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The Autoimmune Virus? Groundbreaking EBV Finding Could Help Explain ME/CFS

Viral Mystery 

“I’ve been a co-author in almost 500 papers. This one is more important than all of the rest put together. It is a capstone to a career in medical research,” Harley

I sensed some awe in Ron Davis’s voice as he pushed for more understanding of Epstein-Barr Virus’s effects in ME/CFS during a talk at the Brain Science conference.  Davis is not to my knowledge finding much evidence of EBV reactivation in the severe ME/CFS patient study – a surprise – but he is very interested in what happened during that initial EBV infection, which appears to have triggered chronic fatigue syndrome (ME/CFS) in so many people.

Epstein-barr chronic fatigue

A large, complex and very common virus, EBV is responsible for infectious mononucleosis and appears to contribute to numerous autoimmune disorders.

He’s not alone in his “admiration” for the virus. Simmaron’s Advisor, Dr. Daniel Peterson, whose clinical practice and research stemmed from an outbreak in the Lake Tahoe region of Chronic Fatigue Syndrome, has tracked EBV in patients for decades, noting very high titers to EBV and other herpes viruses in subsets of patients.

It’s not surprising that these two important figures have had their eyes on EBV. EBV, after all, is kind of in a league of its own.  An invader of B and epithelial cells, the 50th anniversary of its discovery was recently celebrated with numerous reviews.  Epstein-Barr was discovered in 1966 by Anthony Epstein and Yvonne Barr. It was the first human virus shown to cause cancer. The sequencing of its large genome in 1995 helped launch the genomic era.

One of the more massive and complicated viruses, it’s one of the very few viruses that’s able to avoid elimination: once EBV infects your B-cells, it’s in your body to stay. It’s able to effectively hide from the immune system and reactivate just enough so that when the infected B-cells die it can move on to other cells.

We’re well equipped to ward off EBV when we’re young – it usually produces only minor symptoms – but as our immune systems alter as we age, that changes.  Encountering EBV as an adolescent or adult (infectious mononucleosis, glandular fever)  – as increasingly happens in our germ phobic age – often means months of convalescence as our immune systems struggle to ward off this powerful virus.

The problems don’t stop there. We know that infectious mononucleosis (IM) is a common trigger of ME/CFS but coming down with IM/glandular fever in adolescence has also been shown to increase one’s risk of coming down with multiple sclerosis 2-4 fold and lupus by fifty percent.  Because of EBV’s ability to remain latent in the body, EBV reactivations are a huge problem for transplant patients with compromised immune systems.

The big question concerning EBV is how a virus which has essentially been latent for decades could contribute to serious diseases like MS and lupus. We now may have the answer. Last week, what will probably turn out to be a seminal paper in pathogen research directly showed for the first time how EBV appears to be able to trigger autoimmune diseases later in life and could conceivably play a role in ME/CFS.

The rather hum drum title of the paper “Transcription factors operate across disease loci with EBNA2 implicated in autoimmunity” in the Nature Genetics Journal hardly hinted at the possibilities the paper presents.

Transcription factors operate across disease loci, with EBNA2 implicated in autoimmunity John B. HarleyXiaoting ChenMario PujatoDaniel MillerAvery MaddoxCarmy ForneyAlbert F. MagnusenArthur LynchKashish ChetalMasashi YukawaArtem BarskiNathan SalomonisKenneth M. KaufmanLeah C. Kottyan & Matthew T. Weirauch. Nature Genetics (2018) doi:10.1038/s41588-018-0102-3

EBV  consists of several proteins of which EBNA-2 is one. EBNA-2 is EBV’s main viral transactivator; i.e. it’s a transcription factor that turns on genes in an infected cell that help EBV to survive. Essentially EBNA-2 allows EBV to hijack a cell’s genetics and put them to its own use.

The study – produced by researchers at Cinncinnati’s Children Hospital – demonstrated that once EBV infects B-cells, it turns on genes that have been identified as risk factors for a boatload of autoimmune diseases.

It turns out that even though the virus is, so to speak, latent; i.e. it’s not replicating – its transcription factor is still active  – altering the expression of our genes. The genes that it affects just happen to be the same genes that increase the risk of developing lupus, multiple sclerosis (MS), rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), inflammatory bowel disease (IBD), celiac disease, and type 1 diabetes.  Apparently decades of genetic assault from EBV’s transcription factor can set the stage or at least contribute to many autoimmune diseases.

Chronic diseases are usually caused by a variety of genetic and environmental factors. Because not everyone with these transcription factors comes down with a chronic illness, other factors must play a role. The authors believe, though, that the gene expression changes induced by the virus in the B cells could account for a large number of people with lupus and MS who fall ill.

“In lupus and MS, for example, the virus could account for a large percentage of those cases. We do not have a sense of the proportion in which the virus could be important in the other EBNA2-associated diseases,” Harley

Chronic Fatigue Syndrome and EBV/Infectious Mononucleosis – A Short History

Researchers have been trying to figure out – mostly unsuccessfully- what the heck happens to plunge people with infectious mononucleosis into ME/CFS for quite some time.

trigger

Infectious mononucleosis/glandular fever is believed to be a common trigger of ME/CFS

In fact, infectious mononucleosis/glandular fever was probably the first disease associated with ME/CFS. Studies in the mid-1990’s, including one from the CDC, suggested ME/CFS was, at least in part,  “chronic infectious mononucleosis” or “chronic mononucleosis syndrome“.  Even Stephen Straus penned a paper on the “The chronic mononucleosis syndrome“.

Straus’s small 1989 study reporting high rates of psychiatric diagnoses in ME/CFS patients prior to their becoming ill set a theme in motion which was disproved by two Peter White  ME/CFS IM publications.  White found IM/glandular fever to be a particularly strong trigger of ME/CFS which he concluded was probably responsible for about 3,000 new cases of ME/CFS a year in the U.K.

A 1992 Swedish study began a trend of examining people with ME/CFS during infectious mononucleosis and afterwards in order to try and determine what happened. That study concluded that whatever happened was not due to EBV reactivation.

In 2010 Taylor found reduced peak oxygen consumption during exercise in adolescents with ME/CFS after IM compared to IM patients who had recovered. Broderick’s finding of altered cytokine networks associated with Th17 in ME/CFS patients following IM suggested immune dysregulation had occurred.

Glaser’s 2005 study suggested that an EBV encoded enzyme produced by a non-replicating form of EBV could be producing symptoms in ME/CFS.  Lerner’s 2012 study suggested that antibodies to two EBV produced proteins were commonly present in ME/CFS – suggesting that a prolonged immune reaction to EBV might be occurring in ME/CFS as well.

In 2014 Loebel/Scheibenbogen suggested that ME/CFS patients may be having difficulty controlling the early stages of EBV reactivation.   Loebel’s 2017 follow up study suggested that ME/CFS patients’ immune system might be over-reacting to an EBV produced protein and that autoimmunity might be involved.

Leonard Jason’s large IM college student study will hopefully provide clues why some people never recover from it. He’s completing data analysis of a study examining college students who came down with infectious mononucleosis and then ME/CFS. So far Jason has found that at least 4-5% of college students come down with IM while at school.

Treatment Implications

Interestingly, several drugs that are available can block some of the transcription factors EBV has inserted into B-cells.  (I was unable to determine what they are.) The authors also hope the study will help spur more efforts to produce an EBV vaccine.

Next For ME/CFS and EBV

Now that we have evidence that EBV/IM contributes to many autoimmune diseases, it’s hard to think that ME/CFS is not somehow involved. Chronic fatigue syndrome is different in that infectious mononucleosis (and other infections) immediately triggers ME/CFS in many people. What we don’t know is if bouts of IM also trigger ME/CFS 5, 10, 15 or more years later as occurs in these other disorders.

Opportunities for Collaboration Open Up

The big question awaiting ME/CFS now is if the abnormal transcription factors associated with the autoimmune diseases in the recent paper are present. The good news is that a study determining that appears to be within reach of an ME/CFS researcher with the technical ability and funds. In an unusual move, the Cincinnati researchers are making the computer code they used available to other researchers.

“We are going to great lengths to not only make the computer code available, but all of the data and all of the results. We think it’s an interesting approach that could have implications for many diseases, so we’re contacting experts on the various diseases and sharing the results and seeing if they want to collaborate to follow-up on them.” Weinrauch

“This discovery is probably fundamental enough that it will spur many other scientists around the world to reconsider this virus in these disorders” Harley

Collaboration

The Cinncinnati team is providing its computer code free to other researchers

They believe EBV will be implicated in many more diseases, and there is already some evidence that it is.  Using the same analytical techniques, they’ve already identified 94 other diseases including many non-autoimmune diseases in which EBV may play a role.

This is one of the few studies in which the researchers are so jazzed by their results that they’ve dropped all pretenses to modesty. The study results need to be validated, but because EBV is so common and is potentially linked to so many autoimmune (and other diseases), it has the potential to rewrite our understanding of how autoimmune diseases arise. The authors fully recognize the potential importance of their finding. The lead author of the study, John Harley, said:

“I’ve been a co-author in almost 500 papers. This one is more important than all of the rest put together. It is a capstone to a career in medical research,” Harley

One of the senior authors of the study stated:

“This same cast of characters is a villain in multiple immune-related diseases. They’re playing that role through different ways, and doing it at different places in your genome, but it’s the same sinister characters. So if we could develop therapies to stop them from doing this, then it would help multiple diseases.” Matthew Weirauch

 

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81 Comments

  • Linda Julian

    April 30, 2018 at 5:57 pm - Reply

    So very interesting. I had glandular fever in the mid-50’s. I had mono in the late 1960’s. I was also exposed to polio having lived through the great polio epidemic. I cannot help but think there is a connection somewhere.

  • Richard Fowler

    April 30, 2018 at 6:25 pm - Reply

    I am glad to see the EBV virus being studied. I have read many good books on chronic illnesses that the medical field does not have known causes or cures. Recently I read the book by Anthony Williams, “Medical Medium- Secrets Behind Chronic and Mystery Illness and how to finally heal”. He is stating that EBV has evolved into over 60 varieties and are the direct cause of these mystery illnesses. This is the hardest to grasp, he says there is no such thing as autoimmune diseases and explains. Since no one has the cure yet for these illnesses including ME/CFS it is worth the read. What he suggests doing is very doable and he sells nothing. This was a hard read for me since he contradicts, although tactfully, many theories presented by other very dedicated and knowledgeable authors.

    • Kristina

      May 3, 2018 at 6:21 pm - Reply

      Wonderful. I emailed Cort about The Medical Medium and have been posting on this website about him to try and spread the word about EBV. It is great to see this research but I DO wish they would talk to Anthony Williams about this virus because he says that researchers are only aware of 1 strain, whereas there are more than 60 yet to be discovered.

      Baby steps but even this is a breakthrough. I don’t fully understand the research but It is my understanding that this virus can be dormant for many years until stress sets it off. The virus has a 6 week life when it reproduces and then leaves its ‘dead toxins’ all over to make us ill. Nice. What a horror story.

      I’m so glad you also discovered Anthony; we need to spread the word – God doesn’t lie.

  • Aidan

    April 30, 2018 at 6:26 pm - Reply

    It no doubts explains the profound Fatigue, relapses & why a 21-year-old Woman fully recovered with antivirals to this Virus after getting her blood drawn again for EBV infection & then went on to become Pregnant & her life back after treatment…It would also fit with the incidence of developing Cancer in many now left untreated…

    • Linda

      April 30, 2018 at 8:46 pm - Reply

      I recall testing positive for ebv after a Rheumatologist dx CFS about 2007. Expensive IV vit C treatment not covered by insurance did not put a dent in my disease.
      So I am constantly asking what treatmen?.
      I have had a couple of good remission since that time. Last fairly good in 2015. The first 2010 to 2012 very excellent. A very hot summer seemed to exacerbate the problems in 2012. I often feel people and doctors claiming cures when it is a remission. Is there ever any follow up?

  • steve

    April 30, 2018 at 6:45 pm - Reply

    reino35@icloud.com

    What happened to CMX001.
    This was supposed to be “the drug” for EBV.

    • Cort Johnson

      April 30, 2018 at 7:02 pm - Reply

      It tanked during it’s trial of transplant patients. It is trying to get back on track though.

      I don’t know if it would have helped, however. I imagine that it was supposed to stop viral reactivation but I don’t think viral reactivation is the issue in these autoimmune disorders. The problem, if I understood it right, are changes EBV makes to the genetic codes of transcription factors in B-cells that turn on and off genes. It’s able to do this when it’s NOT reactivated I think….I think this is one reason why it’s such an unusual finding. It suggests a very different kind of treatment.

      http://billingsgazette.com/business/investment/markets-and-stocks/could-these-biotech-stocks-really-double-your-money/article_7b091d36-225c-56b9-8dc6-6dfe28856550.html

      This biotech crashed and burned at the end of 2015, when its lead candidate, brincidofovir, failed to lower cytomegalovirus (CMV) infection rates among patients undergoing hematopoietic cell transplantation. Undetrerred, Chimerix is pressing on with the same candidate, but with two different plans of attack. H.C. Wainwright thinks the company’s failed candidate still has enough potential to raise the stock to $10 per share, a 105% gain over recent prices.

  • Carol A Perry

    April 30, 2018 at 7:06 pm - Reply

    EBV is the one virus that seems to constantly reactivate for me. I started with a vague autoimmune diagnosis (due to pos ANA) when I first got sick so I am not surprised to see this news.
    EBV association with B cell lymphomas is accepted now as well. Now how to we eradicate EBV from our B cells without killing ourselves? (The host). Most interesting.

    • Cort Johnson

      April 30, 2018 at 7:18 pm - Reply

      If I understand it I don’t think we do actually. I believe Cinncinnati team is looking for ways to block those “demented” transcription factors that EBV has inserted into our B-cells genomes from turning on genes that lead to MS, lupus and who knows perhaps ME/CFS.

      • Eimear

        April 30, 2018 at 8:00 pm - Reply

        But once the genes are turned on and we are in the chronic disease like ME/lupus etc…what can be done then? Cinncinnati team is looking for ways to block those transcription factors that EBV has inserted into our B-cells genomes from turning on genes that lead to MS etc..but that sounds like a preventative process. Is this exciting more because it can possibly prevent these diseases from happening? Or am misunderstanding?

        • Cort Johnson

          April 30, 2018 at 8:40 pm - Reply

          I got the idea that they thought they could turn back the clock. The comment here

          So if we could develop therapies to stop them from doing this, then it would help multiple diseases.”

          seems more to tuned to stopping or helping diseases than preventing them. Maybe once the genes are working properly the disease process stops and the body can go back to normal and start healing????? I hope so 🙂

          • Linda

            May 1, 2018 at 5:28 pm -

            I think you are on track with your concept of stopping it in it’s tracks. A treatment and reversal. That would benefit everyone who already has it and the damage is already done.
            For some who have suffered for years and now entering twilight years, that would be life-changing. I just HAD to cancel my 1800 mile trip to attend my grandsons graduation. And no > i no longer fly. Not even on a good day sitting in a tiny straightbacked chair. Crammed in with no elbow or foot room. I can only spend a few minutes early a.m. on the couch. Making that decision has been a major relief. I don’t drive and my husband was concerned about me making a long road trip and not being able to enjoy myself. I have not seen my 4 grands in two years. If they visited, what would I do with them from bed?

  • Guang Rong

    April 30, 2018 at 7:39 pm - Reply

    I was treated at Stanford CFS clinic with anti viral medicine for six months (2016-2017) to no avail. To be more explicit, it had no effect on me at all.

    • konijn

      April 30, 2018 at 10:55 pm - Reply

      I also never believe that EBV is te excplenation for all the wide spectrum ME/cfs. Long time ago I read regullary testimonies from cfs patients on anti-virals and their struggle with it. And I read not much of a succes. It would be simply to easy for such a complex desease with so many subgroups of patients. And by the way, the immune system is endlessley, they find “each day” new things about it.

      • dejurgen

        May 1, 2018 at 11:07 am - Reply

        “Long time ago I read regullary testimonies from cfs patients on anti-virals and their struggle with it. And I read not much of a succes.”

        I am very glad a good doctor prescribed ISOPrinosine to me, some kind of antiviral. It’s for sure no cure, but it roughly gives me a factor 2 in functionality when I take the recommended dose. That meant from very very low to very low functionality when I was at worst.

        Although side-effects are limited for me I however gradually started reducing dose as I slowly start to get better. The drug is known to be aggressive to the stomach both long and short term. I can bear it short term quite well, but feel its effect a bit and would dislike to trash my stomach in the future and end up in a worse state whilst being unable to use the drug for relief.

        additional info: I did get mono at young-adult age and thought I recovered quite well but a few years later my health started to decline gradually. So it seems that EBV may be co-responsibly for causing ME/CFS years later on. I also have frequent to very frequent cold sores, caused by another herpes virus if I recall well.

  • Cort Johnson

    April 30, 2018 at 8:43 pm - Reply

    From Birdie who couldn’t get her comment through:

    “Would depletion of B cells (Rituximab) affect this process?

    Do antivirals affect transcription factors? (Is that a potential mechanism for why people may feel better in the absence of active infection?”

    Because Rituximab wipes out B-cells I think it might have an effect on this process. (?)

    I don’t know if antivirals effect transcription factors. They sound like something antivirals might target but I don’t know.

  • Linda

    April 30, 2018 at 8:54 pm - Reply

    Sounds like they are looking for prevention. I need treatment.
    Certainly shows a long way to go.
    It would certainly help if we get the psychobabblers out of the picture. I still get that recommendation. Too bad the only doc I ever you d who recognized CFS is 1800 miles away in North Platte, NE. I live near Seattle.

    • Cort Johnson

      April 30, 2018 at 11:40 pm - Reply

      I’m seeing treatment. It makes sense to me that if you remove or stop those transcription factors which put the autoimmunity in motion then the system can potentially return to normal and heal.

      It will take time. The good news is that if these researchers are correct and this process basically causes MS, lupus and others there will be enormous interest in validating it and finding drugs to fix the problem.

      The lead researcher has 500 papers under his belt and he said this one is more important than all the others put together. That really says something.

      • Maschelle

        May 1, 2018 at 7:54 am - Reply

        At first I was crestfallen thinking it was only talking about prevention, then realize that they were also talking about reversal. Something that’s really ironic came to me this evening that I had forgotten. when I was trying to explain how I felt to my doctor who just could not grasp any other explanation I thought this feels like when I had Mono all the time. I broke out with it three times in my late adolescence. and the doctor got a look on his face that was nothing short of relief and recognition that he found something he could understand.

        Since I have both the herpes virus and the infectious mono which they told me was chronic infectious mononucleosis decades ago, I kind of feel after this study is any indication I was definitely set up to get something autoimmune and nature. I had a positive antinuclear antibody test initially upon becoming ill with myalgic encephalomyelitis AKA chronic fatigue syndrome. sorry about the use of a rather long actual illness names. I’m using speech to text because of severe muscle cramps in my right upper body that are preventing me from typing . Speech to text just will not type the shortened title. Point is is there anything out there statistically about how many Emmy CFS patients initially had positive Ana tests that later return to normal but the patient is still becoming more ill?

        Forgive the typos. It’s speech to text that’s causing it. Now my eye is killing me. this is a really interesting study. almost every family member on my father’s side has rheumatoid arthritis. the majority are severely crippled. One great aunt of mine has her chest absolutely deformed and is bedridden. She’s so Twisted physically. it would be nice to have some answers about these diseases as well as the one that we are all suffering from.

        • Cort Johnson

          May 1, 2018 at 3:15 pm - Reply

          Wow… Lot of autoimmune diseases in your family and look at the trouble you’ve had with IM and RA is one of the diseases implicated in the findings. Definitely keep an eye open for more on this research.

  • Linda

    April 30, 2018 at 8:56 pm - Reply

    A rheumatologist I saw who

  • BB

    April 30, 2018 at 10:21 pm - Reply

    its funny i was just asked about this yesterday from a woman who thought i had EBV and i said no, thats how it (CFS/ME) started. that’s how the acute stage started with a sudden impact. My neighbors had the EBV and I contracted it and it immediatley went into CFS/ME. I was diagnosed early. This is what happened to me-but truly i was always having episodes of the exhausted incoming slow the f down “red crash zone” as I know it now, after having CFS for almost 18 years. It truly started for me I do believe, after getting a giant batch of overseas shots by the military. I immediately ended up in the emergency room and was never the same again. The tired flu phase would appear for days following any hard work like moving or serious labor. it got more pronounced during difficult years as a single mother and then wham, the EBV they had it and I got CFS/ME. I dont know what was in those shots but I was toldI would also test positive for Hep B afterwards too- as they were full of antibodies and god knows what. It’s as if the mixture allowed me to be genetically ticked on by something in it and the virus plugged in and had it’s way w me. my theory. lots of time on my back to think about it. lol. ps Cort is amazing thankyou for all your hard work. its hard work to think and have it come out right. best to all, BB

    • Eileen

      May 1, 2018 at 4:53 am - Reply

      I too got ME after I got the Hep B shot back in 1990 when I was 30. I was able to live with the ME up until I got a rare autoimmune disease (Adult Onset Stills Disease) in 2009, and then my ME kicked into full blown illness. I also was prescribed Cipro (deadly antibiotic for anyone with a weak immune system) a few times between 2009 and 2015. I also believe that antibiotic contributed to the ramped up ME that has now totally disabled me most days. It is interesting how similar Gulf War Syndrome and ME and “floxing” are.

    • Laura

      May 1, 2018 at 11:07 am - Reply

      Like you BB, I’ve always considered the cocktail of immunisations I was given, in order to obtain a US green card, instrumental on the onslaught of MS. The nurse had said to me at the time, that I may not feel so good for a few days…it wasn’t just a few days; I never felt the same again.

      Three months after I was given the numerous immunisation shots on the same day, I became completely numb from the waist down with suspected MS which was confirmed as definitely being MS six months later.

      I firmly believe whatever was in those injections caused my immune system to alter into the MS state and no one will convince me otherwise.

      I’ve often wondered how many others had immunisations prior to their illness; be it MS/ME/CFS…

      • BB

        May 1, 2018 at 6:01 pm - Reply

        YES no one can convince me any different- that it wasnt the main factor here in my health. I was
        a new young wife of 23 getting ready to move to Asia w my new husband. They gave me what they gave the active duty milistary that went there. it was in California, Feb.1984 There w were 2 gun syringe’s full of some cocktail and several days apart, which made me the sickest I’d ever been in my life. I ended up with a severe sinus infection and some horrible flu for several weeks. The “flu” would appear more and more as I got into my 30’s and life was very stressful, and i realized in hindsight that those were small crashes- harbinger of the upcoming wham that happened in Aug of 2001 when it went into CFS. EVERY same thing that Jennifer Brea talks about for the layperson to understand. Basically cant follow all the blogs etc too much for my brain. But i have my own CFS diary/log and med records to prove the syptomss and etc.

        I’ve been in and out of the acute stage which for me lasts 2-3 years. it reoccurred in 2007-2009 after a move. I’m chronically dealing with it every day as if I have a flu that never gets better. I also was diagnosed w FM in 2008.

        since we r taking about EBV virus….i’ll add that on top of that i’ve contracted herpetic whitlow-diagnosed… from a friends computer keyboard and mouse while she was having an outbreak of undiagnosed g/herpes and she thought it was shingles, and she needed help so of course I helped to the best of my ability that day. I’m vigilant about contact w others knowing i could catch a cold etc. I dont get cold sores nor have gen herpes. I must have had a cut on my finger or something- but it’s highly infectious (herp whitlow is ) shortly after that (I have photos) and i’m pretty isolated here so I know what and where my hands have been doing, lol… it’s been 3.5 years of pain like bee stings, glass cuts and zits on my finger tips and boxes of band-aids as it comes w stress- 3 outbreaks in the past 4 months that last for weeks each. and has now this year appeared on my toes too omg!! painful and so frustraing. this is rare on toes but my ability to withstand? the herpes virus is obviously comprimised somehow. I’ve been on valcyclovir for outbreaks which makes me so much moire exhaousted it’s just killing me. they also gave me a few weeks of valtrex when i was first diagnosed w cfs in 2001-but nothing happened I stayed exteremely extremely sick. they said 1 to 3 years maybe i must stay in bed. haha. sigh.

        • Ladybird

          May 2, 2018 at 3:34 pm - Reply

          I do not for one minute think vaccinations have any causal relationship with ME or many other illnesses for which they are demonised (e.g. autism). Several of the illnesses that people in this thread attribute to vaccinations were simply coincidences. You don’t get MS from vacs. You can’t get autism from vacs, you don;t get flu from the flu vac. I could go on. Vacs have saved countless millions of lives and will go on doing so. Yes, there is a very small risk, and people get incredibly vexed about this – then they get in a car and drive without a thought. We really need to work on our perspectives on risk especially when it comes to vacs.

  • konijn

    April 30, 2018 at 11:11 pm - Reply

    offcourse, every research is welcome and has it values. the more we know, the better!

  • Maschelle

    April 30, 2018 at 11:55 pm - Reply

    I have had Mononucleosis and relapses 3 times in my teen years. I also had the non-std form of herpes.. All over my mouth, inside and out, with lesions going down my throat and probably my esophagus and into my stomach according to doctors in ’77. I was taken out of PE and banned from continuing to particupate in Inter-Schoolastic sports at the age of 14 because of the heavy toll these viral infections had taken on my body.
    And I had mono relapses at 15 and 17. At 14 is when I began to have trouble with honors calculus and was dropped by the instructor! My mathematics instruction stopped there. I went years being unable to gain weight. Then in college I got a bad, bad viral infection that left me with a terrible cough after the fever broke. Then something extremely frightening and profound happened to me. by the time this event. was 5’7″ and I weighed 87 lbs at one point… and was hospitalized.. Here’s what happened. I was too weak to get to the phone in my own dorm room at college and call for help. When they found me I had lost 10 lbs and was dehydrated and malnourished as well as too weak to even crawl.. I miss having terrible adrenaline rushes that were causing panic attacks for the first time in my life. and I was just flunking out of college because I couldn’t grasp what they were teaching. And I got through Junior High with only one B grade. And that was after the initial mono infection. I graduated top 10% of my class from high school. But I couldn’t seem to stay well long enough to work and keep a job. I was constantly having to call in sick. I always got good jobs and I always lost those jobs because I got confused and it affected my work as well as my irritable bowel. In college that hospital doctor said that he didn’t know what was wrong with me. that I didn’t have a virus and I didn’t have a bacterial infection. then he noted that I had developed very strong emotions after coming to college per my parents. and he said perhaps we are seeing the emergence of an hysterical personality. I went through all that just so you guys can see the word “hysterical”. Isn’t that what ME/CFS was being called by the FDA? Hysteria? I have really thought it would be interesting if the things that happened to me before the CFS was ever more than a Theory and an actual connection could be made between these horrible devastating short-term viruses did to me and the fact that I never totally recovered from the very first one.

  • Tamesin

    May 1, 2018 at 12:29 am - Reply

    I am hopeful that this will help many of us,and soon! I, however, do not test positive for EBV (yet– knock wood I don’t get it at this stage of my life). Yet I completely meet, and have for decades, the Canadian and International Criteria for ME, and then some. As many have said, this illness may actually be many illnesses or subcategories of illness within the current diagnosis, when it comes down to it.

  • TK

    May 1, 2018 at 1:09 am - Reply

    If CFS was a viral or autoimmune disease, we would’ve found a marker long time ago. So I would dismiss that possibility out of hands. The virus triggering diseases via genetic change is an interesting possibility though. But there are paths to CFS that doesn’t involve virus at all, so the EBV triggering CFS by changing the genetics is also a remote possibility.

  • Erik Johnson

    May 1, 2018 at 2:36 am - Reply

    Byron Hyde. M.D.

    The Lake Tahoe Epidemic

    The Lake Tahoe epidemic that started in August 1984 also started amongst students. In this case the epidemic began in a high school girls’ basketball team that was travelling in a bus to play various other teams. The epidemic spread rapidly with an incubation period of approximately a week. As in many of the other epidemics, it then spread to the general community. After the epidemic started it then involved three high schools, both students and teachers and ultimately spread to the community. For some reason it was considered to be an epidemic of infectious mononucleosis. This is an illness caused by a virus Epstein Barr Syndrome. Associating the Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous and you will see why almost immediately.
    Dr Paul Cheney and Dr Daniel Peterson were inundated by the number of rapidly developing cases of seriously ill patients and called the Centre for Disease Control (CDC) in Atlanta for back up.

    First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections
    Fast-forward to April 1987 and the First International Symposium on Immunology and Pathogenesis of Persistent Virus Infections held in Atlanta Georgia. This was a symposium hosted by the CDC and Dr Carlos Lopez. At this meeting Dr Gary Holmes gave out his new paper, “A cluster of patients with a chronic mononucleosis-like syndrome,” that had just been published in JAMA. (See Holmes, Kaplan, Stewart et al: JAMA 1987:287:2297-2302)
    The publication essentially stated that Epstein Barr Virus was not the apparent cause of this illness in the 130 patients from which they took blood samples. But they weren’t sure and suggested that further study be done.

    Epstein Barr Virus (EBV)
    Now anyone who realizes that infectious mononucleosis is caused by the herpes family virus, Epstein Barr Virus (EBV), and that the incubation period of this illness is approximately 40 days, should have realized that you simply cannot have a rapidly spreading viral epidemic with a virus with a latent period of 40 days.
    Neither Dr Straus nor Dr Holmes, senior government physicians, should have fallen into such a trap. They only had to go to the excellent CDC library to realize that rather than spending half a million dollars or so on a publication that they should have known would not have incriminated EBV.
    Yet this epidemic somehow spread the myth that this illness was caused by EBV. Today, as I write this short history of M.E. and CFS the vast majority of physicians and the public still associate Epstein Barr Virus with CFS.
    Such is the perseverance of error.

    • dejurgen

      May 1, 2018 at 12:02 pm - Reply

      Hi Erik,

      As one of our best mold warriors you might be interested in this hypothetical link I found between EBV, mold and ME/CFS:

      * According to https://en.wikipedia.org/wiki/Epstein–Barr_virus_nuclear_antigen_2 : “EBNA2 also interacts with the human homolog of the yeast transcription factor (SNF5 hSNF5/Ini1) as it coelutes with both hSNF5/Ini1 and BRG1.[7] BRG1 is a human homolog of SWI/SNF2.[2] However, this interaction is restricted to a subpopulation of phosphorylated viral EBNA2.”
      => a “human homolog of a yeast transcription factor” sounds like something that *might* help mold replicate or create havoc. Mold and yeast are related yet not the same.
      * It is estimated that roughly 80% of adults carry EBV in their body. Most had it at a young age when it causes most often only minor damage. Probably that translates into lower numbers of infected cells but they still should have EBV infected cells.
      * There are quite a number of EBV strains (did I read somewhere 60+?). As the name Incline Village suggest the place is probably small. One gets EBV through contact with saliva. In a village or less dense populated area (is Lake Tahoe densly populated or not?) a single strain may be dominant.
      * In wet areas there may be quite a lot mold variants. If a bad mold variant became abundant due to seasonal or exceptional weather and happened to meet with a population where over half the people had the same EBV variant in their body then it could cause an epidemic-like-outbrake of ME/CFS if that EBV variant happened to interfere with mold stronger then other EBV variants.
      * The 40 day incubation period of EBV could be of no importance: if mold would interfere with this theoretical EBV variant and there was plenty of this 1 sort of mold interfering with it, then it could set of a initial mold infection (IMO a yeast transcription factor could help replicate yeast and maybe mold fast in the body, guts feeling). That’d be enough to make one sick and/or cause EBV reactivation as EBV happens to reactivate so much more easy when the immune system/body is under heavy pressure.
      * As EBV resides mostly in B-cells and epithelial cells it could effect people who had EBV at a young age faster then expected. If a sort of mold that interact with EBV infected the body, then B-cells would search out the mold particles. This would increase the concentration of EBV-infected B-cells around the mold into a far higher concentration then then body-wide average and effectively speed up dynamics quite a lot. If yeast in turn would multiply faster around those infected B-cells then potentially those infected B-cells would happen to out-multiply the non-infected B-cells. The bigger the threat, the faster the cells need to replicate. Having more mold around an EBV-infected B-cells is a bigger threat. Even if the difference in ratio in multiplication was relatively small, having many generations of both non-infected and infected B-cells proceeding each other quickly due to the mold infection could shift the ratio of EBV-infected versus non-infected B-cells quickly. Even without reactivation this could become problematic as EBV does not need to be active according to the research in this blog.

      As said: it’s hypothetical. The biggest unknown is IMO: were there both a strain that could interact with a particular mold and this mold available in the Lake Tahoe Epidemic? If so, collecting the dominant EBV-strains in the region and mixing them with a collection of all available molds and yeasts in the region may be a interesting lab experiment.

      • Cort Johnson

        May 1, 2018 at 3:08 pm - Reply

        How interesting that there are so many strains of EBV – some of which are undoubtedly more virulent than others. I imagine that its possible to tell which strain a person is infected with. Wouldn’t it be something if a some strains were more commonly found in ME/CFS than in the healthy population?

        • dejurgen

          May 1, 2018 at 7:54 pm - Reply

          Reading your blog, I learned that EBV not only infects B-cells but also epithelial cells. That was an immediate wow moment. Just had to check a few facts first.

          EBV is extremely successful as a virus. That requires some “smartness”. Maybe in order to catch a virus one has to “think” as a virus I thought. I know they can’t think but they can evolve to do smart things in order to spread their genes. So what smart strategy could make their goal, spreading their genes, more successful?
          * They could produce a massive amount of virons like most viruses do. That has it’s limits. Far too often either the host dies before transmitting the virus (e.g. Ebola) or the virus must jump from host to host (e.g. common cold) as the host clears the infection.
          * EBV seems to be able to avoid quick host dead and being cleared out by the immune system. That’s a successful start, but more can be done.
          * After going dormant, make sure the host cell has longevity. Most B-cells are killed after some shortish time if they don’t convert to successful memory cells. After going dormant EBV infected B-cells set the “I am a memory cell flag”. I found more scientific sources on this, but https://www.sciencedaily.com/releases/2017/05/170502204538.htm is more readable and summarizes it well: “From within, the virus manages to ramp up the B-cell’s reproduction of itself, while at the same time helping the cell resist its own self-destruct signals.”
          * Still, more can be done. According to https://en.wikipedia.org/wiki/Epstein-Barr_virus “In vitro, latent EBV in B cells can be reactivated by stimulating the B cell receptor, so reactivation in vivo probably takes place when latently infected B cells respond to unrelated infections.” That’s a double whammy. Reactivated EBV cells are faster at spreading themselves then latent ones. But active EBV cells are far less invulnerable to the immune system. Doing so when they get the signal that the immune system is preoccupied fighting another infection means that the replicating cell has good chances of survival and that the replicas have good chances to slip through. Smart trick.
          * Another trick could be suppressing the competition. EBNA-2 acts on PU.1 https://en.wikipedia.org/wiki/Epstein-Barr_virus_nuclear_antigen_2 and https://en.wikipedia.org/wiki/Spi-1_(PU.1)_5'_UTR_regulatory_element : “Spi-1 regulates myeloid gene expression during haemopoietic development. Mutations in this regulatory region of the 5′ UTR can lead to overexpression of Spi-1 which has been linked to development of leukaemia.” So EBNA-2 could either decrease the renewal of competing immune cells or conversely increase the generation of EBV-infected B-cells from infected bone-marrow.
          * Why stop there? Successful B-cells get copied including their viral DNA. This copying should be quicker during infection IMO. So while you’re able to convince the body that you are a successful memory cell, why not try and trigger an infection? I got this idea because I learned today that epithelial cells are another major target of EBV. A good disruption of the blood flow might give an opportunistic infection other then EBV a good kickstart to allow EBV infected B-cells to replicate and to reactivate at the same time. Just let blood epithelial cells malfunction (poor vassodilation and constriction) could be a good start. Would be a mighty trick. It seems able to (see below).
          * So digging deeper in https://en.wikipedia.org/wiki/Epstein-Barr_virus I found that two cell types can contain EBV in latent form: B-cells and epithelial cells. It shouldn’t be that hard to learn to respond sluggish or plain wrong to dillation or constriction signals.
          * But hey, why not let B-cells increase immune activity why were at it? https://www.researchgate.net/publication/50364461_The_Epstein-Barr_virus_nuclear_antigen-1_promotes_telomere_dysfunction_via_induction_of_oxidative_stress “The Epstein-Barr virus (EBV) nuclear antigen (EBNA)-1 promotes the accumulation of chromosomal aberrations in malignant B cells by inducing oxidative stress.” Peroxide, a major part of oxidative stress, is also a signal molecule signaling for both immune system and cell danger. Good to get the immune system activated and get the B-cells with virus copied. Good also to signal the surrounding cells to produce peroxide too and hope it tricks some of them to go in CDR. That generates even more peroxide and copious amounts of it in the bloodstream kill NO on a massive scale. That should lead to way too much vassoconstriction and blood flow disruption.
          * Now if those EBV infected blood vessel epithelial cells would also be easily triggered to produce extra peroxide or go in CDR then we might get a daily party of blood flow disruption, hypoxia and poor opportunistic pathogen fighting while blood flow is disrupted followed by a strong immune response to clean up the mess of combined hypoxia and opportunistic pathogens, then EBV could multiply and reactivate almost at will. Now EBNA-1 just does this: “https://www.researchgate.net/publication/50364461_The_Epstein-Barr_virus_nuclear_antigen-1_promotes_telomere_dysfunction_via_induction_of_oxidative_stress”. I can’t get the link good nor see the text. I saw it by using search site Duckduckgo searching for “ebna-1epithelial cell oxidative stress”
          * Best of all: contrary to uncontrolled multiplication that could kill the host too quickly or lead to quick cancer development, B-cell multiplication is moderated to a large extend by the body. So once EBV has a good grip on many B-cells it’s multiplication is slowed down (the body sets a target amount of B-cells and adapts replication signals to it) likely decreasing it’s effect on both cancer development or auto-immunity (compared to some other viruses causing these diseases). Unfortunately some will be unlucky, but most hosts will live a normal live never noticing any effects of EBV.

          The whole interaction between blood flow, immune system, oxidative stress, infection, inflammation… does not need EBV. I described something like that before. But if EBV worked remotely close to anything I described above it would lower the threshold to get down with ME/CFS (or lupus, MS…) a lot. Conversely, having had EBV at a later age does not lead to any of those nasties. It’s about odds increasing in this idea.

  • Sipora

    May 1, 2018 at 2:38 am - Reply

    So they say EBV triggers a gene but then goes dormant. So it’s not what’s keeping us ill…maybe a back feedback loop in brain? Cue Cortene/ brain retraining?

    • Cort Johnson

      May 1, 2018 at 2:58 pm - Reply

      If I have it right even when EBV is latent – at least in some stages of its latency – the process described in this paper is occurring.

    • Cort Johnson

      May 1, 2018 at 3:17 pm - Reply

      My understanding is that the virus is “latent”; i.e. it’s not reactivating but that EBNA2 is still active.

  • Diane

    May 1, 2018 at 4:05 am - Reply

    I remember that I was tested for EBV, at least after a decade of CFS, and the doctor reported with a stunned look on her face that I had tested positively for EBV titers and that they were “recent”. So, I’ve always thought that my flare-ups were caused by EBV reactivation.

    • Cort Johnson

      May 1, 2018 at 3:16 pm - Reply

      Loebel’s work suggests that ME/CFS patients may have trouble keeping EBV under control.

  • Wayne Brissett

    May 1, 2018 at 5:11 am - Reply

    I am 100% sure that my an acute case of EBV caused my M.E. Not a shadow of a doubt. The EBV has also reactivated twice in the 23 years I have had M.E. Clearly there is an issue with the immune system keeping the virus dormant.
    * If anyone is interested, Professor Pender of QLD Australia has been researching for many years how EBV causes M.S. Wouldn’t it be wonderful if everyone working on these individual research projects could put their heads together to end these autoimmune diseases caused by EBV once and for all?

  • Lisa

    May 1, 2018 at 11:08 am - Reply

    From what I read Rituximab causes depletion of B-cells. In some ME patients it led to a substantial though delayed improvement before a relapse many months later. Could it be that EBV plays a role in that surprising reaction to Rituximab? if so, would a combination of Rituximab and antiviral work for a subset of ME patients?

    • Cort Johnson

      May 1, 2018 at 3:11 pm - Reply

      My guess would be yes….it sounds like you would be getting rid of the EBV infected cells which are triggering autoimmune reactions…

  • Lucia

    May 1, 2018 at 11:59 am - Reply

    I have the ME/CFS but I don’t have the EBV, I have the Herpes Zoster Virus. I know that is the same family of viruses (herpes virus) is anybody researching in it? Thanks.

    • Cort Johnson

      May 1, 2018 at 3:10 pm - Reply

      That’s a great question. Because all these herpes viruses lie dormant in the body it’s possible I guess that the same process is occurring in them. I imagine that herpes virus researchers are already starting to look to see if that’s occurring.

  • PAUL

    May 1, 2018 at 12:58 pm - Reply

    EBV vaccine are you joking?

    Vaccines kill and maim. Many people got CFS after a vaccine.

    • Cort Johnson

      May 1, 2018 at 3:06 pm - Reply

      A). The vaccine would be for people who don’t have ME/CFS.
      B) Yes some people have bad reactions to vaccines but hundreds of millions have been saved by them. On a cost/benefit analysis vaccinations come out way ahead.

    • Ladybird

      May 2, 2018 at 3:41 pm - Reply

      No, they didn’t. Or if you have reputable sources, please post them.

  • Jill Croslow

    May 1, 2018 at 2:14 pm - Reply

    This is very exciting and interesting. I’m so glad that this is being studied more. I was 21 when I came down with Mono. I was starting my second semester of my junior year. I did not drop out I kept going only missing one week of classes. I suffered through it and I felt like I never fully recovered because of it. My question is if I could have passed on that virus to my baby daughter whom I had 2 1/2 years later? I now have CFS. She was diagnosed at 20 with lupus. With her lupus fatigue is a major concern. My brother has lupus but rarely gets the fatigue. Also the majority of my 14 cousins and even aunts and uncles all have auto-immune issues stemming from my paternal grandmothers side. Is this unusual? Almost all of us have been struck with some kind of autoimmune disease. Thank you for your time.

    • Cort Johnson

      May 1, 2018 at 3:05 pm - Reply

      Actually the hope is that you did pass it on to her early as infants are able to usually easily fight off the virus. These researchers, though, believe that EBV is probably largely responsible for lupus. Whether it was you or somebody the virus is all around so who did passed it on is kind of immaterial; we’re almost all going to be exposed to it and the best time to be exposed is early.

      If I had kids I would seriously think of a way to get them exposed as early as possible.

      I hope your extended family can get into a study someday. I imagine there’s a gold mine of genetic information sitting in your genes.

  • Linda Reed

    May 1, 2018 at 2:56 pm - Reply

    Apologies in advance for any jumbled thoughts. In the midst of worst flare of my 27 year saga with CFS. Language processing better written, but still very low. Spring 1991; diagnosed with Mono, age 42. That late fall, early winter, a return to same symptom, heavy inescapable fatigue, with added dollop of extreme joint/muscle pain, cognitive malfunctions. Insightful doctor recognized symptoms and diagnosed CFS. Being a Type A, battery pack-type over-achiever, I was deeply upset at the name. Luckily, I had a long relationship with the doctor, and respected him. “You’ll either recover in 6 weeks, 6 months, or not at all…” Well, it’s not at all.

    Ebb and flow during these years is slowly regaining functionality, then during extended high stress
    periods (AKA – LIFE) a heavy relapse. This is the longest time period for a flare with very little progress. No amount of self-discipline, focus, will power, prayers brings relief. Tincture of time, and articles like these, though difficult to assimilate at times, keeps me hopeful.

    You asked years ago in one of your blogs Cort, “what would you do if you woke up and you were cured”…my reaction? From a life-long Pollyannish, glass half full kind of person, my reaction was
    I WOULDN’T BELIEVE IT. I do return to hope again, following the many exemplary articles you write Cort. In a year of many deaths, friends, family, and those you have publicly chronicled I ultimately return to a message on a rock I keep close by. Its inscribed with “Begin Again”…and I am, and I do. Soul weariness begins to retreat. Its spring…

    This just may be the only way I can contribute. The blog I promised is in the far distant future. t I answer all questionnaires, pass on your articles to open doctors. The answers are coming; we just have to persist and pray that others never experience the level of suffering we do. As well, a sense of humor at times brings a brief light…asking, each day, what will it bring? No control over that, but like gas, it too will pass.

    Kudos, kudos, kudos Cort, and bless you…

    • Cort Johnson

      May 1, 2018 at 3:01 pm - Reply

      I owe you a call Linda :)…

      Begin again, again, again, again, again, again. Exactly….Like Sisyphus rolling that rock up the hill. Begin again – great mantra!

      Do you know if age 42 was your first exposure to EBV? It seems the later the infection occurs the harder it is to deal with.

      • Vee

        May 2, 2018 at 8:41 am - Reply

        Hello Cort,

        I’m very new to this communication – not the illness, but I’m way behind all of you in terms of your collective knowledge. I had a horrible bout of flu in Aug/ September 1997 and was never the same. However, when I was pregnant in 99 I thought the thing had gone. I told the doctors this but they didn’t appear to be particularly interested – what’s new. Would you mind giving this to me in idiot speak … ie; what is EBV is it epstein barr? If it is I believe I was tested for that.

        I was told I had bipolar syndrome and perfectionist tendencies. No, wrong. This was the happiest time of my life but I just didn’t have the energy to enjoy it!

        • Cort Johnson

          May 2, 2018 at 3:19 pm - Reply

          Yes EBV is Epstein-Barr Virus. Because most people have been exposed to it and are fine most doctors are not interested in it. Some people who get exposed later in life, though, have real troubles with it.

    • Kristina

      May 3, 2018 at 6:32 pm - Reply

      Linda – you should try to contact The Medical Medium.

    • Fingers

      May 3, 2018 at 8:28 pm - Reply

      Cort Johnson has been milking this case for years…what has been achieved?
      Absolutely fucking zero, zilcch, nichts, nada.
      Over to you Mr.Johnson

  • John

    May 1, 2018 at 3:14 pm - Reply

    Was told by my doctor way back in 1991 that I probably had CFS and that it was thought to be caused by EBV. He followed by saying there is no CFS treatment, so there was no point in actually making the diagnosis.

    It took another 24 years to officially get diagnosed with ME/CFS.

  • LH

    May 1, 2018 at 4:59 pm - Reply

    What a wid goose chase. How undeserving some researchers really are. Forget EBV.
    I have been on viread+isentress+kaletra for the past 5 years. WAKE UP PEOPLE.
    NOBODY HAS THE BALLS (or money in legal fees) TO AFFRONT JOHN COFFIN, TONY FAUCI NIH, HAROLD VARMUS NCI for the set-up they etched out to screw over Ruscetti & Mikovits in 2012. NIH and NCI (Fauci’s+Varmus’s staff) were inviting in Wessely, Sharpe et al to talk at CFS meetings in the 90s. What a total mess ! They ‘sent’ Coffin to London to sharpen the XMRV tests in 2009 !!! Sharpened them pretty bluntly to set the standard that multiple teams worldwide botched up on too pinning it to one strain with KCL UCL ICL MRC all botching up mega time, and then other teams botched up too just the same way !! As if you define a virus by one test and one strain !!! Set-up. You dont monopolise one strain of one virus in testing for it. That would be a first in virology. Yet they did it and believed Coffin ! You test in multiple ways !!!
    We see it. Game is up. Who’s gonna get it?? Probably John Coffin and Ian Lipkin and Fauci and Varmus all pointing the gun at each other, hand delivered by Wessely n Sharpe !!!!
    How let down patients really have been. Really vile to see researchers giving people DASHED hopes with dancing cytokines n chemokines with rituximab that was so Lipkin inspired !! And Montoya going with ritalin+vitamins now when he knows all very well there is a RV !!!! Sad thing in US science is you always bow down to authority and prestige of certain positions..and never question it !! Very dangerous.
    Anyone has real ME then get REAL treatments by way of viread+isentress+kaletra, and stop this lunacy once n for all. Force it. Watch them drop on their damn faces once n for all.
    IT IS OVER.
    The patients WON.
    And they WON cos Mikovits WON. Lots of people let her down AND THEY KNOW WHO THEY ARE, from Reno n Peterson n Whittemore to Katmandou.
    END OF STORY
    Truth hurts,right? It only hurts the bad people though. All we ever WANTED WAS THE TRUTH.
    All these people ever wanted was to make money out of us. Research dollars !!!!!
    Well – AIM HIGH and hit BIG now. Take out the RETROVIRUS, and you take down the other viruses. END OF STORY.

  • Linda

    May 1, 2018 at 5:53 pm - Reply

    So much exposure during my long life. So many relocations from rural to metro, thankfully back to rural. So many tests and dx. Reversed dx. So much pollution and byproducts literally forced down our organic throats. I have brain lesions and apparently some damage. So fatigued, dizzy, strange 10+, ER worthy pain. Ebv twice, polio exposure, you name it. So much to consider and examine. Docs saying I am hysterical, need therapy to learn mind over matter and exercise counseling program. Right now I just control what I can which is my immediate environment. No plastics, only fresh food, no preservatives, very little to no processed food. Stay in bed when I have to and seldom leave the house. Praying for the remission I used to get. So yes I say the damage is done and in my lifetime I don’t expect to see a treatment. Oh did I mention my nonexistent temp comfort zone. Lack of sleep. No social life. I push myself to the limit daily. Are physicians required to have annual hours of continuing education. Most careers require this.

    • Frog

      May 2, 2018 at 4:31 am - Reply

      Such is life for many of us, I feel your pain and your fatigue too.

  • Fingers

    May 1, 2018 at 9:00 pm - Reply

    Why would autoimmune concept even exist? Oh so you wake up one day and your body goes, tell you what I think I’ll start attacking myself today…just for a fucking laugh. Oh man, how smart is that thinking.
    Whatever was wrong with viral theories of illness? Rtroviruses, herpes…
    Fucking useless researchers hampered by psychiatrists trying to feather their own nests.
    People, only way forward is to take it into your own hands, get antiretroviral drugs, get better.
    Cort Johnson, what’s your view on all of this shit then which is just going on forever and you are milking it…?

    • Cort Johnson

      May 2, 2018 at 3:23 pm - Reply

      🙂

      Antiretroviral drugs do work for some ME/CFS patients – I know of someone who tried everything and they worked great for her until she couldn’t handle them anymore. They are hard to get, though, and they probably don’t work for many others. We are a diverse group!

      • fingers

        May 2, 2018 at 4:36 pm - Reply

        ARV’s are not difficult to obtain, and the ones where patents have expired are relatively cheap. The modern ones are much lower in side-effects. Just as with antibiotics, if certain ones can’t be tolerated (although of course I’m not talking an allergic reaction as with AB’s), others can be tried. This has all been worked through over many years with HIV/AIDS patients. It’s time someone carried out at least a pilot study to investigate this. Any views on why this isn’t happening when many, myself included, are having great results without side effects?

  • LH

    May 2, 2018 at 4:37 pm - Reply

    They work for the REAL ME patients.
    For the one fifth diagnosed with it who really have it.
    The other four fifths of the diagnosed just do not have it.
    I do five days on two days off to reduce side effects. Very manageable actually. And just need to switch or add molecules to fine tune it. Patients need access to xmrv/mlv viral load & antibody testing and antiretroviral experts who know about tritherapy. Viread+Isentress+Kaletra in my case. 5 days on, 2 days off now. There are more modern ARVs also. Requires expertise.
    Varmus+Coffin+Fauci+Lipkin+Wessely+Sharpe+White will all be pointing the gun at each other.
    What a fabulous situation we are in !!!!!!! Faaaaaabulous !

    Francis Ruscetti & Judy Mikovits WERE RIGHT.
    Varmus deployed his boy Coffin to control the many negative studies.
    Fauci deployed his boy Lipkin to screw us all over too.

    Well now.

    Game ON.

    The 5 million PACE study also meant that the Lipkin study had to be negative. The kind of study that Lipkin hopes never to be involved in ever again he said! NIH NIAID have been colluding with the UK psychs since the 90s! Varmus n Fauci n Coffin dont want CFS. They dont want XMRV either. All they want are drugs n vaccines. But those drugs n vaccines CARRY XMRV/MLV…

    F A N T A S T I C M E S S

    • JES

      May 2, 2018 at 8:07 pm - Reply

      Nice rambling, now do you have some references to actual scientific papers supporting your wild assertions that XMRV is the only cause of CFS/ME?

  • Lauren Gordon

    May 3, 2018 at 4:17 am - Reply

    Thanks for this article Cort. Its great that the Cinncinnati team is providing its computer code free to other researchers. Will you be able to do follow-ups on which researchers pick these findings up – especially in the ME/CFS arena – and use them for their own research? What about Ron Davis at Stanford? My teenage son had mono before coming down with ME/CFS. It’s heartening to hear of breakthroughs, but disheartening that it all seems to take so long! I was interested to see juvenile arthritis mentioned, as one of my son’s cousins has JA.

    • Fingers

      May 3, 2018 at 8:22 pm - Reply

      Yes it takes so long…because they are on the long wrong track and many want it t take so fucking long!
      JM already cracked it. Wake up people…smell the fucking ARVs

      • Lauren Gordon

        May 4, 2018 at 12:55 am - Reply

        Hi and thanks for the info. Do you have info on which antivirals work? And studies re the XMRV? I thought that Dr Montoya at Stanford did a lot with antivirals and found that for some ME/CFS patients they really help, but for others not so much?

  • LH

    May 3, 2018 at 4:58 am - Reply

    Wild goose chase.
    Davis won’t achieve anything.
    It is a RETROVIRUS.
    If anyone wants to get better they should just contact Judy Mikovits.

    • Kristina

      May 3, 2018 at 6:33 pm - Reply

      Who is Judy Mikovits please?

      • Fingers

        May 3, 2018 at 8:14 pm - Reply

        She da woman

  • NICK

    May 3, 2018 at 7:39 am - Reply

    I have chronic EBV confirmed by blood test….8 days ago started taking 3gms of Lysine and 6gms of vitamin C daily as “Power health” studies showed how lysine was effective. After taking more than 100 supplements over 3 years with little benefit I will say I feel a little better even after just 8 days on high dose lysine

    • Fingers

      May 3, 2018 at 8:21 pm - Reply

      Only treating secondary infection and symptoms if you have a retrovirus..get to the root cause

  • DL

    May 3, 2018 at 1:54 pm - Reply

    Not everyone with ME/CFS has or ever had EBV. In fact, when I was first diagnosed with CFIDS decades ago (80s), I had no signs of every being exposed to EBV nor numerous other infections that most people have had. It wasn’t until I became severely ill & disabled that I stated testing positive for exposure to anything, and I had 5 active infections when ME finally took me down to the point where I wasn’t able to go into ME remission, as I had always been able to do in the past. I may have gotten tbese viruses from a vaccine, as it was a blood product vaccine and none of the infections I had are routinely screened, in fact very few are. Of course testing negative for anything all of those years just made things harder on tbe doctors to try to figure out why I was sick. Were it not for an MD who was an early believer as his wife was a PWC, I would have ended up just like many who are passed around, ignored, abused by MDs. I did go through that, but a fraction of what others have had to endure. It was terrifying though…to have bloodwork that seemed ok, test negative for so many illnesses, yet to be so sick. Presently I have 3 of the 5 infections active as well as testing positive for 4 mycotoxins. And to think that had I not found a decent medical team I’d still be told I was fine and dismissed by the avg. PCP, it’s infuriating, but at least now, the regular tests prove how sick I am, not just the intensive immune panels (that only we human research subjects seem to have access to.) When are the other labs going to get with the program so more sick people can get a diagnosis? It’s depressing knowing how the neglect is still here, but especially for people who never had these infections before. Still my point is you can have ME and not have EBV nor other infections.

    • Fingers

      May 3, 2018 at 8:17 pm - Reply

      Ex-fucking-zactly!!!! EBV is a secondary infection to a retrovirus, just as with HIV.
      So blindingly fucking obvious that it causes me to swear a lot…a secondary effect!

  • Nannibel

    May 3, 2018 at 10:25 pm - Reply

    I believe retrovirus’s that are causing EBV to do its damage, as well as other infections,
    originated with the oral polio vaccines given to me in the 50’s and 60’s. My husband and
    I both succumbed by 36 yrs. and unfortunately have passed these virus’s on to our
    children, all of them symptomatic. My husband also received the polio vaccines in childhood.
    He had several bouts of mono, in grade school, high school and again in college. There
    was something going on all along. Why there hasn’t there been any research into the many
    simian (monkey) virus’s that contaminated the polio vaccine?? The simian virus 40 is was
    found to cause cancer! Why couldn’t it cause this disease? That virus was called 40, because
    it was the 40th one they found contaminating the vaccines! Why wouldn’t those virus’s cause
    illness? Why has this been swept under the rug! Noone wants to recognize that those
    vaccines were polluted. They just change the subject and talk how they prevented polio.
    Who knows, we could have damage from the polio virus that was live in the vaccines too!

  • LH

    May 4, 2018 at 5:58 am - Reply

    I refer the right honourably gentlemen and women to my previous two statements.
    Remember : antiRETROvirals, not antivirals.
    HUGE difference.
    Evidence??????? You want evidence??????
    Ha !!!!!!!!!!!!!!!!!! Gallo Nabel Varmus Coffin Fauci Lipkin Wessely Sharpe White burnt it all !
    Get real !!!!!!!!! Evidence !!!!!!!! Hahahahahaha !!!!!
    If you wait for evidence you ll be waiting long !
    But ARVs are out there n available. Mikovits was RIGHT. Very right.
    This should have been taken more seriously.
    The ampligen folk should come out more strongly. They can get even better on ARVs. But they re so dependant on it they dont dare to just yet. They can help join the dots

  • Esther Siebert

    May 6, 2018 at 6:50 am - Reply

    First, I’d like to respond to the rant about ME doctors being “all in it for the money.” I’ve had personal contact with a number of our researchers/clinicians including Dr. Montoya, Dr. Kogelnik, Dr. Jarred Younger, Dr. Peter Rowe, Dr. Lily Chu and know of Dr. Nancy Klimas and Dr. Ron Davis as well as others through their work and advocacy. We have some of the most selfless, dedicated doctors working on our behalf. I certainly understand how frustrated and angry we can become given our circumstances but I won’t allow our wonderful group of altruistic doctors name to be besmirched without responding. Dr. Montoya was told at Stanford Med that he was throwing his career down the toilet when his heart told him to try to help people he saw suffering so much. He is beloved as are many of our doctors.

    I became ill in 1986 after having been in Lake Tahoe the previous year. At that time, it was thought that EBV was the cause so my doctor tested my EBV titers over a period of 10 months. I had a severe active infection with EBV that he followed by my blood work as it resolved. I improved a little after this infection but never got well.

    Someone mentioned above something about the B-cells having something to do with memory. If someone could explain, I’d be most appreciative. It made me wonder if our cognitive problems and brain fogginess could have something to do with EBV in B-cells? I don’t know if this is the same for everyone but my cognitive problems fluctuate along with my physical symptoms. So if I’ve slept well or am having a better day, I find my mind works better too. Thank you, Cort, for your service to our community. Remember to do something on May 12th to make us heard. There are actions available for those of us who are homebound to take.

    • dejurgen

      May 6, 2018 at 10:04 am - Reply

      Our ME doctors often do risk their career, that’s true. As for being in it for the money, doctors do make more money then the average person so one cannot expect them to both risk their career and provide their services for near free. Most ME doctors still do make a lot less money then doctors in the better earning specializations.

      I said something about B-cells and their memory. But it’s that B-cells can have memory on how to fight a certain pathogen. When one for example has got the flu, our immune system does fight it. Along the way B-cells can learn how to better fight this particular flu virus by “remembering what works well against it”. As such, it is said to have developed memory and is called a memory B-cell. These cells are important too in the use of vaccines: vaccines use a small dose of deactivated virus so that some B-cells can learn to better fight those viruses. When you meet the “real” thing your immune system is then better prepared to fight the disease as your body already has specialized B-cells against it.

      Jumping in on the discussion about vaccination: nothing is 100.0000000% harmless. But in general population the advantages on average far outweigh the disadvantages. That said, many people with ME belong to the small group that are more vulnerable to side effects of near everything including vaccinations. After all, vaccinations have the least side effects in people with a healthy immune system. I for example have to pace triple as much after a flu vaccination as it pulls me down a lot. Each year it’s a trade off between risk of falling back due to vaccination and not having vaccination but risk being far worse of if I got the flu itself.

  • LH

    May 6, 2018 at 1:33 pm - Reply

    Montoya bailed out. He knows there is a retrovirus.
    Nobody has the balls to take on the nasties. Including all the doctors you mention above who are wasting time n money n giving people false hope.
    It is a retrovirus.
    The brave patients on ARVs are better.
    We ll bring the nasties down by ourselves.
    We dont bow down or in to anybody.
    I cant believe how you all let yourselves be conned by all this decorative horseshit. Varmus dispatched Coffin to kill xmrv which had a halo effect on multiple negative teams who were all getting reagents from Abbot that Judy never needed or never used cos they were wrongly coded by Silverman.
    Tragic.
    Truth coming.

  • LH

    May 6, 2018 at 5:05 pm - Reply

    What the hell are you all hoping for exactly???????
    Antiretrovirals hit the spot X.
    Believe Mikovits or believe the literature.
    Or keep funding these other pseudo scientists!!! Look at Montoya ! Ritalin n vitamins !!!!!!!! Look at Davis n his FANCY GENES. Hanson n her astute profiling….Hornig et al…. et al… et al….
    This was all nothing more than a stitch up.
    The chain of command killed us all off.
    And they pick up the crumbs n dazzle us !!!!!!
    Wake up people
    Wake up

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