Geoff’s Narrations
The Blog
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Kennedy stated one of his sons is struggling with long COVID.
There’s never a dull moment. DOGE has ripped apart the NIH and the CDC, and President Trump’s recent budget plan would leave both in cinders. Just last week, though, the Department of Health and Human Services (DHHS) Secretary, RFK Jr., pumped some life into long COVID when he publicly reaffirmed his commitment to long COVID during a recent Senate hearing. RFK Jr. stated that his own son was struggling with Long COVID. He told Senator Cassidy:
“The [Long] Covid office was cut by an executive order from the White House. But … everybody at NIH and CDC is committed to these kinds of studies, and I can tell you personally, I will make sure that they happen.”
Whatever you think about Kennedy’s stances regarding other issues, note that long COVID, Lyme Disease, and other post-viral illnesses have never had a public ally at this level.
RFK Jr. oversees a Department (Medicare, Medicaid, NIH, CDC, FDA) with a budget of almost $3 trillion. This is the second time he’s personally pledged his support for long COVID, and there’s much he could do. The big question is whether he’s willing to use his clout to really advance these diseases.
The Gist
- The NIH and CDC are facing some unprecedented changes. Elon Musk’s DOGE efforts cut almost $3 billion in existing contracts at the NIH and 1,600 jobs (4,000 jobs may be on the cutting block), and up to 30% of CDC staff are expected to be cut. DOGE has also demanded that the NIH cut funding by 35% and President Trump’s proposed budget cuts NIH funding by 40%.
- Ian Lipkin’s ME/CFS research center at Columbia was hit hard. The CDC’s Chronic Fatigue Syndrome Program—the only federal program dedicated to ME/CFS—is at risk of being eliminated, and funding for the Congressionally Directed Medical Research Program (CDMRP)—an important source of funding for ME/CFS—has been slashed by almost 60%. (See blog for Solve M.E.’s advocacy efforts).
- The NIH and CDC cuts are just part of a massive effort to shrink the government. USAID is the most visible victim, but job losses at agencies across the US government (80,000 at the Dept. of Veterans Affairs; the DHHS (20,000), the Social Security Administration, the Department of Education, etc.) have been high. Even seemingly sacrosanct agencies dealing with national security have been hit hard.
- Just last week, though, Department of Health and Human Services (DHHS) Secretary, RFK Jr., publicly reaffirmed his commitment to long COVID during a recent Senate hearing. RFK Jr. stated that his own son was struggling with long COVID and that he was committed to the research.
- Could there be light at the end of the tunnel? Perhaps. Instead of dramatically cutting NIH funding, the House bill maintains it at current levels. (The CDC’s budget is reduced by about 20%). Meanwhile, DOGE appears to be fading, and RFK Jr. is still standing.
- During times of dramatic change, tremendous opportunities can exist, and they are present now. As the head of the DHHS, which includes the NIH, CDC, and FDA, Kennedy can ensure that these diseases finally get the resources they deserve.
- A Home—It starts with a home. The House bill proposing a massive NIH reorganization provides a seemingly golden opportunity for Kennedy to ensure that a home for ME/CFS, long COVID, and post-viral diseases exists. Indeed, attempts to consolidate long COVID, ME/CFS, Lyme, and post-infectious research into an Office and dramatically increase funding were underway when Trump took office.
- Support Congressional funding – Kennedy could provide public support for new Congressional appropriations for long COVID and related diseases, such as the 10-year Moonshot effort that seeks to spend $1 billion/year on post-viral illnesses.
Kennedy could tell the NIH to produce major grants for long COVID.
- NIH Grant Initiatives – Kennedy could direct the NIH to produce major grant initiatives that support key areas of post-viral research, such as viral persistence, immune dysregulation, mitochondrial/metabolism, and autonomic nervous system dysregulation.
- Call for long-term strategic plan – Creating a long-term strategic plan to understand and find treatments for long COVID, Lyme disease, ME/CFS, and other post-viral diseases would go a long way to embed these diseases more firmly in the NIH.
- Funding the RECOVER Long-COVID Initiative – Kennedy could ensure that RECOVER remains fully funded, focuses more on causes, and displays creativity and innovation at all levels.
- FDA – Kennedy is, no doubt, very aware, given his son’s situation, that no FDA-approved drugs are present. Kennedy could fast-track FDA pathways for promising long-term COVID interventions.
- Conclusions – Whatever you think about Kennedy’s stances regarding other issues, note that long COVID, Lyme Disease, and other post-viral illnesses have never had a public ally at this level. How much time or political capital Kennedy’s willing to spend on these diseases is unclear, but personal considerations can go a long way in politics, and Kennedy has shown he can be very stubborn. Let’s hope his personal experience with these diseases results in a brighter future for them.
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The DOGE Effect
Thus far, he’s been in reaction mode – but so has every other department head in the US. If this were a boxing match between RFK Jr.’s DHHS and Elon Musk’s DOGE, RFK Jr. would have lost the first few rounds. Elon Musk, though, is on his way out, and RFK Jr. is sticking around.
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Elon Musk pledged to take a chainsaw to the federal government, and with DOGE, he has. (Image by Gage Skidmore from Surprise, AZ; Wikimedia Commons).
The NIH and CDC have enjoyed bipartisan support in the past, but DOGE hit them very hard. Almost $3 billion in existing contracts have been cut at the NIH, 1,600 jobs have been lost, and 4,000 jobs may be on the cutting block. Grants—already so hard to get—became doubly hard when grant rejections doubled. The NIH, under Trump, has used its ability to terminate grants to punish universities with which it’s not getting along. With 157 terminated grants, Columbia University, for instance, had about ten times as many grants terminated as other universities.
On the CDC’s side, up to 30% of the CDC’s staff are expected to be cut. In April alone, 2,400 jobs were cut, mostly in chronic disease prevention, HIV/AIDS, tuberculosis, gun violence, and programs serving Black and other minority communities.
Ian Lipkin’s ME/CFS research center at Columbia was reportedly hit hard. The CDC’s Chronic Fatigue Syndrome Program—the only federal program dedicated to ME/CFS—is at risk of being eliminated, and funding for the Congressionally Directed Medical Research Program (CDMRP)—an important source of funding for ME/CFS—has been slashed by almost 60%.
Solve M.E. has created two ways you can help with CDMRP funding.
- Ask your Members of Congress to sign the Dear Colleague Letter to Save the CDC Chronic Fatigue Syndrome Program & Continue the Inclusion of ME/CFS in the Congressionally Directed Medical Research Program (CDMRP) here: https://solvecfs.quorum.us/
campaign/124527/ - Ask your Members of Congress to sign the Dear Colleague Letter to Restore Funding to the Congressionally Directed Medical Research Program (CDMRP) more broadly here: https://solvecfs.quorum.us/
campaign/124343/ - Advocacy Week! – the biggest advocacy event of the year – Solve ME’s Advocacy Week is coming up – and what better time to join it? Advocacy week is a chance for US residents to make a difference at the highest level possible – at the legislative level. Register soon – registration for Advocacy Week ends on May 27th.
It should be noted, though, that no agency has been able to resist DOGE. While USAID is the most visible victim, job losses at agencies across the US government (80,000 at the Dept. of Veterans Affairs; the DHHS (20,000), the Social Security Administration, the Department of Education, etc.) have been high. Mass firings have even taken place in places one might have thought might be immune, such as agencies central to national security, including the Cybersecurity and Infrastructure Security Agency (CISA) (up to 40% reduction), the Dept. of Homeland Security (DHS), intelligence agencies, and the National Nuclear Security Administration (NNSA).
Trump Smacks Up Against Congressional Support for the NIH
The reason for President Trump’s antagonism towards the NIH, in particular, and medical research in general is unclear. During his first term, he repeatedly proposed significant budget cuts (10-15%) to the NIH, only to have Congress bat him down and raise NIH funding.
The House turned back President Trump’s attempt to dramatically slash the NIH’s budget.
Trump’s first term was kid stuff, though, compared to what he wants now. DOGE mandated that the NIH find a way to cut its budget by 35%, and on May 2nd, President Trump proposed a 40% cut to the NIH. At one point, one of the two main sponsors of ME/CFS and long-COVID research – the National Institute of Allergy and Infectious Diseases (NIAID), during one period, suffered the largest NIH funding cuts among all institutes, losing nearly $506 million in five weeks.
The House, though, does not want President Trump to kneecap the NIH. In fact, the House bill in its current form maintains NIH funding at its current levels (resulting in a drop in real terms but nothing like Trump wants). The CDC’s budget is, however, reduced by about 20%. Time will tell what the final budget looks like, but it suggests that bipartisan support for medical research remains strong.
Note that the House’s injunction to limit indirect costs at the NIH to an arbitrary 15% per reward could have significant negative effects. The Trump administration believes that cutting indirect funding will free up more funding for medical research. The universities counter that they need higher levels of indirect funding to maintain their research programs. Time will tell what happens. The idea to use a blanket percentage, though, doesn’t make sense given the vastly differences in costs of living across the country. This proposal might hit the best medical research programs, generally found in places with higher costs of living, the hardest.
Opportunities Await
Kennedy could start by reinstating the Office of Long COVID, the advisory group, etc.but that’s just a start.
NIH Reorganization
The pending NIH reorganization provides the opportunity to address a key concern: creating a home for post-viral illnesses.
Let’s assume that the NIH’s budget next year is stable. Both President Trump’s and the House budget proposal include consolidating the 27 NIH Centers and Institutes into five main Institutes (National Institutes on Body Systems Research, Neuroscience and Brain Research, General Medical Sciences, Disability Related Research, and Behavioral Health).
This is where it gets really interesting. Tremendous risks and opportunities exist during times of major reorganizations, which don’t come often. In fact, the last “major” structural reform at the NIH – launching the National Center for Advancing Translational Sciences (NCATS) in 2021 – seems like chump change now compared to what the Trump administration is proposing (and seems to be getting).
If diseases like ME/CFS, post-treatment Lyme disease, and long COVID need anything, it’s a place where they can be funded, investigated together, have standing, and be protected. Attempts to consolidate long COVID, ME/CFS, Lyme, and post-infectious research into an Office and dramatically increase funding were underway when Trump took office.
Lacking infrastructural backing, one could easily see them getting lost in a grand organizational restructuring. One wonders, though, who Kennedy has whispering in his ear about long COVID. If it’s anyone with expertise in these diseases, he’s probably hearing that long COVID (and related diseases) need a home.
One issue is that the proposed NIH reorganization still maintains a problematic superstructure: It differentiates “Body Systems Research” from “Neuroscience and Brain Research,” and the two are clearly connected in these diseases. Indeed, the inability to answer a simple question—where to put ME/CFS in the NIH (immune vs brain institute)—has been enormously and negatively impactful.
Even if the superstructure is not helpful, though, the reorganization still provides the opportunity to carve out a place for post-viral illnesses. RFK Jr.’s statement that the NIH and CDC are behind long-COVID research suggests there might be support in that area. Given all the other cuts and terminations, the fact that the terminated RECOVER grants were reinstated so quickly is promising in itself.
Kennedy could go a long way to fixing what’s broken by ensuring that post-viral diseases have a home in the new NIH.
Public support – Kennedy has sent messages, but a more fleshed-out public statement and a meeting with long-term COVID, post-treatment Lyme disease, and other post-viral illness advocates would be huge.
Support Congressional funding – Kennedy could provide public support for new Congressional appropriations for long COVID and related diseases, such as the 10-year Moonshot effort that seeks to spend $1 billion/year on post-viral illnesses.
Kennedy could tell the NIH to produce major grants for long COVID.
NIH Grant Initiatives – Aside from the Congressionally mandated RECOVER funding, the NIH has done little to support long COVID. Kennedy could direct the NIH to produce major grant initiatives that support key areas of post-viral research, such as viral persistence, immune dysregulation, mitochondrial/metabolism, and autonomic nervous system dysregulation.
Call for long-term strategic plan – Creating a long-term strategic plan to understand and find treatments for long COVID, Lyme disease, ME/CFS, and other post-viral diseases would go a long way to embed these diseases more firmly in the NIH.
Funding the RECOVER Long-COVID Initiative – Ensure that RECOVER remains fully funded, focuses more on causes, and displays creativity and innovation at all levels. Producing hearings that examine RECOVER’s successes and mistakes would be helpful.
Patient Registry – Commit to a national long-COVID and post-viral illness patient registry and biobank.
FDA – Kennedy has bemoaned the long times it takes to approve drugs and he is, no doubt, given his son’s situation, very aware that no FDA-approved drugs are present. Kennedy could fast-track FDA pathways for promising long-COVID interventions.
Conclusions
If he chooses to, Kennedy could make a huge difference in long COVID and post-viral illnesses.
Musk’s DOGE has left Kennedy (and every other department head) playing defense. With DOGE winding down, Kennedy has the opportunity to put his stamp on the NIH, CDC, and FDA. With Congress continuing to support NIH funding, Kennedy doesn’t have to worry about conflicting with the Trump administration’s desire to cut funding, he simply has to re-allocate what is present, and the NIH reorganization appears to provide a splendid opportunity to do that.
How much time or political capital Kennedy’s willing to spend on these diseases is unclear, but personal considerations can go a long way in politics, and Kennedy has shown he can be very stubborn. Let’s hope his personal experience with these diseases results in a new commitment and a brighter future for them.
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Such a great article! Lacking social media know-how, I can only pray RFK or someone around him reads it! But perhaps someone else here can figure out a way to get this article into that sphere of influence? It would be ironic but awesome if somehow Trumps election lead to people with ME, Long Covid, etc…finally breaking through the gas ceiling and no longer being gaslit, dismissed, and systemically neglected by mainstream medicine.
Sadly I’m pretty sure trump will make sure that this research will not happen or if it does then on minimal financial budget, barely enough to produce NOTHING.
This is what the US people have voted for.
Sadly this means the entire world is losing the battle for Long Covid or ME/CFS Research
There is no other country with meaningful investment into research
On the other side, Mito, note that the House bill basically keeps NIH funding where it is – and one would assume the Senate bill will – and so will the bill that lands on President Trumps desk as well. Trump doesn’t care about defunding the NIH enough to torpedo “the big beautiful bill” 🙂 over that.
One thing we’ve learned in legislation is that personal experiences can go a long, long way. Many supporters are supporters because they have family members, friends with these diseases.
Kennedy does not appear to be a shrinking violet – if he believes in something he will go for it. Hopefully he believes strongly enough to make long COVID and postviral research a priority.
Hi Cort, If his son is ill long enough and severely enough, I suspect he’ll seek out those researchers who already have many theories but no bucks to take the research further. Simmaron might be a good place to start. I know there are many other research facilities and researchers who might be helpful if Kennedy can come up with the bucks.
I think RFK Jr. is still being sane-washed far too much, and strategically its a mistake to reward any of his public statements, and think he could somehow be a positive force for the chronically ill community, when he has probably been one of the most singularly destructive individuals for US public health in history. And largely lacks the ability/qualification to be helpful even if he were an ally.
This statement holds even if he is more of a patsy than lead force.
In addition, at the Senate HHS budget meeting, the head of the Senate HELP committee (incl HHS/NIH/CDC/FDA), Republican Senator Cassidy from Alabama, also said his son greatly affected by Long Covid and he specifically also mentioned Myalgic Encephalomyelitis. Similar, Sen Kaine has been open about having Long Covid, and Senator Markey has been very supportive for ME/cfs/Long Covid. If we focus energy on calling Senates, House members, especially their Washington DC offices, especially Republicans who are in control, we could have OK chance to get more reasonable funding for ME/cfs/PASC etc.
http://www.senate.gov/senators/senators-contact.htm and http://www.house.gov/representatives/find-your-representative
You gotta love these a-hole “leaders” who only care about something after they’re personally affected by it. It’s pathetic, but also hopeless, as RFK has proven he’s crazy as a loon, dumb as a rock, with the attention span of a president — and a nitwit bureaucrat. God help us all.