“May you live in interesting times” Apocryphal Chinese curse

What happens from here, nobody knows.

We’re living in interesting times. This blog attempts to gauge the state of ME/CFS, FM, long COVID, and similar diseases given the Trump administration’s actions at the NIH, CDC, and FDA.

It also aims to provide some background for the #MEAction Townhall, which will discuss these issues tomorrow at 2 pm PST/5 pm EST. (The town hall is being recorded.)

• Sign up for MEAction’s Feb 25th Townhall Meeting

Besides the ordinary issues with funding ME/CFS and long COVID, several pans were in the fire. A rare ME/CFS grant opportunity and two long-COVID grant opportunities had been slated to be posted at the end of last year (and were not).

Advocacy efforts like the Long COVID—ME/CFS—Post-infectious Moonshot and the push to create an Office for post-infectious diseases were also underway. MEAction should be able to tell us where they are at.

First comes a timeline, then a look at what we know about the main actors’ views regarding long COVID. (We know nothing about their views on ME/CFS/FM).

Timeline

The National Institutes of Health

On Jan 22nd, the Trump administration froze all travel. On Jan 27th, it froze all federal grants and loans, including those at the NIH, pending further review. In response to a court order, the freeze was rescinded on Jan 28th. On Feb 1st, a judge extended the order, stopping the Trump administration from freezing all grants and loans.

Indirect Funding for Medical Research Ordered Slashed

The Trump administration ordered that indirect funding for past and future medical research be dramatically slashed. A court challenge is underway.

On February 5th, the Trump administration ordered that indirect funding for universities and institutions receiving federal research grants be slashed to 15% from an average of 30-40%. Indirect costs include renting and maintaining lab space, maintaining lab equipment, computational needs, administration, compliance, financial reporting, security, heating and cleaning, etc.

Because the Trump administration’s action applies to all grants—past and future grants—if the change is implemented, it will effectively hobble, to some degree, all ongoing NIH research. The administration asserted that “indirect funds” should be capped at what the Gates Foundation charges. However, the NIH supports more expensive, lab-intensive research than the Gates Foundation, which funds many disease prevention programs.

Lawyers suing the Trump administration pointed to a $200 million neuroscience lab at the California Institute of Technology that the university had expected to use federal funds to help pay for. My understanding is that government uses broad formulas to determine the indirect funding rates for each institution based on the institution’s location, the cost of doing business there, etc.

Citing the familiar “we’re getting ripped off theme,” the Trump administration notes that universities are sometimes willing to accept charitable funding that provides less indirect funding, and asserts that cutting indirect funding will allow the NIH to do more research, not less. Administration officials have stated that they believe universities are siphoning off some of the money to use in DEI programs.

Critics of the move point out that charitable funding is the exception, not the rule, at medical research institutions and that many universities are pumping their own money into medical research. They propose that removing onerous regulations would be a more effective way of improving research efficiency.

The ripped-off theme is a common one – and extends to trade deals with other countries, universities receiving grant money, defense contracts, international organizations, etc., and it’s a powerful argument: the last thing anyone wants to be perceived as is a “sucker”.

It’s certainly possible that the indirect funding should be re-evaluated, but it should be noted that the NIH (like the US in its trade deals) is in the catbird’s seat. Because the NIH has the funds (and the US has the wealthiest markets), they should be able to dictate terms. Because the NIH is publicly funded and is closely watched, it has a strong incentive to produce as much good research as possible as well, i.e., to keep indirect costs down as much as possible.

Critics of the move state that suddenly and uniformly slashing indirect costs will have dire effects. Top medical institutions such as UCSF, Yale, and Stanford stand to lose over $100 million/year.

On February 10th, in response to a lawsuit, a judge issued a temporary restraining order blocking the Trump administration from limiting indirect funding. By February 14th, approximately a billion dollars in NIH research funding had been nixed. On February 21st, a judge, citing the potential for “irreparable harm,” also suspended the Trump administration’s gambit to cut $4 billion from NIH funding immediately. A federal court hearing has been scheduled to determine the legality and implications of the proposed cap.

Layoffs

Thus far, about 1,200 NIH employees, or about 6% of its workforce, have been fired.

The layoffs began in mid-February. Thus far, approximately 1,200 NIH employees – most of whom were on probationary status, meaning they were relatively new hires – have been let go. Uniform emails told the employees – including those with excellent evaluations – that they were fired because of poor performance.

Seven hundred staff members at the Food and Drug Administration (FDA), which oversees the approval of drugs, and 750 members of the Centers for Disease Control (CDC) were fired. Dr. Steve Monroe, a former senior CDC official, stated the firings swept up people “regardless of whether they were filling an important role in the organization or how well they were performing.”

Hobbled Grant Review Panels 

By hobbling the NIH’s review panels, the Trump administration effectively stopped most of the NIH’s future research funding.

The Trump administration administratively halted NIH research in its tracks when the Department of Health and Human Services – now led by RFK Jr. – placed an indefinite ban on grant review panels on Feb 21st. Since the vast majority of the NIH’s funding goes to grants, all of which must be reviewed – the NIH cannot fund more research without review panels. Of the 47 grant review panels scheduled to meet this week, 42 were canceled.

The Trump administration had stopped posting notices of these meetings – which is required by law – the day after Trump’s inauguration. Because the review panels cannot meet without public notice, that move also shut them out of future review panels. Jeremy Berg, who directed the National Institute of General Medical Sciences at the N.I.H. for eight years, called the move “Kafkaesque”.

Since grant review panels meet only a few times a year, researchers’ worries were accelerating. Carole LaBonne, a stem cell biologist at Northwestern University, called the disruption in funding “a crisis.” She said, “This crisis — and I’m not exaggerating by calling it a crisis — has already consumed one funding cycle … if this block to publishing in the register continues on much longer, it’s going to swallow two funding cycles, and that will put many labs out of business.”

Long COVID-Specific Actions

Long COVID Advisory Committee Terminated

Committee chair, Todd Davenport, lamented the closing of the Long COVID committee.

The Sick Times reported that the Trump Administration commanded the Department of Health and Human Services (HHS) to terminate the Secretary’s Advisory Committee on Long COVID.

The order: “The committee was composed of 14 unpaid members and, after being approved in the fall of 2023, has just been sworn in, in January 2025. The council chair, Todd Davenport, stated, “This advisory committee had the chance to meaningfully shape what policy would look like as we drive towards approved tests and treatments for Long COVID…”

Long-COVID Disability Information Removed

Two weeks ago, The Sick Times reported that the Trump administration had removed all information on long COVID-19 disability from governmental websites. Long COVID-19 is also no longer listed as a disability in the Department of Labor’s AskJAN website, which provides information for employers on how to accommodate people with disabilities, legal information, links to blogs, etc.

CDC Removes Long COVID (and Other) Data

The Sick Times reported that the Trump administration ordered the CDC to remove data from the Household Pulse Survey from its website because it contained data on gender and sexual orientation. The Household Pulse is one of the few federal efforts tracking long-COVID prevalence.

The NIH’s RECOVER Long COVID Initiative Soldiers On

In  a bit of good news, on Jan 31st, the Sick Times reported that, so far, it’s “business as usual” for the NIH’s RECOVER project. RECOVER has largely been unaffected thus far because it “operates separately from typical NIH research and grant processes.” It is funded differently, and outside contractors are largely running it.

The Main Players

President Trump on Long COVID, ME/CFS, etc.

President Trump’s views on long COVID and ME/CFS are unknown and probably immaterial as he’s shown little interest in this subject. More important are the officials he’s appointed to lead the NIH, CDC, and FDA and the actions they and Elon Musk have taken.

RFK Jr – Director of the Department of Health and Human Services

RFK Jr.

The new head of the massive Dept. of Health and Human Services (annual budget $1.6 trillion, 88,000 employees) (NIH, CDC, FDA, AHRQ, Medicare/Medicaid) may be the most puzzling figure.

A longtime Democrat who has decried the levels of pollution communities of color are exposed to, who believes the middle class is being hollowed out by policies that favor the rich, and that climate change is an existential threat, Kennedy quickly became a leading figure in the Trump administration.

Kennedy’s anti-vaccine views, his claims that mercury in vaccines causes autism, his promotion of debunked COVID-19 treatments like ivermectin and hydroxychloroquine, his endorsement of strange, conspiracy-like views (Lyme disease is a likely a military weapon, that Anthony Fauci personally profited from vaccines, that Bill Gates schemed to prolong the coronavirus pandemic) indicates that Kennedy is often far, far outside of the mainstream of scientific thought.

In 2020, Kennedy wrote the foreword to “The Plague of Corruption” by disgraced former ME/CFS researcher and vaccine conspiracist Judy Mikovits. Kennedy also reportedly told a dinner party that “COVID-19 is targeted to attack Caucasians and Black people” but that Ashkenazi Jews and Chinese are less vulnerable. In May 2021, Kennedy petitioned the FDA to rescind authorization for all current and future COVID-19 vaccines.

In his book ,The Real Anthony Fauci: Bill Gates, Big Pharma, and the War on Democracy and Public Health, Kennedy took issue with the “orthodoxy that HIV alone causes AIDS” and the “theology that HIV is the sole cause of AIDS”. He also falsely repeated the claim that no-one has isolated the HIV virion.

Notably, though, Kennedy has called for more research into chronic illnesses and said he would direct resources to long-COVID treatments and diagnostics “with enthusiasm”. Kennedy, though, has also said he wants to pause funding for infectious disease research for 8 years – not a helpful idea at all for people with post-infectious diseases.

Time will tell, but Kennedy may be aiming at HIV – which has long enjoyed outsized funding at the NIH. Last year, the NIH spent $3.3 billion, or 7% of its entire budget, on HIV/AIDS. The amount of funding HIV/AIDS receives may demonstrate better than another condition how the NIH has allowed itself to be taken over by large disease contingents. Kennedy’s penchant for battling for what he believes to be the little man could conceivably lead him to align with diseases like long COVID and ME/CFS.

Kennedy will also likely promote studies aimed at understanding the link between vaccines and the ME/CFS-like post-vaccine syndromes that can result. (Akiko Iwasaki recently published a study on post-COVID vaccine syndrome.)

Kennedy has been so all over the place that it’s difficult to know where he will land or place his attention. Despite his penchant for fringe views, though, Kennedy presents a real opportunity for people with long COVID and related diseases.

Kennedy, however, has never run a large organization, and his inability to answer basic questions about Medicaid and Medicare at his hearing raises questions about his effectiveness in carrying out his initiatives. Time will tell!

Monica Bertagnolli’s Resignation

Monica Bertagnolli – a strong, long-COVID supporter – resigned from her position as NIH Director.

Monica Bertagnolli’s resignation as NIH Director after just 14 months on the job was not a good sign for long-COVID and ME/CFS patients. Bertagnolli had gone out of her way to  support long-COVID research, supported the RECOVER Initiative’s welcome turnaround on its clinical trials, and had at least publicly supported ME/CFS research.

In short, she was a breath of fresh air after the long nightmare for ME/CFS that Anthony Fauci was. Enter Dr. Jay Bhattacharya.

Nominated NIH Director – Dr. Jay Bhattacharya

Trump’s nominee for NIH Director, Jay Bhattacharya, is a health economist and professor of medicine, economics, and health research policy at Stanford University. The Senate is expected to approve him. He has had his hits and misses.

Misses

Some of Dr. Bhattacharya ideas for reforming the NIH could be helpful. (Image from the American Institute for Economic Research – Wikimedia Commons)

Bhattacharya’s prediction early in the pandemic that the coronavirus virus would likely kill about 20,000 to 40,000 Americans was off by about 1,200,000 people. A widely criticized early study that grossly overestimated how many people had recovered suggested the disease was less deadly than it turned out to be.

The Great Barrington Declaration, which Bhattacharya co-wrote, proposed that herd immunity be adopted. Countries like Sweden, which adopted herd immunity, quickly experienced overwhelmed health services, suffered more deaths, and ultimately changed course. NIH Director Dr. Francis Collins referred to Bhattacharya and his co-authors as “fringe epidemiologists” and wrote, “This is not mainstream science. It’s dangerous. It fits into the political views of certain parts of our confused political establishment.”

Shortly after Bhattacharya declared in 2021 that the “majority of Indians have natural immunity” and discouraged vaccinations”, millions of Indians died, and India suffered amongst the highest death rates of any country.

Hits

Bhattacharya may have been wrong about the dangers of the coronavirus, but his argument that the societal costs of the measures taken during the pandemic should have been taken more into account has taken hold. Many people now agree with that.

Bhattacharya on Long COVID

Bhattacharya’s views towards long COVID are complicated by his belief that the lockdowns caused more socieoeconomic harms than benefits. As such, he believed that the costs of people getting long COVID were secondary to the educational, mental health, economic costs of the shutdowns.

Bhattacharya’s statement, “No matter what you think about how bad long COVID is, it does not justify lockdowns because the lockdowns do not prevent long COVID,” was at least partly based on his belief that younger people would quickly recover from the virus and not get long COVID. That turned out not to be true, as CDC statistics showed that many younger people (18–29-year-olds (18.4%), 30–39-year-olds (18.5%) came down with long COVID.

Whatever Bhattacharya’s past views on long COVID and post-infectious diseases are, I could find nothing on his present views.

Bhattacharya on the NIH

The NIH needs reform – could Bhattacharya be the man to do it?

The NIH’s $48 billion makes it easily the biggest medical research funder in the world. Funding approximately 50,000 grants that go to more than 300,000 researchers at 2,500 universities and other institutions, it employs nearly 18,000 people.

It’s a monolith that advocates for ME/CFS have long tried, mostly fruitlessly, to crack. There’s no doubt that from the perspective of people with ME/CFS, fibromyalgia, and long COVID, the NIH badly needs reform. Decades of dramatic underfunding for tens of millions of people have demonstrated that NIH has failed in its mission to provide support for all Americans with illnesses.

Instead of being nimble enough to attack diseases and conditions as they inevitably appear, the NIH’s funding apparatus has rewarded researchers seeking to study well-established diseases. Accordingly, it disincentivizes them from studying common, often disabling, newer diseases, like ME/CFS, fibromyalgia, and long COVID, which, as it has turned out, primarily affect women.

The NIH’s inability to do that and effectively grapple with new, complex health needs is amply demonstrated by its work with long COVID-19. Four years later, long COVID-19, like ME/CFS, still has no established place in the NIH, and the fact that the RECOVER project has spent almost a billion dollars without producing major breakthroughs in long COVID-19 speaks to the highly conservative nature that pervades the NIH.

ME/CFS, FM, and long-term COVID advocates agree with Kennedy and Bhattacharya that the NIH needs reform; the question is whether their ideas for reform align.

Dr. Dave Weldon – Centers for Disease Control (CDC)

President Trump nominated Dr. Dave Weldon to be head of the Center for Disease Control (CDC). Weldon appeared in the anti-vaccine film Vaxxed, where he questioned whether some vaccines could trigger autism. In a 2019 TV appearance, he claimed (incorrectly) that “some children can get an autism spectrum disorder from a vaccine. On the other hand, Weldon has stated that his children are fully vaccinated.

However, Weldon’s interest in post-vaccination syndromes and the reactivation of Epstein-Barr virus could prove helpful. As an internal medicine doctor, he may also have experience treating long COVID and ME/CFS.

Marty Makary – Food and Drug Administration (FDA)

In December 2022, Dr. Marty Makary, President Trump’s choice to lead the Food & Drug Administration (FDA), stated in a Dec. 2022 WSJ op-ed that long COVID is real but that its effects have been “massively exaggerated,” “overplayed,” and “not as bad as advertised,” and that the federal government was feeding over $1 billion into the “long COVID medical-industrial complex.”

MEAction’s Townhall meeting is tomorrow – the 25th.

Conclusion

We live in interesting times indeed! With its extensive contacts at the Congressional level, MEAction is well-placed to inform us about what’s going on there, what we might expect, and what we can do.

• Sign up for MEAction’s Feb 25th Townhall Meeting