ME/CFS: A new explanation – and cure?

In a recent paper, Dr. Willy Eriksen proposes a complete explanation for the development, diversity, and persistence of myalgic encephalomyelitis, aka chronic fatigue syndrome (ME/CFS). He also suggests a possible cure. Seeing that this potentially groundbreaking research was attracting little attention, I contacted Dr. Eriksen and interviewed him via email. This post contains a summary of his hypothesis, which I’ve tried to present in everyday language.

Other posts contain 1) the interview, which contains considerable new information about his hypothesis, and 2) my understanding of how Eriksen’s model fits with other research—and with my experience.

Eriksen holds an MD and PhD and is a research professor at the Norwegian Institute of Public Health. So he presumably has the specialized knowledge to assess ME/CFS research and propose alternatives. (I’m an anthropologist, so I don’t.) While this is his first publication on this disease, his article cites 146 references, and he notes, “I have read, literally speaking, thousands of scientific abstracts, articles, and reports on ME/CFS.”

Ultra-short summary

I’ve read his full article (“The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis of ME/CFS”), which languishes behind a paywall. Fortunately, the abstract is freely available, but written for specialists. Here’s my ultra-short synopsis of his hypothesis:

Clumps of immune cells form in one or more key spots along the nervous system. Epstein-Barr virus (EBV) infects the clump(s), and this causes inflammation in the area. This inflammation provokes a reaction in the nervous system, which directly and indirectly accounts for the symptoms of ME/CFS. Extracting a patient’s immune cells, priming them to fight EBV, and returning them to his or her body might cure the disease.

Longer summary, with more details

First, some disease, injury, or toxic chemical leads to the clumping of immune cells (an “ectopic lymphoid aggregate”) in one or more places along the nervous system. Eriksen suggests that the dorsal root ganglia, which are located between the vertebrae, are a likely location, because these connect the peripheral nerves (in fingertips, for example) to the spine and thus the central nervous system. (A nice summary is here.) It is well-established that these clumps sometimes form in people, but their role in ME/CFS has not been shown—or discussed much.

Second, the Epstein-Barr virus (EBV) infects one of the immune cells that has clumped along the nervous system, and the virus spreads to other cells in the clump. It’s known that EBV infects such cells.

Over time, new clumps might form in different parts of the nervous system and become infected, and older clumps might get cleared of their EBV infections.

Third, the EBV infection causes the usual response: inflammation in the infected area.

Fourth, this inflammation provokes particular reactions in the nervous system, starting with “glial cell activation,” and this affects other parts of the body. So some symptoms are common to all people with ME/CFS because these changes ramify throughout the central nervous system or otherwise circulate throughout the body. Indeed, glial cell activation can put messenger molecules (cytokines) into the bloodstream, and these might cause the problems with metabolism that researchers have found in other kinds of cells.

Other symptoms are more variable because the clumps of infected immune cells are sitting by different nerves. For example, a person with an infection by the lower spine would suffer differently from someone with an infection along the upper spine.

For more information about glial cells, see this basic page, the Wikipedia entry, or some of the many videos on YouTube.

Fifth, battling this infection for an extended time leads to “immune cell exhaustion.” Thus the disease becomes relatively stable—in other words, chronic.

But that’s not the whole hypothesis. Unlike some other researchers—Robert Naviaux, for example—Eriksen also explains post-exertional malaise (PEM). He proposes that ultimately PEM results from physical stress—too much movement, stretching, or pressure—on the peripheral nerves, such as the ones running along our arms and legs. This intensifies the reactions in the nervous system (aka glial cell activation) that drive ME/CFS.

In the interview he clarifies that other forces, such as psychological stress or toxic chemicals, can make it easier for physical activity to trigger PEM. So it might seem to the person with ME/CFS that the psychological stress is the sole cause of PEM, when really it just reduces the threshold for physical activity to cause it—from walking to sitting up, for example.

Finally, Eriksen proposes a possible cure: “infusions of autologous EBV-specific T-lymphocytes.” Here’s what that means: T-cells—a kind of immune cell—will be taken from the blood of each ME/CFS patient and exposed to EBV in a lab. This will train the T-cells to attack EBV. Then the T-cells will be fed back into the patient intravenously, and, if all goes according to the hypothesis, some will eventually circulate to where the infected cells lying near the nervous system are causing ME/CFS. The T-cells will eradicate the virus there and thus cure the disease. (Yay!) This type of treatment has worked against other forms of disease caused by EBV.

For more information …

Of course, Eriksen’s paper has much more information – and precision! – than this discussion. The interview (highly recommended!) and my blog post evaluating this hypothesis also add some details. But the technically inclined reader who yearns for more (including other researchers, I hope) should either find a library that receives the journal Medical Hypotheses or ask a question here.

 

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23 responses to “ME/CFS: A new explanation – and cure?

  1. Thanks so much for sharing this…and putting it in laymen’s terms so the brainfogged can better understand it. Very interesting…especially the explanation of PEM. Davis’ OMF team, including Naviaux, is interested in collaborating wherever possible. Do you know if they have interacted at all? Any chance Eriksen might be at the August meeting at Stanford?

    Liked by 1 person

  2. Based on the interview and my internet searches, I think that Eriksen is not in touch with many other ME/CFS experts. One of my motivations is to draw their attention to his work, in case they find it promising. So maybe he’ll be invited to ME/CFS events in the future.

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  3. I wonder about a few things about this Post is this Doctor familiar with the work of The National CFIDS Foundation where their Team has now found evidence they believe is the Cause of CFIDS internal ionization Radiation

    injuries now found in urine samples of patients Positives using Government tests finding either/or Plutonium or Uranium? In 2002-2003 the Chernobyl expert Published several Papers saying clearly that CFS was radiation

    injuries. I have also heard David Bell is treating patients in NY State for radiation injuries, in fact, his Son works for the Canadian Government on radiation sickness Research but David Bell is not letting the mass amounts

    of patients know he is working on the connection to Radiation even top Radiobiologists from McMaster University in Hamilton, Ontario Canada have Published saying CFIDS is radiation injuries they are also funded now

    by the National CFIDS Foundation Team as well they are convinced it is the Cause, in fact, their Medical Director has been in touch with Ron Davis as well. Could this be Why these Governments will not fund serious Research

    knowing we have been injured by Radiation? They lied about Chernobyl 3 Mile Island Japan & countless spills not counting arming weapons in the Gulf Wars as well. Why is David Bell being so quiet about this, one thing is

    certain I know he also has this illness yet he continues to hide behind his patients like he is some World expert & he is not. The other findings recently is Dr. Ian Carroll from Stanford Pain Clinic also awareness Videos

    on YouTube is now finding Spontaneous Spinal Fluid Leaks/Tears’ in CFS so-called Ehlers-Danlos Syndrome which 95% of Patients diagnosed with CFS have undiagnosed types of EDS the most prominent one is EDS3

    some have multiple types called a crossover & they have full recoveries as well now they use the CT Myelogram some have multiple Leaks/Tears from the weakened Genetic connective tissue of the Dura.The NIH/NIAID

    Published last October 2016 Nature Genetics they found multiple copies of Tryptase Genes in these patients with connective tissue disorders some have 2 copies some have 3 copies even Dr. Anthony Faucci put out a Press

    Release then but no-one has heard much more since these announcements except for a few YouTube Videos but they did say their intention is to Block Tryptase entirely & about 20% of the World population

    do not have the Tryptase Gene at all. 2 other points I will mention with links here Why is Dr. Diana Driscoll’s Team find countless missed Health issues in CFS/Fibro/POTS Patients? http://www.potscare.com & also Why did all the Gulf

    War Veterans not counting countless CFS Patients all become Sick from getting Antibiotics have we been Poisoned & they know this is why we are Sick? I was also given these same types of Antibiotics as well prior to falling

    ill. http://www.floxiehope.com Also tell this Doctor if his Team needs funding to do a trial I may know someone who is willing to fund them depending on how much money is needed 🙂 I hope he is right & everyone else is wrong I wish

    him all the best in his endeavors & Sorry he has Family members who are Sick God Bless them I wish them all a fast Cure & the Cure does not take decades to be given the Green light. By the way I am now in touch with a

    legal Team familiar with Commercial Liens I will be filing suit from the Private side against numerous Governments for the neglect of Research I then plan on putting these Funds into Research once done they have

    stalled the seriousness of this illness far too long & it is Payback time now 100% they will be Lawsuit liens. I will be seizing their Assets & it will be in countless Millions as well…

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  4. Also wanted to mention Dr. Ian Carroll of Stanford also feels confident that the diagnosis of POTS is wrong in these Patients he feels it is the
    Spontaneous Spinal Fluid Leaks/Tears causing their tachycardia standing

    type issues, in fact, the successful ones treated no longer have POTS-like issues they are lifted & full recoveries with ‘thumbs up’

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  5. This is a very good theory.
    It is basically the one for the “Tahoe Mystery Illness” back in 1986, and was described in the newspapers by Stephen Straus of the NIH as,
    “A herpetic infection of the nervous system”
    However, the reason the name had to be changed AWAY from the 1985 “Chronic Epstein-Barr Virus Syndrome” is because the Tahoe outbreak revealed that this disease existed in the total lack of EBV.

    The replacement “virus” was called HBLV.
    “Human B cell Lymphotropic Virus”, later renamed HHV6A.

    The name of the new syndrome was “Chronic Fatigue Syndrome”

    Liked by 1 person

    • In his journal article, Eriksen discusses the similarities (and differences) between his hypothesis and quite a few previous ones.

      Like

  6. This makes sense to ME 👏👀 WHAT ABOUT EDS? connective tissue? How does that get fixed? And where does it all connected up? 👀

    Liked by 1 person

    • As far as I know, Eriksen’s hypothesis has nothing to say about Ehlers Danlos Syndrome(s). But, as I undertand his model, any condition that puts more pressure on nerves extending throughout our bodies would make the symptoms of ME/CFS worse.

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  7. Thanks for writing about this Tracy. I am curious about this part: “This type of treatment has worked against other forms of disease caused by EBV.” I wonder what those other forms of disease are. Does the full paper (behind the paywall I guess) mention these other forms of disease?

    Liked by 1 person

    • Eriksen cites works on multiple sclerosis, “persistent active EBV infection,” and some types of tumors (https://link.springer.com/chapter/10.1007%2F978-3-319-22834-1_15). This treatment might work even if his hypothesis is wrong in the details. What’s important is that EBV be involved in the disease. Maybe some kindly MS researcher will try it on a patient with ME/CFS … Actually, on further review, I see that he also cites works on “EBV+ lymphoproliferative disease (LPD) arising after hematopoietic stem cell transplantation.” This research is centered at Baylor University in Texas. One abstract states: “A preliminary analysis indicated that a patient-specific CTL line can be manufactured, tested, and infused for $6095” [CTLs are the T-cells trained to attack EBV].

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  8. Pingback: ME/CFS: A New Explanation – And Cure ? – The York ME Community

  9. When I first became Ill it was with EBV. I hope they try the treatment on patients. If it’s safe I’d try to sign up.

    Liked by 1 person

  10. I’m curious what the theory says about those who have no antibodies/no prior infection with EBV. Yes the significant majority of the population has been exposed, but not every individual. I am one who fits the criteria of ME, has a diagnosis of CFS (America), but has no antibodies. Would it be possible for all herpes viruses to be a potential trigger, rather than just EBV?

    Liked by 1 person

    • I asked Eriksen this in the interview (#4). Among other things, he writes, “I do not dismiss the idea that also other mechanisms may lie behind ME/CFS, including other viruses. Under my hypothesis, HHV-6 may play a contributing role by interacting with EBV. It is possible, however, that HHV-6 also might play the major role in some cases, without any interaction with EBV.

      “So long as we do not know with certainty the causes of ME/CFS, one should keep an open mind.”

      Liked by 1 person

  11. I had EBV registered 3 times– EBNA-lgG antistof (1500 % off , which was saying earlier infection…
    EBV VCA-igG, with 1300 % off
    EBV VGA-lgM Negativ, no antistof, no reasantly infection.
    Cytomegalovirus-lgG- antistof (Behring)Negativ, no antistof.
    Chlamydia pneumoniae lgG-antistof, antistof 260 % off of the border worth.
    Clamydia pneumoniae lgM-antistof, Negativ, no antistof shown.
    All these testes were in Oslo Norway, 2004..
    My diagnosis is ME cfs from 2006, professor dr. Harald Nyland, Haukeland sykehus.
    I would love to find that the EBV could be a reason and a way out of this illness. I am now 73 years of age, and would be very happy to get well. I do have other illnesses too, which I suppose comes with the territory.. Lik Sjøgrens syndrom, very painful back and hips, but the worst is the ME, with the fatigue..
    Very hopeful, your Karin Vigdis Kajander

    Liked by 1 person

  12. Pingback: ME/CFS: Eriksen on gut issues and timing | Tracy Duvall

  13. Where do I go to get this treatment?!

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    • I have the same question! Seriously, though: no one has tried this treatment on ME/CFS yet. Baylor Medical Center, St. Jude’s, and others have tried it on other diseases. The trick is getting one of them to test it, probably in collaboration with an ME/CFS specialist, on someone with this disease.

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  14. Torfinn Sornes

    There must be at least one ME/CFS specialist out there who want to test this and get his/her name on this eventually successfully cure. My severely ill daughter would like to be a candidate for this test.

    Liked by 1 person

    • I’m sorry to learn about your daughter’s illness. I certainly don’t want to wait five or more years for someone to finish exploring this (or suramin) in a lab. My only advice is to contact any specialist working with your daughter and urge him or her to consider this treatment. (I’ve contacted two thus far.) It might be that some specialists, along with Dr. Eriksen, are already exploring how to do so. I’ve suggested to Eriksen that crowdfunding might help.

      Here are my main points for such specialists:
      • The research articles I’ve read note its safety.
      • For Multiple Sclerosis, at least, it’s an alternative to rituximab, but it doesn’t kill B cells indiscriminately (http://www.nature.com/cti/journal/v3/n10/full/cti201425a.html).
      • It might serve as a definitive test for the involvement of EBV in ME/CFS. But Baylor also uses different versions of this treatment this for HHV6, cytomegalovirus, and others (https://www.bcm.edu/news/cell-and-gene-therapy/study-safety-profile-virus-specific-t-cells).
      • It might work even if Eriksen’s hypothesis is wrong.
      • Research at Baylor and St. Jude’s found: “A preliminary analysis indicated that a patient-specific CTL line can be manufactured, tested, and infused for $6095” [CTLs are the T-cells trained to attack EBV] (http://www.bloodjournal.org/content/115/5/925.long). I paid more for Valcyte!

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  15. Pingback: ME/CFS: A new explanation – and cure from Dr Willy Eriksen? | WAMES (Working for ME in Wales)

  16. Pingback: ME/CFS: Dueling Hypotheses | Tracy Duvall

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