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The GIST
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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.
Note! These are heated topics, but please refrain from name-calling and personal attacks (they will be removed), and please let’s focus on policies.
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.
My comment was for Cort. My apologies for sending it to Nancy Henson. I must have pushed the wrong button. OOPS!
Many, many researchers. You know research goes to where the money flows. Even beside the fact that these are fascinating diseases if RFK Jr. pumped money into them there’s no telling what would happen. Most researchers who actually get in contact with MECFS stick I think. Look at Nath – he’s out trying to get drug trials done.
Could you please expand on Nath’s efforts to get trials done? What are the efforts, and what are the drugs?
These bureaucrats need to get held to much greater account, in my opinion
Please turn off the comments for everyone’s sake. Especially on a day like today. It won’t help any of us. (In my humble opinion)
I am a strong believer in a free press but maybe it is not necessary here for us to express and fight over politics, or opinions on RFK Jr or politics. Let’s please move the ball forward *together*. The goal is a cure for and/or improvement in quality of life for millions of us who hail from all nationalities, ethnicities and include very young age children to the very old. This is bigger than any one of us. Success in this would potentially also mean help for other diseases and patients, as well.
Sorry – accidentally sent to lady who commented after Cory. This is for Cort. Thank you. As always, outstanding reporting and explanations.
I agree with you. I’m finding this newsletter to be getting more and more political. I’m not sure I’ll keep reading it. And I’m thinking about not contributing anymore.
Actually, change that to, I will not be contributing anymore
Hi Janet, I’m trying to be fair and please note these are unusual times.
President Trump really did try to cut the NIH’s budget by 40%. Doing so would have vast repercussions not just for ME/CFS (The NIH is still easily the biggest funder of ME/CFS research) but for diseases allied with it. On the other hand, the REPUBLICAN House -said no – we’re not going to cut NIH funding.
I guess you could make the case I’m either anti or pro-Republican. (Someone just commented that I’m too pro Trump (lol). You can say, though, that even with all the criticisms I’ve made regarding the NIH that I what I am is very pro NIH funding and I don’t support cuts to it.
Likewise, RFK Jr. is a polarizing figure but his son has it and he says he’s committed to long COVID research and that possibility is what I’m focused on.
The strength of the ME/CFS and Long Covid community is we tenaciously hold out hope.This administration’s leadership in Health and science may not be what we had hoped for but we have been calling for change for over 40 years. It is worth considering where positive change could happen. While I wouldn’t want any of them for my medical care there seems to be an openness to looking outside the box. We have had no FDA approved treatments and many have found some help with diet, supplements, alternative and natural medicine, There appears to be more openness to these alternatives. Dr. Markary at FDA wants to remove harmful chemicals in food and drugs. He is calling for the same quality standards of manufacturing and inspections in foreign drug manufacturing as in the US. Dr. Fauci failed us by his own admission. He has said part of the problem at NIH was entrenched mindsets that limited research and openness to new ideas. Let’s hope this is the change in mindset we need. Many have multiple chemical and food and drug sensitivities. While this isn’t the cure we want it can be a significant step forward. Certainly research and treatments are the priority but there are many other changes that could make a difference in our quality of life and medical care. While we advocate for more public awareness, research and medical education, we can also support and work for incremental change. I refuse to let politics limit my hope for treatment and care.
Yes, I’ve removed parts of some comments which are inflammatory. The goal of this post was to show that there is hope. I know these are heated times but let’s try to focus on the possibilities present.
.Thank you, Cort, VERY much and this information renews my hope! Nothing will be accomplished without communication and working together. The cut in funding for all these research efforts is unproductive and jeopardizes the time and money spent to get here. Go forward, support the research and researchers and the excellent work Cort does to share all the information he can access. I look forward to everything he sends to all of us. I have maintained hope for regaining a measure of health since 1981. I will continue to believe it is all possible if the research funding can keep going. Discovery and science take research – research takes money – no money, expect zero. Keep your eyes on the goal. Be there for research and knowledge, be there for all the people who care about you and this, and continue to fight for improvement and for your own life! You matter, we all matter – hang in there, please. We need you.
I always read the comments and learn from them as well as from Cort. I would hate to see them taken down. It’s like other things, if you don’t like them, don’t read them. But, please, allow for those of us who want to see other’s input the freedom to do so. Thank you. I want to recover and live the balance of my life. I wish you well.
For the first time, I am sad to read what you wrote. Are ME sufferers now relying on the fact that this (part of comment deleted – inflammatory) health secretary has a sick son to find relief while other illnesses research funds are getting cut ??? Even if a great research was to come through with this funding, I don’t think I could stand the look of patients sick with other diseases who are left
out to dry.
How about hanging in there with this illness and if you benefit and improve, turn around and give to another medical cause and help move all health efforts forward. Otherwise, none of us who are in need will get help and we will all suffer in isolation. I believe in fairness and caring about others, just as you do.
I agree with you Cort – high level people with personal experiences can be very influential. I will gladly cling to any shred of optimism in these uncertain times.
🙂
Why should he?
I was so hopeful for RFK jr. When he was running a grassroots initiative and trying to run for president (too bad it was all fake, as we learned when Trump literally bought him and had him drop the race) He had said absolutely insane things in regards to post vaccine syndrome in regards to the autism field, he’s basically said that people with autism are ALL un functioning and that’s extremely terrifying because if I have post vaccine syndrome from Covid, and that’s how he classifies a huge population of people that are all different, that current medical studies have shown that what he’s saying is incorrect, that’s how he’s going to view me…. This man has no medical knowledge and he’s still pumping out information that is as dumb, as idiotic as drinking bleach (hmmm remember tha back in 2020 when trump was in office the first time) this is a scary time we’re in and I’ve lost all hope. it’s the billionaires running the show now and they do not care about anybody that doesn’t have a bunch of money and is a white presenting male. We wonder why Luigi happened but we as a society are not making progress in the right direction. Violence is never the answer education is and our current administration seems to fall short of critical thinking skills. If health rising is pro the trump administration and pushing this agenda count me out. I’m not a fascist and I don’t wanna end up in a camp because of a medical issue. The privacy era is over and they’re already wanting to collect our information. This is insane.
One of the biggest reasons I voted for Trump was because of RFKjr . I hope he makes some headway .
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.
Why do you say that out of interest? I’m glad they’re looking into vaccines abd autism.
No way us the science settled on these issues because no one understands tge immune statem properly.
I’d say fauci is the worst thing that happened to anerica in recent history.
It’s documented FACT that he was funding the wuhan lab in coronavirus experiments leading up to the lab escape and subsequent pandemic with essentially a bioweapon.
What has rfk done so far that’s worse than that?
Unfortunately the whole “vaccines and Autism” question has focused on if vaccines cause autism. So any connection of vaccine harm in Autistic kids has been dismissed.
It’s pretty clear that Autism is genetic in origin, it’s highly hereditary there are just poor diagnostic rates of adults and specifically women. It just can’t be diagnosed before a kid is 2yrs old, so by then they’ve already had their early vaccines.
Maybe the question that should have been explored is “are Autistic kids more vulnerable to vaccine injury?” I mean, there’s a surprising overlap between ME/CFS and being Autistic which I’ve observed.
Autism research is not conclusive. there are many epigenetic processes ivlovled. the amount of toxins in our envirnment, be it organophosates, vaccines etc has increased since the 80s. this is fact. Its swtiching on epignetics that result in autism in more people. I
Whatever, the research is not finite. it needs looking into. I’m glad someone has the balls to say it
Oliver bird…THANK YOU THANK YOU THANK YOU
took the words from my mouth.
Putting one single person in charge of millions of lives is scary in itself
just to be clear, i’m horpeful, but not naive. There has been a change in the guard.
\the old system is not working for us
Yes medicine, if we look back, has been trading drugs for cures for decades now.
Diet cures many illnesses.
one example is Mrs.Gotschall that cured her daughter’ chrones or colitis with a 5 yr specific carbohydrate diet. She went and told the medical community only to be shunned.
I agree with everything you’ve said.
Corporate industries have ruined health anx medicine
Just some fact-checking of some of his recent statements https://www.factcheck.org/2025/02/factchecking-rfk-jr-s-other-health-claims-during-hhs-confirmation-hearings/.
This bloke is a menace and will do much more damage than good, with his ideological and anti-science stances.
What has he done over there to US health?
Agreed. None of this makes me trust him any more than I already didn’t. As much as I want to believe he’ll continue to back LC and ME research efforts.
I’m sad to see this rhetoric here. Cort is just supplying information about those suffering with this illness. I see him always fostering HOPE, as usual. Thank you Cort.
What “rhetoric”? I said nothing nasty or hateful. My comment wasn’t about Cort; I’ve long been a supporter of the information he gives us and the way he breaks it down (and I believe he knows that). But like it or not, RFK Jr. is a political figure and healthcare is very much a political issue. There’s no avoiding it. These politicians very much hold our fate, and particularly the fate of low income Americans, in their hands.
My comment is no different from when new research is presented here and commenters express doubts about it. So I respectfully reject your claim.
This wasn’t meant for you personally Amy. I must have hit the wrong button.
Got it, Geralyn – thanks for clarifying.
Amy. m.e has been a political football for decades. Focusing on Kennedy seems perverse a tthis point.
Look at Naviaux cell dasnger response. look at klimas work on gulf war syndrome. there isa link between vaccines and health adverse reactions. we need to delve deeper into that
This particular blog focuses on RFK Jr. so my comment is relevant to the subject. I understand there have been others before him who have not done what was needed politically.
yeah, but you can’t just pretend there is no context. This is a positive change. The rest are definitley bought a long time ago.
I welcome him. looking into this stuff. even putting this stuff into the public domain as an idea is positive and in step with many sceintists
They’re just words, Oliver. I’ll be happy to change my tune if his words are backed by actions.
Well here’s already had reports come back . Seems to be moving quickly. Please don’t get caught up on the red or blue partisan games.
We haven’t list anything with him being in charge. Our position is hopeless.
Words are ideas. Putting these ideas back into the mainstream, like environmental toxins hurting us at a cellular level. That’s more than just words. It’s a concept that us new to many people. Change will come from it.
It already has just by ys talking about it
Totally agree Greg – he says things that he then backtracks on and in general is not a fan of science or backing evidence-based medicine. I only hope that as others point to, if his son really has long COVID it will change his mind about the importance of research for it and he can be in a position of advocacy.
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
Thanks for pointing that out Mark. Cassidy was the one, I believe, who RFK Jr. replied to. It’s clear that bipartisanship still counts with the NIH and please let’s support Solve ME in their (our) work during advocacy week.
Then there were news reports about a hearing where RFK was reported to be uninformed about cuts made to ALS research. (Not knowing much about the health secretary, it’s not possible for me to say from the other side of the pond whether that might be due to personal or process reasons such as e.g. a possible communication slip-up, aspects of coordination, possibly competing interests within government, or other.) So, here’s crossing my fingers that while being personally affected via his son, he also is in a place for making it his mission to take the lead on and effect targeted action for LongCovid and ME/CFS.
This will be important prevention for all future pandemics and is therefore also a matter of national security in my opinion.
You gotta love these (part of comment deleted – inflammatory)”leaders” who only care about something after they’re personally affected by it. It’s pathetic, but also hopeless, (part of comment deleted – inflammatory)
I don’t think he is and he’s way more open than the stone cold deafness that has been our usual experience of dealing with politicians for the past 40 years or more.
The truth will put but I have some hope that someone who has a gut feeling and is chasing that is better than the establishment nonsense we’ve been subjected to.
Let’s not forget there are great scientists such as bob naviaux that recognise organophosphates abd vaccines are to the detriment of many of us. There is merit in investigating and doubling down on the science.
We’ve just lived through a man made pandemic. The previous administrations caused that. So I’m hopeful.
I’m British so I don’t know everything about Kennedy but I welcome the questioning of supposed established science
Very good article and perspective, thanks for this Cort. Times are a changing. Just imagine, what if the “Covid vaccine injuries” turn out to be delayed-onset Long COVID? Further, what if Long COVID and ME/CFS are both due to viral persistence in the brain and nerves, sites relatively protected from the immune system? Here is my blog that compares Long Vax and Long COVID symptoms (which are very similar to those of ME/CFS). And my viral persistence hypothesis.
its my belief that both covid and the vax can induce this state
It’s got to make me wonder if childhood vaccines are the cause of me/cfs etc. Could it be that the brewing started just after vaccination and takes decades to manifest…then the trigger or tipping point is a simple stressor to set the wheels in motion. I feel this is what happened to me. Ive felt something was off inside me for a very long time. Being around animals of all types my entire life has made me realize animals don’t get these types of ndiseases.my childhood vaccines included mercury and other harmful ingredients
This is the thing. People get so triggered just when you postulate a non consensus idea.
Science is about rigour , testing and retesting isn’t it.
If there are no problems, then great but as we’ve seen many times with all aspects of politics and corporations, people lie abd obfuscate.
Also two things can be true. Vaccines can save lives..but at what cost? And to who?
The asjuvants like mercury were a terrible decision.
Since 1986 , pharmaceutical s have been granted indemnity from prosecution, regarding vaccines.
That’s a tacit agreement that they do cause harm in a certain amount of people but it’s considered that ‘ herd immunity’ is more important.
I think each vaccine needs to be reviewed on a case by case basis.
The flu vaccine was tested on the u.s. military and it created a vulnerability to coronaviruses.
The fact is, we don’t know what we’re doing.
There are doubtless great things that have happened with vaccie( although these days I question even that statement more abd more, polio is back in gaza etc. Maybe small pox is the one true success story. Maybe there’s loads.
But is the cost to people with certain predispositios wortg a luce time of illness. For others?
People cite measles as an example of great vaccine efficacy abd j tend to agree but there’s a lot of nuance around the debate.
For example, catching measles naturally is suppose to confer protection against some cancers. That Is conjecture. But every action creates a reaction and we can’t forsee them all.
I think it’s probably more like that vaccines are like antibiotics, life saving , but also come with many health problems that can be devastating too.
As a child I 2aa supposed to receive my t.b. vaccine. I missed ghe schedule. After living in London during my twenties. I decided to go into education to teach asylum seekers. We were advised to get the vaccine. I went along for the pre vaccine test . Guess what? I’d developed immunity naturally.
I’ve just seen some of the Ukrainian POWS returning home. One had tuberculosis. Conjecture, but I bet he was vaxxed for t.b.
Seems to me that good living conditions and food are a very good vaccine in themselves.
The aimish seem to be fine without vaccination.
I’m not anti vaccine despite ehat I’ve said. But I agree with you. I’ve let off for a long time.
Any environmental pollutant including vaccines could’ve caused that.
But the field needs to be reexamined.
I wish the reactionaries were quiet so extreme. Let’s set aside money and politics and retest these ideas with science
Agreed. And it’s been know for 2-3 years now that both the virus and the vaccine contribute to worse health outcomes and early mortality, with the virus being significantly worse than the vaccine. It’s likely the same with LC/ME/CFS – higher risk from the virus than the vaccine.
I don’t know if we can draw any conclusions from the mrna vaccine. We will need at least a decades worth of data. Don’t forget, the vaccine doesn’t stop contraction of the disease.
In the uk, you don’t get th e vaccine unless you are over the age of 65 or younger with serious health complications.
To me that’s tacit agreement that the virus is not as dangerous as the potential harms of the vaccine.
It’s a mass experiment that will need close scrutiny.
Some of the studies coming out recently point to large numbers of death and injury from the vaccine.
We need honest players, independent, looking into this.
Does it matter?
The spending has been so wasteful, even when it’s been available.
Nath et al’s study, for example, was underwhelming.
And they are trialling melatonin and modafinil for long covid? Really?
Maureen Hanson’s doing incredible work with her NIH funding – just to point out one thing – she’s shown on a variety of molecular levels ME/CFS patients bodies are not responding to exercise. Liisa Selin’s T-cell work was helped out by a huge NIH grant. I disagree about Nath – altho the study was cut short the findings suggested that B-cells play a major role and Nath has used those results to beat the bushes to get a drug trial funded. He hasn’t succeeded yet but he got enough backing from the NIH that all he needed was for the drug companies to give him the drug. Wang’s WASF3 finding was funded by the NIH – and Nath is now working with him.
Yes, RECOVER fell flat with the first round of trials but they’ve regrouped and taking a more creative approach this time around. So, yes, NIH funding DOES matter.
Fair enough, I was partly just being provocative.
But I don’t really agree on Nath – 19 was a pathetic number of patients, and far too small to really mean anything very significant in terms of results.
🙂 Actually the results Nath was able to produce given the small size spoke very well of it, I thought! The ability to differentiatebetween healthy controls and ME/CFS patients in the omics studies using gender was phenomenal. This has really been overlooked IMHO. 🙂
RFK Jr has long had an interest in ME/CFS and more recently Long Covid.
(I don’t agree with his other policies) but I have more hope for these diseases than the past NIH administration that we seem to be forgetting were terrible for ME/CFS. Let’s not forget 3 decades of extreme underfunding by Fauci. (known as the ‘Darth Vader’ against ME/CFS). It was bad, very, very bad.
Then around 2020-2021 Fauci had the audacity to suddenly flip and say “Long Covid looked remarkably like ME/CFS”. That statement shows he knew all along ME/CFS was a genuine disease, so why did he hardly fund it?
Anyway theres hope now we may see some targeted funding improvement under RFK. However it might not be in the research programs we want. Most likely RFK will be looking at Long Vax, as he has stated that in the past.
But Long Vax research will still help ME/CFS and LC anyway because the disease result after an immune hit like an infection or on rare occasions a vaccination looks the same anyway. As the actual initial ‘immune hit’ might not be the cause, it’s more likely the catalyst (tipping point and push) for people prone to developing ME/CFS or similar Post Viral Illness.
So fingers crossed something improves beyond the dark days of Fauci’s ‘Galactic Empire’ of the NIH and its anti ME/CFS underfunding policies.
Problem is RFK is not part of ‘The Rebel Alliance’ of ME/CFS and LC warriors, He’s more like ‘Salacious Crumb’ looks just like him too! lol (the creepy little pet of Jabba the Hutt)
https://www.starwars.com/databank/salacious-crumb
While on the Star Wars theme, Anyone notice how Trump also acts a lot like Jabba the Hutt? lol
I emailed him, my governor and other state officials,and also the White House about ME/CFS and my personal situation. I got an email very quickly from make America healthy again, they said unfortunately they themselves couldn’t help me, but provided RFK’s email (which I already emailed) they were very personable and had obviously read my email, and even linked something they hoped could help (it was a “advantages of sunlight” video….they tried. One of the best things we can do right now is email or call government officials because there is such a big chance for change right now!
16% to 22% of the world population is disabled by long COVID’s up to 203 symptoms. Please help us regain our lives. Thank you.
Hi Joan, 22% of the world population? That’s approaching 2 billion people who have long covid. That seems very exaggerated to me. Do you have a study that supports your claim?
I first became sick in 1980, but was not diagnosed with ME/CFS (not the name at the time) until 1984. In the intervening 45 years, not one study of ME/CFS has provided anything that improved any of my symptoms.
Here is what has helped:
Immunopro (which I have taken for years to prevent respiratory illness) was recommended by a physician’s assistant and the only time I have had the flu was when I forgot to take it on a trip.
Cell signaling factors, Nexavir and high does of B-12 all were from Dr. Paul Cheney. These keep me functioning pretty well until I got Covid which knocked me down.
In 2022-23, when I got Covid twice followed by a-fib and high blood pressure, my son said to take CO-Q10 which worked remarkably well.
When I had recurrent kidney infections, my ND recommended D-Mannose and later quercetin for Covid. Both worked very well.
For recurrent stomach problems, I found the “My Lady of Lyme” site and began to take her recommendations for a digestive enzyme and liquid Aloe. Both were life changing.
From my own work, I learned about taking a clay supplement that can absorb toxins in food. Now eating out isn’t as scary.
Currently I am embarking on a course of reflexology to deal with the terrible balance and walking problems I had after Covid. It seems to be working since I was able to walk around Charleston without a cane.
I learned about reflexology from a book by Anne Romney, wife of the former presidential candidate. When she developed MS, they offered her no hope, but patients kept calling about reflexology which she finally tried and was able to get out of a wheelchair and actually competed in dressage at the Olympics.
I have a drawerful of things that I have tried that didn’t work. But, none of these, pro or con, came out of ANY of the ME/CFS research to date.
I think it is high time for a do-over. I think every funded study should be replicated at 3 centers, so at the end of it all we really know something. Piece-meal funding accomplishes nothing except to support the research program. We don’t need another study that shows the people with ME/CFS get worse after exercise. They could have actually just taken our word for it.
Quit tell us it is “something” in our blood. Figure it out. In fact, all future ME/CFS studies should focus on this so we can come up with effective treatment. How can you treat what you don’t know is there?
And, please spare me the whining about funding. On a budget of around $100,000 a year, our organization got a dangerous drug, that had been on the market for 25 years, off the worldwide market; found a cluster of cleft palate cases associated with solvents leaking from a landfill in Tennessee and got the EPA to come to the community; identified a rare cranial-birth defect in the children of Gulf War veterans that was subsequently verified by a DOD study; did seminal research on male-mediated birth defects in the children of Vietnam veterans and have an important report coming out on the probable origin of the huge increase in Autism Spectrum Disorders since the 1970’s. Spoiler alert! it is not genetic although genetic predisposition figures into all illness.
Thank you for sharing what helped! May I ask what “Cell signaling factors” and ImmunoPro are? There seem to be many different products/medications with the name ImmunoPro. Thank you very much! And I am very curious about your upcoming report.
Hi JR, Immunopro is a whey-based product with lactoferrin. Is is by Well-Wisdom and available on Amazon. It is about $40 a month at 2 scoops a day, but I would recommend that if you try it, you start with a small dose, maybe a half tsp. a day and build up. As I mentioned, a physician’s assistant recommended it a long time ago and I take it and give it to my husband. His 92 year old friend has done well with it and is very healthy. We never get colds or flu, but it didn’t seem to prevent us from getting Covid infection.
Regarding cell-signaling factors, these were developed by Dr. Paul Cheney, but some similar work has gone on in Germany. These are very potent gels made from bison organs: one for brain and one for heart. And then there is the one made from pig brain that is like-stem cells in a bottle. I can only take it twice a week as it is very powerful. Dr. Cheney made these gels himself and after he died, his family holds the patent and continues to make the gels. I found them very effective against ME/CFS, but not as much against Covid.
If you go to the Facebook page, Remembering Dr. Cheney, you can ask about ordering the gels. I don’t think Cort will allow me to put my email in a post or I could tell you how to order them.
For Covid, I use Nexavir, also recommended by Dr. Cheney. This is a new version of a very old anti-viral Kutapressin that is made from pig liver. You can purchase a cream form directly from the company https://www.nexco-pharma.com/. Some people find the injectable product more potent, but you need a prescription for that. I did not find that the RX helped me as much as the cream form.
Nexavir is helpful in both ME/CFS and Long Covid.
All these upsets in the US government are causing a lot of strong feelings and so I applaud you, Cort, for not turning off the comments. People need to emote!
And sorry for the readers from other countries who are exposed to all of these political comments. Lest you think if you live in another country you are immune, US government funded research has impacted world wide health discoveries, directly and indirectly, so these issues do impact everybody.
As far as RFKjr is concerned, as with many politicians, there are good aspects and bad aspects of his policy–the devil is in the details. As DOGE has torn up many of the US Departments, it might take a while for them to reconstitute and hopefully return much needed programs. (Not that I am a big fan–just trying to be optimistic).
What I am very concerned about is the contents of Trump’s Big Beautiful Bill which just passed the House. Yes, we need research, but people living with these fatiguing conditions need help NOW for housing, food, and medical support. This Bill has yet to go through the Senate and additional modifications, but as I read through the contents I am shocked at how much aid will be stripped from people disadvantaged by their health conditions. I invite American citizens to have a look and consider how this will impact their lives!
Hidden in this Bill is also language which will weaken the judiciary and give the President powers to ignore various rulings. Should we let privileged lawmakers, who are well provided for, make the rules for people they can barely identify with; the sick and poor? Even if there are research breakthroughs, if one does not have the money or position to take advantage of them, will it all even matter?
This should put a fire under your butt to make yourself heard–write, protest, vote.
I mean I hope you’re right, but RFK Jr is a lifelong fraud and massive grifter so I’m not really holding out much hope. He also ignores what actual science says and just goes with whatever suits his confirmation biases. He also has zero education in any of the science disciplines. He’s never cared about anything but money, that and women.
I’ve heard Kennedy mention the idea of residential facilities to provide more substantive support to people with chronic illnesses. While I agree with critics on many of their concerns when it comes to this, I’ve always thought that there needs to be much more investment in systems of direct care. From housing, to nursing, to help with ADLs (like preparing nutritious food), the current set of systems are overburdened, underfunded, and weighted toward pharmaceutical interventions more than environmentally supportive ones (unless you are very wealthy).
My concern, however, is that without the proper biological understanding of ME/CFS and related diseases, people in the sphere that Kennedy is most familiar with (anti-aging/optimization nutraceutical mind/body type approaches) may muddy the waters by leaning too hard on untested “treatments” and the snake oil industry (who have their own financial incentives). Certainly, some of these approaches might actually bear fruit in rigorous scientific studies and trials in the future. Still, there’s a flip side to this coin: our disease could once again be tainted with the stain of pseudoscience and quackery that we have only recently barely begun to claw our way out from under.
The direction we were headed in before this administration was likely to take more time, but it was less risky. Kennedy’s approach could produce a bigger reward, but it could also make things worse than ever. Partnering with him could also forever tie us to him if the tides turn once again and he and everything he touches become a pariah.
There was literally no direction previously. For decades. Let’s be real.
It’s unlikely RFK and this administration will help anyone do anything. They are the least educated group of individuals, this country has ever put into office.
RFK is more likely to suggest a sacrificial chicken as a cure for M.E or long covid!
He is an embarrassment!!!
Please members of congress continue research funding for a long-term strategic plan to understand and find treatments for long COVID, Lyme disease, ME/CFS, and other post-viral diseases. Continue to fund NIH, for
the RECOVER. I am a disabled nurse who has battled 5 years of long COVID syndrome, CFS, post Lyme disease, EBV. My daughter is also disabled from Post Infectious Lyme disease since age 21 and can no longer work as a nurse due to multiple chronic symptoms that never go away …
Can we be sure he’s not merely ‘Garner’ing us (UK folks will know) into a bait-and-switch where said family member gets cured by brain retraining and the rest of us are malingering? Intended to maintain the current status quo, which favours insurance companies, welfare etc? See also: PACE trial.
A lot of the cuts are driven by the Heritage Foundation and their Project 2025. You can go to their website and read their beliefs on funding for yourself. They essentially don’t believe there should be ANY funding of tax dollars into scientific research. They border on the edge of not even believing in the germ theory, they essentially believe that for the most part health problems are a result of one’s moral failure. For example they were the biggest reason for the elimination of USAID, and what appears to be the biggest reason is our funding to prevent the spread of HIV around the world, but they also talk about how hunger and famine are results of moral failure as well. They say diseases like HIV are “lifestyle diseases” and are punishments from god, and that we should not be helping to eradicate them, that not only do those people deserve to die but they go even further and talk about how we should sanction countries with high rates of HIV and even imprison our own citizens who have contracted it. But it’s not only HIV, they feel especially strong about this one because of homosexuality, but they believe anyone suffering is a result of their own moral failure, like us with ME/CFS. Same with people who are starving like I noted above. They believe their god rewards those of high moral standing and punishes the others. And 75% of Trump’s cabinet are members or even architects of Project 2025, in fact the guy who will be taking over Musk’s job for DOGE is one of the authors. It’s pretty scary the more and more you read into their ideology and what they want to turn our nation into. But that’s the main reason for the attack on our largest research universities and the massive defunding in research.
Worried long Covid is taking away research on ME/CFS.