Great comment. A vaccine against the ME pathogen is a long time dream of mine, love that you mentioned it. NIH is hidebound in its refusal to fund scientists who would like to isolate the virus that might lead to a vaccine. A moon-shot style effort is warranted. NIH needs disrupting, which makes RFK Jr. intriguing, but a moratorium on infectious disease research feels stone age right now and polar opposite of where ME research should be headed.
I think RFK is mostly talking about diverting funds from HIV/AIDS research, which has an enormous amount of federal funding - about $3.3 billion a year from NIH alone. It is far out of proportion to the disease burden. This is an empire that Fauci built so he could sit like a king on top of that huge pile of cash.
And remember that RFK is providing political soundbites in these speeches, not giving a detailed or realistic policy agenda. No one is going to completely eliminate NIAID even temporarily. Also, the small bit of pathogen work NIH has done on ME was not at NIAID anyway. It was at NCI and FDA (the Ruscetti’s and Alter/Lo, IIRC).
If the outsized spending for HIV/AIDS were reduced, more funding could be devoted to research on ME, including for pathogen discovery. I would also like to see real infectious disease epidemiology done on this disease, such as contact tracing, looking at spread in families and between mothers and infants, and investigating epidemiological links to possible related conditions such as NHL. I suspect RFK would be supportive of these endeavors. This is the quote from the CHD writeup of his convo with Hillary:
The two also agreed the NIH is wasting money looking for genetic causes of diseases.
“Genes don’t cause epidemics,” Kennedy said. “You need an environmental toxin or you need a microbe.”
“There is a limited universe of what can be causing this, and we should identify those 20 or 30 causes and then eliminate them with science one at a time,” he added. “That’s what NIH ought to be doing.”
Back to me: But we would need to make sure that we had serious scientists like Maureen Hanson involved, not charlatans like Lipkin, who has been wasting the community’s paltry research funds for years.
Thanks for your comments. Some of the infectious disease epidemiology you describe was actually done in 1956 by Donald Henderson in Punta Gorda, Fla. when he was head of the CDC's Epidemic Intelligence Service. He left a detailed protocol for his successors at CDC to follow should another discrete outbreak of ME occur in the US. It did occur in Incline Village in 1984-85, but CDC botched the investigation. In 1987, CDC told me that Henderson's protocol could not be found. (I compared Henderson's investigation in Florida in the Fifties to the CDC's investigation in Nevada in the 1980s in a previous Substack called "Where is Don Henderson's Missing Protocol?") Re: vaccine. Yes, it's a far off dream, and it may not be possible depending on the nature of the virus. I'm thinking of future generations who might be spared this living death. Agree ME has an incredibly worthy and dedicated scientist in Maureen Hanson.
Re a vaccine - I think discussion of that is getting way ahead of ourselves given that the pathogen hasn’t yet been determined. Plus, scientists have been trying to develop a vaccine for HIV for decades and have failed even with a huge budget. If the pathogen that causes ME damages the immune system like HIV, that could make a vaccine even more difficult.
I personally would be very happy with an identified viral cause (an actual single cause, not multiple “triggers”) and targeted antivirals that were covered by insurance. Many people with Hep C were cured that way.
ME is on RFK Jr.'s radar, so is corruption at the NIH. All I know is that if things stay as they have been there will be no change for ME. I am ready to gamble for change. And, outside of the ME sphere, RFK Jr. has a lot to contribute toward positive health improvements for Americans b/c the chronic diseases of which he does speak on are important. He knows about corruptive forces within health journals too and wants to target that.
As an Aussie & ME sufferer of 29+ years who has read a fair bit about RFK Jr., I have to say I am thrilled with his appointment. If anyone will bring positive change, & hopefully listen to ME patients, it is him. I hope I am not proved wrong. Time will tell. I have more faith in him than anyone I’ve known of so far.
I agree that the status quo isn't acceptable. However, change can make a situation better, or it can make it even worse. Time will tell, but this PwME does not share the optimism expressed on this page. I fail to see how an 8-year pause on research into infectious diseases will help prevent more people from swelling the ranks of the post-viral, post-COVID, ME-affected people who have doubled my specialist's patient load to 3000+. So what if ME is on Junior's radar? His dismissal of Hilary's argument for a viral origin is telling, as is his aversion to vaccines as an important intervention. Like they say, when someone shows you who they are, believe them.
It's an interesting piece, thanks for sharing. I have ME/CFS so when the subject turned to that, I was very alert. I think RFK could be a nightmare, but I haven't followed him until this crazy 45 cabinet appointment.
Hillary - On a totally different topic, I’d be interested in your thoughts on the comment below that I posted on The Real AIDS Epidemic substack. The topic was whether ME and LC are the same disease.
Allie587
I think Long Covid and ME are the same disease. I think ME is caused by a pathogen, probably a virus or retrovirus, that is stilll unknown and that began spreading in this country to large numbers of people in the 1980s. For the purposes of this writeup, let’s call it Pathogen X.
Patients infected with Pathogen X likely have a latency period, similar to HIV. They eventually develop symptomatic ME, often after some trigger like contracting the flu, or giardia, or some other minor pathogen that wouldn’t usually be disabling. Because there are so many different triggers, some have developed the theory that there are many CAUSES of ME. But actually there is just one underlying cause, Pathogen X.
I think the phenomenon of Long Covid is part of the Pathogen X epidemic. In other words, patients who develop LC are already infected with Pathogen X, but it is latent. When they get covid, even a mild case, it can tip the balance, and they develop ME (but we call it LC).
In other words, SARS-CoV2 is not the real cause of LC. Pathogen X is. SARS-CoV2 is just one of many possible triggers.
This means that people who are so worried about covid as a “mass disabling event” are worried about the wrong epidemic. The Pathogen X epidemic is the one that is getting worse by the day and disabling millions of people - and that has been spreading in this country since the 1980s.
I obviously agree that a specific virus causes ME. There is no other rational explanation. For some reason, scientists, researchers, doctors, suspend all that is known about infectious disease when it comes to ME. Hence the "ME is caused by anything" mythology, yet, everyone, even patients, seems to buy it. It certainly takes the heat off the DHHS for suppressing the pandemic in the 1980s when they might have prevented it from becoming endemic. Your hypothesis could be resolved, or could have been resolved in the 1980s, if CDC had taken the disease seriously enough to perform epidemiology on it and fund research. Feds will not even perform epidemiology on it now, and in fact when pressed admit they continue to believe it's unworthy of study. ME will continue to be a mystical, magical disease unlike any other known to humanity, with no cause or cure or prevention, indefinitely. IMO, the idea that other infectious diseases magically turn into ME arises from the vague, non-specific definition of ME pushed by CDC. The definition is certainly convenient for the prestige agencies NIH/CFS.
I agree that they “suspend all that is known about infectious disease when it comes to ME.” They also suspend all that is known about human genetics. They would have us believe that in the 1980s, human evolution took a U turn, and suddenly all kinds of illnesses and exposures that were mild before started causing lifelong disability.
After seeing no progress for ME for decades. The lack of urgency to address Long Covid. Being so belittled and mistreated by the establishment. Seeing our time and energy-sucking advocacy go to wasted meeting after meeting w/NIH. I could care less that RFK would take a wrecking ball to that agency. I hope he gets some of our highest still-remaining enemies, like Wallit and Nath. In fact, let's write to him with a list! We're not going to see any help anyway. I don't believe RFK is going to have us on his radar. But if we appeal to his ego and tell him our long frustrations with NIH, maybe he'll see the light. Maybe he'll allow research. Or maybe he'll join with the rest of them, and say ME and Long Covid don't exist. Honestly it just doesn't seem to matter who is in power. What we've been doing hasn't been working with these people. Ultimately I think they want to leave research to the private sector. I'm good with that, but we still need the funding.
I think this take is terribly misguided. Just the other day RFK, Jr. said he was going to call all of the department heads together and tell them they will be taking a break from infectious disease and drug development. Also, I think he thinks all things can be solved with food.
I rarely take the time to watch videos, but this video on the RFK appointment by UCSF oncologist and evidence-based medicine guru Vinay Prasad is well worth watching.
He doesn’t agree with RFK about everything, but he takes him seriously. He also thinks RFK could be effective at combatting corruption and big Pharma influence at both FDA and CDC.
Vinay Prasad is heavily funded and writes for the Brownstone Institute. They're a disinformation right-wing think tank with the mission of discrediting all things Covid. Vinay says Covid isn't real and Long Covid doesn't exist. Over and over he says this and keeps the money rolling in. He doesn't "believe in" any IACC's because he's paid not to. I'm going to pass on viewing his opinions on any topic. He is not credible.
First, I’ve viewed Prasad’s work extensively, and think he is one of the smartest, most intellectually honest, and most rigorous evidence-based scientist around. If you have specific works of his that you critique, please share the specifics of your critique.
Second, what evidence do you have that Prasad is paid by the Brownstone Institute? He has said that they have disseminated some of his articles but not for pay. He works for UCSF, not Brownstone. And in any case, I would disagree with your characterization of them as a “disinformation right-wing” think tank. Just because you disagree with something doesn’t make it “disinformation,” or “right wing” for that matter. It used to be that science didn’t have a left and right, but now apparently it does, which has set us all back.
Third, I feel certain he has never said “Covid isn’t real,” as he has written many posts and created many videos about covid and SARS-CoV2. If you have a citation to him saying covid isn’t real, please share it.
On long covid, he has cited studies that show that covid isn’t more likely to cause long covid-like symptoms than other upper respiratory infections. I find that credible and think the studies he cited in this regard seem well designed. My own ME, and that of many, many people, was triggered by the flu.
Finally, I would agree that he doesn’t understand ME, long Covid, or similar conditions well, and has some biases about them. His knowledge of them seems limited to the general view put out in the broader medical community, which we all know is very lacking. So I think he needs education in this area. But given his strong intellectual commitment to following the evidence, I feel confident that he would be able to learn. And, his discussion of RFK has nothing to do with ME or LC, so I don’t see why his attitude toward it would be relevant.
Great comment. A vaccine against the ME pathogen is a long time dream of mine, love that you mentioned it. NIH is hidebound in its refusal to fund scientists who would like to isolate the virus that might lead to a vaccine. A moon-shot style effort is warranted. NIH needs disrupting, which makes RFK Jr. intriguing, but a moratorium on infectious disease research feels stone age right now and polar opposite of where ME research should be headed.
I think RFK is mostly talking about diverting funds from HIV/AIDS research, which has an enormous amount of federal funding - about $3.3 billion a year from NIH alone. It is far out of proportion to the disease burden. This is an empire that Fauci built so he could sit like a king on top of that huge pile of cash.
And remember that RFK is providing political soundbites in these speeches, not giving a detailed or realistic policy agenda. No one is going to completely eliminate NIAID even temporarily. Also, the small bit of pathogen work NIH has done on ME was not at NIAID anyway. It was at NCI and FDA (the Ruscetti’s and Alter/Lo, IIRC).
If the outsized spending for HIV/AIDS were reduced, more funding could be devoted to research on ME, including for pathogen discovery. I would also like to see real infectious disease epidemiology done on this disease, such as contact tracing, looking at spread in families and between mothers and infants, and investigating epidemiological links to possible related conditions such as NHL. I suspect RFK would be supportive of these endeavors. This is the quote from the CHD writeup of his convo with Hillary:
The two also agreed the NIH is wasting money looking for genetic causes of diseases.
“Genes don’t cause epidemics,” Kennedy said. “You need an environmental toxin or you need a microbe.”
“There is a limited universe of what can be causing this, and we should identify those 20 or 30 causes and then eliminate them with science one at a time,” he added. “That’s what NIH ought to be doing.”
Back to me: But we would need to make sure that we had serious scientists like Maureen Hanson involved, not charlatans like Lipkin, who has been wasting the community’s paltry research funds for years.
Thanks for your comments. Some of the infectious disease epidemiology you describe was actually done in 1956 by Donald Henderson in Punta Gorda, Fla. when he was head of the CDC's Epidemic Intelligence Service. He left a detailed protocol for his successors at CDC to follow should another discrete outbreak of ME occur in the US. It did occur in Incline Village in 1984-85, but CDC botched the investigation. In 1987, CDC told me that Henderson's protocol could not be found. (I compared Henderson's investigation in Florida in the Fifties to the CDC's investigation in Nevada in the 1980s in a previous Substack called "Where is Don Henderson's Missing Protocol?") Re: vaccine. Yes, it's a far off dream, and it may not be possible depending on the nature of the virus. I'm thinking of future generations who might be spared this living death. Agree ME has an incredibly worthy and dedicated scientist in Maureen Hanson.
Correction: the Substack post in which I compared the CDC's investigations of ME outbreaks in 1956 and 1985 is called "The Right Stuff."
Re a vaccine - I think discussion of that is getting way ahead of ourselves given that the pathogen hasn’t yet been determined. Plus, scientists have been trying to develop a vaccine for HIV for decades and have failed even with a huge budget. If the pathogen that causes ME damages the immune system like HIV, that could make a vaccine even more difficult.
I personally would be very happy with an identified viral cause (an actual single cause, not multiple “triggers”) and targeted antivirals that were covered by insurance. Many people with Hep C were cured that way.
Thank you for this. It echoes many of the thoughts I have had about this possible appointment.
No matter who gets appointed to HHS, status quo for myalgic encephalomyelitis is NOT okay.
agree 100%. There continue to be no effective champions at NIH for ME--still the poor stepchild of every other disease.
ME is on RFK Jr.'s radar, so is corruption at the NIH. All I know is that if things stay as they have been there will be no change for ME. I am ready to gamble for change. And, outside of the ME sphere, RFK Jr. has a lot to contribute toward positive health improvements for Americans b/c the chronic diseases of which he does speak on are important. He knows about corruptive forces within health journals too and wants to target that.
Also, thank you for writing about RFK Jr. Since you had done an interview with him, I have been waiting for you to weigh in.
As an Aussie & ME sufferer of 29+ years who has read a fair bit about RFK Jr., I have to say I am thrilled with his appointment. If anyone will bring positive change, & hopefully listen to ME patients, it is him. I hope I am not proved wrong. Time will tell. I have more faith in him than anyone I’ve known of so far.
I agree that the status quo isn't acceptable. However, change can make a situation better, or it can make it even worse. Time will tell, but this PwME does not share the optimism expressed on this page. I fail to see how an 8-year pause on research into infectious diseases will help prevent more people from swelling the ranks of the post-viral, post-COVID, ME-affected people who have doubled my specialist's patient load to 3000+. So what if ME is on Junior's radar? His dismissal of Hilary's argument for a viral origin is telling, as is his aversion to vaccines as an important intervention. Like they say, when someone shows you who they are, believe them.
It's an interesting piece, thanks for sharing. I have ME/CFS so when the subject turned to that, I was very alert. I think RFK could be a nightmare, but I haven't followed him until this crazy 45 cabinet appointment.
Please fix the repeated typo: I assume you mean RFK but it says JFK..
I don't know whether to like this or dislike this.
I understand!
Hillary - On a totally different topic, I’d be interested in your thoughts on the comment below that I posted on The Real AIDS Epidemic substack. The topic was whether ME and LC are the same disease.
Allie587
I think Long Covid and ME are the same disease. I think ME is caused by a pathogen, probably a virus or retrovirus, that is stilll unknown and that began spreading in this country to large numbers of people in the 1980s. For the purposes of this writeup, let’s call it Pathogen X.
Patients infected with Pathogen X likely have a latency period, similar to HIV. They eventually develop symptomatic ME, often after some trigger like contracting the flu, or giardia, or some other minor pathogen that wouldn’t usually be disabling. Because there are so many different triggers, some have developed the theory that there are many CAUSES of ME. But actually there is just one underlying cause, Pathogen X.
I think the phenomenon of Long Covid is part of the Pathogen X epidemic. In other words, patients who develop LC are already infected with Pathogen X, but it is latent. When they get covid, even a mild case, it can tip the balance, and they develop ME (but we call it LC).
In other words, SARS-CoV2 is not the real cause of LC. Pathogen X is. SARS-CoV2 is just one of many possible triggers.
This means that people who are so worried about covid as a “mass disabling event” are worried about the wrong epidemic. The Pathogen X epidemic is the one that is getting worse by the day and disabling millions of people - and that has been spreading in this country since the 1980s.
I obviously agree that a specific virus causes ME. There is no other rational explanation. For some reason, scientists, researchers, doctors, suspend all that is known about infectious disease when it comes to ME. Hence the "ME is caused by anything" mythology, yet, everyone, even patients, seems to buy it. It certainly takes the heat off the DHHS for suppressing the pandemic in the 1980s when they might have prevented it from becoming endemic. Your hypothesis could be resolved, or could have been resolved in the 1980s, if CDC had taken the disease seriously enough to perform epidemiology on it and fund research. Feds will not even perform epidemiology on it now, and in fact when pressed admit they continue to believe it's unworthy of study. ME will continue to be a mystical, magical disease unlike any other known to humanity, with no cause or cure or prevention, indefinitely. IMO, the idea that other infectious diseases magically turn into ME arises from the vague, non-specific definition of ME pushed by CDC. The definition is certainly convenient for the prestige agencies NIH/CFS.
I agree that they “suspend all that is known about infectious disease when it comes to ME.” They also suspend all that is known about human genetics. They would have us believe that in the 1980s, human evolution took a U turn, and suddenly all kinds of illnesses and exposures that were mild before started causing lifelong disability.
After seeing no progress for ME for decades. The lack of urgency to address Long Covid. Being so belittled and mistreated by the establishment. Seeing our time and energy-sucking advocacy go to wasted meeting after meeting w/NIH. I could care less that RFK would take a wrecking ball to that agency. I hope he gets some of our highest still-remaining enemies, like Wallit and Nath. In fact, let's write to him with a list! We're not going to see any help anyway. I don't believe RFK is going to have us on his radar. But if we appeal to his ego and tell him our long frustrations with NIH, maybe he'll see the light. Maybe he'll allow research. Or maybe he'll join with the rest of them, and say ME and Long Covid don't exist. Honestly it just doesn't seem to matter who is in power. What we've been doing hasn't been working with these people. Ultimately I think they want to leave research to the private sector. I'm good with that, but we still need the funding.
I think this take is terribly misguided. Just the other day RFK, Jr. said he was going to call all of the department heads together and tell them they will be taking a break from infectious disease and drug development. Also, I think he thinks all things can be solved with food.
I rarely take the time to watch videos, but this video on the RFK appointment by UCSF oncologist and evidence-based medicine guru Vinay Prasad is well worth watching.
He doesn’t agree with RFK about everything, but he takes him seriously. He also thinks RFK could be effective at combatting corruption and big Pharma influence at both FDA and CDC.
https://youtu.be/l1S2axsyqwY?si=xe-0_2vGxQEjhJQQ
Vinay Prasad is heavily funded and writes for the Brownstone Institute. They're a disinformation right-wing think tank with the mission of discrediting all things Covid. Vinay says Covid isn't real and Long Covid doesn't exist. Over and over he says this and keeps the money rolling in. He doesn't "believe in" any IACC's because he's paid not to. I'm going to pass on viewing his opinions on any topic. He is not credible.
First, I’ve viewed Prasad’s work extensively, and think he is one of the smartest, most intellectually honest, and most rigorous evidence-based scientist around. If you have specific works of his that you critique, please share the specifics of your critique.
Second, what evidence do you have that Prasad is paid by the Brownstone Institute? He has said that they have disseminated some of his articles but not for pay. He works for UCSF, not Brownstone. And in any case, I would disagree with your characterization of them as a “disinformation right-wing” think tank. Just because you disagree with something doesn’t make it “disinformation,” or “right wing” for that matter. It used to be that science didn’t have a left and right, but now apparently it does, which has set us all back.
Third, I feel certain he has never said “Covid isn’t real,” as he has written many posts and created many videos about covid and SARS-CoV2. If you have a citation to him saying covid isn’t real, please share it.
On long covid, he has cited studies that show that covid isn’t more likely to cause long covid-like symptoms than other upper respiratory infections. I find that credible and think the studies he cited in this regard seem well designed. My own ME, and that of many, many people, was triggered by the flu.
Finally, I would agree that he doesn’t understand ME, long Covid, or similar conditions well, and has some biases about them. His knowledge of them seems limited to the general view put out in the broader medical community, which we all know is very lacking. So I think he needs education in this area. But given his strong intellectual commitment to following the evidence, I feel confident that he would be able to learn. And, his discussion of RFK has nothing to do with ME or LC, so I don’t see why his attitude toward it would be relevant.
If RFK cleans up some of the corruption it might help expose frauds like Ian Lipkin, who has done endless harm to ME patients.