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The GIST
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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.”
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
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?
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 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
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.”
Pain Policy Office Cut
Update – On April 1st I learned that the The Office of Pain Policy and Planning (OPPP) at the National Institute of Neurological Disorders and Stroke (NINDS) which advances pain research on a national level; coordinates and supports trans-NIH pain research and activities through the NIH Pain Consortium and Interagency Pain Research Coordinating Committee and coordinates the trans-NIH Helping to End Addiction Long-term (HEAL) initiative has been entirely cut.
Thus far, it appears that any coordinating group that was designed to increase efficiency, reduce duplication, and enhance collaboration across the NIH Institutes is being eliminated.
NIH Reorganization Bodes Poorly for ME/CFS and Long COVID
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.
Remarkable Changes
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.
I sort of get a déjà vu.
Diagnostic markers for long-Covid would allow qualifying for disability income so long there is no cure. That would be costly to social security, private or public. And it would open up the possibility for class actions from first line workers during the pandemic for job related life long disability compensation against the goverment(s).
In a later phase, there could be a genuine call for funding research for cures for long-Covid. That research would be expensive, and the drugs even more so to medical insurances both private and public and to governments if they were ordered by court to pay those medications to life long disabled first line workers of the pandemic. The worst case scenario for insurers is to have to pay both disability income and very expensive drugs that improve quality of life but don’t improve health enough to let patients return to work.
It sort of feels like PACE 2 all over it. Let us hope that is just a very poor and unjustified feeling. So far it is nothing more then a fear and I very much hope this fear does not materialize. Any mention of long-Covid information and disability dissapearing from government websites is a disturbing sign if that info is correct however.
I agree.
The field is dead.
People who were receiving or expecting to receive (further) funding for research will leave the field and will never get back to it. They will develop new expertise wherever their can find a job and stay there. In 4 years’ time the ME/CFS/long covid research will start again almost from scratch with new researchers who will need a couple of years to familiarise themselves with the status of the knowledge, with what to rely on and what not to rely on, where and how to find funding, with the practicalities on collecting patients’ data as existing databases will probably be forgotten on abandoned servers, etc.
The current ‘know-how’ and ‘know-who’ will soon be gone. Nothing useful in terms of diagnostic tools and treatments will come out in the next 10 years.
At least.
Let’s see what happens. The grants were apparently restored. That may not be enough to entice researchers back into the field though.
From what I can tell, pulling $45 million worth of long COVID grants that were in their last legs is unprecedented. That and the killing of the Long COVID office, the unpaid panel, the removal of long COVID disability information, etc. indicates some people in the Trump administration have it in for long COVID.
Likewise, the widespread elimination of grants for antiviral, vaccine, and immune research into COVID and long COVID indicates that major players in the Trump administration are going after anything COVID related.
On the bright side, the fact that the RECOVER grants appear to have been quickly restored indicates that not everyone in the Trump team is on board with whacking everything long COVID.
It is bizarre and scary that one DOGE and one DHHS employee—neither of whom has been named—will determine which of the very complex NIH funding opportunities are approved.
There is cutting edge research in the richest European countries, and in the Commonwealth countries as well, on ME/CFS. I hope that at least some of the laid off researchers will join existing teams abroad.
I am confident that within ten years researchers outside of the US will not only understand the pathomechanism of ME/CFS but also develop new treatments.
Yes agree. I think Australia is arguably making the best progress of any country in terms of ME/CFS research
This seems a possibility. I read that researchers are leaving the US for French and Canadian universities.
I feel sorry for sane and reasonable Americans. Your ‘president’ is the laughing stock of the world
We know. Many of us do not support this president and administration. Please don’t equate all Americans with some Americans and the current president. It would perhaps be funny if it weren’t so scary. Way too much is in jeopardy for all of us here.
I support the Trump administration and DOGE efforts. I also find broad based negative statements as not helpful to continuing much needed research. Kennedy now is in charge of this administration so Trump bashing will get us nowhere. As for DoGE it is a temporary intervention effort and consistent with industry practice in identifying and reviewing what programs are worthy of keeping. Musk’s established a prototype where each agency established DOGE teams are following. Change is difficult but perhaps you can look at the review as an opportunity to bring awareness to the ME plight. Musk has publically stated that some mistakes will be made and has set up a communication channel to submit concerns.
I lost my functional life to ME/CFS 12 years ago. Glad to hear my life housebound or bedbound brings you political satisfaction.
Ah, the soothing sounds of well-reasoned Nazi collaborators confidently clueless to the levels of malevolent destruction unfolding all around them…
Problem is, standard industry practice does not and should not apply to government spending. I wont argue that we don’t need major change and to clean up our mess of a government, its blatantly obvious we do, but Congress approved that spending and those appropriations.
As much as the Technocracy wants us to be a corporation with a CEO/monarch calling all the shots, thats NOT what we are! We fought wars to rid ourselves of monarchy, and we are supposed to have checks and balances – but apparently now the constitution is ‘inefficient’. (Cant you see there can be tyranny in ‘efficiency’ too? There are many things that can seem very logical on the surface but ultimately lead to horrifying consequences if followed through).
Simply not agreeing with what has been funded does not make it ‘waste fraud and abuse’ (nice catchy phrase though: WFA, WMD, i think i see a pattern). There are proper means of auditing and correct methods of revising government spending – Politically and personally motivated hack-n-slash ain’t it. Anyone believing a handful of people can actually ‘audit’ the entire federal gov this quickly is either very naive or willfully… ah nevermind, this isnt meant to be a personal attack at all, just saying ‘get real’.
I personally think this is ALL about the government being commandeered for the tech bros to ‘win’ the AI race and establish their North American Technate, and nothing/no one else matters. Especially the ‘unproductives’, ‘parasites’, and ‘useless eaters’, as they like to call us while they cut funding to the very research that could actually help us recover and become ‘productive’ again! They NEED that money funneled to their own pockets and all regulations repealed so they can accelerate uninhibited the building out of our digital AI prison. Oh, and so Elon can go to Mars. Just wait till our beautiful country is completely degraded by unbridled extraction and thousands of unthinkably massive energy and water-hog data centers, all so they can digitize, surveil, and socially engineer us and the whole world. And frankly, i think this tech coup was going to happen regardless of who won the election. But Trump won, and he is fully supporting it, so he gets the ‘bashing’ this time.
Lol.
So, it’s your fault we’re in such a shitty situation. Congrats on being one of the a$$holes who put us in the mess we’re in now. Thanks so much.
Unfortunately, the majority of Americans voted for Trump, and a lot the swing voters were ill-informed voters; thinking he would cut prices and improve the economy. No and No. These voters willfully ignored Trump and his lackey’s not very hidden agenda to build a totalitarian Presidency. Now the USA and the world has to pay for their stupidity and ignorance — America’s educational system is near the bottom of the developed world.
Yes Brian, a ‘majority of the voters’ did vote for Trump–but it wasn’t a large majority. Anyway the Electoral College system was really how he gained his victory. It is an unfair and biased system.
Cutting medical funding is not the only thing we all have to worry about. That horrible man is beyond cray cray. I hope he fatally chokes on a chicken McNugget! And Elon? Citizens here are laying waste to Tesla dealerships–and more. Go to Mars, Elon, as that is where you belong!
Sorry for the vitriol, but I am incensed by what is happening here. There is a sane way to clean up our government–and this isn’t it!
And creating a positive outcomes/s in our work toward health with clear thinking and open dialogue is not supported by wishing anyone, including DJT, death by McNugget. A published death wish against the President offers no sane solution to cleaning up our government, only negativity.
Cort, I thought you did not allow invective like this. This kind of venting does not represent the maturity of this community well. How is wishing death less censorable than the “personal attack” ? comment that was banned by you in a previous post of mine? I did not mention names in my questioning re: Fauci’s pardon.
Thanks for your sympathy. Many of us are terrified. It feels the end times here.
Thank you – so many of us DO NOT WANT THIS
I would have thought people would have had their eyes opened from trumps first go around.
I suspect everyone was tired of Biden resting on his laurels.
I’ve been around for a while and have come to the conclusion that govts. Keep caring less and less for their people no matter what country you inhabit
Anon, I agree with you totally. It is all about the “Benjamins”. 20,000,000 Americans with Long Covid would cost the government and companies a lot in disability payments, expensive medication and loss of productivity.
That said in the 40 years I have had ME/CFS, I am having trouble remembering any research that has been done that actually helped me with ME/CFS or, more recently, Long Covid. The best treatment options I have used came from Dr. Paul Cheney and research I did on my own.
Right now, I am having difficulty with balance and walking (called Covid gait). I am going to try reflexology which I had used before for ME/CFS.
This is why I wish Cort would do a blog where commenters share things that have helped them with various symptoms. We can’t sit around and hope research will solve this for us.
Same here. A chiropractor has helped me feel “straighter” and has recommended an exercise to help with balance. Some may call it Voodoo medicine but I’ve gotten better results for my money with energy medicine (quantum, rife, scalar, PEMF). I’ve been seeing a NES, Energy4Life practitioner for the past year and a half.
We do have a treatment review program coming up…It’s taking a while to get to it.
Please take care of yourself first! Your years of NIH and other research coverage have been helpful and your large knowledge base is an asset.
Hi Cort, A treatment review was not what I had in mind. I want to hear from people who have ME/CFS and Long Covid and what has helped them with any symptoms. I have a list and I am sure others have one two suggestions.
During 40 years, the research industry has not produced one treatment that has helped me. Time to take it to the trenches.
Many people who read this blog believe that research is going to come up with some “magic beans” to cure us.
Let’s look at this from a different perspective. Anne Romney (former presidential candidate Mitt Romney’s wife) developed severe MS during his run for office. The doctors offered her no help except for steroids which have their own severe effects.
Other MS patients kept writing her and suggesting that she try reflexology, an ancient form of therapy. She found a German reflexologist and this plus the patterned movements of dressage (a horse dance so to speak) took her out of the wheelchair and to Olympic competition in dressage.
Her book about her experience with MS is very eye-opening.
If I read one more study where researchers show that exercise makes symptoms of ME/CFS and Long Covid worse, I am going to hurl.
PEM is just one symptom of ME/CFS and Long Covid and, in my view , not the more serious outcome.
Batty I’m 100% agree with you . I’m residing in San Francisco. I have ME/CFS for more than 36 years . The government and medical community failed all of us and we have been treated inhumanly. I still do not have a doctor , who would be knowledgeable or want to know more about this horrible disease . To blame Trump administration for everything ? Trump is in an office less than three months. Where was NIH , or Colombia university before 2025 , they all were getting funding? They all got funding, the problem was in distribution and fraud . Covid was created in China and funded by America , and vaccines were ready before pandemic, now they still want to do research . Why Fauci was getting $500.000 annually plus more from Pfizer . When people with the disease like ME/CFS have been neglected for so many years, the blame should be placed where it’s belongs, previous administrations .
Good morning, Betty,
A while ago, you asked me to update you on my long-term results from taking Metformin. I haven’t visited the page in a while, and reading your message reminded me.
I have noticed improvements in my prediabetes condition, which has led to a slight overall improvement in my general well-being. However, I haven’t experienced a direct improvement in other symptoms related to chronic fatigue syndrome.
Solutions! Let us have frequent positive updates on what people have found to help, even temporarily. Keep the focus not as despairing and doomposting as seen in this or other comment sections.
Heuristics is a valid research field based on lived experience (Clark Moustakas, PhD), and Lord knows we have got lots of aggregate wisdom here.
Toolkit link not working
I don’t know what happened. It was working yesterday and now is not but here it is – https://bsky.app/profile/lccampaign.bsky.social/post/3lleqcntffk24?mc_cid=fa18d0a29f&mc_eid=2db0572c47
Americans are more than naive to think that JFK jr. will improve research on Long-COVID. He is just another Trump lacky, who also lacks any basic knowledge of science. Hopefully, he does not destroy the basic research infrastructure in the USA in the 4 years he has do damage. Conspiracy theorists rejoice.
Blocking Covid
For years, people have taken antiviral medications to fend off the flu and HIV, and more recently, the antibiotic doxycycline has been shown to help prevent some sexually transmitted infections. Now, researchers say a daily pill could do the same for Covid — at least for people exposed to an infected household member.
Shionogi’s ensitrelvir cut the risk of catching Covid by 67% over 10 days when taken within 72 hours of someone in the same household developing symptoms. The five-day treatment was tested in a late-stage trial, and the results were presented at a scientific meeting in San Francisco in March.
This is the first time an oral drug has been shown to work for post-exposure protection, according to Frederick Hayden, a professor emeritus of clinical virology and medicine at the University of Virginia School of Medicine who helped design the study.
The key? Taking it fast, said Hayden, who has led multiple trials of antiviral treatments for respiratory infections. The drug — sold as Xocova in Japan and Singapore, where it’s approved as a Covid treatment — works best when started soon after exposure (or after symptoms appear).
This year, the US Food and Drug Administration granted ensitrelvir “fast track” designation for post-exposure prophylaxis following contact with an infected individual, signaling its potential as a valuable preventive tool. It is yet to be approved as a drug to prevent Covid post-exposure.
Shionogi continues “to interact with regulatory authorities worldwide to determine the best path forward for ensitrelvir,” said Takeshi Tsuge, a spokesman for the Osaka, Japan-based drugmaker, who declined to elaborate.
This is likely to not work indefinitely just like previous prophylaxis antivirals, as COVID continues to mutate. Other efforts are underway that could circumvent the mutation issues but probably going to be hard to move those forward with funding situation. Already resistance mutations emerging: https://www.sciencedirect.com/science/article/pii/S0166354225000440
Hi Emily, You make a valid point about mutations, but I would really like to have had this available before I got Covid twice in the same year.
I am still dealing with serious post Covid symptoms. I believe there are some core similarities between all the Covid mutations…the spike protein?
Hey Cort. #MEAction is a great advocacy group trying to hold the line, but the link in your Gist to their toolkit is not working.
I don’t know what happened but here it is
https://bsky.app/profile/lccampaign.bsky.social/post/3lleqcntffk24?mc_cid=fa18d0a29f&mc_eid=2db0572c47
I agree there is waste in the Covid arena. The CICP had set up a special department for damage from the Covid vaccines. Had spent over 30 plus million dollars in Administration cost. Denied over 98% of the claims and settled approx. 6 claims spending $40 thousand dollars. There were 38 employees and a building that belonged to the government. This was published by HRSA.
Where was the rest of the money spent?
Yes, and I’ve noticed similar levels of waste, fraud, and abuse occurring whenever the fire department is putting out a house fire. Don’t they know there’s a water shortage? Hopefully DOGE is coming to the rescue. They should mothball all fire departments until every drop of water is accounted for. Those so-called fire-fighters are just lazy, uncaring, evil people destroying the great tradition of self-reliance that built this country. Just watch the way they spray water everywhere as if it grows on trees!
What city are you in?
I’ll let them for you.
Just like research I was involved with answered at the end.
Findings could possibly and may assist others. Send more money to be involved for another year of research, when they have already received over a billion from the government and unknown amounts from patients.
Thanks for summary of the political recklessness regarding the attack on all scientific research !! I have been sounding off about this to everyone in my state of Alabama. No one is informed and or cares here. I get a lot of yeah buts etc. It is a sad time for those of us with ME/CFS, Long Covid, Fibromyalgia and all of the complex post Infectious illnesses. Science has been tossed into the trash just as we were making progress. Wake up RFK.
Infections cause Chronic Illness. Don’t put Infections/Vaccines etc. on the back burner for the next 4-8 yrs.
I never had any hope that any change from Trump and his admin would be positive. He and his admin DO NOT CARE at all about anyone’s health or wellbeing. They have an axe to grind thinking COVID made them “look bad” which explains the massive cuts and undermining of its progress. But it isn’t just this, they are removing decades worth of scientific progress by not funding top institutions. Research programs have already had to freeze or reduce their PhD program entrants and Europe and other countries are happily taking our talented scientists instead. America is no longer going to be the best medical research country. Lots of private efforts will try to fill the gap but it won’t be enough to keep the lights on for lots of great research centers. What a tragedy. None of it has anything to do with government efficiency. Let’s see what happens when we inevitably have the next pandemic (bird flu? measles?)
Also noting it’s highly optimistic to think this will all resume in 4 years. Even if we can elect another president which is a big if considering Trump saying he will just ignore the constitution and have a third term, and even if we elect a Democrat, it will take years to rebuild the infrastructure and rehire the folks that have had to go elsewhere. So no, it won’t be 4 years til anything resumes…. try 5-10.
https://www.cdc.gov/covid/long-term-effects/index.html
False claims information still on cdc.gov for long covid
The first people the Nazis went after when they came to power were disabled people. We are seeing a similar trajectory now in the US. People with disabilities are being called “parasites,” just as the Nazis referred to people with disabilities as “useless eaters,” and the goal, presumably, is to get rid of us. Oh, and the core contingent supporting this regime consider themselves devout Christians and think this sort of attitude towards the sick and disabled is somehow in line with the teachings of Jesus.
On the plus side, I am thankful for the continuing ME/CFS research happening in other countries. I just participated in a study being lead by a bioinformatics professor in Lisbon who found me through a Reddit post. May decency, reason, democracy, and scientific progress prevail.
The author and Editors need to print a corrections of false claims made in this article.
The SSA has not removed any information.
The CDC has not removed any information.
Areas were ID’d by the DOGE team were made.
Those areas go to the Constitution attorneys for review.
A Board reviews information requested for what the billions of dollars used in each Department.
Yes, Recover funding was cut, but replaced. Recover has spent 1.7 billion and no answers on paper since 2021. Just talk of information gathering.
I have paid $10’s of thousands out of pocket for experimental and practical medicine. Still no answers.
If these research centers and groups funded by our tax dollars come up with the same thing of the reply’s “Covid-19” and Long-Post-Covid or what ever the research
People can’t decide what to call it. Mutated every 2.35 days and they couldn’t or can’t provide any conclusive information on the damage the virus caused. Then there will be answers needed. The Advocates for ME/CFS pulled Long Covid in under their umbrella of connects with government and research centers for I’m greatfull or it would have been a longer road to no full recovery.
As the the Nazi’s I’m conservative searcher of the truth, most of the nay sayers and deniers have been from the left of the left of center.
The CDC has removed a significant amount of information from its website since Trump’s inauguration in January of 2025:
https://www.theatlantic.com/health/archive/2025/01/cdc-dei-scientific-data/681531/
https://www.beaumontenterprise.com/news/article/trump-woke-dei-culture-wars-20148647.php
https://apnews.com/article/trump-cdc-fda-doctors-for-america-5263fc6b6cbc723ca0c86c4460d02f33
Amy Gleason is the only member of the DOGE team that has any medical qualifications. Trump has claimed that Gleason is the acting director, but reports indicate that Steve Davis, a close associate of Musk, effectively manages the day-to-day operations of DOGE. This has led to questions about the extent of Gleason’s authority and the overall transparency of the department’s leadership. Musk and Trump seem to change their story about who is in charge based on what answer serves them at any given moment. It is unclear who is actually doing what, or on what basis they are making decisions about which medical research gets funded. Concern for people affected by health issues does not seem to be a significant factor for them.
The reason these funding cuts are going to the courts is because they are being challenged as unconstitutional. That is not something the Musk-Trump regime initiated, and they have been fighting against our country’s constitution at every turn.
Trump now wants to violate the constitution yet again by seeking a third term in office. What they are doing is neither conservative nor honest. Their actions suggest a desire to circumvent the rule of law whenever it benefits them to do so, to destroy rather than conserve our democracy.
The fact that research has not yet produced a conclusive diagnostic biomarker or cure does not mean that the research is “waste, fraud, and abuse,” the purported targets of the DOGE operation. When you are hungry and growing a garden, you don’t abandon it because it hasn’t yet borne fruit. Some things take time to accomplish. The logical next step when a new stage of research is in its final stages of approval is not to cut the project–unless you really don’t care about the people who are affected.
Any of us with any expendable income who have been living with ME/CFS have also invested a lot of our own money in looking for answers. To a rational person who would like to find a cure for this, that fact does not suggest that medical research should be abandoned. Quite the opposite–the fact that our individual efforts to find solutions on our own are not yielding answers suggests that research by qualified experts is all the more necessary.
Medical research about a new and/or poorly-understood condition is not like ordering fast food. The fact that they are still figuring it out is not a logical reason to “cancel your order.” They are probing the frontiers of microbiology, physiology, and pathology here, not making french fries.
If you genuinely value the truth, you need to take a long hard look at what this regime is doing. They lie as a default. They value cruelty, tyranny, and corruption. They aspire to inequity. They break the laws our founders crafted in the constitution with such care at the inception of our nation. They make a mockery of justice and the rule of law. The only things they conserve are skulduggery and lack of empathy. When it serves them, they will turn on you, too.
Regarding the de-funding of Ian Lipkin’s ME Centre, I am as angry as anyone else at Trump and DOGE, but I am equally angry at the moral cowardice of the Columbia administration (and many other university administrations) who indulged the excesses of overtly antisemitic, pro-hamas students. What did they think was going to happen?
The fact is that while it does not represent the wider tradition, there is a fascistic element that has been allowed to metastasize whole segments of the Left. And like it or not the election of Trump was largely an attempt to check its growth. Our unwillingness or inability to effectively police our own side has cost us dearly. Because now we have to deal with arguably worse fascistic elements on the right. But as people with complex chronic disabilities we were always sacrificial lambs at the bottom of the ‘progressive stack’ anyhow. When the pendulum finally swings back leftward we should guard against these hateful and dogmatic tendencies, the natural consequences of which seem now to have set so many vulnerable and marginalized people back so profoundly.
This is dangerous thinking. Why should student protests, whether appropriate or not, affect important research that can relieve suffering or how chronically ill patients are treated? The two are not related.
As far as I know the researchers at Columbia had nothing to do with speech anyway and certainly not suffering patients who could benefit.
K-12 children in Maine are not getting funding just because the president doesn’t like their transgender policy. Why should all schoolchildren in Maine be punished for this?
We know Trump goes after personal enemies as his highest priority and he doesn’t care about collateral damage. We are already victims. A kind word for this is authoritarian but I can think of others. Don’t justify it. It’s not ethical policy and once you accept it as such the examples will get more and more egregious.
Well, to be honest I think it’s a good example of ‘authoritarian’ thought-policing to label the opinions of others as ‘dangerous thinking’, but then that language proves my point about what’s happened to the left quite well. And of course in a perfect world, student protests about the Middle East wouldn’t have anything to do with research centres for chronic illness. And yet those who are more guided by reality than ideology can acknowledge the causal chain of events in which their own behaviours can quite predictably result in the behaviour of others. The fact is that by choosing to respond permissively to pro-Hamas activity on campus, Columbia administrators drew predictable heat on all sorts of people who benefited directly and indirectly from Columbia’s Federal funding. What I’d like to know is if the research centre will resume it’s activity now that it sounds like the funding will be restored.
I definitely wasn’t implying I wanted to suppress free speech. I just see your post as justifying something I think is dangerous. Anyway, I don’t know how “dangerous speech” is any more “thought-policing” than the left’s “inability to police our own side” you stated in initial post.
In 3017 Trump called some of the antisemites with tiki torches as “good people”. Now he suddenly wants to withhold billions of needed research money because of antisemitism? This is just an arbitrary vendetta against elite colleges. My point was that we shouldn’t justify Trumps personal arbitrary vendettas that are unethical or illegal and I see it as dangerous to do so.
We just have different viewpoints. I think the problem is slippery authoritarianism and you feel it’s the far left.
Yes we have different viewpoints and that’s OK. But to be clear, authoritarianism, whether its cultural or political, left or right, is exactly what I see as the main problem. And we now see both cancel culture and divisive identity politics at both extremes, reacting to each other. And my point is that pwME are unfairly caught in that crossfire regardless of our political orientations.
And by ‘self-policing our own movement’ I’m referring to who we ally with, and support. I’m not referring to coercing or controlling anyone’s expression. For example I don’t think people on the anti-authoritarian left should ally with anyone sympathetic to Hamas, an outright authoritarian organization. That was just a recipe for blowback, which as you point out was opportunistic. But it was damaging blow back all the same, including to pwME. That’s not a justification, just an observation, and an opinion on what can be learned from it all.
Edited to add: I will concede I should have not used the term “dangerous thinking”. I stand by the rest of my thoughts as I’m sure you do. No one else cares or is reading this at this point anyway.
Go to the
cdc.gov and SSA.gov
websites and look for yourselves
You’re feeding off half truths twisted to incite readers
Information has been updated the SSA makes changes all the time you can click a link for updates to be sent to you. It will tell what was changed and when it was changed
That’s the reason you need to look for yourself to gain the truth.
No from some inciter of twisting facts to make a pay check on their opinion
Richard, you are correct. I just checked the CDC website and there is still Long Covid information on it. https://www.cdc.gov/covid/long-term-effects/
You are right. You always need to double check sources of information.
“According to the World Health Organization, an estimated 15-20% of people who have had COVID-19 experience long-term symptoms known as long COVID. This translates to approximately 140-180 million people worldwide, based on the estimated number of infections. It’s important to note that these figures may vary depending on the specific population and study methodology.”
I think these figures will be hard for any administration to ignore.
I have Long Covid and as soon as one symptom seems better, another appears. One of the most unexpected was hearing loss.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10072149/
My ENT had no idea about this because you have to do your own research to find it.
Some research gets redacted.
I read that getting an updated vaccine dose helped solve 54% of long covid cases, so I rolled the dice spent a couple of weeks down. Went to show my doctor the research paper it was unreadable.
Welcome to the club of The Long Covid. Some days I string words together some days I just can’t find them.
When I see false information about LC/ME/CFS I have a brain overload of 4 years looking for answers. These false people damage the creditable research, and cover up the waste and lollygagging.
It’s hard to imagine a worse trigger of brain overload than spending years twisting yourself into knots defending, apologizing, and collaborating with authoritarian oligarchs who would prefer to simply eliminate your existence. Very sad. For humanity. Wake up, be woke.
These are the updates you can get if you’re interested in the real changes at SSA.
Some are/were multiple times daily even under Pres. Biden
Putting you in control
ssa.gov
The following program policy instructions were updated on 04/01/2025.
Program Operations Manual System
NL 00703 TN 118 – Exhibit and Dictated Letters
Summary: This transmittal creates a new POMS section about the reconsideration affirmation notice E4069. Notice E4069 ensures consistent and accurate messaging when the agency is affirming that our initial decision to suspend benefits under the Alien Nonpayment Provision (ANP) (section 202(t) of the Social Security Act) was correct. Publishing this transmittal will allow us to archive EM-23072 New Reconsideration Affirmation Notice for Suspensions Under the Alien Nonpayment Provision.
HI 00805 TN 120 – Supplementary Medical Insurance Entitlement
Summary: This transmittal provides edits to the procedural section of this Program Operations Manual System (POMS) due to new processes for SSA Payment Centers, which included new automated language for use by SSA technicians. This automated language was drafted by CM Division of Technical Payment Policy (DTPP) and SSA OISP/OPSOS.
NL 00760 TN 7 – Garnishment Notice System
Summary: We are updating Program Operations Manual System (POMS) section NL 00760.600 to simplify the language and fill-ins. These change will take affect in September. The changes to the language and fill-ins are outlined in the clearance package provided by policy.
Ok. I think it is important to understand the goal is to get rid of silos within the NIH. IMO they have not served the ME/CFS community well – I remember the days the CFSAC committees made up of the different agencies with no agency wanting to take ownership of ME. Additionally pausing funding is typical so that projects can be reviewed. Ian Lipkin while a prominent is tied to China and Covid. So recognizing the Columbia Center is out of political favor is important.
Thus my suggestion is rather than being angry with Trump (unless that helps energize you) look for the successful cross functional teams (in this case researchers who study neurology, cardiology, nutrition, physiology, biomedics, pharmacology etc … ) and hitch our wagon to those. I’d also include a few ME functional medicine practitioners. I just watched a video of Kennedy telling what his plans are. My suggestion is change your word set to match his.
I speak from experience of growing a government funded research group, weathering political change, and having to downsize. Change is not easy – best to look at where the money is headed. Sadly somethings will be cut and not reinstated but that doesn’t keep a young researchers from picking up the results to date and integrating machine learning, neural nets, genetics etc.
The objective in my mind is what are the stepwise barriers to healing? Biomarkers are one avenue but not the only one as our physical systems are wonderfully diverse.
I don’t see how the plan to reduce the number of Institutes will help ME/CFS since we’ve never fared as well as when we have to compete with the big diseases. This will only worsen that I fear. I’m afraid I also don’t see how reducing NIH funding by 15% helps either for the same reason = we don’t do well when money is tight.
LEaving funding approvals up to political appointees is also scary indeed!
Not going to change my “word set” (very Orwellian BTW) to match a delusional narcissist conspiracy theorist. Just because Lipkin helped Chinese with infectious diseases you want to spread conspiracy about him. Trumpism has spread tribalism, anti science propaganda and now we have the consequences.
Thanks for voting for Trump, you stupid twats.
For misogynist white men ME/CFS represents the sort of self-afflicted misfortune that’s called instant karma.
People with pre covid MECFS need their own reseArch program and a clinical trials focus on those ill a long time with harm and the severely affected. It’s not true that long covid research U.S. is an adequate substitute for ME/CFS and yet ambitious #me advocacy has ceased, facilitating NIH stated intentions to replace ME/CFS with long covid which is a massive injustice.
Burying the decades-long m.e plight & absence of NIH funds in with long covid narratives , Where inevitably ME/CFS gets eclipsed, isn’t delivering ME/CFS the research $$$ dollars people have been waiting decades for & somehow we are drawing equaivalemts between the lipkin Columbia funding of $1.2m? with the $500+m in current wave that long Covid was getting and acting as if fighting to conserve both is therefore serving both communities. Any mention of need for funding the roadmap is going to get completely lost.
The NIH had set its face Against the ME/CFS community, openly abandoning us via the words of 3 senior representatives , pre trump and yet this years “ME” #millionsmissing is to include slogans of, “fund the NIH – fund ME” & another “science saves lives – fund the NIH” This year’s missing millions is going to give equal weight to long Covid interests, which through numbers and relatability will dominate, despite long Covid having its own awareness just two months before where m.e was hardly mentioned:
David Tuller is writing blog posts where he delivered the news to alem Matthew’s that there were no treatments but there are few m,e clinical trials & long covid research isn’t about prioritising clinical trials for people like myself and alem Matthew’s, its about helping people sick <than 4 years, who have not got as much damage and have one specific viral trigger. The pem stuff in long covid research is a mess & Key avenues of research are around viral reservoirs, anti covid virals /blood clots which have yet to be as consistently implicated in pre COVID ME/CFS . This will all be done First. Then pwME , terribly sick decades,, might get tickle down benefits. There is no equality or fairness in that.
I am English not American so I appreciate that my grasp of American politics , research funding and it’s implications might not be 100% on point but I continue to feel sidelined & abandoned by #ME charities
Trump & RKJ are not the bad guy’s,, they the bad sides have research ME for year’s knowing that vaccines do the very damaging affect on our immune systems, so the good guy’s like RKJ & the PresidentDonaldTrump stop funding the bad guy’s is a great place to start 🤝🤔 I hope & pray the medical bed will heal all these issues we are all suffering chronically illnesses.