruiting, where participants may have been receiving interventions, had a total of 74,311 patients enrolled in them, the researchers said.
The researchers looked at the trial details to learn more about what kind of research was being interrupted. Trials conducted outside the U.S. were disproportionately affected, and within the United States, the Northeast had the highest rate of interrupted trials. More than 115 trials studying cancer were interrupted, as well as 97 trials that looked at infectious diseases. Trials studying cardiovascular diseases, mental health and reproductive health were also affected.
Jena warned that the interruptions could lead to “avoidable waste” and “impact the future willingness of patients to participate in trials.”
Jena said there is no systemic data on how often clinical trials are paused for funding lapses. Termination of federal grant funding was “exceedingly rare” before 2025, he said.
“Clinical trials aren’t light switches,” said CBS News medical contributor Dr. Céline Gounder, an editor-at-large for public health at KFF Health News. “You can’t just flip them off without consequences. Cutting off funding mid-trial wastes research dollars and puts patients at risk. This is a breach of trust with every person who volunteers for research.”
The NIH said it strongly rejected the “intentionally misleading portrayal of our grant management process” in the letter and accused the researchers of having conflicts of interest, though it did not specify what those were. The NIH highlighted the “more than 42,500 active, recruiting, or planned clinical trials across every major disease area” that it currently funds and oversees, and said the paper had a “selective focus on a handful of appropriately paused studies.”
“What they fail to mention is that NIH is undergoing a strategic realignment. We are prioritizing high-impact, high-urgency science … The biomedical research enterprise is being refocused and that’s what will keep America at the forefront of global science, safety, and innovation,” the NIH said. The agency also said the terminated or interrupted studies “likely happened because this research prioritized ideological agendas over scientific rigor and meaningful outcomes for the American people.”
The NIH is the largest funder of biomedical research. More than $2 billion in federal research grants were canceled by the NIH earlier this year as part of President Trump and the Department of Government Efficiency’s efforts to downsize the federal government. Agency spending has also been slowed, and 1,300 employees have been fired. Thousands of universities and U.S. institutions rely on NIH funding for their research.
Former NIH head Dr. Francis Collins, who led the agency for 12 years across three administrations, told CBS News in April that “every dollar that NIH gave out in 2024 to a grant is estimated to have returned $2.46 just in a year.”
“When you’re talking about medical research, when you’re talking about people’s lives, when you’re talking about clinical trials for Alzheimer’s disease or cancer that may take three or four years, you can’t just go in and decide, ‘I’m going to shut those down and maybe I’ll try something else.’ Those are people’s lives at risk,” Collins told CBS News.
Health Secretary Robert F. Kennedy Jr. has fired a top official with the National Institutes of Health who blew the whistle on internal clashes over vaccine research in the early months of the Trump administration.
On Wednesday, Dr. Jeanne Marrazzo received a letter from Kennedy — which CBS News reviewed — informing her that her role leading NIH’s National Institute of Allergy and Infectious Diseases, or NIAID, had been terminated. He did not cite a cause beyond his constitutional authority to do so. Last month, in an exclusive interview with CBS News, Marrazzo said she had been silenced when she and her colleagues pushed back against NIH officials appointed by President Trump who questioned the importance of childhood flu vaccines and canceled long-running clinical trials.
“My termination, unfortunately, shows that the leaders of HHS and the National Institutes of Health do not share my commitment to scientific integrity and public health,” Marrazzo wrote in a statement following her firing. “Congress must act to protect scientific research from those who would serve political interests first.”
Marrazzo had been in her role since August 2023, succeeding Dr. Anthony Fauci, who had served as NIAID director for nearly four decades. She was put on indefinite leave in March and filed a whistleblower complaint with the U.S. Office of Special Counsel in September, alleging illegal retaliation. In a statement, Marrazzo’s attorney alleged her firing is further “retaliation for her protected whistleblower activity.”
Despite following a well-established whistleblower process by filing a complaint with OSC, recourse for Marrazzo is far from certain. Mr. Trump fired the head of the independent agency in February and has since installed his top trade official Jamieson Greer to lead the agency on an acting basis.
In August, the office launched an ethics probe into Jack Smith, the former special counsel who indicted Mr. Trump before he returned to office for his actions around the January 6, 2021, attack on the U.S. Capitol, and for allegedly mishandling classified documents from his first term.
The allegations in Marrazzo’s whistleblower complaint focus on Dr. Matthew Memoli, who served as acting NIH director earlier this year before moving to the health agency’s No. 2 post.
Marrazzo claimed Memoli made statements downplaying the importance of vaccines that closely mirrored the views of Kennedy, a longtime vaccine skeptic. In a series of meetings, Memoli argued that “vaccines are unnecessary if populations are healthy,” and that the NIH “should not focus on vaccines,” Marrazzo alleged in her complaint.
Marrazzo told CBS News it was like “hearing the echo of” the vaccine skepticism often promoted by Kennedy. “It was extremely alarming,” Marrazzo said.
An HHS spokesperson defended Memoli to CBS News, writing in a statement: “He remains fully aligned with this administration’s vaccine priorities and consistently champions gold-standard evidence-based science.”
In June, Kennedy removed all 17 members of the Advisory Committee on Vaccine Practices, which makes vaccine recommendations to the Centers for Disease Control. He then handpicked their replacements, and the newly reconstituted panel recently voted to endorse splitting the measles, mumps, rubella and varicella vaccine into separate shots.
Michael Kaplan is an award-winning reporter and producer for the CBS News investigative unit. He specializes in securing scoops and crafting long-form television investigations. His work has appeared on “60 Minutes,” CNN and in The New York Times.
(CNN) — President Donald Trump’s strategy to ‘Make America Healthy Again’ includes investigating vaccine injuries and pharmaceutical practices but stops short of new regulatory action, for now.
US Health and Human Services Secretary Robert F. Kennedy Jr. unveiled the MAHA strategy on Tuesday, joined by Agriculture Department Secretary Brooke Rollins, Environmental Protection Agency Administrator Lee Zeldin, and other top Trump officials.
The report hews closely to a draft document circulated in August that cites earlier Trump administration announcements — developing a definition for ultraprocessed foods, educating the public about synthetic kratom — but largely bypassed industry crackdowns.
Language around pesticides strategy also remained unchanged. Environmental and food activists had rallied for the administration to include steps to reduce pesticide usage and probe potential health risks of commonly used chemicals such as RoundUp.
The report says that USDA, EPA and the National Institutes of Health will develop a framework to study cumulative exposures to chemicals including pesticides and microplastics. USDA and EPA will also invest in new farming approaches to reduce chemical use, and EPA will launch a public awareness campaign about the limited risk of approved products.
The commission’s first report this May suggested a broad range of factors driving chronic disease in the US, including ultraprocessed foods, environmental exposures, and overprescription of pharmaceuticals like antidepressants.
The report noted previous announcements that HHS, the NIH and the Centers for Medicare and Medicaid Services are studying the causes of autism. Kennedy had previously promised some answers on the root causes in September; NIH is expected to announce autism research grants this month.
Recent reports suggest that HHS will issue a report that links the development of autism to taking Tylenol during pregnancy.
Medicines and vaccines
Kennedy has drawn criticism for suggesting antidepressants, particularly those that are part of a family known as SSRIs are as addictive as heroin and can be dangerous. Following the August 27 shooting in Minneapolis, he told Fox News that HHS is launching studies “on the potential contribution of some of the SSRI drugs and some of the other psychiatric drugs that might be contributing to violence.”
SSRIs, or selective serotonin reuptake inhibitors, are the most prescribed class of antidepressants for depression, anxiety disorders and many other mental health conditions. Several SSRIs have been on the market in the United States since the 1990s, including Prozac, Zoloft and Celexa. Experts agree that there is no scientific evidence or correlation between these drugs and violence towards others.
Tuesday’s report states that HHS will assemble a working group of federal officials to evaluate SSRI prescribing patterns, specifically among children. HHS will also “evaluate the therapeutic harms and benefits of current diagnostic thresholds,” or the current common practices doctors use to diagnose patients with mental health disorders.
Dr. Theresa Miskimen Rivera, president of the American Psychiatric Association said access to care, not over-medication is the bigger problem when it comes to helping kids’ mental health in the country, and there is no mention of the issue in the report. The report said addressing a child’s nutrition, screen time, and exercise can improve their mental health, but can’t address everything. “Psychiatric conditions are complex in nature,” she said. Extreme poverty, post traumatic stress disorder, trauma-related factors should also be addressed, but there is no mention in the report of any of those issues either.
“In terms of over medication, that’s not what we do. We have a comprehensive evaluation and we are evidence based. We diagnose than create a comprehensive treatment plan, “ Miskimen Rivera told CNN. “Medication can save lives, not only in children, but in adults and elderly.”
When asked about whether or not the commission chose to consider gun violence – the leading cause of death for children – as one of the issues to be investigated, Kennedy doubled down on the issue of prescription drugs, saying “We are doing studies now, or initiating studies to look at the correlation and the connection, potential connection between over medicating our kids and this violence.”
HHS will also work with the White House Domestic Policy Council on a new vaccine framework that, the report said, will ensure “America has the best childhood vaccine schedule” and ensure “scientific and medical freedom.”
The report comes as Kennedy continues to defend his shakeup of the US Centers for Disease Control and Prevention over vaccine policy, including the ouster of CDC Director Dr. Susan Monarez.
The administration will also increase oversight of “deceptive” direct-to-consumer advertising of pharmaceutical products, including from social media influencers and telehealth companies, it said.
Food policy stays the course
FDA will continue work on developing a definition for ultraprocessed foods, but the report bypasses recommendations, like those of former FDA Director Dr. David Kessler, to essentially order certain additives off the market until they are reviewed.
Dr. Dariush Mozaffarian, director of Tufts Food is Medicine Institute said a definition of ultraprocessed foods would be “really important.” With more than half of calories in the food supply coming from ultraprocessed foods, addressing this and other issues involving the nation’s diet would mean a “massive fight with the industry and is going to be incredibly controversial, but is much needed.”
“Overall, this is really quite thorough, quite specific, and even if parts of this are accomplished, this could have tremendous positive impact for Americans,” Mozaffarian told CNN.
Other experts, like Marion Nestle, agreed the report was ambitious in scope, but noted it fell short on regulatory action. “What’s still missing is regulation. So much of this is voluntary, work with, promote, partner,” said Nestle, who is the Paulette Goddard professor emerita of nutrition, food studies and public health at New York University.
The report also nods to new, user-friendly dietary guidelines expected later this year. Kennedy has promised a vastly shortened set of recommendations that will emphasize whole foods.
The commission also cited ongoing work to reduce ultraprocessed foods in the Supplemental Nutrition Assistance Program (SNAP) and Head Start.
While the report also touches on agriculture deregulation with the aim of making it easier for small farms to get greater access to markets and schools, Ken Cook, co-founder of the Environmental Working Group, a health advocacy organization said the report abandons earlier MAHA promises to ban toxic pesticides and instead “echoes the pesticide industry’s talking points.”
“Secretary Kennedy and President Trump cynically convinced millions they’d protect children from harmful farm chemicals – promises now exposed as hollow,” Cook said in a statement.
There were minor changes from the draft document leaked in August. For instance, the August 6 draft stated that the FDA and other agencies will crack down on “Illegal Chinese Vapes,” while the final version promises enforcement on vapes more broadly.
“We support the goal of making children healthier and addressing and preventing chronic disease, but unfortunately, the recommendations fall short in some really critical ways,” Laura Kate Bender, vice president nationwide advocacy and public policy for the American Lung Association told CNN.
“They continue to cast doubt on vaccines, one of the most, important, proven public health interventions that we can have for kids health. They don’t address some major contributors to diseases in kids like pollution, tobacco use, beyond the mention of vaping, and this report is coming out at the same time that we’re continuing to see dramatic cuts in staff and funding of a lot of the programs that could make the good parts of the report a reality.”
The report’s emphasis on kids’ health can help overall, Dr. Michelle Macy, director of the Mary Ann & J. Milburn Smith Child Health Outcomes, Research and Evaluation Center in Chicago told CNN. “I’m really trying to look for bright spots in this report, and I think that the focus on data and infrastructure for us to be able to answer big questions about what environmental and food exposures and medication exposures do to shape the trajectory of someone’s health and chronic disease across the lifespan is something that has promise and potential.”
Dr. Richard Besser, pediatrician and president and CEO of the Robert Wood Johnson Foundation said that having a focus on preventing chronic disease in children is a good thing, but he said, with Kennedy’s track record that includes firing thousands of federal health employees, slashing millions in health research funding, dismantling entire offices that managed important issues like smoking and chronic disease specifically, in addition to his “assault on vaccinations” will undermine any potential good of this kind of report.
“Neither RFK Jr.’s record, nor his policies outlined in the report give me confidence that he is going to make any difference whatsoever on chronic diseases in children,” Besser told CNN.
The upheaval sparked by Health Secretary Robert F. Kennedy Jr.’s vaccine skepticism has now spread beyond the CDC to the agency that funds vaccine research. Dr. Jeanne Marazzo, former acting director for the National Institutes of Health, says she was ousted after speaking up about the importance of childhood flu vaccines.
BOSTON — Massachusetts leaders are blasting a U.S. Supreme Court court ruling that will allow the Trump administration to claw back nearly $800 million in federal grants for medical and scientific research, saying the move will hurt patients and institutions who rely on the money for lifesaving work.
A divided Supreme Court on Thursday issued an unsigned order allowing the National Institutes of Health, the largest public funding source for biomedical research in the world, to terminate federal grants linked to diversity, equity and inclusion initiatives.
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Washington — The Supreme Court on Thursday cleared the way for the Trump administration to proceed with the cancellation of National Institutes of Health research grants tied to issues like gender identity and diversity, equity and inclusion.
In a 5-4 decision, in which Justice Amy Coney Barrett sided in part with the majority, and Chief Justice John Roberts sided with the minority, the high court lifted a lower court order that required the NIH to restore hundreds of research grants that had been canceled because they were tied to these issues. The legal challenge from over a dozen states and a coalition of research groups will continue to play out in the lower court.
The divideddecision from the high court enables the administration to pull back awards that it says do not align with its policy objectives. Since returning to the White House for a second term, President Trump has directed federal agencies to cancel DEI-related grants or contracts and ensure federal funds do not go toward initiatives involving gender identity.
The dispute before the Supreme Court arose after the Department of Health and Human Services and the head of NIH issued a series of directives in February that led to the cancellation of grant awards that were connected to DEI or gender identity, as well as research topics including vaccine hesitancy, COVID and climate change.
NIH has a $47 billion budget and is considered the world’s largest funder of biomedical research.
More than 1,700 grants were canceled nationwide, including more than 800 awarded to public universities, state instrumentalities and local governments in 16 states that challenged the move. Lawyers for the Democratic state attorneys general told the Supreme Court in a filing that the sudden cancellation of the grants forced their universities to lay off or furlough employees, cut student enrollment and withdraw admissions offers.
The states and research groups challenged the grant terminations in April, arguing the move violated the Constitution and a federal law governing the agency rulemaking process. The plaintiffs sought to block NIH from ending grants and to have funding that had already been axed restored.
A federal judge in Massachusetts held a bench trial and ruled in June that the grant terminations were unlawful. The judge, William Young, who was appointed by former President Ronald Reagan, ordered that the directives from the Trump administration and resulting grant terminations be set aside.
Young found that NIH engaged in “no reasoned decision-making” in rolling out the grant terminations, and wrote there was “not a shred of evidence” to back up the administration’s claims that DEI studies are used to support discrimination on the basis of race and other protected characteristics.
The Trump administration asked the U.S. Court of Appeals for the 1st Circuit to pause the district court’s decision, which it declined to do.
Solicitor General D. John Sauer asked the high court for emergency relief last month. In his emergency appeal, the solicitor general argued that the Supreme Court had a chance to “stop errant district courts from continuing to disregard” its decisions.
Sauer pointed to an April order from the justices that cleared the way for the Department of Education to halt millions of dollars in teacher-training grants that it said funded programs that involve DEI initiatives. The high court said in that case that the Trump administration was likely to succeed in showing that the federal district court that oversaw the dispute lacked jurisdiction to order the payment of money under federal law.
The solicitor general said the judicial system does not rest on a “lower-court free-for-all where individual district judges feel free to elevate their own policy judgments over those of the Executive Branch, and their own legal judgments over those of this Court.”
But the public health groups warned that even a brief stay of the district court’s decision reinstating the grants would invalidate crucial multiyear projects that have already been paid for by Congress, “inflicting incalculable losses in public health and human life because of delays in bringing the fruits of plaintiffs’ research to Americans who desperately await clinical advancements.”
They warned that pulling the grants would do irreversible harm to public health, halting biomedical research that Congress directed NIH to fund.
“That, and the obvious harm to those who suffer from chronic or life-threatening diseases and their loved ones, must be balanced against NIH’s ill-defined monetary interests and any asserted incursion on its policymaking latitude,” the research organizations wrote in a filing.
Melissa Quinn is a politics reporter for CBSNews.com. She has written for outlets including the Washington Examiner, Daily Signal and Alexandria Times. Melissa covers U.S. politics, with a focus on the Supreme Court and federal courts.
Research into the immune system’s ability to encourage severely injured tissue to regenerate has landed a Maryland researcher on a TIME list of 2024 innovators.
NIH researcher Kaitlyn Sadtler in her Bethesda, Md. lab.(WTOP/Neal Augenstein)
NIH researcher Kaitlyn Sadtler in her Bethesda, Md. lab.(WTOP/Neal Augenstein)
Research into harnessing the ability of the body’s immune system to encourage severely injured tissue to regenerate has landed a Maryland researcher on a TIME magazine list of 2024 innovators.
The TIME100 Next list recognizes today’s most influential and innovative leaders.
During a WTOP visit to the laboratory she leads at the National Institute of Biomedical Imaging and Bioengineering, researcher Kaitlyn Sadtler, explained its goal is to understand the immune system’s role in wound healing and how it could be leveraged by medical technology to regenerate tissue.
“Our laboratory works on traumatic injury and the intersection of trying to build those broken tissues back,” said Sadtler, who grew up in Frederick — 40 miles from the National Institutes of Health campus where she works in Bethesda.
Researchers are still trying to fully understand and predict how the immune system will react. Currently, introducing medical devices, including pacemakers, knee replacements as well as chin and breast implants can elicit hostile immune responses.
However, in other cases immune responses can stimulate healing.
Sadtler said her lab’s research is “not just preventing the infection that might occur, but actually building those tissues.”
As an example, she said after a car crash, understanding the immune system could help regenerate skeletal muscles. Her research includes “learning the different materials that surgeons use to help reconstruct and regrow those tissues and organ, and how we can make better materials, to help us regenerate.”
Sadtler said the current standard of care for people with soft tissue injuries, including skin and muscle injuries, is to use grafts and transfers. That treatment requires surgeons to cause another injury, while trying to treat the larger one.
“The general goal with biomaterials and bioengineering is to be able to avoid stuff like that, and put in materials that will help use our immune cells to grow the tissue back, without having to take it from somewhere else on your body,” she said.
The lab’s research includes finding ways to complete a repair, while steering the immune system toward stimulating reparative processes.
As an example, Sadtler displayed a small container of polyethylene, a plastic used to make orthopedic implants that can trigger long-term inflammation and scarring as small pieces of it are shed into surrounding tissues. Often those implants need to be removed and replaced.
Another small bottle contained decellularized small intestinal submucosa — pig tissue that has been stripped of its cells, leaving behind mostly collagen. While natural biomaterials might not be suitable for all medical applications, she said researchers are learning about the possibilities.
“If we can design materials that our immune system likes, won’t reject and will accept into body, we can avoid those issues” of inflammation and scarring.
Sadtler said the study of the immune system’s role in regenerating tissue is ongoing from the lab setting, ranging from a Petri dish to preclinical trials, including Sadtler’s group study on stimulating the regeneration of leg muscles in mice, published last year in the journal Nature Materials.
“We want to make therapies for humans,” said Sadtler. “There have been clinical products that have been put into people, and these are used in hospital around the globe that are growing those tissues back.”
With her lab’s current research on the body’s immune system, “we’re trying to improve on those materials, and learn from the ones that work and get them to work better.”
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A federal department wants more control over legal cannabis- but until it rescheduled or more, there hands are tied.
Legal marijuana has turned out to be surprisingly popular. It has been embraced by all ages for fun, to manage anxiety, to help sleep, for pain and more. Gen Z has started a trend of moving away from alcohol and toward the healthier cannabis. Boomers, guided by AARP, are embracing it for a variety of medical benefits and for enjoyment. But now a federal agency has come out to say the government needs to have more say in stregthen and products. The issue, until rescheduling or decriminalization, they don’t have the authority. So this is just more mainstream pressure for the federal government to accept cannabis as part of today.
Both presidential candidates along with VP candidate Tim Walz have said they are for moving cannabis forward. But have made statements of support, but no real clear action. When asked should marijuana be legalized across the U.S. for recreational and medical use, he replied.
“Well, I think it’s an issue for the states on some of those, and that’s the way the states have done it,” Walz, the former Minnesota’s governor and Congressman said, dodging the question.
Photo by Darren Halstead via Unsplash
But with more people using, especial for medical, and a state patchwork of products, strengthand dosage, it is a bit messy. States have oversight, but not the same resources as the federal movement. Health and Human Services and the Food and Drug Administration are for rescheduling and oversight. Now the Center for Disease Control and Prevention are adding their voice. They released a report about what needs to happen, but nothing can be done until the federal government has a big voice.
“We’d like the federal government to step up to provide some leadership in this area,” said Dr. Steven Teutsch of the University of Southern California, who chaired the committee behind the National Academies of Sciences, Engineering and Medicine report. The CDC and the National Institutes of Health sponsored the report. A CDC spokesperson said Thursday that the agency would study the recommendations and that more money would be needed to implement them.
Aaron Smith of the National Cannabis Industry Association said states have protected public health by replacing criminal markets with regulated businesses “that are required to test products for contaminants, practice truth in labeling, and most importantly, keep cannabis products out of the hands of minors.” Making cannabis legal nationally would improve public health through federal regulation, Smith said.
In the 1970s, they tried lithium. Then it was zinc and THC. Anti-anxiety drugs had their turn. So did Prozac and SSRIs and atypical antidepressants. Nothing worked. Patients with anorexia were still unable to bring themselves to eat, still stuck in rigid thought patterns, still chillingly underweight.
A few years ago, a group led by Evelyn Attia, the director of the Center for Eating Disorders at New York Presbyterian Hospital and the New York State Psychiatric Institute, tried giving patients an antipsychotic drug called olanzapine, normally used to treat schizophrenia and bipolar disorder, and known to cause weight gain as a side effect. Those patients in her study who were on olanzapine increased their BMI a bit more than others who were taking a placebo, but the two groups showed no difference in their cognitive and psychological symptoms. This was the only medication trial for treating anorexia that has shown any positive effect at all, Attia told me, and even then, the effects were “very modest.”
Despite nearly half a century of attempts, no pill or shot has been identified to effectively treat anorexia nervosa. Anorexia is well known to be the deadliest eating disorder; the only psychiatric diagnosis with a higher death rate is opioid-use disorder. A 2020 review found people who have been hospitalized for the disease are more than five times likelier to die than their peers without it. The National Institutes of Health has devoted more than $100 million over the past decade to studying anorexia, yet researchers have not found a single compound that reliably helps people with the disorder.
Other eating disorders aren’t nearly so resistant to treatment. The FDA has approved fluoxetine (a.k.a. Prozac) to treat bulimia nervosa and binge-eating disorder (BED); doctors prescribe additional SSRIs off-label to treat both conditions, with a fair rate of success. An ADHD drug, Vyvanse, was approved for BED within two years of the disorder’s official recognition. But when it comes to anorexia, “we’ve tried, I don’t know, eight or 10 fundamentally different kinds of approaches without much in the way of success,” says Scott Crow, an adjunct psychology professor at the University of Minnesota and the vice president of psychiatry for Accanto Health.
The discrepancy is puzzling to anorexia specialists and researchers. “We don’t fully understand why medications work so differently in this group, and boy, do they ever work differently,” Attia told me. Still, experts have some ideas. Over the past few decades, they have been learning about the changes in brain activity that accompany anorexia. For example, Walter Kaye, the founder and executive director of the Eating Disorders Program at UC San Diego, told me that the neurotransmitters serotonin and dopamine, both of which are involved in the brain’s reward system, seem to act differently in anorexia patients.
Perhaps some underlying differences in brain chemistry and function play a role in anorexia patients’ extreme aversion to eating. Or perhaps, the experts I spoke with suggested, these brain changes are at least in part a result of patients’ malnourishment. People with anorexia suffer from many effects of malnutrition: Their bones are more brittle; their brain is smaller; their heart beats slower; their breath comes shorter; their wounds fail to heal. Maybe their neurons respond differently to psychoactive drugs too.
Psychiatrists have found that many patients with anorexia don’t improve with treatment even when medicines are prescribed for conditions other than their eating disorder. If an anorexia patient also has anxiety, for example, taking an anti-anxiety drug would likely fail to relieve either set of symptoms, Attia told me. “Time and again, investigators have found very little or no difference between active medication and placebo in randomized controlled trials,” she said. The fact that fluoxetine seems to help anorexia patients avoid relapse—but only when it’s given after they’ve regained a healthy weight—also supports the notion that malnourished brains don’t respond so well to psychoactive medication. (In that case, the effect might be especially acute for people with anorexia nervosa, because they tend to have lower BMIs than people with other eating disorders.)
Why exactly this would be true remains a mystery. Attia noted that proteins and certain fats have been shown to be crucial for brain function; get too little of either, and the brain might not metabolize drugs in expected ways. Both she and Kaye suggested a possible role for tryptophan, an amino acid that humans get only from food. Tryptophan is converted into serotonin (among other things) when we release insulin after a meal, Kaye said, but in anorexia patients, whose insulin levels tend to be low, that process could end up off-kilter. “We suspect that that might be the reason why [SSRIs] don’t work very well,” he said, though he emphasized that the theory is very speculative.
In the absence of meaningful pharmacologic intervention, doctors who treat anorexia rely on methods such as nutrition counseling and psychotherapy. But even non-pharmaceutical interventions, such as cognitive behavioral therapy, are more effective at treating bulimia and binge-eating disorder than anorexia. Studies from around the world have shown that as many as half of people with anorexia relapse.
Colleen Clarkin Schreyer, a clinical psychologist at Johns Hopkins University, sees both patients with anorexia nervosa and those with bulimia nervosa, and told me that the former can be more difficult to treat—“but not just because of the fact that we don’t have any medication to help us along. I often find that patients with anorexia nervosa are more ambivalent about making behavior change.” Bulimia patients, she said, tend to feel shame about their condition, because binge eating is stigmatized and, well, no one likes vomit. But anorexia patients might be praised for skipping meals or rapidly losing weight, despite the fact that their behaviors can be just as dangerous over the long term as binging and vomiting.
Researchers are still trying to find substances that can help anorexia patients. Crow told me that case studies testing a synthetic version of leptin, a naturally occurring human hormone, have produced interesting data. Meanwhile, some early research into using psychedelics, including ketamine, psilocybin, and ayahuasca, suggests that they may relieve some symptoms in some cases. But until randomized, controlled trials are conducted, we won’t know whether or how well any psychedelic really works. Kaye is currently recruiting participants for such a study of psilocybin, which is planned to have multiple sites in the U.S. and Europe.
Pharmaceutical companies just don’t seem that enthusiastic about testing treatments for anorexia, Crow said. “I think that drug makers have taken to heart the message that the mortality is high” among anorexia patients, he told me, and thus avoid the risk of having deaths occur during their clinical trials. And drug development isn’t the only area where the study of anorexia has fallen short. Research on eating disorders tends to be underfunded on the whole, Crow said. That stems, in part, from “a widely prevailing belief that this is something that people could or should just stop … I wish that were how it works, frankly. But it’s not.”
The Biden administration has suspended funding for the Wuhan Institute of Virology following a monthslong review that determined that the Chinese research institute “is not compliant with federal regulations and is not presently responsible,” according to a memo from the Department of Health and Human Services.
HHS, which conducted the review, also proposed barring the Wuhan Institute from doing business with the federal government going forward, according to the memo, which is dated to Monday and was first reported by Bloomberg.
The lab has not received any federal funding from the US National Institutes of Health since July 2020, according to an HHS spokesperson.
The determination came after the research institute failed to provide the National Institutes of Health with requested documents amid reported safety concerns at the lab.
“This action aims to ensure that WIV does not receive another dollar of federal funding,” an HHS spokesperson said in a statement. “The move was undertaken due to WIV’s failure to provide documentation on WIV’s research requested by NIH related to concerns that WIV violated NIH’s biosafety protocols.”
In Monday’s memorandum, HHS’s deputy assistant secretary for acquisition concludes that the Wuhan Institute’s “disregard of the NIH’s requests” and the NIH’s conclusion that the institute’s research likely violated biosafety protocols present a risk that the institute “not only previously violated, but is currently violating, and will continue to violate, protocols of the NIH on biosafety.”
“Therefore, I have determined that the immediate suspension of WIV is necessary to mitigate any potential public health risk,” the official, whose name is redacted, writes in the memo.
The Wuhan Institute of Virology is at the center of a theory that Covid-19 escaped from the lab in late 2019, triggering the global pandemic.
The US intelligence community has yet to reach a conclusion about where the virus originated. The Office of the Director of National Intelligence released a declassified report last month that stated the US intelligence community could not determine whether researchers at the lab who fell ill in the fall of 2019 were infected with Covid-19, but identified safety and security issues at the lab. Many other experts say evidence suggests that the coronavirus likely emerged naturally and spread to humans in a Wuhan seafood market.
The National Institutes of Health notified EcoHealth Alliance – a US-based organization that received a 2014 grant from NIH that was partly funneled to the Wuhan Institute – in April 2020 that it was reviewing allegations linking the Wuhan Institute to the coronavirus pandemic. And in July of that year, NIH told EcoHealth it had received reports of “biosafety concerns” at the lab.
Kira Stoops lives in Bozeman, Montana—a beautiful mountain town where it sometimes feels like everyone regularly goes on 50-mile runs. Stoops, however, can’t walk around her own block on most days. To stand for more than a few minutes, she needs a wheeled walker. She reacts so badly to most foods that her diet consists of just 12 ingredients. Her “brain fog” usually lifts for a mere two hours in the morning, during which she can sometimes work or, more rarely, see friends. Stoops has myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). “I’m considered a moderate patient on the mild side,” she told me.
ME/CFS involves a panoply of debilitating symptoms that affect many organ systems and that get worse with exertion. The Institute of Medicine estimates that it affects 836,000 to 2.5 million people in the U.S. alone, but is so misunderstood and stigmatized that about 90 percent of people who have it have never been diagnosed. At best, most medical professionals know nothing about ME/CFS; at worst, they tell patients that their symptoms are psychosomatic, anxiety-induced, or simply signs of laziness. While ME/CFS patients, their caregivers, and the few doctors who treat them have spent years fighting for medical legitimacy, the coronavirus pandemic has now forced the issue.
A wide variety of infections can cause ME/CFS, and SARS-CoV-2, the coronavirus that causes COVID-19, is no different: Many cases of long COVID are effectivelyME/CFS by another name. The exact number is hard to define, but past studies have shown that 5 to 27 percent of people infected by variouspathogens, including Epstein-Barr virus and the original SARS, develop ME/CFS. Even if that proportion is 10 times lower for SARS-CoV-2, the number of Americans with ME/CFS would still have doubled in the past three years. “We’re adding an immense volume of patients to an already dysfunctional and overburdened system,” Beth Pollack, a scientist at MIT who studies complex chronic illnesses, told me.
The U.S. has so few doctors who truly understand the disease and know how to treat it that when they convened in 2018 to create a formal coalition, there were only about a dozen, and the youngest was 60. Currently, the coalition’s website lists just 21 names, of whom at least three have retired and one is dead, Linda Tannenbaum, the CEO and president of the Open Medicine Foundation, told me. These specialists are concentrated on the coasts; none work in the Midwest. American ME/CFS patients may outnumber the population of 15 individual states, but ME/CFS specialists couldn’t fill a Major League Baseball roster. Stoops, who is 39, was formally diagnosed with ME/CFS only four years ago, and began receiving proper care from two of those specialists—Lucinda Bateman of the Bateman Horne Center and David Kaufman from the Center for Complex Diseases. Bateman told me that even before the pandemic, she could see fewer than 10 percent of the patients who asked for a consultation. “When I got into those practices, it was like I got into Harvard,” Stoops told me.
ME/CFS specialists, already overwhelmed with demand for their services, now have to decide how to best use and spread their knowledge, at a time when more patients and doctors than ever could benefit from it. Kaufman recently discharged many of the more stable ME/CFS patients in his care—Stoops among them—so that he could start seeing COVID long-haulers who “were just making the circuit of doctors and getting nowhere,” he told me. “I can’t clone myself, and this was the only other way to” make room for new patients.
Bateman, meanwhile, is feverishly focused on educating other clinicians. The hallmark symptom of ME/CFS—post-exertional malaise, or PEM—means even light physical or mental exertion can trigger major crashes that exacerbate every other symptom. Doctors who are unfamiliar with PEM, including many now running long-COVID clinics, can unwittingly hurt their patients by encouraging them to exercise. Bateman is racing to spread that message, and better ways of treating patients, but that means she’ll have to reduce her clinic hours.
These agonizing decisions mean that many existing ME/CFS patients are losing access to the best care they had found so far—what for Stoops meant “the difference between being stuck at home, miserable and in pain, and actually going out once or twice a day, seeing other humans, and breathing fresh air,” she told me. But painful trade-offs might be necessary to finally drag American medicine to a place where it can treat these kinds of complex, oft-neglected conditions. Kaufman is 75 and Bateman is 64. Although both of them told me they’re not retiring anytime soon, they also won’t be practicing forever. To make full use of their expertise and create more doctors like them, the medical profession must face up to decades spent dismissing illnesses such as ME/CFS—an overdue reckoning incited by long COVID. “It’s a disaster possibly wrapped up in a blessing,” Stoops told me. “The system is cracking and needs to crack.”
Many ME/CFS specialists have a deep knowledge of the disease because they’ve experienced it firsthand. Jennifer Curtin, one of the youngest doctors in the field, has two family members with the disease, and had it herself for nine years. She improved enough to make it through medical school and residency training, which showed her that ME/CFS “just isn’t taught,” she told me. Most curricula don’t include it; most textbooks don’t mention it.
Even if doctors learn about ME/CFS, America’s health-care system makes it almost impossible for them to actually help patients. The insurance model pushes physicians toward shorter visits; 15 minutes might feel luxurious. “My average visit length is an hour, which doesn’t include the time I spend going over the patient’s 500 to 1,700 pages of records beforehand,” Curtin said. “It’s not a very scalable kind of care.” (She works with Kaufman at the Center for Complex Diseases, which bills patients directly.) This also explains why the cohort of ME/CFS clinicians is aging out, with little young blood to refresh them. “Hospital systems want physicians to see lots of patients and they want them to follow the rules,” Kaufman said. “There’s less motivation for moving into areas of medicine that are more unknown and challenging.”
ME/CFS is certainly challenging, not least because it’s just “one face of a many-sided problem,” Jaime Seltzer, the director of scientific and medical outreach at the advocacy group MEAction, told me. The condition’s root causes can also lead to several distinct but interlocking illnesses, including mast cell activation syndrome, Ehlers-Danlos syndrome, fibromyalgia, dysautonomia (usually manifesting as POTS), and several autoimmune and gastrointestinal disorders. “I’m still amazed at how often patients come in with Complaint No. 1, and then I find five to seven of the other things,” Kaufman said. These syndromes collectively afflict many organ systems, which can baffle doctors who’ve specialized in just one. Many of them disproportionately affect women, and are subject to medicine’s long-standing tendency to minimize or psychologize women’s pain, Pollack told me: An average woman with Ehlers-Danlos syndrome typically spends 16 years getting a diagnosis, while a man needs only four.
People with long COVID might have many of these conditions and not know about any—because their doctors don’t either. Like ME/CFS, they rarely feature in medical training, and it’s hard to “teach someone about all of them when they’ve never heard of any of them,” Seltzer said. Specialists like Bateman and Kaufman matter because they understand not just ME/CFS but also the connected puzzle pieces. They can look at a patient’s full array of symptoms and prioritize the ones that are most urgent or foundational. They know how to test for conditions that can be invisible to standard medical techniques: “None of my tests came back abnormal until I saw an ME/CFS doctor, and then all my tests came back abnormal,” said Hannah Davis of the Patient-Led Research Collaborative, who has had long COVID since March 2020.
ME/CFS specialists also know how to help, in ways that are directly applicable to cases of long COVID with overlapping symptoms. ME/CFS has no cure but can be managed, often through “simple, inexpensive interventions that can be done through primary care,” Bateman told me. Over-the-counter antihistamines can help patients with inflammatory problems such as mast cell activation syndrome. Low doses of naltrexone, commonly used for addiction disorders, can help those with intense pain. A simple but rarely administered test can show if patients have orthostatic intolerance—a blood-flow problem that worsens other symptoms when people stand or sit upright. Most important, teaching patients about pacing—carefully sensing and managing your energy levels—can prevent debilitating crashes. “We don’t go to an ME/CFS clinic and walk out in remission,” Stoops told me. “You go to become stabilized. The ship has 1,000 holes, and doctors can patch one before the next explodes, keeping the whole thing afloat.”
That’s why the prospect of losing specialists is so galling. Stoops understands why her doctors might choose to focus on education or newly diagnosed COVID long-haulers, but ME/CFS patients are “just so lost already, and to lose what little we have is a really big deal,” she said. Kaufman has offered to refer her to generalist physicians or talk to primary-care doctors on her behalf. But it won’t be the same: “Having one appointment with him is like six to eight appointments with other practitioners,” she said. He educates her about ME/CFS; with other doctors, it’s often the other way round. “I’m going to have to work much harder to receive a similar level of care.”
At least, she will for now. The ME/CFS specialists who are shifting their focus are hoping that they can use this moment of crisis to create more resources for everyone with these diseases. In a few years, Bateman hopes, “there will be 100 times more clinicians who are prepared to manage patients, and many more people with ME/CFS who have access to care.”
For someone who is diagnosed with ME/CFS today, the landscape already looks very different than it did just a decade ago. In 2015, the Institute of Medicine published a landmark report redefining the diagnostic criteria for the disease. In 2017, the CDC stopped recommending exercise therapy as a treatment. In 2021, Bateman and 20 other clinicians published a comprehensive guide to the condition in the journal of the Mayo Clinic. For any mainstream disease, such events—a report, a guideline revision, a review article—would be mundane. For ME/CFS, they felt momentous. And yet, “the current state of things is simply intolerable,” Julie Rehmeyer, a journalist with ME/CFS, told me. Solving the gargantuan challenge posed by complex chronic diseases demands seismic shifts in research funding, medical training, and public attitudes. “Achieving shifts like that takes something big,” Rehmeyer said. “Long COVID is big.”
COVID long-haulers have proved beyond any reasonable doubt that acute viral infections can leave people chronically ill. Many health-care workers, political-decision makers, and influencers either know someone with long COVID or have it themselves. Even if they still don’t know about ME/CFS, their heightened awareness of post-viral illnesses is already making a difference. Mary Dimmock’s son developed ME/CFS in 2011, and before the pandemic, one doctor in 10 might take him seriously. “Now it’s the flip: Only one doctor out of 10 will be a real jerk,” Dimmock told me. “I attribute that to long COVID.”
But being believed is the very least that ME/CFS patients deserve. They need therapeutics that target the root causes of the disease, which will require a clear understanding of those causes, which will require coordinated, well-funded research—three things ME/CFS has historically lacked. But here, too, “long COVID is going to be a catalyst,” Amy Proal, the president of the Polybio Research Foundation, told me. She is leading the Long Covid Research Initiative—a group of scientists, including ME/CFS researchers, that will use state-of-the-art techniques to see exactly how the new coronavirus causes long COVID, and rapidly push potential treatments through clinical trials. The National Institutes of Health has also committed $1.15 billion to long-COVID research, and while some advocates are concerned about how that money will be spent, Rehmeyer notes that the amount is still almost 80 times greater than the paltry $15 million spent on ME/CFS every year—less than any other disease in the NIH’s portfolio, relative to its societal burden. “Even if 90 percent is wasted, we’d be doing a lot better,” she said.
While they wait for better treatments, patients also need the medical community to heed the lessons that they and their clinicians have learned. For example, the American Academy for Family Physicians website still wrongly recommends exercise therapy and links ME/CFS to childhood abuse. “That group of doctors is very important to these patients,” Dimmock said, “so what does that say to them about what this disease is all about?”
Despite all evidence to the contrary, many clinicians and researchers still don’t see ME/CFS as a legitimate illness and are quick to dismiss any connection between it and long COVID. To ensure that both groups of patients get the best possible treatments, instead of advice that might harm them, ME/CFS specialists are working to disseminate their hard-won knowledge. Bateman and her colleagues have been creating educational resources for cliniciansand patients, continuing-medical-education courses, and an online lecture series. Jennifer Curtin has spent two years mapping all the decisions she makes when seeing a new patient, and is converting those into a tool that other clinicians can use. As part of her new start-up, called RTHM, she’s also trying to develop better ways of testing for ME/CFS and its related syndromes, of visualizing the hefty electronic health records that chronically ill patients accumulate, and of tracking the treatments they try and their effects. “There are a lot of things that need to be fixed for this kind of care to be scalable,” Curtin told me.
Had such shifts already occurred, the medical profession might have had more to offer COVID long-haulers beyond bewilderment and dismissal. But if the profession starts listening to the ME/CFS community now, it will stand the best chance of helping people being disabled by COVID, and of steeling itself against future epidemics. Pathogens have been chronically disabling people for the longest time, and more pandemics are inevitable. The current one could and should be the last whose long-haulers are greeted with disbelief.
New centers that cater to ME/CFS patients are already emerging. RTHM is currently focused on COVID long-haulers but will take on some of David Kaufman’s former patients in November, and will open its waiting list to the broader ME/CFS community in December. (It is currently licensed to practice in just five states but expects to expand soon.) David Putrino, who leads a long-COVID rehabilitation clinic in Mount Sinai, is trying to raise funds for a new clinic that will treat both long COVID and ME/CFS. He credits ME/CFS patients with opening his eyes to the connection between long COVID and their condition.
Every ME/CFS patient I’ve talked with predicted long COVID’s arrival well before most doctors or even epidemiologists started catching up. They know more about complex chronic illnesses than many of the people now treating long COVID do. Despite having a condition that saps their energy, many have spent the past few years helping long-haulers navigate what for them was well-trodden terrain: “I did barely anything but work in 2020,” Seltzer told me. Against the odds, they’ve survived. But the pandemic has created a catalytic opportunity for the odds to finally be tilted in their favor, “so that neither patients nor doctors of any complex chronic illness have to be heroes anymore,” Rehmeyer said.
