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At age 73, Ian Lipkin is excited about where we are with ME/CFS.
Who would have thought the world’s greatest virus hunter would ever have taken an interest in chronic fatigue syndrome (ME/CFS)? There are lots of nasty bugs out there, after all, and Ian Lipkin’s lab has been hunting them for decades.
Lipkin has developed numerous methods (MassTag-PCR, GreeneChip diagnostic, High Throughput Sequencing) to track down emerging pathogens. The list of pathogens he’s played a key role in is long, and includes West Nile Virus, the first SARS virus, Arenavirus, hemorrhagic fever virus, MERS, Zika, and Bornavirus.
Closer to home, the Tick-Borne Disease Serochip (TBD Serochip) he and his lab developed, significantly improved diagnostic accuracy by enabling the quick and accurate detection of eight different tick-borne diseases. Lipkin’s group has identified at least 20 new viruses ticks carry in the northeastern U.S.
We could go on and on about the number of pathogen detectives he’s trained and the hundreds of viruses he and his teams have discovered. Lipkin’s ability to speed up the detection of pathogens has saved countless lives. Given all that, the question that begs to be answered is, what is this paragon of pathogen detection doing, spending most of his time now working on a neglected, controversial, and often overlooked disease like ME/CFS?
The Gist
At age 75, Ian Lipkin is excited about where the ME/CFS field is at.
Who would have thought the world’s greatest virus hunter would ever have taken an interest in chronic fatigue syndrome (ME/CFS) – let alone devote much of his time to it?
Ian Lipkin, the leader of the NIH-funded ME/CFS research center at Columbia University, is doing just that. In our “What’s Up Doc?” video, he explained that he’s been interested in ME/CFS for 25 years, but over the past 15 years or so, he’s been devoting more and more of his time to neglected, chronic diseases like ME/CFS and autism.
His personal connections to people with this disease run deep. He knows three formerly young and healthy people who committed suicide.
The Best of Times – Despite using supersensitive techniques, Lipkin’s never found a pathogen that’s responsible for ME/CFS. Instead, through a series of studies employing metabolomics, genomics, proteomics, and the microbiome, among other approaches, he has been exploring the “hit and run” hypothesis, whereby a pathogen hits the body so hard that it leaves a lasting impact.
Lipkin’s been studying ME/CFS for a while, but now believes the field is on the cusp of something exciting indeed. Lipkin believes his and others’ work on the molecular underpinnings of ME/CFS have produced “some very plausible models that suggest that we can start clinical trials very soon.” He said, “There’s so much hope right now. We can finally get somewhere with this.”
Lipkin’s three NIH-funded projects involve a “Good Day, Bad Day” study, which utilizes wearables and a comprehensive battery of molecular tests to determine the drivers of the illness. Another study complements and expands the UK’s extensive DeCode ME genomic study, and the third utilizes millions of stored samples to assess the characteristics of people with ME/CFS before they become ill, the changes that occur when they become ill, and how they change biologically over time.
A new technique allows Lipkin to assess not just the antibodies produced in response to an infection but specific antibodies that are reacting to specific parts of a pathogen that are – and this is the key part – triggering an immune reactivation in that person.
He found, during a small study, a group of ME/CFS patients for whom viral reactivation to specific parts of the virus appeared to be driving their illness and who might respond to antiviral therapy. That presents the possibility, for the first time, of a clinical trial of antiviral therapy specifically focused on that group of patients who would likely benefit.
Another study suggested that a subset of people with ME/CFS have a reduced threshold for triggering an innate immune response – something that could make them, he said, very sick when faced with the slightest stressor.
Another group of patients has reduced gut butyrate levels. The upshot of all this is that Lipkin believes we are getting close to being able to precisely identify subsets in ME/CFS. He said, “I think we’re very, very close to being able to have precise treatment for people with ME CFS, at least for a large number of people”.
Lipkin also implored people with these diseases not to give up, saying, “I am so, I am so encouraged. I am so eager. And anybody watching this podcast, don’t give up hope. I really think we’re almost there. You know, it just, you know, I, I get these notes sometimes from people who say, you know, I want to donate my, my body for your research. And I say, please don’t… just hang in there”.
The Worst of Times – The Trump administration’s battle with Columbia University has, for now, at least, upended Ian Lipkin’s work with ME/CFS. (The Trump administration has suspended or terminated approximately $700 million in NIH grants to Columbia).
In a kind of Kafkaesque situation, Lipkin has never been told who turned the spigot off, why it was turned off, who to contact to turn it back on, or if his ME/CFS has been terminated or is simply on hold. A few weeks ago, he received a notice that the ME/CFS spigot had been turned on, only to get another one a couple of hours later stating that it had been shut off again.
The Wall Street Journal reported yesterday, though, that Columbia was in talks with the Trump administration to restore some of its federal funding.
The good news is that it appears the ME/CFS grant could be reinstated. The WSJ reported yesterday that Columbia might be near a settlement to restore some of the federal funds.
The bad news is that Lipkin’s program is being kept alive by money provided by a generous donor, Jeff Ansell and his daughter, and Lipkin and his family, but the funds have all but run out. He now needs support to keep his ME/CFS research center going.
Ian Lipkin’s work is currently hanging on by its fingernails. You can support his work via a fundraising page his team created to keep it going during these uncertain times.
Health Rising is also in the midst to its quickie summer donation drive. We’re about 35% of the way to our goal.
As Lipkin explained in our “What’s Up, Doc?” interview, about 15 years ago, he transitioned to helping people with chronic neglected illnesses like ME/CFS and autism. Lipkin has heart disease, but there are lots of people working on heart disease. Not so with ME/CFS. Lipkin’s personal connections to people with this disease run deep. He knows of three formerly young and healthy people who committed suicide.
Please excuse my blurry image! (Unexpected WiFi problems occurred. Ian Lipkin’s image is fine.)
Oddly enough, the great pathogen detective has never had much success in directly finding pathogens in ME/CFS. The bornavirus, with its central nervous system-altering capabilities, seemed like a promising fit for ME/CFS, but Lipkin’s attempt in 1999 to link it to ME/CFS was unsuccessful. Its failure left behind a telling clue, though. Likewise, Lipkin’s later use of techniques 1000xs more sensitive than had been tried before failed to find evidence of an unusual pathogen at work in ME/CFS.
Lipkin failed to find evidence of bornavirus in ME/CFS but did find that most ME/CFS patients’ B-cells were spitting out odd antibodies like there was no tomorrow.
In retrospect, it turned out that the headline,”No bornavirus for in ME/CFS”, might have better read “Substantial B-cell dysregulation found in ME/CFS”. Lipkin’s bornavirus work found evidence of ‘non-specific polyclonal B-activation’ – a sign that B-cells were pumping out scads of odd antibodies in almost 80% of ME/CFS patients. B-cells, of course, have become of great interest in ME/CFS recently.
Likewise, Lipkin’s autism work in the Autism Birth Cohort suggests that pathogen-triggered immune dysregulation in the mother during pregnancy increases the risk of autism. (It has also been found that folic acid supplementation during pregnancy reduces the risk of ASD by 40%.)
Over the past fifteen years, Lipkin has turned his attention to exploring, through microbiome, proteomic, metabolomic, and immune studies, the hit-and-run hypothesis, whereby a pathogen is vanquished but leaves behind a lasting impact. He’s been studying ME/CFS for a while but now believes the field is on the threshold of something very exciting.
The Best of Times…
“There’s so much hope right now. We can finally get somewhere with this.” Ian Lipkin
Lipkin believes his and others’ work on molecular underpinnings of ME/CFS has produced “some very plausible models that suggest that we can start clinical trials very soon.” He is not alone. Avindra Nath and Nancy Klimas have also asserted this. All think the key will be identifying subsets, which he stated we now have the tools to do and is “just around the corner”.
Lipkin said, “There’s so much hope right now. We can finally get somewhere with this.” On a personal level (Lipkin knows many people with these diseases), he called the progress “gratifying.”
One of Lipkin’s blocked studies involved a genomic collaboration with Decode ME.
His NIH-funded ME/CFS research center has been involved in three projects. One was a Good Day/Bad Day project to scour multiple tissues (saliva, blood, urine, and more) for clues to what’s happening when people with ME/CFS feel better and feel worse.
Another was a genome-wide study that aimed to do for the US what Chris Ponting’s UK Biobank study is doing for the UK. Combining the two would result in a much larger, more powerful GWAS study, which could pinpoint the genetic risks of coming down with ME/CFS, potentially pointing to causes and treatments.
The last, and perhaps the most interesting, was to take advantage of millions of blood samples gathered by the Department of Defense, using an AI program to identify samples taken before and after people developed ME/CFS, to pinpoint triggers, such as immune or metabolic issues, assess the effects of duration, etc.
After Lipkin failed to find direct evidence of a pathogen in ME/CFS, he switched gears and developed a new method to assess the body’s reaction to a pathogen. This method allows Lipkin to assess not just the antibodies produced in response to an infection but specific antibodies to specific parts of a pathogen that are – and this is the key part – triggering an immune reactivation in that person. Nobody has been able to assess antibody levels/pathogen reactivity in this kind of detail in this disease. (Lipkin used this technique to break the code on acute flaccid myelitis a couple of years ago.)
Using this unique technique, Lipkin found, during a small study, a group of ME/CFS patients for whom viral reactivation to specific parts of the virus appeared to be driving their illness, and who might respond to antiviral therapy. That presents the possibility, for the first time, of a clinical trial of antiviral therapy specifically focused on that group of patients who would likely benefit. He compared it to treating high blood pressure: if the marker is there, you treat it.
He noted that Ampligen, which boosts the innate immune system to eliminate viruses, clearly works for some patients. A kind of paralyzing question for ME/CFS doctors has been what to do with the immune system: suppress it or enhance it, and if you enhance it, which part of it? Lipkin’s subsets provide a roadmap for them.
Lipkin believes the ME/CFS field is on the edge of achieving a kind of holy grail – identifying biologically based subsets.
Lipkin’s presently moribund Good Day/Bad Day study clearly presents an immense opportunity to pluck out this group of patients. In this study, patients wear wearables to provide a baseline. Once a threshold is reached—the patient is either doing much better or much worse— the investigator reaches out to the patient and collects a sample. The sample is then tested for metabolites, proteins, nucleic acids, antibodies, and gene expression, among other biomarkers, and compared to samples taken when the participant is performing better. The beauty of it is that patient never needs to drag themselves into the lab when they’re feeling really bad – the investigator comes to them.
Lipkin referenced a study where he took immune cells and exposed them to triggers of the innate immune system. Using metabolomics, immunological measures, cytokines, gene expression and others, he found that people with ME/CFS – in particular, women with ME/CFS – had a much greater response to immune stimuli – a finding that tracks with the ideas of immune exhaustion. Metabolically, they identified abnormalities in metabolites associated with mitochondrial damage.
That suggested to Lipkin that many people with these diseases have a reduced threshold for triggering an innate immune response. (This fits in well with Nath’s and others’ work, which suggests that defects in B and T-cells in the adaptive immune response are putting the innate immune response on a hair trigger.)
Lipkin said that when something like that is happening, the smallest stressors will throw you off, and “you’re going to feel sick all the time.” In contrast to the other group, you might want to suppress innate immunity (and enhance the adaptive immune system?) in this group, and some drugs can do that.
Lipkin’s goal is to develop a diagnostic panel for ME/CFS subsets that will inform targeted treatments. He believes we’re closer than we think.
Ditto with Lipkin’s gut flora work, which shows that some people with ME/CFS have very low levels of butyrate-producing bacteria while others don’t. While gut flora may not be the answer, its effect on the immune system suggests that rebalancing it should be helpful. Ultimately, Lipkin’s goal is to create an efficient diagnostic panel that doctors can use to rapidly decide which category a patient fits into and which treatment to pursue.
Lipkin believes we are closer to developing effective treatments than figuring out ME/CFS. In fact, he believes those treatments may not be far off. “I think we’re very, very close to being able to have precise treatment for people with ME CFS, at least for a large number of people”. He noted that recently, a group of leading clinical and basic researchers had been trying to prioritize the first efforts in establishing a clinical trials program.
Lipkin is more optimistic about the future for people with these diseases than I’ve ever heard him. He said:
“I am so, I am so encouraged. I am so eager. And anybody watching this podcast, (and there’s one person in particular, Ron) don’t give up hope. I really think we’re almost there. You know, it just, you know, I, I get these notes sometimes from people who say, you know, I want to donate my, my body for your research.
And I say, please don’t… just hang in there”. He rued the young, formerly healthy people he’d known who’d committed suicide, and said, “We’re almost there. It does seem like so many things are tying together.”
Of course, more funding is needed. For years, Lipkin has felt that given the right funding, progress will be rapid. We’ve never received that kind of funding, but Lipkin is clearly encouraged by what the field has accomplished with the limited funding it has had. If a wealthy person came to him and said I want to do a Manhattan Project in ME/CFS, though, he predicted, “We could get this thing done in two years.”*
That’s how close he thinks we are.
- *Please note that Lipkin predicted in 2016 that we could solve ME/CFS in 3-5 years – provided that it got the resources it needs. He did NOT say, as some remember, that ME/CFS would be solved in 3-5 years. I know – because I was the one who reported on Lipkin’s statement, and I made sure that the proviso – if the resources were provided – was included.
The Worst of Times
With its funding locked up, Lipkin’s ME/CFS research center is being kept afloat by private donations. A recent WSJ piece stated that Columbia may be getting close to restoring some federal funding.
The field is progressing, but Lipkin’s work is currently on hold, and has been for a while. In what Lipkin called a “painful” situation, his NIH-funded ME/CFS research center funding at Columbia was cut during the Trump administration’s kerfuffle with Columbia University.
(First, the administration terminated $250 million in NIH grants, and later froze $700 million in NIH grants at Columbia. Columbia is not alone. As of June, the Trump administration has ended or delayed nearly 2,500 grants across the NIH, effectively reducing funding by $2.3 billion. The vast majority do not involve DEI projects.)
In a Kafkaesque situation, Lipkin has never been told who turned the spigot off, why it was turned off, or who to contact to turn it back on. Lipkin was informed by one source (Sponsor Projects) that his grant had been terminated, but the NIH website indicates it’s on hold, and he has never received a termination letter.
He agonized over a Gulf War Illness/ME/CFS study that has been terminated. All the samples had been collected, and much of the data had been analyzed, but the project was suddenly terminated because the powers that be didn’t understand that he also needed to analyze the data, perform the biostatistics, create the models, and write up the paper.
A few weeks ago, he got a notice that the ME/CFS spigot had been turned on, only to get another one a couple of hours later that it was shut off again. (Science reported that the NIH initially told its program officers that they could resume funding to Columbia. Six hours later, the grants were back on hold, with the NIH communications officer reporting, “There is no funding for unvetted woke ‘research’ at Columbia”. The Wall Street Journal reported yesterday, though, that Columbia was in talks with the Trump administration to restore some of its federal funding.)
The good news is that it appears the ME/CFS grant could be reinstated if a way to do so can be found. The bad news is that Lipkin has no idea how to do that. He said, “If anybody listening has any influence, you know, on how these decisions are made, please get that turned back on.”
The program has been kept alive by money provided by a generous donor, Lipkin and his family, but the funds have all but run out. He now needs support to keep his ME/CFS research center going.
Lipkin is now 75 and is not in the greatest health, but he’s clearly excited and eager to move forward in the field. Let’s hope he’s able to fully bring his decades of experience to bear on this work. Maybe now is the time for a Manhattan project for ME/CFS.
Supporting Ian Lipkin’s work
Ian Lipkin’s work is currently hanging on by its fingernails. You can support his work via a fundraising page or by using the QR code below that his team created to keep it going during these uncertain times.
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With all due respect to Professor Lipkin, I have been hearing these kinds of stories for over 20 years. Now show us the results that provide real breakthroughs in this disease. All those beautiful theories and so-called significant findings are of little use to ME patients at the moment. It is no more than giving hope. These further studies will certainly take more than 10 years. I fear that in that time many more ME patients will have committed euthanasia or suicide. As bad as that is of course. But do not give people false hope.
While all due respect, Gijs – I have not.
You might remember – if you read it – that I started off the donation drive with a similar question “The question I keep asking myself lately is, “Are we on the cusp of something big?” It looks like pieces of the puzzle are starting to fit together” because it really does seem on multiple levels that things are coming together.
I was happy to hear the same from Lipkin.
To be clear I don’t think that in the next year or two that ME/CFS or long COVID will be solved but I do think that the picture is coming into focus and that has not been true before.
Ian Lipkin is saying “just hang on” and you’re saying “don’t believe it”. For my health and well-being I’m going to stick with Ian :)…Why the heck not?
Cort, I so much admire your dedication and your keen intelligence that has the ear of all these researchers. They talk to you because of the respect they have for you. Thank you
Thanks, so much, Jeanne. How nice it is (and a little nerve-wracking :)) to be able to sit down with some of these people.
Sorry Cort, on this point we do not agree. I don’t think Ian is going to chance anything for us. Just nice words, show me the data, the evidence. I wait for it…. I heard these things so many times before.
I’m going to push back on this because I have not seen anyone say that they think they have tools to identify subsets like this before. Nor have I ever heard Ian Lipkin say that he is “eager” like he is now what he believes the future will bring. He is genuinely excited. I think that’s pretty clear, and I’ve never seen that kind of excitement from him before.
So, I disagree that we have heard this so many times before. I haven’t.
As to progress in the field: the now many studies showing that all sorts of immune cells have energy production problems, that they’re exhausted, that the innate immune system appears to be trying to compensate for the exhausted T-cells and immature B-cells, that there are also energy production problems in the muscles and the brain, the fatigue and pain centers in the brain are upregulated….it’s all of piece.
These findings are not at odds with each other – they’re interconnected in ways that we obviously don’t completely understand – but it’s clear that they are interconnected, and that’s what’s exciting to me: the pieces of the puzzle are starting to fit together.
I’m sorry you don’t feel the same way, but I really think that now is not the time to give in to resignation. I still think it’s going to take years, but along the way things are going to continue to pop up that provide help.
(…)I have not seen anyone say that they think they have tools to identify subsets like this before. Nor have I ever heard Ian Lipkin say that he is “eager” like he is now what he believes the future will bring.(..)
Think, heard and say, mmm sounds not very scientific to me… show me the data, the proof of what you heard…. It is only hope … nothing more.. at this moment…
Ian Lipkin must be positive because otherwise his projects will not getting funding anymore…
Lipkin is 73 years old. He’s had a great career. He’s acknowledged all over the world. He doesn’t need to do any of this.
I don’t know if you watch the video he comes across is pretty genuine to me.
I don’t say that he needs to do any of this for ME, but still he needs funding for his projects and his ”team”. He looks genuine to me too. But lets see what he find out for us and how long it will take.
You know what it is Cort after 30 years of this illness i think many patiënts haven’t much more time anymore. Hope is good but realism is better. Maybe i became to sceptical or negative, sorry
I hope i am wrong.
Gijs, I can totally relate to your realistic attitude. I lost a son two years ago to ME/CFS. However, I would like to give you some hope when you read the study that was just published two months ago in May 2025 that identifies subsets (unrelated to Dr. Lipkin’s work):
https://academic.oup.com/jimmunol/advance-article/doi/10.1093/jimmun/vkaf087/8133211?login=false#
Trust me, things have changed. I also disagree with Cort’s statement that it’s going to take years. The Bateman Horne Center, a world famous ME/CFS clinical/research/education center published a free, state of the art, 95 page Clinical Care Guide in May 9, 2025. It will save lives and provide hope of immediate help in navigating ME/CFS and Long Covid. Over 50,000 people have already downloaded it.
”You never heard this before” I think you forgot De Meirleir, Mikovits and also Klimas…. they gave hope too….
I agree. Unfortunately I think there have been a lot of snakeoil salespeople in the ME/CFS field.
I am not sure who I have much hope in these days. I think Systrom is doing some good work.
I think Iwasaki started off promising but perhaps now is seeing just how complex ME/CFS is. It seems to me that anyone, like Iwasaki and many before her, who focus on immunological and viral aspects always come up short because…..ME/CFS is not perpetuated by a viral factor (I get tired of saying this, to be honest). It’s an illness of the CNS / brain, that can be triggered by viruses (and other things)
I also think it starts in the brain. The ANS/Stressystem is broken then follows the immunsystem etc…
Exactly.
Problems with the ANS can leave to immune exhaustion, as one example
Guys, it’s just the other way round. It starts in the immune system.
What do you base your “intuition” upon? Avindra Nath’s completely unsubstantiated “it’s a brain disease” claim? The guy didn’t even chose patients with the CCC for his study.
Gez Medinger’s Long Covid Youtube channel?
Are you aware that the idea that nervous system arousal was key in Long Covid entered the discussion in that form just when vagus nerve stimulation began trending in social media because of the marketing of some new devices to trigger it?
Maybe these aren’t your trusted sources. It would still be fair if you shared with us what you build your opinion upon instead of just giving your unfounded opinions – that we all already know here for a long time by the way.
Here is a brand new literature review of the findings about T-cell exhaustion:
https://www.qeios.com/read/YDRIR2
The data is pretty robust in the meantime.
This kind of T-cell exhaustion is known from other illnesses. Guess what they are? Chronic viral infections.
I am not at all pessimistic because I think the problem is already solved. The main group of ME/CFS patients who fulfills the CCC I am convinced has a remitting, relapsing form of HHV-6b reactication that hasn’t been understood by infectiologists yet.
Jacqueline Cliff from Brunel and her team will be able to bring the full proof within the next years.
Every serious researcher in the field is aware that ME/CFS could very likely be a virus. But because they are all immunologists they have problems to go directly after it because it’s not their field.
See for example Iwasaki.
Hi Lina, i agree it could be a herpes virus . It is a two way street. a loop 🙂 ANS- reactivation herpes virus (and more)- exhausted immunesystem….. Or the other way around…..
I would not be surprised if the immune system was at the heart of this and I am very heartened by the T-cell exhaustion results.
All the patients in Nath’s study, by the way, had to be unanimously approved by a group of ME/CFS experts including Dan Peterson, Ben Natelson and unfortunately I can’t remember the rest.
In the end, Nath didn’t choose the patients – the ME/CFS experts did.
I agree we need much more work on HHV6 – Nancy Klimas has found its more reactivated in ME/CFS than EBV if I remember correctly.
You means “show me the data, DeMeirleir?” Yes, DeMeileir consistently overpromised and so did Mikovits – who famously (infamously) told the world that XMRV was in mother’s breast milk, that XMRV was going to be worst than HIV/AIDS, and that everyone who didn’t find XMRV was in a conspiracy against ME/CFS.
I don’t know what DeMeirleir is doing now, but Mikovits is long gone, and I haven’t heard anything from him in years.
Neither is emblematic of the field. Certainly, neither of them is in the same ballpark as Ian Lipkin regarding their body of work, reputation, etc.
Hey Gijs, some things have definitely changed in my opinion: 1) research technology is way advanced from wat it was in the past, now enabling a look a ME/CFS at the molecular and cell level, and looking at huge amounts of body data at the same time (like in all these studies about some -ome, like metabolome); 2) the number of ME/CFS research studies is significantly higher than it was in the past, 3) following the Pandemic, more people in key positions personally know people with ME/CFS or are affected themselves (a German true crime podcaster with ME/CFS recently singlehandedly raised 370.000 EUR for ME/CFS research and awareness raising), 4) at least in Germany, I think ME/CFS piublic awareness has been changed by the Pandemic – it’s a regular news topic); 5) There are now ME/CFS international conferences where researchers network with each other.
Which is why I am “team cautiously optimistic”, though I still think it could take many years to figure it out and that there is not enough funding. (Current example: German government discussing whether to budget 10 or
15 mio EUR for ME/CFS research, but former health minister is all over the news saying 1 billion is needed). What discourages me sometimes is that other diseases exist that are not yet curable; what encourages me is that I expect ME/CFS to be a regulation problem rather than tissue degeneration, and few other diseases are being researched from so many different angles like ME/CFS is!
That being said, I think everyone needs to figure out for themselves what keeps their mental-balance ship floating, and I think that can be different for different persons, or even change for one person over time. So, I understand your position of not wanting to hope too often, while for others it might be something they find uplifting in their current situation.
Kind regards and best wishes!!
Cort, why is it that US researchers can’t seem to find funding, yet the University of Edinburgh just published a huge study of 1455 ME/CFS patients compared to 130,000 controls and found 116 blood markers consistent with chronic inflammation, insulin resistance and liver disease in the ME/CFS patients. And this was further linked to PEM.
The importance of this study was that this research was then replicated in the U.S. I wonder where Harvard got the money?
A study that is replicated is “gold”. Too many ME/CFS studies stand alone because researchers are protective of their turf.
I have never read any research (I may have missed some.) looking at the liver in ME/CFS. And the insulin resistance could explain why metformin works for some. Metformin can inhibit HHV6 A and in further research I found that HHV6 A can cause chronic inflammation, insulin resistance and liver problems.
“HHV-6A, a herpesvirus, can be associated with liver disease, including acute liver failure (ALF), particularly in immunocompromised individuals or those with underlying liver conditions.”
“Research suggests a potential link between human herpesvirus 6A (HHV-6A) and insulin resistance.”
” There is research suggesting that Human Herpesvirus 6A (HHV-6A) may be involved in causing or contributing to chronic inflammation.”
The best research I have read lately has been from overseas. Why is a small country like Scotland able to do research that we can’t seem to find the funding for.
I hope everyone on this blog list will read this study.
https://www.embopress.org/doi/full/10.1038/s44321-025-00258-8
It may be the biggest breakthrough we have ever had in ME/CFS.
I think the liver and insulin finding is potentially really important. Fluge and Mella have highlighted a subset of patients with these issues. This – In reply to Cort Johnson.I think in part its partly because of the way the UK’s medical system is structured which makes doing these large studies easier. The UK was WAY ahead of the US during the earlier days of the pandemic as I remember. It quickly began pumping out studies.
The HHV-6 insulin connection is fascinating! Thanks for pointing it out. I’m looking forward to reading the paper.
Hi, didn’t the liver come up before in one blog you did, I think the one where you discussed the AI (?) predictive modelling done by a patient (with a Greek (?) name)?
Thanks for the study link, Betty, I am too sick to read it all but hope Cort will cover it. Besides what you’ve summarised, what I take away from it is that while they have not found a single biomarker predictive of ME/CFS, they think that a panel of various biomarkers together could well be predictive of ME/CFS. “Liver” gets various search results on HealthRising and I remember it came up in predictive AI modelling by a patient here: https://www.healthrising.org/blog/2023/10/21/ai-driven-chronic-fatigue-syndrome-clues/ Kind regards!
For one example, the rapamycin finding appears very real and is a cheap, accessible medication. I don’t think everything coming out of the new research is pie in the sky or 20 years out. The pandemic gave us a lot more information about how the disease starts, and that has been a big difference maker.
Wonder why he thinks Ron is losing heart
I didn’t connect this with Ron Davis when I did the interview. I just assumed it was a Ron out there. I hope it’s not Ron Davis. The last I heard about Whitney was that all of a sudden after years on a feeding tube, he was able to eat again. Hopefully, he is still better.
Whitney Dafoe put out a pretty effective piece of writing about Medicaid cuts on 7/7. I can’t speak about the person behind the writing, but the person in the writing is sharp, compassionate and hopeful.
That’s very good news that they have isolated sub categories within ME/CFS! Because we all know treatments that work seem to very individualized. I’ll be spreading the word that he needs help financing and make a small donation myself (morale support?). I do have a question for you Cort, in case you know how to contact him. You said he has identified 20 new viruses that ticks carry in the Northeast USA. I can’t locate a list of those viruses online. All serches say there are only 5-8 that cause disease in humans and won’t give me a list of ALL viruses either. Perplexity even says they don’t exist. LOL! Check it out! “How do the 20 tickborne viruses in the Northeast compare in severity and transmission?” Praying his funding gets restored!
I don’t know but when he said that I assumed that most of them were probably not pathogenic. Let’s hope!
June20, 2025
University of Edinburgh
Scale of how ME/CFS affects blood revealed
People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness.
Scientists from the University of Edinburgh’s Institute of Genetics and Cancer worked with researchers from the Schools of Mathematics and Informatics to better understand the biology that underpins the condition.
They used data from the UK Biobank – a health database of over half a million people – to compare 1,455 ME/CFS patients with 131,000 healthy individuals.
The results, which were replicated afterwards using data from the US, showed that hundreds of biomarkers differed between ME/CFS patients and healthy people.
Some 116 significant differences were found in both men and women, a key finding as ME/CFS can affect sexes differently. The consistent results across both groups strengthens the reliability of the biomarkers, experts say.
The strongest biomarker differences were found in people who reported symptoms consistent with post-exertional malaise, highlighting its central role in the illness.
Researchers believe these biomarker changes are more likely a result of ME/CFS, rather than the initial trigger of the illness.
University of Edinburgh researchers were supported by partners from the Harvard T.H. Chan School of Public Health.
For those who would like to read the Edinburgh study, the link is below.
Hundreds of traits differed significantly between cases and controls, including 116 significant for both female and male cohorts. “These were indicative of chronic inflammation, insulin resistance and liver disease.”
https://www.embopress.org/doi/full/10.1038/s44321-025-00258-8
After decades of illness, I still get hopeful every time I hear of research like this. It takes a very, very long time to uncover the cause of many illnesses.. especially when one is as
unknown as CFS is. Thank God for the researchers that don’t give up.
He said 3 to 5 years in 2015, which doesn’t exactly instill confidence in his current 2 year estimate (while seeking new funding): https://www.simmaronresearch.com/blog/2015/12/ian-lipkin-three-to-five-years-to-solve-chronic-fatigue-syndrome-mecfs
But, Jeremy – he said appended that at the time by saying “given the resources” and he acknowledged in the interview that we never got the resources. (We clearly did not). He also said with regard to the two-year timeframe – if we received “Manhattan project-like” funding.
Cort, you did change your reply to Jeremy! The first one was not so nice……
I thought the first comment was accurate but sharp. Lipkin’s words were taken out of context and I want to be fair to him. On other hand, I don’t to be an angry poster so I cleaned it up. 🙂
Love this, thank you, Cort!
Hi Cort, I listen well to Lipkin. Lets be positive 🙂 There are two things that I find interesting. 1. EBV is coming back again. Every time. Professor Scheibenbogen says the same as professor Lipkin. What is interesting is that EBV can also reactivate under stress. EBV can disrupt the nervous system. A two-way street (a loop?). If Lipkin is able to objectively filter out this subgroup, that would be a great gain. This can be treated with antiviral agents. 2. The problems in the gut. There is a problem too. The fact that he talks about subgroups is positive.
Appreciate it. He believes we’ll be able to filter about the viral reactivation group. Then there’s the innate immune reactivation group – which I just realized could be the same group! The adaptive immune system may be allowing the viruses to escape causing the innate immune system to try and jump in!
So you have viruses escaping and an ongoing inflammatory problem….I guess you would try and hit the viruses, bump up the T-cells, etc. and try and calm the innate immune system down…I like it! 🙂
By the way, RECOVER has actually recently funded quite a bit of work on EBV in long COVID 🙂 A blog on that is coming up.
In December 2015, Ian Lipkin said, “We’re going to solve this in three to five years”.
Um, no. Not even close.
Lipkin’s heart is probably in the right place. He probably is deeply sympathetic to the plight of us ME/CFS patients, and wants to create hope. But there is realistic hope, and there is “false” hope. Two different things.
He was dead wrong last time. So why should we believe him this time?
I imagine that this happens to public figures all the time. They say something which is taken out of context and not fully quoted and they’re stuck with it. This is what I reported – and I’m pretty sure that the only who reported on that event. It was a very bold statement so I was careful to note that his timeline only figured if we got the resources needed.
Note the asterisk in the title.
Ian Lipkin: Three to Five Years* to Solve Chronic Fatigue Syndrome (ME/CFS)
On another blog.
I hope this clears things up.
It does clear things up. Thank you Cort.
And by the way, I forget where I read Lipkin’s 2015 statement, but it was NOT on one your blogs, I’m sure of that. And wherever it was, they either buried his caveat about resources or it just didn’t stick with me, a desperate patient then (and now) who took the phrase “3-5 years”, spoken by a well-known researcher, as gospel, a source of hope. Only to be bitterly disappointed.
So please forgive my cynicism now. I’m actually glad you are more optimistic! You know a lot more about what’s going on in the field than I do, you’ve always been a realist about the possibilities of effective treatment, and if you’re feeling optimistic then that makes me optimistic as well! 🙂
Appreciate it, Bob. I can well understand how that phrase would stick in any patient’s mind and how bitterly disappointing it would be when nothing happened. No need to forgive! Who knows what will happen over the next couple of years but I am optimistic that we’re on the right track and that treatments – largely because of the long COVID trials – will start showing up. How quickly they move to ME/CFS is anyone’s guess, of course, but at least patients with access to knowledgeable doctors should be able to try them.
Ian Lipkin is literally a world famous researcher. He has nothing to prove. Some of these comments are straight up ignorant.
Just wanted to leave a comment: I have rarely read any disussion (like in all the comments here) between several individuals that was controversial, sharp, but never unfair or offensive.
Very appreciated!!!!!
Nice! A good group!
Dear cort, we all want the same thing. To feel better. It’s be3n a long time. M almost eight now so I really don’t expect much now for me. I still feel it’s reactivation of EBV or other viruses. No one has mentioned Younger in Alabama recently. I do so wish there could be a Manhattan type project. I’ve said that before. I wonder how many have gut issues? I do and it’s hard on top of fatigue. Hope Lipkin can do it. He’s not a well man. He had Covid badly which I’m sure affected him. Also a falling out with his partner which is kind of secret. Do you know what happened? I, like everyone else, hope to feel better one day. I miss dr. Cheney. Sincerely, Javen Hope you feel better, dear cort.
STOP THE PRESSES!!
Gez medinger just cured his long covid by FASTING