Active Epstein-Barr Infections Found in Large ME/CFS Study

[sometexan84]

They said, "Using both serological tests and PCR, this study provided a robust finding of an active EBV infection in about 20% of the ME/CFS patients tested. The authors asserted that this finding indicated “EBV is an important factor for the development of the disease” in at least a subset of patients."

Exactly. It's just a study that reiterates the fact that EBV is a very key player in CFS. 20% is a pretty decent sized section, or sub-set.

I don't think anyone believes that EBV is the cause of ME/CFS for everyone. I mean, you have the Craniocervical instability sub-set of CFS patients. You have those with genetic primary immunodeficiencies. Some have serious allergies, or major hormone dysfunction, brain abnormalities, all of which could contribute.

 

[Wishful]

Sometimes I get the impression these studies are more a test of the viral detection methods used, than they are a test of ME/CFS patients.

A lot of improvements in testing sensitivity outpace the experience to know how to use them properly and how to interpret the results properly. I'm sure someone could write a paper about how heavy metal levels in humans are much higher now than in the past (!!!!), just based on the improved sensitivity of testing, misusing the numbers to say whatever the author wanted.

 

[Hip]

A lot of improvements in testing sensitivity outpace the experience to know how to use them properly and how to interpret the results properly.

In this case, the issue would appear to be that the studies measured different EBV antibodies:

• The 2020 study measured IgM and IgG antibodies to EBV virus capsid antigen (VCA)
• The 2012 study measured: IgM antibodies to EBV VCA, antibodies to EBV early antigen (EA) diffuse, antibodies to EBV DNA polymerase, and antibodies to EBV dUTPase

So the two studies measures different antibodies. The 2012 study seems like a far more in-depth look at the role of EBV in ME/CFS, because it measured more antibodies.

94% seems like an incredibly high number. Has this study ever been duplicated? In order for these findings to be credible, there would need to be multiple studies showing this same high percentage of EBV (EA) in patients.

In the 2012 study, they found that certain EBV antibodies were far more common in ME/CFS patients compared to controls. In particular, the DNA polymerase and the dUTPase antibodies were not found at all in healthy controls, but these antibodies were highly prevalent among ME/CFS patients:

Antibody Test - - - - ME/CFS Patients - - - - - - Controls

EBV EA Diffuse - - - - - - 94% - - - - - - - - - - - - 32%
EBV DNA polymerase - - 79% - - - - - - - - - - - - 0%
EBV dUTPase - - - - - - - 44% - - - - - - - - - - - - 0%



Antibodies to EBV DNA polymerase and dUTPase have been found before in ME/CFS, as early as the 1980s.

EBV dUTPase has been shown to induce sickness behavior symptoms (which are similar to ME/CFS).

And a recent 2019 study suggests EBV dUTPase may cause the neuroinflammation in ME/CFS.

So the interesting thing about the EBV dUTPase found in ME/CFS patients is that this protein could help explain how EBV causes the symptoms of ME/CFS, via the neuroinflammatory and sickness behavior effects of EBV dUTPase.

One 2017 Nancy Klimas study found EBV dUTPases in ME/CFS as well.

EBV dUTPase also ties in with Dr Martin Lerner's abortive herpesvirus infection theory of ME/CFS, because it has been shown that abortive EBV infections (which are intracellular infections that do not create viral particles) produce dUTPase.

Cort has written a few articles on dUTPase.

 

[godlovesatrier]

I do think regardless of the inconsistencies. Dr Lerner wouldn't have had over a hundred? Maybe it was 300+ patients. I would hazard a guess 20% to 30% treated with ebv anti virals only and made full recoveries or very close to it. There has to be a reason for it and his work has the largest base of patients, blood work, and follow up.

Just another subset at any rate. Just like the metabolic trap.

Although the trap and any larger issues as we all know can just be the main reason all of these issues occur at all. I'm trying valtrex anyway as I now have a smouldering ebv infection. Which I've just spent most of the week in and out of hospital for. And it took 4 weeks for it to slowly take over my immune system from dormancy.

 

[sometexan84]

I do think regardless of the inconsistencies. Dr Lerner wouldn't have had over a hundred? Maybe it was 300+ patients. I would hazard a guess 20% to 30% treated with ebv anti virals only and made full recoveries or very close to it. There has to be a reason for it and his work has the largest base of patients, blood work, and follow up.

Also, there are a couple of SUPER important considerations.

1) People still don't know they have an active EBV infection. I'm talking about those that have been tested and can't interpret the results.

2) People can't handle herx reactions. They quit when it starts to suck. Not to mention you have to be on Valtrex for a year at least. Another point of friction.

 

[Treeman]

According to Prusty's work and maybe even Naviaux, there could be none in the blood even with the virus stopping the mitochondria making energy. So treating to stop new cells developing with the virus (if they do start to multiple) supports the use of anti virals.

 

[godlovesatrier]

@sometexan84 Yes I agree with 2) - I am going to attempt to go very low and slow, I hope that doesn't reduce the overall efficacy of the drug. I am expecting the herxing to be horrible. If my GP offers me assistance instead then great. But I have been told that nobody will ever get anti virals on the NHS by my former GP, so I am convinced they will just leave me on the scrap heap.

Also I do have a smouldering ebv infection right now, my throat actually feels glued up and my neck throat ear and neck lymph nodes and glands are a mess. I got an armin labs elispot test for ebv in 2018 which showed a very weak former ebv infection. But due to armin being a sh** lab, it's frustrating I can't rely on their latent ebv test. Even so I'll do the anti virals and hope.

@Treeman yes I agree, for many on the forum though anti virals haven't worked.

 

[Treeman]

But I have been told that nobody will ever get anti virals on the NHS by my former GP

I did. I also used to get shingles outbreaks and I was asking for anti virals for ME/CFS. He said he could for the shingles outbreaks even though I hadn't had one for a while. I get acyclovir 400mg x 3 times a day

 

[gbells]

How frustrating but consistent with what we've already seen. My current pet theory is that it isn't the presence of the virus alone that triggers ME but the timing of the infections. EBV upregulates the Nf-kb inflammation pathway to prevent apoptosis. Normally viruses have limited penetration. However, when you have multiple viral infections affecting different apoptosis pathways you get a new co-infective disease where the penetration would increase so that viruses that normally don't infect certain types of cells can now do so. The viral infections are very metabolically draining themselves plus the Nf-kb inflammation inhibits mitochrondria so you have a shift towards glycolysis and loss of 90% of the ATP production in the affected cells. If you have widespread infections then that would be a huge energy drain and source of chronic, painful inflamation. However, according to Lehrner's theory, dual infections can block each other's replication so they stop spreading eventually except for actively dividing cells. My own IgG tests were positive for HHV6 and enterovirus but had a negative EBV.

Even worse, there is no approved treatment to cure chronic viral infections so we are left in the depleted state. No wonder the MDs don't want to touch it.

 

[godlovesatrier]

@Treeman it just goes to show. Some GP's get very angry, others look at you like your a piece of stupid sh**, and then there's those who just toe the line. I'm changing GP practice again now, praying i get a decent GP.

I feel dreadful today, I am sure it's the codiene and lack of food. But swallowing anything still hurts like hell. Just asked my gp for steroids as I don't want to go back to A&E again. I do find it annoying how some A&E stuff judge you for being there, I mean I am very sick at the moment, they said as much themselves, but you sitll get judged by some.

My ears are closing up now too, thankfully it's not too painful, but I can't exactly hear much.

@gbells suddenly starts to sound like longcovid and as one doctor tweeted hte other day, it could easily be due to other dormant viruses replicating, not just damage done by covid19.

I keep thinking, we need a machine that can snapshot a human body in a few seconds at any practioner, we need a way to heal and rejuvinate tissues and immunological function for PVFS patients. Scary knowing these are 50 to 100 years away.

 

[sometexan84]

I am going to attempt to go very low and slow, I hope that doesn't reduce the overall efficacy of the drug. I am expecting the herxing to be horrible.

I got an armin labs elispot test for ebv in 2018 which showed a very weak former ebv infection. But due to armin being a sh** lab, it's frustrating I can't rely on their latent ebv test. Even so I'll do the anti virals and hope.

Would you mind sharing your ebv test results? I wouldn't do antivirals until you're sure about the lab results.

The different studies out there have shown solid correlations between dosage and efficacy. I don't have the link, but there was one study showing how long it would take if you took 1x/day (500mg i think?). And showed it would take way longer to clear out EBV v/ valtrex that way.

If it helps, I'm doing 3-4x/day (500mg). Which is actually lower than Dr. Lerner's protocol I believe. I'm almost 3 months in, and have had notable improvement from it. My herx lasted 4-5 days, which began when I was 5-6 weeks in.

My own IgG tests were positive for HHV6 and enterovirus but had a negative EBV.

Just for fun, would you be willing to share your lab results, the titres, for EBV, enterovirus, and HHV-6?

 

[godlovesatrier]

A&e confirmed glandular fever. It must be pretty bad for it to be positive as those tests are not super sensitive.

The armin one shows a latent replicating virus. That's from 2018. But probably isn't very reliable.

It takes 6 to 11 years of you take 1 a day. But I'm talking about slowly working up to 1g 4x a day instead of starting at that. Learner seems to work his way up wirh patients.

No titer tests for me sadly. I need to get tested agaib in 6 weeks with my gp for ebv so that will be interesting. It's horrible my immune system is struggling a lot.

 

[Wishful]

Scary knowing these are 50 to 100 years away.

Maybe not that long. The rate of technological progress isn't linear, it's increasing rapidly. I think we could get AI good enough to create better AI fairly soon, and it could evolve extremely rapidly after that. Developing an AI to figure out human diseases might take a few weeks at some point in the not too distant future. Of course, what will happen to humans after AIs surpass us is another question...

 

[godlovesatrier]

I don't agree. The science and medicine is just too far behind. The technology might be close but so what if the science and medicine doesn't know it's arse from it's elbow. And AI can't do breaking medical research sadly. If it could then great. Also genetics work for triage is a distraction if you ask me.

I work as a software tester and programmer. We are nowhere near what you are suggesting I'm afraid. Elon musk doesn't know everything either.

 

[Treeman]

I think lack of funds is the biggest hurdle

 

[Wishful]

And AI can't do breaking medical research sadly.

I think it could. Maybe not today, but soon. Imaging an AI running thousands of micro (or nano) scale experiments simultaneously trying to answer the question of "why are cells from these patients working differently from those in the controls?". Think of Edison's quote: “Genius” is 1 per cent inspiration and 99 per cent perspiration.” Computers are good at doing the tedious tasks that slow down human research. I vaguely recall news stories about AIs outdoing human doctors at finding tumours in images or testing a large number of drugs far faster than humans could.

I think lack of funds is the biggest hurdle

Yes, but the costs of doing certain kinds of research is dropping rapidly. Think of testing drug candidates 50 years ago: humans injecting drugs into lab animals and waiting to see what happens. Now the same can be done in hours (or minutes?) using a small glass slide (or whatever it is these days). The ability to scan a body using various forms of energy has also progressed rapidly. The first MRI units were very expensive. How much longer until there are MRI scanners cheap enough for home use? Technology is reducing the amount of expensive human labour required for research. Of course, the questions are getting more expensive too.

 

[gbells]

Just for fun, would you be willing to share your lab results, the titres, for EBV, enterovirus, and HHV-6?

Sure. Here you are. Notice how the EBV pos disappears when the HHV6 pops up.

 

[sometexan84]

But I'm talking about slowly working up to 1g 4x a day instead of starting at that. Learner seems to work his way up wirh patients.

No titer tests for me sadly. I need to get tested agaib in 6 weeks with my gp for ebv so that will be interesting. It's horrible my immune system is struggling a lot.

Yea, for sure. Work your way up. Progress is progress. I'm just not patient at all, so I like to go for it, and deal w/ the herx. Actually, to tell you the truth, I embrace the pain! haha, I do, when I herx and I feel like shit, it feels like success, and I think of how it's my body battling it out on it's way to a victory!

Seriously though, it might be wise to wait to get test results back for EBV before starting on antivirals.

Very important: You'll want to make sure you're getting EA (Early Antigen) IgG included in the EBV test. Lots of documentation on this you can find >> EA positive means active infection, even if IgM is negative. This appears to be almost always true.

These are my labs from earlier this yr. This means I have an Active Re-Infection.

And AI can't do breaking medical research sadly

Yea, I agree w/ @Wishful on this. Honestly, I find it more difficult to think of things AI won't be able to do (or improve upon, or make more efficient).

I'm still amazed at Google's Rankbrain AI, and how they've incorporated that into their search results algorithm. And that was 5 yrs ago. Rankbrain is one of the top 2 or 3 (if not the #1) search engine ranking factor used to deliver Google search results.

But I think the technology isn't quite there yet for the futuristic body scan and laser beam tissue healing or any of that.

 

[sometexan84]

Sure. Here you are. Notice how the EBV pos disappears when the HHV6 pops up.

I see there are EBV results at the top, and at the bottom of the file. Both suggest you do NOT have an active infection (based on the most recent EBV interpretations you can find online). I don't know how old those EBV results are at the top, but looks like they're pretty old. And thus, are possibly less reliable. 2008 I think it says? Or 2002? Those are weird ranges...

HHV-6 - Looks like you have 7 fold increase in titres. HHV-6 Foundation says this suggest you "MIGHT" have an active infection. And since it looks like your test was ELISA, you probably will want to re-test and do IFA this time (via Quest Diagnostics or ARUP Labs or Focus, not LabCorp). I actually did both Labcorp's ELISA test and Quest's IFA test for HHV-6, just to be sure.

More info here: https://hhv-6foundation.org/patients/patient-faq

Your enterovirus titres look pretty low. Def wouldn't be overly concerned, at least based on those numbers. https://me-pedia.org/wiki/Enterovirus

Titers of 1:160 to 1:320 or higher on the ARUP Lab coxsackievirus B test and echovirus test suggest chronic active infection

Also, I would prob remove that pdf file and instead crop out just the results sections so you're not showing all of that personal info.

 

[gbells]

I see there are EBV results at the top, and at the bottom of the file. Both suggest you do NOT have an active infection (based on the most recent EBV interpretations you can find online). I don't know how old those EBV results are at the top, but looks like they're pretty old. And thus, are possibly less reliable. 2008 I think it says? Or 2002? Those are weird ranges...

It definitely confirmed mononucleosis (EBV) in 2008 but then that dissappeared in later tests after HHV6 became positive. Maybe Lerner's idea that HHV6 blocks EBV replication is correct.

Thanks for the interpretation of the enterovirus results.