"Epstein-Barr Virus and the Origin of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome"

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After a long time and a lot of work, our hypothesis on the development of ME/CFS following an Epstein Barr virus infection has finally been published:

https://www.frontiersin.org/article...journalName=Frontiers_in_Immunology&id=656797

I would like to thank Dr. Bruno Paiva's team at CIMA of the University of Navarra, Aintzane Zabaleta and Solve ME/CFS initiative for making this project possible.
Soon we will be able to start with the study in ME/CFS patients. I will give more information later.

If you want to collaborate helping the research with a donation, you can do it in the following link:
https://helpify.es/comunidades/todo-por-la-causa-del-sindrome-de-la-fatiga-cronica/

Best regards,
Manuel.
 

Learner1

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After a long time and a lot of work, our hypothesis on the development of ME/CFS following an Epstein Barr virus infection has finally been published:

https://www.frontiersin.org/article...journalName=Frontiers_in_Immunology&id=656797

I would like to thank Dr. Bruno Paiva's team at CIMA of the University of Navarra, Aintzane Zabaleta and Solve ME/CFS initiative for making this project possible.
Soon we will be able to start with the study in ME/CFS patients. I will give more information later.

Best regards,
Manuel.
Thank you for posting.

Does this apply to HHV6, cytomegalovirus, or zoster as well? Or HSV1 or 2?

My ME/CFS was triggered by chemotherapy for stage 3 uterine/ovarian cancer. My immunoglobulins and NK cell function dropped and I had PCR positive EBV (with only high VCA IgG antibodies) along with 6 other infections. Autoimmunity was triggered. Extended use of high dose Valcyte, along with IVIG, testing the other infections, then using Rituximab led to significant resolution of symptoms. Therefore, though this article is significant, I am concerned about the assertions it makes regarding these treatments. My doctor, an AIDS doctor for 30 years, has been very careful about identifying a subset of patients to try these strategies on.

Additionally, my 2 Moderna COVID vaccines reactivated my HHV6, but not EBV (I've had several tests confirming this) and this time Valcyte was not fully effective, but I have been successful with both Valcyte and Famvir taken concurrently.

I believe this is a very significant area of investigation as I have known MANY patients who, after years of suffering, have finally been adequately tested for EBV, HHV6 and CMV, found them active, and subsequently responded to treatment.

The paper suggests current antivirals are inadequate. Many of us would be most grateful to better understand the DNA demethylation agents discussed in the paper.
 

Pyrrhus

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After a long time and a lot of work, our hypothesis on the development of ME/CFS following an Epstein Barr virus infection has finally been published:

https://www.frontiersin.org/article...journalName=Frontiers_in_Immunology&id=656797
Congratulations! :trophy:
I know you have been working on this project for a long time...

An ME patient in Spain, Manuel Ruiz Pablos, is crowdfunding for a research study at the University of Navarre:

All for the cause of Chronic Fatigue Syndrome
https://helpify.es/comunidades/todo-por-la-causa-del-sindrome-de-la-fatiga-cronica/
 

Pyrrhus

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Abstract:

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) affects approximately 1% of the general population. It is a chronic, disabling, multi-system disease for which there is no effective treatment. This is probably related to the limited knowledge about its origin.

Here, we summarized the current knowledge about the pathogenesis of ME/CFS and revisit the immunopathobiology of Epstein-Barr virus (EBV) infection. Given the similarities between EBV-associated autoimmune diseases and cancer in terms of poor T cell surveillance of cells with EBV latency, expanded EBV-infected cells in peripheral blood and increased antibodies against EBV, we hypothesize that there could be a common etiology generated by cells with EBV latency that escape immune surveillance.

Albeit inconclusive, multiple studies in patients with ME/CFS have suggested an altered cellular immunity and augmented Th2 response that could result from mechanisms of evasion to some pathogens such as EBV, which has been identified as a risk factor in a subset of ME/CFS patients. Namely, cells with latency may evade the immune system in individuals with genetic predisposition to develop ME/CFS and in consequence, there could be poor CD4 T cell immunity to mitogens and other specific antigens, as it has been described in some individuals.

Ultimately, we hypothesize that within ME/CFS there is a subgroup of patients with DRB1 and DQB1 alleles that could confer greater susceptibility to EBV, where immune evasion mechanisms generated by cells with latency induce immunodeficiency. Accordingly, we propose new endeavors to investigate if anti-EBV therapies could be effective in selected ME/CFS patients.
 

EtherSpin

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We need better treatment options to tackle this pathogen. Maybe in the next few years if these new vaccine techs can be bothered to create one for ebv.
yes!
do you mean you wonder RE EBV getting a targeted m-RNA vaccine that 'shows' the body a portion of the virus to indicate where to attack/what to attack , giving it a potentially novel attack vector ?
if so, I wonder the same regarding CMV, Chicken Pox/Shingles and a few other select nasties, could a new instruction or strategy tell our bodies how to end these bastards ?
 

junkcrap50

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Wow. I've read one of your earlier papers review papers on EBV. I was incredibly impressed with your writing and how you wrote such a thorough review. It must have been an incredible amount of work. Needing to pull together all the many references and facts, it's hard for me to fathom how any one writes review papers. Plus you did it while having CFS! So I will look foward to reading this paper.
 

lenora

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Prophylactic vaccines (which they're working) on would be for those who haven't had the illness. We fall into another category. Many of these illnesses are especially bad for the human body (as we know).

As for us, we're still waiting for the magic bullet, so to speak. I knew they were working on these vaccines for common ailments that can kill or do great harm, but I'm glad to see that they're as advanced as they are.

These will be given longer trials than they had time for with the COVID vaccines. Yours, Lenora.
 

EtherSpin

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Prophylactic vaccines (which they're working) on would be for those who haven't had the illness.
thanks for the information Lenora :)

regarding C19 , we see that vaccination is recommended for people who have been infected (well here in Australia it is anyway) - Im uncertain as to EBV, CMV and Varicella being able to be either caught again OR have a resurgence/reactivation - would the possibility of reactivation mean a rationale for m-RNA dose for people already hit by these ?
 

lenora

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Hello @EtherSpin......Sorry, I don't have the answer to that one for you. However, if you receive an answer that isn't on here, please do let me know as it's just interesting to have (and remember) these facts.

Chicken Pox that we've had as children can resurface in us in later years and you don't want anything to do with shingles. The virus is stored in the spinal cord and that's where things like stress (good or bad) can cause a breakdown in the body. I was thrilled when they came out with the new shingles vaccine about 2 yrs. ago. 2 doses given over a few week period....and it's supposed to last for life. I'm one of the lucky ones who has had it 4 times, so this was a real boon in my life. The vaccine was very similar to the COVID vaccines in the bodily reaction. Not a problem, at least for us. Shingles seems to get worse with each outbreak. May better health be yours. Lenora.
 
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We need better treatment options to tackle this pathogen. Maybe in the next few years if these new vaccine techs can be bothered to create one for ebv.
Moderna is developing both a prophylactic and therapeutic mRNA vaccine for Epstein-Barr Virus (EBV).

EBV prophylactic vaccine (mRNA-1189) to start Phase 1 trials in 2021. EBV therapeutic (mRNA-1195) is currently in preclinical development.

Source from Sept 2021: https://investors.modernatx.com/static-files/834b6509-553f-4ee5-84e0-c198bbb850f0
 
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That's good news I'd say. It will be incredibly interesting to see how someone with ME would respond to an ebv vaccine. It could also not have much of an effect but hopefully it's strong enough to at least train the body to fight the virus for 12 months. I don't tolerate antivirals so for me this is likely my only route.

https://en.wikipedia.org/wiki/Epstein–Barr_virus_vaccine
 
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In other news: https://www.eurekalert.org/news-releases/680158#:~:text=A research group led by,6B (HHV-6B).

A research group led by Professor MORI Yasuko (of the Division of Clinical Virology, Center for Infectious Diseases, Kobe University Graduate School of Medicine) has revealed that the HHV-6B glycoprotein complex gH/gL/gQ1/gQ2 is an effective vaccine candidate for human herpesvirus 6B (HHV-6B). There are still no methods to treat nor prevent HHV-6B infection, and this study represents the first attempt in the world at developing a vaccine.
I can't see any statements about companies picking up the glycoprotein's to create a vaccine yet though.

Just realised it says hhv-6B - unsure if B is relevant to ME patients?