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“May you live in interesting times” Apocryphal Chinese curse
What happens from here, nobody knows.
We’re living in interesting times, that’s for sure. This blog attempts to gauge the state of ME/CFS, FM, long COVID, and similar diseases given the Trump administration’s actions at the NIH, CDC, and FDA.
It also aims to provide some background for the #MEAction Townhall, which will discuss these issues tomorrow at 2 pm PST/5 pm EST. (The town hall is being recorded.)
Besides the ordinary issues with funding ME/CFS and long COVID, several pans were in the fire. A rare ME/CFS grant opportunity and two long-COVID grant opportunities had been slated to be posted at the end of last year (and were not).
Advocacy efforts like the Long COVID—ME/CFS—Post-infectious Moonshot and the push to create an Office for post-infectious diseases were also underway. MEAction should be able to tell us where they are at.
First comes a timeline, then a look at what we know about the main actors’ views regarding long COVID. (We know nothing about their views on ME/CFS/FM).
Timeline
The National Institutes of Health
On Jan 22nd, the Trump administration froze all travel. On Jan 27th, it froze all federal grants and loans, including those at the NIH, pending further review. In response to a court order, the freeze was rescinded on Jan 28th. On Feb 1st, a judge extended the order, stopping the Trump administration from freezing all grants and loans.
Indirect Funding for Medical Research Ordered Slashed
The Trump administration ordered that indirect funding for past and future medical research be dramatically slashed. A court challenge is underway.
On February 5th, the Trump administration ordered that indirect funding for universities and institutions receiving federal research grants be slashed to 15% from an average of 30-40%. Indirect costs include renting and maintaining lab space, maintaining lab equipment, computational needs, administration, compliance, financial reporting, security, heating and cleaning, etc.
Because the Trump administration’s action applies to all grants—past and future grants—if the change is implemented, it will effectively hobble, to some degree, all ongoing NIH research. The administration asserted that “indirect funds” should be capped at what the Gates Foundation charges. However, the NIH supports more expensive, lab-intensive research than the Gates Foundation, which funds many disease prevention programs.
Lawyers suing the Trump administration pointed to a $200 million neuroscience lab at the California Institute of Technology that the university had expected to use federal funds to help pay for. My understanding is that government uses broad formulas to determine the indirect funding rates for each institution based on the institution’s location, the cost of doing business there, etc.
Citing the familiar “we’re getting ripped off theme,” the Trump administration notes that universities are sometimes willing to accept charitable funding that provides less indirect funding, and asserts that cutting indirect funding will allow the NIH to do more research, not less. Administration officials have stated that they believe universities are siphoning off some of the money to use in DEI programs.
Critics of the move point out that charitable funding is the exception, not the rule, at medical research institutions and that many universities are pumping their own money into medical research. They propose that removing onerous regulations would be a more effective way of improving research efficiency.
The ripped-off theme is a common one – and extends to trade deals with other countries, universities receiving grant money, defense contracts, international organizations, etc., and it’s a powerful argument: the last thing anyone wants to be perceived as is a “sucker”.
It’s certainly possible that the indirect funding should be re-evaluated, but it should be noted that the NIH (like the US in its trade deals) is in the catbird’s seat. Because the NIH has the funds (and the US has the wealthiest markets), it should be able to dictate terms. Because it has a strong incentive to produce as much good research as possible, it also has an incentive to keep indirect costs down as much as possible.
Critics of the move state that suddenly and uniformly slashing indirect costs will have dire effects. Top medical institutions such as UCSF, Yale, and Stanford stand to lose over $100 million/year.
On February 10th, in response to a lawsuit, a judge issued a temporary restraining order blocking the Trump administration from limiting indirect funding.
Layoffs
Thus far, about 1,200 NIH employees, or about 6% of its workforce, have been fired.
The layoffs began in mid-February. Thus far, approximately 1,200 NIH employees – most of whom were on probationary status, meaning they were relatively new hires – have been let go. Uniform emails told the employees – including those with excellent evaluations – that they were fired because of poor performance.
Seven hundred staff members at the Food and Drug Administration (FDA), which oversees the approval of drugs, and 750 members of the Centers for Disease Control (CDC) were fired. Dr. Steve Monroe, a former senior CDC official, stated the firings swept up people “regardless of whether they were filling an important role in the organization or how well they were performing.”
Hobbled Grant Review Panels
By hobbling the NIH’s review panels, the Trump administration effectively stopped most of the NIH’s future research funding.
The Trump administration administratively halted NIH research in its tracks when the Department of Health and Human Services – now led by RFK Jr. – placed an indefinite ban on grant review panels on Feb 21st. Since the vast majority of the NIH’s funding goes to grants, all of which must be reviewed – the NIH cannot fund more research without review panels. Of the 47 grant review panels scheduled to meet this week, 42 were canceled.
The Trump administration had stopped posting notices of these meetings – which is required by law – the day after Trump’s inauguration. Because the review panels cannot meet without public notice, that move also shut them out of future review panels. Jeremy Berg, who directed the National Institute of General Medical Sciences at the N.I.H. for eight years, called the move “Kafkaesque”.
Since grant review panels meet only a few times a year, researchers’ worries were accelerating. Carole LaBonne, a stem cell biologist at Northwestern University, called the disruption in funding “a crisis.” She said, “This crisis — and I’m not exaggerating by calling it a crisis — has already consumed one funding cycle … if this block to publishing in the register continues on much longer, it’s going to swallow two funding cycles, and that will put many labs out of business.”
By February 14th, approximately a billion dollars in NIH research funding had been nixed. On February 21st, a judge, citing the potential for “irreparable harm,” also suspended the Trump administration’s gambit to cut $4 billion from NIH funding immediately. A federal court hearing has been scheduled to determine the legality and implications of the proposed cap.
Long COVID-Specific Actions
Long COVID Advisory Committee Terminated
Committee chair, Todd Davenport, lamented the closing of the Long COVID committee.
The Sick Times reported that the Trump Administration commanded the Department of Health and Human Services (HHS) to terminate the Secretary’s Advisory Committee on Long COVID.
The order: “The committee was composed of 14 unpaid members and, after being approved in the fall of 2023, has just been sworn in, in January 2025. The council chair, Todd Davenport, stated, “This advisory committee had the chance to meaningfully shape what policy would look like as we drive towards approved tests and treatments for Long COVID…”
Long-COVID Disability Information Removed
Two weeks ago, The Sick Times reported that the Trump administration had removed all information on long COVID-19 disability from governmental websites. Long COVID-19 is also no longer listed as a disability in the Department of Labor’s AskJAN website, which provides information for employers on how to accommodate people with disabilities, legal information, links to blogs, etc.
CDC Removes Long COVID (and Other) Data
The Sick Times reported that the Trump administration ordered the CDC to remove data from the Household Pulse Survey from its website because it contained data on gender and sexual orientation. The Household Pulse is one of the few federal efforts tracking long-COVID prevalence.
The NIH’s RECOVER Long COVID Initiative Soldiers On
In a bit of good news, on Jan 31st, the Sick Times reported that, so far, it’s “business as usual” for the NIH’s RECOVER project. RECOVER has largely been unaffected thus far because it “operates separately from typical NIH research and grant processes.” It is funded differently, and outside contractors are largely running it.
The Main Players
The GIST
- This blog attempts to gauge the state of ME/CFS, FM, long COVID, and similar diseases, given the Trump administration’s actions at the NIH, CDC, and FDA. First, there is a timeline, and then, there is a look at what the figures at the top of these organizations think about long COVID. (No information on their views on ME/CFS or FM is available.)
- On Jan 27th, the Trump administration froze all federal grants and loans, including those at the NIH, pending further review – and then just as quickly rescinded the freeze in reaction to a court order.
- In February the Trump administration ordered that indirect funding for universities and institutions receiving federal research grants be slashed to 15% from an average of 30-40%.
- Indirect costs include renting and maintaining lab space, maintaining lab equipment, computational needs, administration, compliance, financial reporting, security, heating and cleaning, etc. Because the Trump administration’s action applies to all grants—past and future grants—if the order is implemented, it will effectively hobble, to some degree, all ongoing NIH research.
- The administration asserted that “indirect funds” should be capped at the maximum that Gates Foundation typically allows (15%). However, the NIH supports more expensive, lab-intensive research than the Gates Foundation, which funds many disease prevention programs. A court challenge is temporarily holding up the Trump administration’s order.
- The Trump administration responded by refusing to post public notices announcing the dates of review panels. Because public review is legally required the action stopped virtually all public reviews. Because review panels are required for grant approvals, the action effectively stopped the NIH from funding any new research. Researchers warned of labs being decimated if the grant review stoppage continued for another funding cycle.
- By February 14th, approximately a billion dollars in NIH research funding had been nixed. On February 21st, a judge, citing the potential for “irreparable harm,” also suspended the Trump administration’s gambit to cut $4 billion from NIH funding immediately.
- The Long COVID Advisory Committee was terminated, and information on long COVID prevalence on two websites was removed. All information on long COVID-19 disability was also removed, and long COVID-19 is no longer listed as a disability on governmental websites.
- In some good news, the Sick Times reported that, so far, it’s “business as usual” for the NIH’s RECOVER Initiative, which is funded in a different way than other programs.
- Thus far, approximately 1,200 NIH employees, or about 6% of the NIH’s workforce, 700 employees at the Food and Drug Administration (FDA), and 750 members of the Centers for Disease Control (CDC) have been fired.
- RFK Jr now leads the massive Dept. of Health and Human Services (annual budget $1.6 trillion, 88,000 employees) (NIH, CDC, FDA, AHRQ, Medicare/Medicaid).
- Kennedy’s anti-vaccine views, his promotion of debunked COVID-19 treatments like ivermectin and hydroxychloroquine, his endorsement of strange, conspiracy-like views (Lyme disease is a likely a military weapon, that Anthony Fauci personally profited from vaccines, that Bill Gates schemed to prolong the coronavirus pandemic), his skepticism about the source of HIV/AIDS, indicates that Kennedy is often far, far outside of the mainstream of scientific thought.
- Notably, though, Kennedy has called for more research into chronic illnesses and said he would direct resources to long COVID treatments and diagnostics “with enthusiasm.” Kennedy will also likely promote studies aimed at understanding the link between vaccines and the ME/CFS-like post-vaccine syndromes Kennedy, though, has also said he wants to pause funding for infectious disease research for 8 years—not a helpful idea for people with post-infectious diseases.
- Monica Bertagnolli’s resignation as NIH Director after just 14 months on the job was not a good sign as Bertagnolli had supported long-COVID research and the RECOVER Initiative’s welcome turnaround on its clinical trials.
- President Trump nominated Dr. Jay Bhattacharya, a health economist and professor of medicine, economics, and health research policy at Stanford University. Bhattacharya got a lot wrong during the pandemic (underestimating coronavirus virulence, overestimating recovery, support for herd immunity, downplaying long-term COVID), but he got one big thing right: more attention should have been paid to the societal costs of the shutdowns.
- Bhattacharya’s thoughts regarding long COVID at the present time are unclear. His plans to restructure the NIH and create “many more centers of power ” to prevent a small group of scientists or bureaucrats from dominating fields, to engage in more “high-risk, high-reward” projects, and to make the NIH more accountable to congressional oversight could be helpful.
- President Trump’s nominee to head the CDC, Dr. Dave Wheldon, appeared in the anti-vaccine film Vaxxed, where he questioned whether some vaccines could trigger autism. In a 2019 TV appearance, he claimed (incorrectly) that “some children can get an autism spectrum disorder from a vaccine. On the other hand, Weldon has stated that his children are fully vaccinated, plus Weldon’s interest in post-vaccination syndromes and the reactivation of Epstein-Barr virus could prove helpful.
- In December 2022, Dr. Marty Makary, President Trump’s choice to lead the Food & Drug Administration (FDA), stated in a Dec. 2022 WSJ op-ed that long COVID is real but that its effects have been “massively exaggerated,” “overplayed,” and “not as bad as advertised,” and that the federal government was feeding over $1 billion into the “long COVID medical-industrial complex.”
- #MEAction’s Townhall will discuss these issues tomorrow at 2 pm PST/5 pm EST. (The town hall is being recorded.) Sign up for MEAction’s Feb 25th Townhall Meeting
President Trump on Long COVID, ME/CFS, etc.
President Trump’s views on long COVID and ME/CFS are unknown and probably immaterial as he’s shown little interest in this subject. More important are the officials he’s appointed to lead the NIH, CDC, and FDA and the actions they and Elon Musk have taken.
RFK Jr – Director of the Department of Health and Human Services
RFK Jr.
The new head of the massive Dept. of Health and Human Services (annual budget $1.6 trillion, 88,000 employees) (NIH, CDC, FDA, AHRQ, Medicare/Medicaid) may be the most puzzling figure.
A longtime Democrat who has decried the levels of pollution communities of color are exposed to, who believes the middle class is being hollowed out by policies that favor the rich, and that climate change is an existential threat, Kennedy quickly became a leading figure in the Trump administration.
Kennedy’s anti-vaccine views, his claims that mercury in vaccines causes autism, his promotion of debunked COVID-19 treatments like ivermectin and hydroxychloroquine, his endorsement of strange, conspiracy-like views (Lyme disease is a likely a military weapon, that Anthony Fauci personally profited from vaccines, that Bill Gates schemed to prolong the coronavirus pandemic) indicates that Kennedy is often far, far outside of the mainstream of scientific thought.
In 2020, Kennedy wrote the foreword to “The Plague of Corruption” by disgraced former ME/CFS researcher and vaccine conspiracist Judy Mikovits. Kennedy also reportedly told a dinner party that “COVID-19 is targeted to attack Caucasians and Black people” but that Ashkenazi Jews and Chinese are less vulnerable. In May 2021, Kennedy petitioned the FDA to rescind authorization for all current and future COVID-19 vaccines.
In his book, The Real Anthony Fauci: Bill Gates, Big Pharma, and the War on Democracy and Public Health, Kennedy took issue with the “orthodoxy that HIV alone causes AIDS” and the “theology that HIV is the sole cause of AIDS.” He also repeated the false claim that no one has isolated the HIV virion.
Notably, though, Kennedy has called for more research into chronic illnesses and said he would direct resources to long-COVID treatments and diagnostics “with enthusiasm”. Kennedy, though, has also said he wants to pause funding for infectious disease research for 8 years – not a helpful idea at all for people with post-infectious diseases.
Time will tell, but Kennedy may be aiming at HIV – which has long enjoyed outsized funding at the NIH. Last year, the NIH spent $3.3 billion, or 7% of its entire budget, on HIV/AIDS. The amount of funding HIV/AIDS receives may demonstrate better than another condition how the NIH has allowed itself to be taken over by large disease contingents. Kennedy’s penchant for battling for what he believes to be the little man could conceivably lead him to align with diseases like long COVID and ME/CFS.
Kennedy will also likely promote studies aimed at understanding the link between vaccines and the ME/CFS-like post-vaccine syndromes that can result. (Akiko Iwasaki recently published a study on post-COVID vaccine syndrome.)
Kennedy has been so all over the place that it’s difficult to know where he will land or place his attention. Despite his penchant for fringe views, though, Kennedy presents a real opportunity for people with long COVID and related diseases.
Kennedy, however, has never run a large organization, and his inability to answer basic questions about Medicaid and Medicare at his hearing raises questions about his effectiveness in carrying out his initiatives. Time will tell!
Monica Bertagnolli’s Resignation
Monica Bertagnolli – a strong, long-COVID supporter – resigned from her position as NIH Director.
Monica Bertagnolli’s resignation as NIH Director after just 14 months on the job was not a good sign for long-COVID and ME/CFS patients. Bertagnolli had gone out of her way to support long-COVID research, supported the RECOVER Initiative’s welcome turnaround on its clinical trials, and had at least publicly supported ME/CFS research.
In short, she was a breath of fresh air after the long nightmare for ME/CFS that Anthony Fauci was. Enter Dr. Jay Bhattacharya.
Nominated NIH Director – Dr. Jay Bhattacharya
Trump’s nominee for NIH Director, Jay Bhattacharya, is a health economist and professor of medicine, economics, and health research policy at Stanford University. The Senate is expected to approve him. He has had his hits and misses.
Misses
Some of Dr. Bhattacharya ideas for reforming the NIH could be helpful. (Image from the American Institute for Economic Research – Wikimedia Commons)
Bhattacharya’s prediction early in the pandemic that the coronavirus virus would likely kill about 20,000 to 40,000 Americans was off by about 1,200,000 people. A widely criticized early study that grossly overestimated how many people had recovered suggested the disease was less deadly than it turned out to be.
The Great Barrington Declaration, which Bhattacharya co-wrote, proposed that herd immunity be adopted. Countries like Sweden, which adopted herd immunity, quickly experienced overwhelmed health services, suffered more deaths, and ultimately changed course. NIH Director Dr. Francis Collins referred to Bhattacharya and his co-authors as “fringe epidemiologists” and wrote, “This is not mainstream science. It’s dangerous. It fits into the political views of certain parts of our confused political establishment.”
Shortly after Bhattacharya declared in 2021 that the “majority of Indians have natural immunity” and discouraged vaccinations, millions of Indians died, and India suffered amongst the highest death rates of any country.
Hits
Bhattacharya may have been wrong about the dangers of the coronavirus, but many agree with his assertion that the societal costs of the measures taken during the pandemic should have been more fully considered.
Bhattacharya on Long COVID
Bhattacharya’s views towards long COVID are complicated by his belief that the lockdowns caused more socieoeconomic harms than benefits. As such, he believed that the costs of people getting long COVID were secondary to the educational, mental health, economic costs of the shutdowns.
Bhattacharya’s statement, “No matter what you think about how bad long COVID is, it does not justify lockdowns because the lockdowns do not prevent long COVID,” was at least partly based on his belief that younger people would quickly recover from the virus and not get long COVID. That turned out not to be true, as CDC statistics showed that many younger people (18–29-year-olds (18.4%), 30–39-year-olds (18.5%) came down with long COVID.
Whatever Bhattacharya’s past views on long COVID and post-infectious diseases are, I could find nothing on his present views.
Bhattacharya on Reforming the NIH
The NIH needs reform – could Bhattacharya be the man to do it?
The NIH’s $48 billion makes it easily the biggest medical research funder in the world. Funding approximately 50,000 grants that go to more than 300,000 researchers at 2,500 universities and other institutions, it employs nearly 18,000 people.
There’s no doubt that from the perspective of people with ME/CFS, fibromyalgia, and long COVID, the NIH badly needs reform. Decades of dramatic underfunding for tens of millions of people have demonstrated that NIH has failed in its mission to provide support for all Americans with illnesses.
Bhattacharya’s plans to restructure the NIH and create “many more centers of power ” to prevent a small group of scientists or bureaucrats from dominating fields could spell good news for diseases like ME/CFS and fibromyalgia, which have suffered under the NIH’s conventional grant system which has benefitted the ‘big diseases.” So could his commitment to engage in more “high-risk, high-reward” projects, and to make the NIH more accountable to congressional oversight. Likewise, he supports high-risk, high-reward research and expanding funding for unconventional, innovative projects.
The NIH’s inability to effectively grapple with new, complex health needs has been amply demonstrated by its work with long COVID-19. Four years later, long COVID-19, like ME/CFS, still has no established place in the NIH, and the fact that the RECOVER project has spent almost a billion dollars without producing major breakthroughs in long COVID-19 speaks to the highly conservative nature that pervades the NIH.
ME/CFS, FM, and long-term COVID advocates agree with Kennedy and Bhattacharya that the NIH needs reform; the question is whether their ideas for reform align.
Dr. Dave Weldon – Centers for Disease Control (CDC)
President Trump nominated Dr. Dave Weldon to be head of the Center for Disease Control (CDC). Weldon appeared in the anti-vaccine film Vaxxed, where he questioned whether some vaccines could trigger autism. In a 2019 TV appearance, he claimed (incorrectly) that “some children can get an autism spectrum disorder from a vaccine. On the other hand, Weldon has stated that his children are fully vaccinated.
However, Weldon’s interest in post-vaccination syndromes and the reactivation of Epstein-Barr virus could prove helpful. As an internal medicine doctor, he may also have experience treating long COVID and ME/CFS.
Marty Makary – Food and Drug Administration (FDA)
MEAction’s Townhall meeting is tomorrow – the 25th.
In December 2022, Dr. Marty Makary, President Trump’s choice to lead the Food & Drug Administration (FDA), stated in a Dec. 2022 WSJ op-ed that long COVID is real but that its effects have been “massively exaggerated,” “overplayed,” and “not as bad as advertised,” and that the federal government was feeding over $1 billion into the “long COVID medical-industrial complex.”
Conclusion
We live in interesting times indeed! With its extensive contacts at the Congressional level, MEAction is well-placed to inform us about what’s going on there, what we might expect, and what we can do.
I feel like pwME, along with other truly marginalized groups, have ultimately been thrown under the bus by those university and political elites who abandoned the working class and solidarity-based politics in general, for cheap and divisive identity politics over the last decade or so. It’s very clear that they walked, open-eyed, into a trap. But it’s not them who will suffer this backlash they caused.
People with disabilities were supposedly represented in ‘intersectional’ politics but let’s face it we were always at the bottom of the ‘progressive stack. And like climate change these kinds of issues should really transcend left-right politics as they affect people of all political stripes.
I am economically left-leaning in my views, and I think the lesson in all this, for when the pendulum inevitable swings back, is ‘let’s be very careful who we ally with’ in terms of cultural politics. As for now, I think it’s time to leave the ultra progressive ideologues to their fate and make use of whatever sensible elements we can find in the new administration. Now the maniacs like Trump and Musk are in charge (and Pollievre soon will be in Canada) but hopefully in chaos there is opportunity. I truly hope RFK can be a force for positive change despite his eccentricities.
RFK is an interesting figure isn’t he? Bhattacharya, too. From the perspective of people with ME/CFS and FM the NIH needs change. From the purpose of HIV/AIDS, cancer, diabetes, etc. fields – it’s probably doing pretty good.
I hope as outsiders they will take a fresh view of the NIH and conclude that it needs to become more equable in how it distributes its funds.
Thanks for trying to update us. However, so much of this seems entangled with political views, which, God forbid, we really don’t need to inject but rather need a clear-eyed assessment. Understood, this is impossible to unentangle on all levels due to funding, but, there are some really objectionable statements here that don’t belong in the conversation – “Kennedy’s…. promotion of debunked COVID-19 treatments like ivermectin and hydroxychloroquine” among one of the the most egregious. Anyone familiar with how effective these treatments were in saving lives, is going to rankle at the statement from the standard medical establishment who suppressed right to try, allowed employers and govt to force people to take vaccines that were dangerous or lose their jobs, and changed their assessments frequently. I appreciate leaders who are not in the corrupt clubhouse and promote right to try (or NOT) when life or death is at stake.
I personally am encouraged that a man with the courage to write the foreword to Judy Mikovits’ book Plague of Corruption is going to be in charge. This also means he is familiar with our disease and our plights as well as the corrupt nature of the system, which has harmed our population so much. I hope suramin will be given a chance / right to try. Many of us have waited decades for something, anything, and have been let down. I think we can sit back and see what a man who clearly has the moral conviction to do what is right and not what is promoting big pharma and agra can do for us and not let our political manias cloud that hope. Patience is a virtue, how can we do much worse than our prior leadership? Rome was not built in a day and there is no magic bullet but at least we can have some hope now.
(Basically, the argument can boil down to whom do you trust – the traditional medical estabishment, or people willing to make an honest patient-focused change in how we approach healthcare. And please, no TDS comments. At least Trump believes in right to try. If you want the govt telling you what to do or not in life or death situations, I guess you would not be for this. Your right but don’t push your opinion on others. However I don’t want to argue about it as we won’t change each other’s minds).
🙂
I knew the ivermectin and hydroxychloroquine sentence was going to rankle some people but that’s what the studies – which have now been done in thousands of people – have shown. Ivermectin was not shown to be dangerous but hydroxy was shown to be associated with an increased risk of death.
https://jamanetwork.com/journals/jama/fullarticle/2801828
https://www.nature.com/articles/s41467-021-22446-z
I know a lot of people support those drugs but, for me, in the end, I have to go with studies.
I hope you’re right that RFK’s familiarity with Judy Mikovits will cause him to support us. Whatever you think about Judy Mikovits – and there’s a lot to think about her 🙂 – she’s always been a staunch advocate for ME/CFS.
Let’s hope that’s rubbed off on him. Thanks for mentioning that possibility.
Thanks, Cort. I don’t have the references at hand but at least some of the studies on hydroxy from what I recall, were biased (waiting too long to administer the drug, not giving the proper dosage, etc.). I also know doctors working in emergency medicine who saved patients with the drug, although it resulted in battles with hospital administration (many more anecdotes and personal stories). I think Judy M. was also unjustly maligned / persecuted, should not have been disgraced, and that we ignore her voice at our peril. (A colleague told me with excitement in 2010 that a scientist had discovered a virus that she felt was responsible for CFS. I thanked her, but said, “you won’t hear anything more about this. This disease is far too political and any such research will be suppressed.” She looked at me like I was eccentric, but I was proved correct on that. I think there is more to Judy’s story than the seeds of a conspiracy theory.) I do not give as much respect to the standard medical establishment or the studies it recognizes as you do, clearly. But again, I appreciate you for doing your best always to share info with civility and optimism in a way that you feel is the most responsible.
Cort, Linda’s right about IVM- you provided a link to one meta analysis. But the majority of RCTs as well as the majority of the meta analyses of those RCTs have found significant positive effect.
Last time I checked, 9 or so meta-analyses/systematic reviews have been done. Most have supported Ivermectin.
Here’s four of them:
ivmmeta.com
https://journals.lww.com/americantherapeutics/Fulltext/2021/08000/Ivermectin_for_Prevention_and_Treatment_of.7.aspx
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8088823/pdf/ajt-28-e299.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8005369/
Yes, Ivermectin looked good for awhile but those studies go back to 2021 but the latest don’t show benefits. I don’t know there’s the difference.
https://pubmed.ncbi.nlm.nih.gov/38908535/ – 2024 – 7000 participants
https://pubmed.ncbi.nlm.nih.gov/38510038/ – 2024 – 10,500
. Thirty-three RCTs (n = 10,489) were included. No significant difference in all-cause mortality rates or PCR negative conversion between IVM and controls. There were significant differences in MV requirement (RR 0.67, 95% CI 0.47-0.96) and AEs (RR 0.87, 95% CI 0.80-0.95) between the two groups. Ivermectin could reduce the risk of mechanical ventilation requirement (So there is that).
https://pubmed.ncbi.nlm.nih.gov/38314347/ – 2024 – 22,000 – no effect
https://pubmed.ncbi.nlm.nih.gov/36993029/ – 2022 – no effect
https://pubmed.ncbi.nlm.nih.gov/36879183/ – 2023 – did reduce time to clearance of virus – but only 3 small studies
https://pubmed.ncbi.nlm.nih.gov/35870876/ – 6300 – The evidence suggests that ivermectin does not reduce mortality risk and the risk of mechanical ventilation requirement.
RFK is sympathetic at least to the concerns of pwME and Lyme- he devoted full podcast episodes to each. ME one was with Hillary Johnson as co-host!
Also, it is plausible that Lyme was developed as a bioweapon at Plum Island, NY near Lyme, CT. Employees have gone on record that the whole job of the Plum Island lab was Borrelia gain of function…
Linda, very well written and thought provoking! We are all going to try something new and hope for the best.
Thank you, Susan! I appreciate your perspective and the thoughtful comments that you’ve contributed here as well.
Just in case people new to CFS or long COVID are reading this, it’s important to note the post here is pure quackery.
Hydroxychloroquine does not works against Covid or CFS. This is misinformation spread by Trump administration and social media.
Judy Mikovits is a fraudulent con woman who went to jail. These thing are common knowledge for those who don’t spread alternative facts.
One of the only things missing in this post is Trump suggesting ingesting disinfectants. Please don’t do this either.
Please don’t get your science information from social media or a sociopath.
By blaming the previous administration this post reflects BDS.
I would add to the “don’ts” list – don’t be so imperious as to tell other people what to do or think. Only an omniscient power has the answers to all this. In giving such commands, you are pretending that you are the truth and the science (like someone else’s name I won’t mention). Quite a claim. You are entitled to your opinion, which many people would find distorted. Let people come to their own conclusions or theories based on their research. Most of us are more than tired of the pontificating partisans who have tried to squash any opposing opinions over the past several years and replace it with what appears to many as being derived from a fantasy world concocted to fit their naive world views.
Cort, I appreciate your efforts here. Although I feel some of the facts cited from the standard medical establishment are biased, I think you personally have tried to present most of the information in a balanced manner. My earlier comment was a general one prompted partly by some of the more political comments made here which really can cloud the reality of the situation we’re facing.
Thanks Linda – I tried to report evenly. While I don’t like to see drops in NIH funding, I am holding out the possibility that the different cast of characters we have now might be just what our diseases, at least, need at the NIH. God knows the NIH needs a good shakeup! I just hope it gets the right shakeup.
Time will tell!
You can’t say we aren’t living in very interesting times (lol)!
Indeed, some feel it is a real privilege! I hope that folks like you and I whose youths were snatched away, will get to see some kind of benefit. However, as I said in another comment, at least there is now some hope that future generations may benefit from this move to a more moral approach to medicine that hopefully, we can sustain… Best to us all!
I appreciate your balanced and sensible comment. I think I replied earlier to you by mistake, when I meant it to be a general comment about the content of this article rather than a direct reply.
‘Suspend for 8 years’? Wow.
I had hope some of the research going on for the past 5 years into Long Covid might result in something (it hasn’t yet) that could actually TREAT or CURE patients with post-viral illnesses.
Instead, it looks like any research has lost a decade, and there IS NO HOPE for the present patients unless some lucky researcher gets a Nobel Prize for finding the answers by accident.
I don’t know why I bother any more. This will be with me until I die, at this rate. I’m 75, have had ME/CFS for THIRTY-FIVE years, and a decade isn’t something I have to wait with.
I sincerely hope the people who voted for this travesty are happy. We’ve always needed a miracle; now we need orders of magnitude more than that.
Alicia, you and I are in the same category of older people (74) who have lived with ME/CFIDS for over three decades. Please don’t give up; that’s what the opposition wants. We haven’t got much steam, but we can still send short emails and postcards (yup!) when we feel strongly.
And we need to take extra good care of ourselves and help others with these illnesses out when we can with donations & emotional support & shared knowledge. Cort is our role model here – he never gives up!
Thanks. Kind of you to try to cheer me up – I’m usually the one trying to get other people to realize research is happening, and we need to hang on.
But this post wasn’t very helpful – all I can see is timelines and research destroyed.
My own protest is that I write mainstream fiction with an ME/CFS main character – and I’m the slowest writer on the planet, but I keep going. It’s been over 24 years now – the first two books are on Amazon.
I have been having extra trouble with the third volume, but now I’m more discouraged than before. It’s slow – and the solution feels farther away (not that I need that to be resolved – I do write realistic fiction.
I didn’t need these four years – it’s hard enough when things are going reasonably well. I’ll keep going – what else is there to do? But it just got harder.
Great attitude!
I, too, am 75 and have had ME/CFS for over 35 years. It took many of those years to even find a doctor to diagnose it.
Now, my fears are not just about the prognosis, although that is bad enough, but about the means available to support myself as it progresses…HUD voucher, Social Security, Medicaid, Medicare, public assistance and SNAP. Not to mention the non-profits that are supporting me through this, the tele-medicine and groups that advocate for all of us, like the ADA. This is what truly terrifies me right now.
To think that the view of this illness is that it is not disabling numbs my mind. The new Trump administration is truly cruel…you are right that we need miracles!!
Don’t give up hope. Getting rid of the corrupt approach to medicine is one of the most amazing and hopeful things I’ve seen since getting CFS almost 40 years ago. We just may benefit, but if we don’t, at least there is now some hope for future generations.
Yes, Americans democratically elected the Trump administration. But “democracy” depends on an informed and wise electorate; unfortunately, too many voters who voted for Trump did not seem to be fully aware of his administration’s intention to gut government in the (false) name of corruption and fraud.
Perhaps the painful consequences will instruct uninformed voters for future elections. One can hope, anyway.
PS. Canadian research universities and institutions welcome disaffected American research-practitioners.
Ummmmm no. It is absolutely not false. (Personal attack – part of comment deleted).
Perhaps they were fully aware of the policies they were getting with electing him and decided the pain of losing some research grants was worth the price of getting government spending under control. Different priorities doesn’t mean people don’t know what will happen, so why make unfounded accusations? Hopefully. Kennedy will balance the available research dollars more equitably than they have been in the past.
No, the facts show that US swing voters who moved to the GOP in November primarily did that because of the rising cost of food, petrolium, and housing. They did not want a sledgehammer being appled to important goventment programs and investments; damaging competence and efficiency – as that was MAGA’s goal — rather than improve these.
The US investing in basic and specific applied research creates multiple benefits in American society, including private sector growth.
If anyone read about Project 2025 from The Heritage Foundation, they would have seen the writing on the wall. The whole dystopian scenario is there. Kamala Harris and those on the left were sounding the alarm bells, but not enough people believed it.
As I said, democracy depends on an INFORMED, ENGAGED, and WISE electorate. Trump and MAGA successfully sold (lied) about (A) their not wanting to implement Project 2025 and (B) their magically being able to reduce the cost of living.
Based on Trump/MAGA’s pattern of lying, informed voters would not have been fooled about these and other lies. C’est la vie.
Hopefully!!!
The mask has dropped. If Putin wants research set back that is what you will get.
Thank you for this thorough review of how current policy and personnel changes could affect those of us suffering from ME/CFS, Long Covid and the like. I’m appalled by the sledgehammer approach to NIH funding and look forward to the town hall–we all need to make our concerns known!
p.s. A related issue is that a good portion of (red) states are suing to end 504 protections for kids with disabilities in schools. If they are successful, this would absolutely be a nightmare for any family needing accommodations in educational settings. Get loud!
I take a broader view of what’s going on in the research facilities. The US is so far in debt. The level of wasteful and potentially fraudulent spending is astonishing! Our country will sink soon at the rate it’s going. At that point there will be no money for research of any kind. It’s crucial that we get our finances in order to have any kind of hope for a cure/viable treatment for CFS. Spending needs to be cut across the board. After our government knocks out the waste hopefully research into CFS will continue and possibly accelerate. Let’s not pretend research has been moving at the pace it should be. Perhaps if tax dollars used for transgender surgeries across the world had been directed toward researching our disease, we would be full of energy right now!
WOW!!!
How much money exactly has been spent on “transgender surgeries across the world?” (My bet is zero. Please share your legitimate sources.) Compared to the $10 million a day that the fake “DOGE” department is getting paid? They are not cutting ANY waste, fraud, or abuse… they are just finding every way they can to line Elon Musk’s pockets and slash all services to hard working and disabled Americans.
You DO agree that we keep going further and further in debt, right? Republican AND democrat politicians are complicit. How do you think this happened? We, as a country, overspend. We MUST cut our spending! If I thought for a minute that driving our country further in debt until it collapsed would cure some of the diseases out there, I’d be all for it. Common sense says this isn’t reality.
As for politics, it’s way too early to tell the extent of the wasteful spending and fraud. YOU are not in the position to determine this either. People who are unable to work, will still get their benefits. If our country goes under, the disabled will be much worse off.
The irony of that though is during Trump’s 2016 term to 202O the national debt increased under Trump by nearly 40% . It was the highest increase in a four year period of any other president in history.
The reason was he made massive tax cuts for the mega-rich and corporations. Many economists who warned of that happening and it did.
Now he’s back and instead of texting the filthy rich more he’s targeting middle class people who are doing their best to keep America stable. Now I’m okay with investigation and spending etc. But when you look at the very people he’s fired 17 Attorney General’s two Inspector General. They are the very people that prevent misuse of funds and also keep politicians and check. But they are gone!
If the banks and corporations paid their fair share of tax, they wouldn’t have to be any cuts. They make billions and profit already, combined that is trillions of dollars to be taxed
I’ve heard several economists say over the years that if the rich corporations paid their fair share in tax, then that money would cover the entire government workers wages and also the social services sector.
There is a lot of tax that’s not been paid. That’s the problem. The saying ‘Don’t look up!” is very on point here. What they’ve got the average person doing is looking down on others instead.
I don’t think this is the place for a political discussion. Let’s stick with ME/CFS and the relevance of the new government democratically elected in the US.
I concur!
Gijs, ME/CFS and Long Covid are political issues. What in the world has happened to this democratic country, that opinions or political views should not be shared in any forum?
I was in advertising for 20 years. Everyone thinks that advertising is a “fluffy” occupation. Not so, advertising is insidious and runs the country (perhaps the world). People like me could convince you to buy a product; try a medication or vote for a political candidate. And this is not done, “off the cuff” at blue sky meetings on Madison Avenue. Every product, candidate, etc. is carefully researched as are the people who might buy it or vote that way.
I once worked for a chain of hospitals trying to get doctors on staff. We studied everything about them from their hobbies to favorite magazines (Medical Economics). Focus groups were run to determine how different messages played with different publics.
That was bad enough (and I am sorry to have been a part of it), but now we have a largely uneducated public (average IQ 98) getting all their information from social media: Tik Tok, Facebook, You Tube, X . And since no one reads actual books these days, the majority of Americans like their information in pre-digested sound bites and don’t question whether it is true.
But who is behind those sound bites? China, Russia, some pot smoking dude on the beach? Media influencers making a ton of money to promote products?
Formerly, if some slander or incorrect information was printed in a major paper or reported in the news, the aggrieved party could sue and often won.
But, nobody can pinpoint who is actually behind social media posts.
Everything that is happening now is going to further deteriorate education and critical thinking in this country. I weep for the future
The average iq of folks in our society hasn’t changed.
The quality of education HAS gone down in spite of our government paying more per capita for this inferior education than the vast majority of other countries spend. Blindly throwing money at problems doesn’t make them go away, unfortunately.
I question your “facts”. I’m not going to get into the details about why I disagree with you politically. This isn’t the place for that discussion. I will say that you neglected to mention one very important reason for the increased debt – COVID!
Created by fauci..likely on supine. Not his first rodeo he denied any involvement with hhe lab. That is a straight up lie abd he should be taken to court.
Corporations don’t pay taxes as it’s just a cost of doing business and most gets past on to the consumer in higher prices. Tarrifs are basically the same as increased costs just flow straight through to the consumer to pay. There are exception of course as the competive marketplace could minimize our cost increases.
This forum is not for political debates as we can’t lose focus on the disease we have been battling for decades. Until very recently we haven’t received the appropriate funding level. I believe the the Long COVID will apply pressure,due to their numbers, on their congressional representatives to raise their awareness of the lack of progress on these dreadful diseases.
We should all communicate with our representatives as well.
Hopefully we will have a clearer vision of where this massive over burecratic agency shakes out.
You speak the thrush!
Thank you, Susan!
Truth, I meant!!
💗 🍀
The democrats overspend in line with the ideas of Keynesianism in a time of crisis or a recession (Obama in 2009, Biden 2021) to prevent the US economy from collapse. The republicans beacause of their lack of discipline.
You can’t understand the problems of debt, trade deficit, and underproduction of the US economy without understanding how the policies of trade surplus and overproduction in China, Germany, and Japan influence the position of the US in the global markets.
I pity you, Susan. You seem to have the best interest of your county at heart. But because you don’t possess any economical expertise you have sold out you are selling out your great nation to a group of TV presenters, drug addicts, and felons.
Oh Lina,
Please refer to my comment about CFS researchers stating that people with CFS are often unpleasant and difficult to work with.
I could enlighten you as to why your conclusions are incorrect, but I am a polite person and know that my words would fall on deaf ears.
“At a White House event, President Clinton announced that the federal budget, which had run at a deficit for 29 years, has been balanced, and will run a surplus of roughly $70 billion for the fiscal year that ends today.”
I know that Clinton managed to have a balanced budget. But it seemed to be so long ago. On the other hand, the Keyensian interventions worked just more or less as they should have under Obama and Biden and are an important reason for the robust growth that the US enjoys.
But what’s more important is that not many people seem to understand that to the US debt is a totally different issue than to every other county because the dollar is the world’s lead currency. Which means that the US doesn’t need to pay the money back but can just inflate their currency which makes the debt shrink.
But people don’t want to know obviously. In German we say that if you don’t want to know you’re going to feel. It means that if you lose touch with reality sooner or later you are going to hit a wall. And then people will correct. That’s because of evolution. Otherwise, as a species, we wouldn’t have survived.
Thank you Susan. Same way I look at it, and it’s disgusting that people assume we’re “uninformed” because we have a different opinion than they have.
Thank you. We all want the level of research to be accelerated. I still have hope that will happen. And even though we feel below par, we should try to be civil. I’ve spoken to some of the prominent CFS researchers and some have found us difficult to work with. This is not helpful for furthering research!
I think those researchers need to step outside of their thin skinned approach. We have been gaslit to he’ll whilst hoping through he’ll.
I agree civility is great but I’m wary about blaming a community so badly treated
Yes, a nurse…I stand corrected.
Campell was a shining light when all the lies began to come out in the midst of covid. He’s as solid as they come.
All I know is I spent 35 years being belittled and gaslit by the Canadian medical system.Thats a fact.All in the name of profit
I took my 3rd vax and my armpit swelled the size of a grapefruit..Fact.
My son in laws doctor friend took 5 shots and came very close to death. Fact
The Moderna shots were found to have metalic particles.Fact
Many of the shots were made by second party contracted out, made in China. Fact
WOULD YOU TAKE A JAB MADE IN/FROM CHINA?
Thank you Susan. I agree.
Very well spoken! I couldn’t agree more
Thank you, Susan, for these words of common sense!
That brought up an interesting question – how much of the US budget is taken up by labor costs (including pensions)? Civilian employees – 7-10%, Military personnel – 5-6%. Since pensions take up 25-30% of the labor costs for civilian employees, the actual costs of maintaining the current civilian workforce is 4-7% of the budget – so not much savings by cutting the workforce. (They might want to reduce those nice pensions, though.)
Most of the US budget goes to programs. Social security, Medicaid, and the military take up about 65 -70% of the budget.
Servicing the debt, though, is not cheap – it takes up from 7-10% of the budget.
Let’s hope that much of the waste and fraud will be rooted out from ALL areas of government!
As members of a stigmatised and marginalised community ourselves, perhaps we could have some compassion towards another group of struggling people…
Addressing govt waste is one thing, but trans people are not harming us, I’m not sure why you felt the need to involve them in this discussion.
The GOP gets credit for being fiscally conservative, but they always drive up the debt. If you believe they intend to save money, you would be wrong. The House just voted to raise the debt ceiling to $4.5 trillion to give tax cuts to billionaires and make working people pay for it. https://apnews.com/article/house-republicans-budget-blueprint-trump-tax-cuts-ff2bddf31f4e7cb0928139072392a091
I hope someone will mention tomorrow on the ME action call that talking points should educate that illness often hits highly driven and successful people mid career making them unable to work. Thus it has X impact on our economy and technology leadership. Followed by all the science about how this is not a psychosomatic illness and is not due to poor health or diet choices of the individual. I think that these are important facts for the administration. Kennedy stated he wants to help chronic diseases- let this fall into that category.
AMEN!!!
Check out Health Rising’s Lives Interrupted which shows what kinds of people are affected and the costs they have incurred. The number of professionals affected is amazing.
https://www.healthrising.org/bm-li-view-stories/
This is important. Specific politics aside (I don’t buy the false red/blue paradigm at all), what I see is the rise of ‘strong man’ ideologies globally, which seems good, right and logical on the surface. Thing is, to me the truly righteous ‘strong’ would protect, help and uplift the ‘weak’ (their definition not mine), not seek to crush them further.
However, I see the current ‘strong man’ ideologues as more animated by the ancient powers, which view ‘strength and wealth’ as virtues and ‘weakness and poverty’ as punishment – they think we all get what we deserve in THIS life. Just look at our leader’s formal ‘spiritual advisor’, who embodies the ‘prosperity gospel/televangelist’ mindset that goes right along with what Im saying. Through that lens, it is good and righteous to cut off aid to the ‘weak, sick, disabled, poor’ (calling it ‘tough love’ or ‘earthly justice’) and to divert all resources to the deserving ‘strong’. The old ‘strong gods’ saw the ‘weak’ as either dead wood to be cut away from society, or as sacrificial scapegoats for ‘good/healthy’ society to hate on (or worse) as a way to blow off steam. What saddens me is seeing it done in the name of righteousness and even in the name of Jesus (their blasphemous ‘strong man’ Jesus, not the real Jesus of the actual Bible, who they would ironically call ‘weak/victim/woke’ Jesus), which is 100% complete opposite of what Jesus supposedly actually said and stood for: “I desire not sacrifice, but mercy”. And Im not even religious,a just speaking in their own terms and how it goes against all I was raised to believe.
Gosh I hope Im wrong… Ive had really high hopes for RFK, but we’ll see; their actions will reveal their true intent. And many of his stated goals directly conflict with others in the administration, so its hard to say whats actually going on.
But honestly, at least for me, seeing it from this global and bigger picture ‘cosmic’ view has made me feel less afraid and more at peace, regardless of what happens. Its not really personal and its so much bigger than me. Maybe Im crazy, but Im just making the most of every day that I can within my limitations and finding joy regardless of uncontrollable circumstances; seeing this reality I actually feel more free than I ever have, even if my physical circumstances haven’t changed. The powers that be may or may not leave me to rot, but I refuse to let them rob my spirit through fear. I will counter their tactics with love, love and more love, and if I die it will be with a smile on my face and a song in my overflowing, tachycardia-ridden heart!
But my point to the earlier comment is – yes, given the influence of this subversive ‘strong man’ spirit, one can only hope that knowing this disease could easily take out the ‘strong ones’ too, maybe they’ll not abandon us.
It’s truly terrifying to be an American right now while billionaires throw our lives in the garbage like trash. Not only are they slashing medical research, disease tracking and prevention… but they also want to make drastic cuts to Medicaid, which I and millions of other Americans absolutely DEPEND ON for our healthcare. They are pure evil. It shocks me that anyone voted for this.
The anerica. Health system has been a corporate oligarchy for decades. I think what you’re suggestion will happen already happened
Thank-you Cort, for an admirable job of reporting on a sensitive topic. Your report made me more aware of specific changes in motion that are likely to affect us (your audience) – in both good and bad ways.
Personally, I think that Jeremy Berg’s quoted description of the situation as “Kafkaesque” is spot on. However, I suspect that the worst is yet to come.
Still, if it is true that people generally have to feel the heat before they see the light, then perhaps the raging fire being stoked could mark the beginning of a new era of enlightened positive change. One can only hope.
We can and should hope!
I’ve heard that the reason for all these cuts is to fight the US national debt, yet, whenever I hear about the cost to the US of leaving Long Covid untreated the amount of money said to be lost
is usually in the trillions
Even Obama ordering the NIH to look into ME/CFS 13 years ago didn’t help much. Correct me if I’m wrong.
https://phoenixrising.me/wp-content/uploads/President-Obama-Letter-on-CFS.pdf
I hope that is not lost on Congress!
As I remember someone in the Obama administration really was interested but I think she left the administration or something like that happened.
The only thing that’s made a significant difference was when Francis Collins showed interest in it somewhere around 10 years ago – and funded the intramural study and the 3 ME/CFS research centers.
I would argue that Maureen Hanson’s NIH funded is making a huge difference. We haven’t heard as much from Ian Lipkin and the 3rd research center apparently just failed.
Only two of the three research centers were renewed. One of the grants we’ve been waiting on would have made up for the lost funding. It was due to be published in December but wasn’t. I assume that neither it nor the 2 post-infectious grants are going to happen! That’s a huge loss for us if that’s so.
Cort, you are a treasure to all of us! Know that you are appreciated!
Before I start, I’m still pro vaccine and don’t bother with conspiracy theories.
I think RFK is going to be a worry for children’s vaccinations and trouble for health in general.
However all that said, There is a video of RFK talking on his podcast about ME/CFS and Long Covid that gives me hope for post viral illness (I can’t find the video now). He was interviewing a woman who was talking about the issue
In the video he said that long Covid and ME/CFS were caused by toxins in the modern world, and also by vaccines. And he was interested in investigating it further. (The video was prior to the election)
I’m thinking with these conspiracy theorists types now in charge of “All things Health”,
we as a patient group need to learn how JFK thinks. We should be attempting to contact him or his team, and tell them what happened to us, (especially the significant minority of us who were actually harmed or worsened by vaccines, like myself via a flu shot) and that we want them to research it, and also investigate why nothing was done by NIH prior.
RFK himself will probably see it as a genuine conspiracy, especially the fact that Fauci clearly held back ME/CFS research for decades.
If we make enough noise to him about it, then his conspiracy theorist lightbulb in RFK’s brain will light up, and be incentivised to look into it, hopefully fund research into ME/CFS and Long Covid, and Long Vax. (Find a cure for long Vax and you will find a cure for the rest)
Basically what I’m suggesting is we need to think and talk very differently on how to encourage these new folks running NIH. By using a narrative that they like, i.e. a tantalising possibility of a conspiracy. It may sound ridiculous at first, and even if we don’t think it’s a conspiracy ourselves,… RFK already does! And he can’t stand Fauci, so there’s a lot of potential motivation here. We just need to steer him on path towards it.
Plus, if it becomes public interest, then we would have a lot more people supporting us.
We and our representatives, like OMF and the Bateman Horne Center etc. need to learn how to be “RFK Whisperers”
Because if we try talking regular science to him, it won’t work. He’ll shut the door on us.
Researchers especially need to think differently, like approach them with grant applications for understanding the mechanism of Long Vax. Bet that will get plenty of funding. Same disease result anyway
Times have changed, and it’s time to start thinking outside of the box. i.e. think how they think!!
Bob, you might find Judy Mikovits’ book “Plague of Corruption” interesting, if you haven’t read it already. RFK wrote the foreword.
Judy Mikovits has done a lot of harm to the field of ME/CFS. Have a look into the utter incompetence of her study that was contaminated with a mouse virus.
Mikovits also was caught by Student plagiarise other researchers Work by showing photo slides in a presentation that she never took.
She was ostracised by virology profession for her continued problems, so she went to fringe groups who supported her giving her interviews in which she spread a lot of misinformation.
Knowing how nasty and competitive the academic and research fields and the govt can get, and the extent of the persecution that will be rained down if you threaten their viewpoints, I’ll reserve my opinion. Do you know her research notes were taken to be destroyed? If they were that worthless, why bother? We’ve seen there is no end to the lies, fabrications, manipulations and smears that take place when the medical mafia bear is poked. Again if you haven’t read the book, I personally feel it’s worth a look, however you feel about Judy M.
I went through the Judy Mikovits years where she publicly said XMRV was going to be worse than HIV/AIDS (yes, she said that), and that it was in mother’s breast milk. She tried – and succeeded – in splintering the ME/CFS community into the good guys (who believed her) and the bad guys (who didn’t). She told the community that “sinister forces” suppressed XMRV research to hide its dangers. She also linked XMRV to autism, Parkinson’s disease, and multiple sclerosis even though she had no evidence that it was involved. She also claimed that XMRV “circulating through the population,”
Nine studies showed what we now know what XMRV was – a lab contaminant. In the end I concluded that she was unhinged and was willing to say anything to draw attention to herself and her finding.
Cort, always respect your opinion although I don’t come to the same conclusion about Judy M., after reading her book and seeing what happened with the COVID virus under the same regime she criticizes in the book (we’d likely have a different perspective on that, too, although the documented evidence of US funding for the Wuhan lab is irrefutable). She is not the lone Cassandra in her concern about using animal tissue in medical research and the kinds of plagues it can unleash. Many distinguished retrovirus researchers have supported her. I think she was sincere in her alarm, wanting to call attention to the perceived dangers, not for herself (which pretty much destroyed her life and career, which had been impressive prior to that – having written the doctoral thesis which contributed to changing/improving the treatment of HIV-AIDS). Links to Parkinson’s and autism – those from what I recall were theories, not asserted as fact, which she felt might be helped by treatment with suramin among other things – her attitude was, why not try? But again, yes, just like hydroxy, “studies” were done to prove how dangerous, even though they had used doses far greater than those she was proposing. Anyway, NIH’s reaction IMO was out of proportion. Just like the FDA making pharmacies afraid to fill Ivermectin prescriptions from patients’ doctors during COVID (a real crime IMO).
Linda, of course Judy M‘s book will sound good, she wrote it herself!, and lied through her teeth to make out it was a big conspiracy against her. But the reality was she was saving face after being found out to be utterly incompetent as a scientist (she was analysing contaminated samples).
(And she is a thief, she was arrested for stealing a laptop from her employer).
A good way to know if someone is full of nonsense is that they still say that the MMR vaccine causes Autism.
Everyone who read the multiple studies on Autism and MMR knows that’s not true. Too many studies from too many independent researchers, who bent over backwards to see if there was a link and it turned out there wasn’t.
It was all because another fraudulent researcher Dr Wakefield made up the autism story.
Dr Wakefield had serious undisclosed financial conflicts: he was funded by lawyers involved in lawsuits against immunization manufacturers and was applying for a new vaccine patent. That’s the actual story. Yet Judy M keeps spreading his lie Autism MMR lie.
She is also known for plagiarism of other researchers work and outright making things up.
No one credible in science or medicine will take her seriously. so is pointless thinking talking about her will alter that. Like I said earlier… she’s done more harm than good
Oh, well. Didn’t think we’d agree on this.
“Many distinguished retrovirus researchers have supported her.” – In the beginning, yes – not now.
“I think she was sincere in her alarm, wanting to call attention to the perceived dangers, not for herself (which pretty much destroyed her life and career, which had been impressive prior to that – having written the doctoral thesis which contributed to changing/improving the treatment of HIV-AIDS)”
I disagree that her career was particularly impressive -she was a researcher in another researcher’s lab – he was a good researcher but it was not her lab. (His career dived after the Mikovits controversy).
I know Judy Mikovits can be very convincing. She convinced much of the ME/cFS world that she had found the answer. She didn’t but even then she would have been fine if she had stuck to the facts and had a) not vastly overstated her findings (saying XMRV was in breast milk or was going to be worse than HIV/AIDS in Africa…) before she knew if either was true.
Statements like that are literally career-killers in the scientific world. Fearmongering – particularly when you don’t have the data – is about the worst thing you can do.
That is, of course, what she has continued to do….
Ditto – talks of a conspiracy against her – instead of simply acknowledging as was shown that XMRV was a lab contaminant.
She would have gone on and been OK…
I’m on your side in this Cort. these studies are clear.
It’s very interesting what you write, Cort. And it was only when I heard about that story from people who are engaged in the ME/CFS community since many years that I understood why there was not only disbelief but even ridicule towards viral reactivation hypotheses. I think I have experienced it myself advocating for more research into the herpes hypotheses here and in other places.
But I could still imagine that Judy Mitkowitz radicalised because she was engaging with a field like virology that probably firmly held up the cult of psychosomatics in ME/CFS and called her crazy – and she thus insulted sought revenge and then somehow must have “exploded” in doing “criminal” research. Her behaviour reminds me of that of a narcissist. But it’s really a pity that this brought so much damage to the idea that the study of pathogens was important.
Personally, I find the work of herpes specialist Bhupesh Prusty into ME/CFS despite of his losing sight of the forest because of the trees-like detail orientation outstanding. However, somehow he doesn’t get the attention he deserved. This could also be a consequence of the above explosive story.
Interesting idea. I think she was in no way emotionally ready to be thrust in the firestorm that was the XMRV finding.
Also – I personally think RFK is too intelligent and savvy to be tricked/manipulated, nor do we need to look at him in that light. He is quite familiar with valid scientific studies, it’s just that he will not be told what to think about them by the medical establishment. When the govt doesn’t their narrative challenged, “conspiracy theory” is one of their favorite cards to play. Trouble is, people are getting too smart to be duped by them, they’ve been overused. Understood, you’re not going to agree with me…
RFK is not good at reading studies. In fact he’s one of the worst people for reporting back information that wasn’t even printed in the studies he quotes. He also alters numbers to suit his narrative. He’s been called out by the authors of some of those studies too. So no, he’s not at all savvy or smart.
I would like vaccine injury to be kept completely out of the MECFS dialogue. Vaccines are what keeps society safe from awful diseases such as Polio, Smallpox, Tetnus so any discussion related to them is going to be highly charged. We don’t need that drama to delay progress in finding treatments and cures for mecfs.
Nancy, I agree!
I agree with keeping vaccine damage out of ME/CFS. But it is naive to think that vaccinations keep communities safe. Think of the pharmaceutical companies and the benefits of these products. Hygiene also helps a lot. Personally, I have my doubts about the mRNA vaccinations because they have not been sufficiently researched, especially for the longer term. In addition, I cannot imagine with common sense that so many vaccinations are good for people. I am in favor of traditional vaccination for certain diseases. But it’s completely gone wrong, causing iatrogenic damage. Just like medication, that has also gone completely wrong. All in all, disease, medication and vaccination is a business model. Don’t be naive.
The vax wrecked me with ME/CFS symptoms (PEM), for the last 3.5 years. I guess I’ll just lie about how I contracted this. Every test is negative, and I’ve had them all. The only thing working at the moment is oxaloacetate. Don’t drive the vax-injured out of this. I’m sorry it’s an inconvenient truth, but there are many of us out there.
Hi John, I do not deny that there is vaccine damage. It’s terrible. In fact, those mRNA vaccines are more dangerous to health than many realize. That will become clear in the coming years. That said, post-vaccination patients are not automatically ME/CFS/POTS/FM patients. Good luck with your illness!
Gijs it not just people getting Long Vax, it’s 1 in 5 people with ME/CFS who worsened by the Covid vaccines. We support vaccines but something went very wrong for a lot of people with ME/CFS. That should be looked into not hidden
Normally if a significant minority of a patient group worsened from ANY drug, it usually is heavily investigated. But for some reason ME/CFS vaccine worsening has been totally ignored. Meaning many people who are unaware are walking blindly when making the decision to vaccinate or not.
HealthRising actually did a very thorough report on this very issue discussing both the benefits of vaccination and the risks that some ME/CFS patients have. There’s even a Health Rising Covid vaccine ME/CFS poll that shows how many did worsen.
https://www.healthrising.org/blog/2021/07/14/coronavirus-vaccine-chronic-fatigue-syndrome-better-way/
After reading that article, I think it would be pretty hard for anyone to deny that there is not reason for concern with vaccines and ME/CFS. So it shouldn’t be swept under the rug to pretend it doesn’t exist.
I agree with you -:) But a poll on Health Rising is not representative to draw hard conclusions. I am surprised that there is no research into the disadvantages of vaccinations. There is no interest in that either.
Blog is coming out tomorrow 🙂
I know so many people vaccine injured and many more with cancers and strokes, liss if sight etc who were infected.
We really need an independent enquiry.
My girlfriend has just gone from extremely healthy to stage three breast cancer. Fully vaccinated. Obviously there are many factors that could’ve caused that but it’s disturbing. My brother umus partially deaf..certified vaccine injury. Hew a young healthy man. Still caught covid. Didn’t need to be subjected to this
Oliver, the Covid vaccine wouldn’t have caused your girlfriend’s cancer. Breast cancer takes at least 8 years to develop. So sorry she has to deal with this.
Well thank you but respectfully, no one h derstabdz cancer or complex interplay with this mrna technology. To say we do ignores the fact we have no proper long term data. 4 years is nowhere near long enough. They’re just finding out for example, that ssris lead people to be vulnerable to dementia. We’re still learning of so many side effects of drugs once considered safe.
I can honestly my brother lost most of his hearing in one ear after his booster. Confirmed vaccine injury.
U know another confirmed vaccine injury..total paralysis for six weeks.
I know 4 people shove had strokes two weeks after vaccination with modena and astra zeneca.
We cannot know for certain if this surge in cancers us related to the vaccine and it’s hyper accelerated. We just can’t know. And of course there are many factors contributing to the rise in cancer in the young, but we can’t rule it out.
Many of the people who got vaccinated in my circle get repeated covid infections. I’ve had it once in december 2019. Everyone in my area did and it’s been confirmed it was here then.
Nine of those people needed further vaccination.
There’s so many unknowns here.
I recently had to attend casualty here and the doctor told me they screen Everyone now for clotting. She said that’s how they detected the astra zeneca pattern. The doc said they regretted getting the vaccine. The whole set up in a and e was to screen for cardiovascular problems regardless of whether it was a broken leg etc that they came in for.
Of course, covid cm itself could ge causing three problems. It’s likely a bioweapon after all. But hearing a doctor under their breath tell me they deeply regretted getting the vaccine made md realise they’re seeing a lot of problems.
I’m not trying to be a doom monger. I’m seriously concerned for everyone and myself because people keep getting boosters and shedding may be a big problem from the vaccines.
Who knows where this leads but in my opinion it was a big mistake to roll this out to the entire population. It wasn’t tested well enough . That’s since been admitted.
I don’t want people making the same mistake of trying to brush this under the carpet like they did ghe lab leak theory. We need an independent team investigating this.
I’m classed as clinically vulnerable but I knew not to take this. Covid was a bad flu in my case and much less for many.
I thinkbit was worthwhile to give it to vulnerable people who wanted it. We were told in the press it stopped transmission. Take the van not to kill granny etc. That was a complete fabrication. I don’t trust people who misrepresented the need for this vaccine. And I don’t trust the safe abd effective idea. It plainly wasn’t safe. The swine flu vaccine was pulled for way less damage. Why thdg continue to inflict this on kids us beyond me abd likely immoral.
So I’m massively reserving judgement on what these vaccines can do and I want incisive, non industry studies into side effects.
Oliver, I agree with you that the mRNA vaccine may prove to have been a bad idea. And it’s possible that it could cause cancer. However with regard to breast cancer, it takes at least 8 years from the initial cell injury before breast cancer is detectable,
I hear you. I just question that assertion. For example, it may be that otherwise dormant injuries are hyper accelerated.
There’s lots of talk online about people who’ve been in remission suddenly developing stage 4 cancers and dying within months.
There’s so many cancers amongst young people at the moment. And I’m aware there’s plastics etc leaning into the cause but we don’t know what these vaccines do to say for example , pre cancerous cells.
I think it was a rash decision to roll out.
We HAVE to look at this stuff in the round and not work on old assumptions. Science is built on shifting sands after all
I agree with you that it’s not true that every health issue caused by a vaccine is ME/CFS. But there is enough evidence that vaccines have been the trigger for many ME/CFS patients. It’s an established fact.
We can’t just ignore this. That would be gaslighting. Just as ME/CFS patients are gaslighted. I don’t think that’s ok.
Personally I am much more annoyed by the confusion we see under the Long Covid label, with ME/CFS patients with covid as the trigger who have stopped identifying with ME/CFS and have started to call ME/CFS Long Covid.
Which will be hopefully to their own and alone detriment in the end!
”Typically spike protein can be detected for a few days after vaccination, but some participants with PVS had detectable levels more than 700 days after their last vaccination. Persistent spike protein has been associated with long COVID as well.”
https://news.yale.edu/2025/02/19/immune-markers-post-vaccination-syndrome-indicate-future-research-directions
Interesting study for you
I had these blood tests through Dr. Bruce Patterson and it indicated I had no spike protein in my blood, but who knows if the test was legit. Thanks for posting the study!
Many and just like the lab leak theory people won’t face it head on. Which ultimately won’t serve anyone
EXACTLY….not sure what the numbers are but kids nowadays get way too many vaccines. I know a lady that refused to have all three of her kids vaxed in the 80s.Not one of those kids have fallen ill to any serious illness that “they” say vaccines protect against.
The numbers of vaccine illness/injury from the clott shots is being covered up.Young people continue to die for no apparent reason after their covid shots.
Go look at Dr John Campbell’s youtube page.The medical corruption is eye opening to say the least.
YES stop being so nieve people
John Campbell who is actually a nurse, not a medical doctor. Has presented multiple times on his YouTube videos of studies that I investigated further and found were fake. The labs didn’t exist. The names of the researchers weren’t the same people from the same profession. The photos were altered. It was all fake. They didn’t even present a standard scientific method, yet John Campbell presented it on his YouTube channel as true.
The man is a scaremonger motivated to tell eyebrow raising stories to get clicks on his YouTube channel. And that’s how he earns a good income from YouTube. He’s motivated by greed.
Which studies he presented were fake Bob? Can you show me three examples? You also know that John Campbell had been vaccinated en was promoting these mRNA vaccins at the beginning. He also have interviewed some good medical specialist and professors. I didn’t hear any bullshit at all. He just follow the science. I think he is a good person with no financial greed.
John Campbell is solid as a rock.
Only kept out because it muddies our political power.
Don’t forget astra zeneca was withdrawn. The swine flu vaccine was withdrawn.
You havecto take vax on its own merit. Let’s also not forget mrna is a brand new technology.
I hear where you are coming from, B Rob. There may be benefits to appealing to him in this way, but I also have some concerns with that approach. As someone who has had ME/CFS for 20 years, we spent a lot of time and energy dispelling the idea that we are just crazy. To embrace conspiracy might have the impact you suggest, but it could also have negative long-term effects on how we are perceived as a disease community. It could really hurt us in the long run.
We have to keep in mind that Kennedy is viewed (by people who prefer evidence-based medicine), as a quack. We have no idea how long his tenure will last. If we want to maintain our integrity in the long-term, there is a lot of risk involved in stoking the conspiracy fire. We don’t want to ruin our own reputation as a disease community, when evidence based medicine is the only way to get real answers.
To this end, we also want to make sure the right researchers get funding. We don’t want to waste time and money on tons of dead ends. A chaotic approach that produces bad science will only drive away researchers with integrity, and damage long-term interest in the topic of ME/CFS research. Reputation is very important in the scientific community. We risk making ourselves an outcast disease that future researchers won’t want to touch with a ten foot pole for fear of ruining theirs.
That is my worry as well! Getting tied to RFK Jr. might not be good in the long run. Dicey situation!
Fair enough, good to see others opinions.
So instead, it would be good to at least get ME/CFS funding requests in front of RFK. He is interested in it and chronic illness already. So presenting him the facts is good. I don think withholding facts is good though. Most of us should be aware of the greater risks of vaccines for ME/CFS by now. It’s a real issue, So we shouldn’t need to hide it. although I do hear you all and understand that we don’t want to be tarred by the same brush as the tinfoil hat antivaxers. I see the dilemma. So other methods can be tried.
ME/CFS researcher Robert Naviaux believes environmental toxins have caused an increase in autism and ME/CFS metabolic like illnesses. That’s not controversial so maybe we go down that path.
All that aside I think the most important reason to get RFK on our side (whatever the method) ASAP, is to do it before Trump one day randomly blurts out that “Long Covid is fake news!”. Because I doubt many people be surprised to hear him say something like that, especially if Trump hears $1.2 billion of Long Covid funding was squandered on researchers who hadn’t developed a single treatment for it, and it turns out they knew very little about Post Viral Illness in the first place. That’s a big, big problem the moment he or Musk become aware of that wasted spending. Trump will instantly slam the door on all LC funding. I can hear him already saying … “Long Covid researchers, You’re gone, you’re out of here, you’re fired!”. and once that’s said, it will be very difficult to ever get funding from this current administration again.
How long that will be who knows! I don’t think I’m the only one who is worried there might not be another real election by the way things are going, especially with the govt purge of the very people who are meant to keep politicians honest.
So we need to get RFK looking at ME/CFS and LC right away
B Rob, I share your concerns about long covid being targeted by the administration for a variety of reasons. From what I have been reading, it seems like we’ll have a better idea of what we’re dealing with very soon.
Once some of the current court cases proceed a little further, and we see if the administration follows court orders, that will have an impact on the extent of future firings and funding.
Once the budget goes through the Senate, things could change a lot. The Senate doesn’t seem to have the stomach for the draconian cuts put forth in the House bill. I’m personally putting my spoons right now toward calling/writing my Senators and Representative (and other members of the relevant committees), to encourage them not to make cuts. My gut is that the House budget proposal will get shelved and the Senate will just pass a continuing resolution to extend the prior funding, like they usually do. That would give us some stability for now.
My recommendation when it comes to the Department of Health and Human Services, is that we continue to lobby through our patient organizations via the same regular types of efforts we always have, as long as that is possible, for now. Of course we’ll have to make adjustments if the landscape of funding actually does change dramatically. I think the way forward will become clearer once some of these ambiguities are cleared up.
Interesting times, for sure. Be well!
I know I’m late to this thread. Just found this site/blog. Things have escalated for the worse in the past few weeks so those who had hope for this administration and RFK are probably now aware that their hopes were misplaced.
I appreciate the attempt at novel thinking in ways to reach those with power. I also appreciate the dialogue with pros and cons of the approaches.
I actually felt better for several weeks after each of the COVID vaccines. I agree studies are needed around everything. My ME/CFS very likely started due to a certain class of antibiotics. It’s been 10 years.
I live in the DC area and am deeply affected by all the chaos this regime has unleashed. I won’t bore you with what this means for my ability to continue…health, money, home…. You are the only community who gets it because you have your own stories.
So, as someone who is living with all the disruption and who knows MANY people impacted and working in proximity to what Trump, Musk, et al are doing:
– There is absolutely NO honest attempt to find waste, fraud, and abuse in order to improve anything. This is a redistribution of wealth/resources and dismantling of our country. Period. They are actually costing us obscene amounts of money and making a mess that may prove unrecoverable. They are demanding that documents, records, and other files be destroyed. (Including scientific and medical studies and data, especially if it doesn’t support their narrative.) Many of their actions are illegal and they are ignoring court orders. I don’t care who you voted for or what your opinion is. It’s important that you know this and adjust accordingly.
– We taxpayers are paying Musk $8M/day. We have subsidized him for at least $38B. The cuts at the first several agencies impacted effectively shut down the investigations into negative business practices by Musk’s companies. He has major conflicts of interest. He is forcing his software into defense, WH, and FAA even if it means cancelling valid contracts that competitors were awarded.
– Trump’s weekly golf trips cost over $3M each. (He spent so much money golfing in his first term, Secret Service couldn’t cover the costs until additional funding was allocated. Check out what he charges for the agents to stay at his properties and to ride after him in the golf carts.) The Super Bowl and NASCAR appearances cost us many millions.
– RFK was already caught lying about the measles at the Cabinet meeting. He hasn’t made coherent consistent statements on anything. He is in way over his head and will not be an advocate for this community. Even if he appeared to advocate, there would be no way to trust anything he did, led, or said.
Let’s be fair tho. The current status quo did absolutely nothing for us.
It literally couldn’t be much worse. Let’s give the guy a chance. We have nothing to lose. There’s just been a study released on the vaccines causing long covid i believe. So that will tickle his interest.
We are a laughing stock in mint of hhe medical community so I’m open to feathers being ruffled.
This whole pandemic started through American funding under a Chinese lab overseen by a democratic party and a republican party.
At least Kennedy is coming from a place of unorthodox. We need that. Because the funding otherwise will just not be there for decades to come.
It is the media that creates constructs, not the politician in many cases.
Like the lab leak theory was nit allowed to be talked about for three years in the press etc but now all western Intel accepts it did and that it was underwritten by fauci.
Sadly this info was absklable from the beginning. I found out about eco health alliance 2 months into the pandemic through my own reading so I’m sure there were journalists that knew.
As it stands I want the cards to be thrown up in the air abd fall as they will. It literally cannot be worse than the decades of gaslighting
They now know 3 Chinese lab workers from the Wuhan lab were treated in hospital shortly before the outbreak
It was always a stretch not to at least countenance the idea that a place that has a laboratory that deals in experimenting with coranaviruse might not be a culprit. The fact that it couldn’t be discussed for years is very disturbing. It’s anti science. Anti democratic and anti common sense. The media black out on it makes everyone rightly question what else did they cover up.
If you think about the fact that people like fauci benefitted financially from this, it amazes me how protected they are and shoes hoe corrupt the medical system is. The profit model needs to change
Hi Oliver—I definitely think we may have some opportunities to influence Kennedy to work for our benefit. I personally prefer to let some of our own experts take the lead when it comes to specific strategies, since they understand the landscape better than I do. Even if we think outside of the box, there is still a box that many of them have been working within, so I really value their insights and would like to hear from them before taking any novel actions of my own.
I have a different understanding of some of the details you mentioned, but I don’t think our disagreements matter as much as our shared desire to see more progress. I think that kind of unity as a patient group will help us move forward together with as much wisdom as we can collectively manifest.
Best wishes!
Well said!
I don’t see how a person whom believes in conspiracy theories, is going to be open to information that bursts their various bubbles. Instead of believing a cause to be somethings as vague as ‘toxins’, they should be asking questions about the root cause. See his unfounded beliefs about fluoride and vaccines as evidence of a total lack of objectivity.
This is chiefly about long covid because nih with its <than $15m/ year ME/CFS spending is so trivial and it’s neither here nor there Really. I hope #MEAction will go back to m.e advocacy and reinstating #millionsmissing for ME/CFS on me awareness day and making it about funding the m.e roadmap not long covid. long COVID can make the most of their own soon to happen awareness day rather than taking ours too because the 2 cohorts are at different junctures, WITH different narratives and experiences and the long suffering ME/CFS community, who are having no research in their possible viral persistence or inclusion in US clinical trials, if they are are severe are running out of time.
I’m encouraged that Kennedy interviewed Hillary Johnson with his heavily-tabbed copy of “Osler’s Web” a few years back. So he is aware of ME/CFS and the controversy surrounding it.
Since he works at Stanford, I’m wondering if Bhattacharya has ever worked with Ron Davis and/or knows Whitney’s story with ME/CFS.
Bottsie, that would be interesting to know if they’ve had conversations about CFS.
Yes, indeed, it would! If not then, hopefully now.
I had no idea! That is good news indeed. 🙂
Cort, here’s a link to the Kennedy’s podcast interview with Hillary Johnson.
https://creators.spotify.com/pod/show/rfkjr/episodes/Biomedical-Research-Gone-Awry-with-Hillary-Johnson-e1i78is/a-a7srjek
Yes that it. Thank you! For the life of me I couldn’t find it. This episode shows how and what RFK actually thinks about ME/CFS.
Note: He is incorrect in many parts lol.
However at least he has a very good interest in ME/CFS, unlike Fauci who utterly betrayed ME/CFS patients during his career.
RFK also spoke about the gaslighting of ME patients so he’s on our side. I have much higher hopes with him on ME/CFS than I ever did with Fauci.
It would be great if our advocates actually bothered to listen to this episode to understand how RFK thinks and learn how to talk to him. Because he doesn’t think in the normal scientific way at all.
This podcast is from 2022. What encourages me is that he was willing to ‘have the conversation’ and went to someone who is actually knowledgeable about what went on…and continues. No one is going to have it all right when they start the conversation. If you have all the answers, there’s no need for the conversation. At least, he seems willing to learn.
The removal of all info about long covid tells you all you need to know. These are health terrorists, operating from a basis of ideology.
Fortunately there is much more to ME/CFS research than the USA
Hunt em down,Lock em up
The fact that these people have this much power and can go unscathed tells us of the current level of corruption that we are living amongst.
like I’ve stated on here before…
WAKE UP PEEOPLE
Not sure the breakdown on the covid pandemic deaths is accurate at all.
The straight fact is that everyone has to get covid. Vaccines should only gave been Given to ghe vulnerable.
The deaths in Britain occurred in the extremely vulnerable. By the time vaccines were administered we had had more than a year of deaths sometimes as high as a thousand a day. The sheer amount of peoleeho contracted the virus in that time period is massive.
Children. And young people were almost entirely unaffected yet the lock downs retarded their development.
100,000 Children in the u.k. never returned to school. Many of those kids were exposed to violence abd poverty. Often. Their only meal came from school.
In the summer of 2020 the British population mingled massively.
The now growing evidence of vaccine harms means we need to be very careful about drawing any conclusions at this point as to who was right
Sweden did far better in terns of fatalities than the UK which locked down far harder.
This sphere has been politicised. It’s going to take decades of forensic epidemiological study to ascertain what went on.
A nurse friend of mine told me that child suicide shot up in lockdown and it’s not being talked about. I’d be very interested in these much more disturbing emsides of our response to this virus being looked at because they’re never shown or talked about
Fascinating to see a huge thread of comments attacking vaccination while measles runs rampant in this under-vaccinated country. Wonder how many cases of ME/CFS/Fibro/LC-like conditions will be caused by the massive increase in diseases that will result from this fear of science.
Most of the reactions here are about the mRNA vaccine against corona and post-vaccination damage and long covid. That is something different than measles and the vaccination for it. There is a measles outbreak almost every year, also here in Europe, where vaccinated people also get sick and can die. Although that chance is smaller. If the mother has ever had measles, the child is protected against this disease. Most children survive measles just fine. The children who die are often already weak. Unfortunately, that is how nature works. But your reaction takes a number of things out of context. Do you know how many people suffer from vaccination damage and even die from it? It is about how many people you have to vaccinate to save 1 life and how many have to pay the price for that. By the way, I am not against the vaccination against measles. I am critical of the mRNA vaccine against corona. It is not that simple. Many people are so afraid of diseases that they lose sight of reality and cling to science out of fear. That is fascinating too. Ans the last thing: why are people so afraid for diseases they are vaccinated for? You can not get that disease anymore or much milder isn’t it? That is the whole idea of vaccination.
Funny – I would have said just the opposite to this “Many people are so afraid of diseases that they lose sight of reality and cling to science out of fear.” I would have said.
“Many people are so afraid of diseases that they lose sight of reality and reject science out of fear.” It’s simply true that we as human beings generally take someone’s personal experience over statistical results.
Haha your comment is almost funny it is just the opposite -:)
Here’s a relevant article that came out in The Atlantic yesterday:
Inside the Collapse at the NIH:
Administration officials pressured the NIH to avoid clear advice from the agency’s own lawyers to restart grant funding now.
https://www.theatlantic.com/health/archive/2025/02/nih-grant-freeze-biomedical-research/681853/
Here’s a link to an archived version of the same article that bypasses the paywall: https://archive.is/gpJC0