+100%-

During public testimony before the Senate, RFK Jr. committed to prioritizing long-term COVID research, not just any long-term COVID research. When Senator Young noted that so much RECOVER funding was going to “observational research” and asked Kennedy if he would prioritize funding for treatment trials and research that would produce biomarkers, Kennedy said, “Absolutely, Senator, with enthusiasm.”

wasted-money

Years of work would have been wasted.

“Burning Dollars”

Two days ago, #MEAction reported that the DHHS stopped all funding for the $45 million for long-COVID RECOVER grants devoted to finding biomarkers, producing biological diagnostic criteria, and uncovering insights that could lead to treatments. All that RECOVER had left were the observational studies and some treatment trials.

The studies were on their last legs with only data analysis to do, and the papers left to write. Unless something really strange happens, such as fraud or misuse of funds—neither of which the Trump administration alleges—researchers are typically guaranteed funding throughout the life of the grant. Research grants are not contracts, though, and while grantees can appeal, the wording of the notice made it clear that any appeals will not be successful.

With the studies almost complete, the Trump administration gained little by cutting off its funding. It did, though, leave tens of millions of dollars on the table for studies that would have helped understand long COVID—and possibly, ME/CFS and other post-infectious diseases as well.

Meghan Fitzgerald, a researcher and person with long COVID, told C&EN, “It’s crazy to cut off a study at this point. I know there’s pushback, saying we need to have more fiscal responsibility. But this is the opposite of fiscal responsibility. You’re just burning dollars here.”

THE GIST

  • During his Senate hearing, RFK Jr. promised he would “enthusiastically” support more efforts to understand the physiology undergirding long-term COVID-19.
  • A couple of days ago, the Department of Health and Human Services that Kennedy leads sent notices to almost four dozen RECOVER-funded researchers informing them their grants—the only ones specifically designed to understand long-term COVID-19 pathophysiology – had been canceled because they did not fit the priorities of the Trump administration.
  • Because this came as the researchers were in the last stages of completing their grants, the cancellations nullified years of work and tens of millions of dollars spent. Then, yesterday, the C&EN website stated that the grant cancellations had suddenly been canceled – and the grants were back on! The Long COVID Advocacy Group reported that the efforts of several senators paid off.
  • Last week, the Trump administration closed the Office of Long COVID Research and Practice (OLC), which had effectively coordinated long-COVID efforts across the government. The Long COVID Advocacy Group stated, “The team was deeply empathetic, mission-driven, and understood the urgency of the crisis we are living through. It was the first and only government entity with the ability to … finally treat Long COVID like the systemic, multisector challenge it is…We had many efforts underway and ready to launch…That’s all gone now.”
  • A DHHS spokesperson’s response suggests the Trump administration does not believe long COVID is a chronic disease or, indeed, is real. She stated, “HHS is prioritizing funding projects that will deliver on President Trump’s mandate to address our chronic disease epidemic and Make America Healthy Again. The COVID-19 pandemic is over, and HHS will no longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago.”
  • Three weeks ago, Ian Lipkin’s NIH-funded Center for Solutions for ME/CFS got caught in the crossfire when the Trump administration, accusing Columbia University of anti-Semitic actions, abruptly yanked $400 million in mostly medical funding from the University. 
  • Columbia agreed to overhaul its policies, but the Trump administration has yet to restore full funding. Yesterday, Fierce Biotech reported that Ian Lipkin’s ME/CFS Center was laying off staff at a time when Lipkin asserted that “we’ve begun to see light at the end of the tunnel” and was even in talks “with several biotechs, as well as the broader NIH-supported ME/CFS research network, to discuss working together on potential clinical trials”.
  • Neither the two National Institute for Neurological Disorders and Stroke (NINDS) grants for post-infectious diseases, including long COVID and ME/CFS, nor a separate grant package for ME/CFS that was scheduled to be announced in December, have shown up.
  • On March 25th, the Trump administration has stopped funding $577 million of studies by the Antiviral Drug Discovery Centers for Pathogens of Pandemic Concern (AViDD) that produce vaccines and antivirals for the coronavirus and a host of other viruses (paramyxoviruses, bunyaviruses, togaviruses, filoviruses, picornaviruses, and flaviviruses) and prepare for the next pandemic.
  • At least two of the eight federally funded Serological Sciences Centers of Excellence that tracked immune responses to the virus in COVID-19 and long-term COVID patients were also terminated.
  • With one hand of the Trump administration not aware of what the other hand is doing – and battles taking place within the administration about which course to take – only time will tell what ultimately happens to long COVID, ME/CFS, and post-infectious diseases at the NIH.
  • There was hope that an NIH reorganization would help diseases like ME/CFS and long COVID-19, but that now looks dim with political views now guiding research funding. All NIH funding initiatives will now have to pass muster with one DOGE and one DHHS employee. The Trump administration’s actions suggest that many topics (long COVID, antivirals, pathogen research, vaccines) will not be rejected.
  • A few months have brought remarkable change. Last year, Director Bertagnolli was excited about making a difference with long-COVID research, the RECOVER Initiative had received an infusion of $500 million, the federal long-COVID office was apparently clicking on all cylinders, efforts to create a billion-dollar-a-year post-infectious disease moonshot and a new Center for post-infectious diseases were underway, and post-infectious disease and ME/CFS grant packages were on the docket.
  • All that seems like it’s at risk now. The NIH workforce is being cut, its funding is under attack, long COVID is fighting for its life, pathogen, antiviral and vaccine research is being nixed, billions of dollars of NIH grants are still being held up, and somehow, one DOGE and one DHHS employee are going to determine the fate of all NIH initiatives.
  • If you feel these actions will not support ME/CFS, long-COVID, and post-infectious disease research, you can take action by calling your congressional officials to tell them to keep long-COVID and ME/CFS research funding, and push back against DOGE employees deciding the fate of NIH funding initiatives, etc. Medical research has traditionally been a bipartisan issue, and contacting our representatives, particularly those in the House, where the margins are razor thin, can help. Check out #MEAction’s Long COVID Campaign’s toolkit here.

 

Grants Restored? (or, Is This Any Way to Run the NIH?)

Yesterday, C&EN reported that the RECOVER grants appear to have been restored. They’re the only news outlet to do so. Still, let’s breathe a big sigh of relief and then wonder a bit at what the heck is going on in the Trump administration. In truth, it hasn’t been uncommon to find different parts of the Trump administration at odds with each other, but this swing of events – from outright cancellation to reinstatement within a few days – was remarkable, even for it. Not surprisingly, neither the NIH nor the Department of Health and Human Services (HHS) felt compelled to explain how the sausage got made in this case.

The Long COVID Campaign told C&EN yesterday that several senators, particularly those on the Committee on Health, Education, Labor, and Pensions (HELP) (Senators Young and Kaine), HELP Chair Cassidy, and Ranking Member Sanders worked to preserve the grants. Furthermore, they stated that “HHS Secretary Kennedy and NIH Director Bhattacharya’s action today on RECOVER research funding will make a powerful difference for the over 17 million Americans with Long COVID, especially pediatric patients.”

All we know is that some faction that was out to get long COVID got squashed in the process, and that’s good news for long COVID moving forward. Not that everything is hunky dory, though.

Trump Administration Closes Office of Long COVID Research 

Whacking the Long COVID Office

The Trump administration whacked another long-COVID effort.

On March 25th, the Scientific American reported that “on orders of the Trump administration, the Department of Health and Human Services (DHHS) is shutting down The Office of Long COVID Research and Practice (OLC).” The Office coordinated long-COVID activities across the DHHS and was apparently quite effective.

The Long COVID Advocacy Project wrote:

“The Office was our strongest ally. The team was deeply empathetic, mission-driven, and understood the urgency of the crisis we are living through. It was the first and only government entity with the ability to unify all HHS agencies—to ensure efforts weren’t duplicated or contradictory, to establish true coordination, and to finally treat Long COVID like the systemic, multisector challenge it is. For the first time, we had many efforts underway and ready to launch, and the infrastructure to act as one country. That’s all gone now.”

Prominent long COVID researcher, Ziyad Al-Aly, stated:

“The intent of the office was to really catalyze progress and realize efficiencies. Undoing it risks undoing a lot of the work, delaying a lot of progress, and [it] really is a disservice today to the more than 20 million Americans who are suffering from long COVID.”

Other Long-COVID Cuts

As Health Rising reported earlier, the Trump administration also terminated the (unpaid) Advisory Committee on Long COVID-19, removed long-COVID information from federal disability websites, and removed data related to long COVID-19 from the CDC’s website.

Animus, Not Efficiency, Appears to be Driving Long-COVID Cuts 

It was hard to find anything efficient about axing a study as it’s entering its last legs. Nor does it seem to be efficient to close an Office whose sole purpose was to make long-COVID support at the federal level more effective. How ending an unpaid long-COVID advisory panel helps American taxpayers is a mystery. Lastly, removing information on long-COVID disability from a federal website or removing long-COVID information from a CDC database is hardly going to help the federal government save money.

The only thing that can explain all of this appears to be an animus that at least some people in the Trump administration feel towards long COVID. Take HHS spokesperson Emily Hilliard’s heated statement regarding the long-COVID cuts…

“HHS is prioritizing funding projects that will deliver on President Trump’s mandate to address our chronic disease epidemic and Make America Healthy Again.”

suggesting that the Trump administration does not think long COVID is a chronic disease. In fact, it appears to believe that long COVID is a mirage. Hilliard, who hopefully will not be in her job much longer, in a rather heated statement, wrote:

“The COVID-19 pandemic is over, and HHS will no longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago.”

The approximately 14-20 million Americans with long COVID would probably disagree that they’ve moved on. The fact that the long-COVID “cutters” lost this battle provides hope that they can be sidelined.

Long-COVID Research at the NIH is (Not) Dead (After All)…Or is it?

The Raising of Lazarus - Vincent Van Gogh

Like Lazarus rising from the dead – the RECOVER grants suddenly came back to life. (Image by Vincent Van Gogh from Wikimedia Commons CC 4.0).

Two days ago, one thing seemed utterly clear: long-COVID research at the world’s largest medical research funder was dead for the next four years.

No researcher would have taken a chance on a long-term COVID NIH grant, and maybe, with this swing of events, they still won’t. Who wants to take a chance on which side of the Trump administration will prevail?

While the NIH never sufficiently funded ME/CFS, the attack on long-COVID research—and it can only be described as an attack given its breadth and depth—is reminiscent of and goes beyond what ME/CFS was subjected to in the early 2000s when Anthony Fauci booted ME/CFS out of NIAID and abruptly closed the three NIAID-funded ME/CFS research centers.

ME/CFS was lost until the little Office of Research on Women’s Health (ORWH) picked it up, but the effects on funding were nothing less than catastrophic for the next 15 years. Even so, the federal advisory panel for ME/CFS (CFSAC) and the Special Emphasis Panel (SEP) for ME/CFS grants remained in place. In other words, while ME/CFS got dropped by NIAID, no attempt was made to erase it as a disease.

With the Trump administration temporarily shuttering tens of millions of dollars of ongoing long-COVID studies, ending the Long COVID Office, removing long COVID as a disability from DHHS websites, and removing data on long COVID, this has felt very different.

Ian Lipkin’s NIH-funded ME/CFS Center Gets Caught in the Crossfire

Ian Lipkin's Columbia Group

Ian Lipkin’s ME/CFS research center is out of money.

The recent saga of Ian Lipkin’s NIH-funded Center for Solutions for ME/CFS illustrates how politics in the Trump era has become indelibly intertwined with medical research. Accusing Columbia University of not doing enough to combat anti-Semitism and of insufficiently punishing students who participated in pro-Palestinian demonstrations, the Trump administration zapped it out of a cool $400 million in research funding three weeks ago. (Twenty-five years earlier, Columbia turned down a Trump offer to sell his land to it for $400 million.) Most of the cuts, which were called “unprecedented,” involved NIH funding, and they included Ian Lipkin’s ME/CFS center.

Two weeks ago, facing catastrophic losses, Columbia agreed to “overhaul its protest policies, security practices and Middle Eastern studies department”, hire 36 special officers, ban the use of face masks, etc. Although Education Secretary Linda McMahon stated that Columbia was “on a favorable path”, the Trump administration has yet to restore full funding.

Yesterday, Fierce Biotech reported that Ian Lipkin’s ME/CFS Center was laying off staff at a time when Lipkin asserted that “we’ve begun to see light at the end of the tunnel” and was even in talks “with several biotechs, as well as the broader NIH-supported ME/CFS research network, to discuss working together on potential clinical trials”. With his ME/CFS center’s grant still terminated, Lipkin said his ability to “participate in any sort of research right now … is just not there … we can’t pay (our) bills.”

Emily Taylor, the president of Solve M.E., compared the loss to “investing millions of dollars into building a car, only to then hit the car with a sledgehammer just as it’s ready to drive”. She said “it’s just ugly that this vulnerable population and this stepping stone of progress has become a political football.”

Promised Post-Infectious Disease and ME/CFS Grant Packages in Limbo

The two National Institute for Neurological Disorders and Stroke (NINDS) grants for post-infectious diseases, including long COVID and ME/CFS, scheduled to be announced in December, never were. A grant package for ME/CFS, also scheduled to be announced in December, has never appeared.

It’s possible that the Trump administration’s decision to freeze all funding impacted these grants, and they will eventually show up. Time will tell.

Antiviral and Vaccine Research Axed

Pathogens

Hundreds of millions of dollars going to better antivirals and updated vaccines were also cut.

Asserting that the COVID pandemic has ended, on March 25th, the Trump administration has also stopped funding $577 million of studies by the Antiviral Drug Discovery Centers for Pathogens of Pandemic Concern (AViDD) that produce vaccines and antivirals for the coronavirus and a host of other viruses (paramyxoviruses, bunyaviruses, togaviruses, filoviruses, picornaviruses, and flaviviruses) and prepare for the next pandemic.

Upgraded antivirals could play a key role in wiping out reservoirs of the coronavirus, and, of course, potentially could have been used in ME/CFS and other post-infectious diseases. The cuts were particularly bewildering given that the antiviral centers could have been retained using a “no-cost” extension that would have precluded using new monies.

At least two of the eight federally funded Serological Sciences Centers of Excellence that tracked immune responses to the virus in COVID-19 and long-term COVID patients were also terminated.

The cuts all seem to be tied to the wish of some individuals in the Trump administration to cut everything related to COVID-19. Given the horrific cost of the COVID-10 pandemic, how it makes sense to cut research that could help with future pandemics is beyond me.

One researcher said the Trump administration was “taking a hammer, not a scalpel, to our efforts to defend against many viral threats, not just COVID-19 and SARS-CoV-2.” Charles Rice, a Nobel Prize–winning virologist at Rockefeller University, called it a “pointless, ill-advised move that will hurt U.S. science and pandemic readiness.”

NIH Reorganization Bodes Poorly for ME/CFS and Long COVID

Various sledge hammers and an axe in hardware store in Germany

Is long COVID on the cutting block or not? Time will tell.

There was hope that an NIH reorganization would help diseases like ME/CFS and long COVID-19, but that now looks dim with political views now guide research funding.

While most diseases are “non-political” and should not be affected, long-term COVID’s association with COVID-19 clearly leaves it in danger of being cut off.

Instead of being reviewed by independent scientific advisory committees, the Trump administration announced that one Department of Government Efficiency (DOGE) and DHHS official will now review major NIH funding opportunities to ensure they align with the Trump administration’s priorities.

The NIH has already removed about 100 funding opportunities that dealt with health disparities, gender, minorities, and workforce diversity, but the Trump administration’s actions suggest that many other topics (long COVID, antivirals, pathogen research, vaccines) may be rejected as well.

It’s unclear how this affects diseases like ME/CFS, fibromyalgia, Lyme disease, and post-infectious diseases, but it’s not hard to imagine DOGE and DHHS personnel rejecting funding opportunities related to these complex and controversial diseases. That is, if they even get to DOGE given that the NIH staff may refuse to spend months preparing a funding opportunity that has a good chance of getting axed.

Having to pass a DOGE and DHHS filter will only cause the NIH to become even more conservative – not what NIH Director Bhattacharya said he wanted to have happen at all. The concentration of power in DOGE and the DHHS, and plans to reorganize to dramatically reduce the number of Institutes, also seem at odds with Bhattacharya’s plans to create “many more centers of power” that will engage in more “high-risk, high-reward” projects.

Long COVID, ME/CFS and the Trump Administration: Where We Stand Now

Remarkable Changes

different directions

With the Trump administration shifting back and forth on funding, much remains unclear. One faction, though, wants long-COVID research gone.

A few months have brought remarkable change. Last year, Director Bertagnolli was excited about making a difference with long-COVID research, helped make the RECOVER Initiative’s treatment trials nimbler and more forward-looking, and acknowledged the need for more ME/CFS research.

The RECOVER Initiative had received an infusion of $500 million, the federal long-COVID office was apparently clicking on all cylinders, efforts to create a billion-dollar-a-year post-infectious disease moonshot and a new Center for post-infectious diseases were underway, and post-infectious disease and ME/CFS grant packages were on the docket.

All that seems like it’s at risk now. The NIH workforce is being cut, its funding is under attack, long COVID is fighting for its life, pathogen, antiviral and vaccine research is being nixed, billions of dollars of NIH grants are still being held up, and somehow, one DOGE and one DHHS employee are going to determine the fate of all NIH initiatives.

With one hand of the Trump administration not aware of what the other hand is doing – and battles taking place within the administration about which course to take – only time will tell what ultimately happens to long COVID, ME/CFS, and post-infectious diseases at the NIH.

What a difference a few months make!

Taking Action 

If you feel these actions will not support ME/CFS, long-COVID, and post-infectious disease research, you can take action by calling your congressional officials to tell them to keep long-COVID and ME/CFS research funding, and push back against DOGE employees deciding the fate of NIH funding initiatives, etc. Medical research has traditionally been a bipartisan issue, and contacting our representatives, particularly those in the House, where the margins are razor thin, can help.

Check out #MEAction’s Long COVID Campaign’s toolkit here.

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