• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Possible EBV Vaccine Being Developed

edawg81

Senior Member
Messages
142
Location
Upstate, NY
EBV Vaccine being developed under Dr. Hank Balfour at U of M. I think there is also some association with Mayo.

http://www.kare11.com/entertainment...veloping-vaccine-to-prevent-mono-ms/365394372

I wonder if this vaccine, if it becomes available, will have some value to CFS ME treatment and/or research?

I also wonder if they are aware of Dr. Lerner's work? He mentions antivirals and rtxn in one of his talks from a few years ago:

https://docs.google.com/file/d/0B7ZA9EbqndaoeXhmWEctUmRFY1k/edit
 

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
EBV Vaccine being developed under Dr. Hank Balfour at U of M. I think there is also some association with Mayo.

http://www.kare11.com/entertainment...veloping-vaccine-to-prevent-mono-ms/365394372

I wonder if this vaccine, if it becomes available, will have some value to CFS ME treatment and/or research?

I also wonder if they are aware of Dr. Lerner's work? He mentions antivirals and rtxn in one of his talks from a few years ago:

https://docs.google.com/file/d/0B7ZA9EbqndaoeXhmWEctUmRFY1k/edit
geat news! I've got igg antibodies for EBV
 

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
as I understand it, some vaccines can help the body combat pathogens that are already present. I´m aware that most of the world population is positive for EBV igg, but there was at least one trial showing that ME patients with an higher than 320 igg antibody titer for EBV can benefit from a certain antiviral med
 

edawg81

Senior Member
Messages
142
Location
Upstate, NY
most of the planet has IgG to EBV

how would a vaccine be beneficial for those already infected?


I'm no doctor, but i think in my case ebv played a signifcant role in the malfunction of my immune system leading to CFS ME, im trying anti virals now. We know that ebv does unusual things to b cells and what genes / recepters are expressed. This vaccine targets some of those (from my minimal undetstanding). All is these researchers are in an area of study closely linked to what is being studied for the ebv CFS ME subset. Any ebv experts have any thoughts?
 

Daffodil

Senior Member
Messages
5,875
I'm no doctor, but i think in my case ebv played a signifcant role in the malfunction of my immune system leading to CFS ME, im trying anti virals now. We know that ebv does unusual things to b cells and what genes / recepters are expressed. This vaccine targets some of those (from my minimal undetstanding). All is these researchers are in an area of study closely linked to what is being studied for the ebv CFS ME subset. Any ebv experts have any thoughts?
hi edawg. I also became ill after ebv and remained ill for decades despite years of antivirals. in the end, antibiotics are what saved my life.
xo
 

RogerBlack

Senior Member
Messages
902
hi edawg. I also became ill after ebv and remained ill for decades despite years of antivirals. in the end, antibiotics are what saved my life.
xo

Antibiotics are for bacterial infections. EBV is a virus, which antibiotics do nothing for.
 

Woolie

Senior Member
Messages
3,263
Probably talking through my rear here, but my understanding was also that vaccines are only effective in those who are not yet infected. Since EBV is for life, you'd never reach a point where you were vulnerable to reinfection and thus could benefit again from vaccination.

But this vaccination could do wonders do reduce the incidence of MECFS. The number of cases triggered by acute EBV infection would drop right down (and that seems to be a pretty big cohort).

I assume the vaccination would be given to young kids, and we know that the younger you are when you first get EBV, the less symptoms you experience. Most young kids just think they had the flu for a few days. Some don't notice anything. Few end up with ME (that's more teenagers and young adults). It would be even fewer if there were a vaccination, I'm sure.

I wonder, though, if you might get the occasional person who actually reacts to the vaccine and that triggers ME. You might save thousands from ME, but at the same time maybe cause it in one or two cases who might have avoided it otherwise (hard to know).
 

edawg81

Senior Member
Messages
142
Location
Upstate, NY
Just a followup, there will be a live Q and A with Dr. Balfour on facebook at 5:45pm eastern (IE in 10 minutes) on the 11alive fb page. I will remind him that CFS ME research is underfunded and need more research and maybe he could colab with OMF solvecfs.

For Kelly, the antivirals have been life changing, but they don’t work for everyone and there is no official treatment.

Balfour continues the final push on the vaccine, with hope that another vaccine can be created to treat those already infected with EBV. "I think that this virus and its potential complications has flown under the radar for a long time which is unfortunate because 90 to 95 percent of the world's population have been infected by this virus by the time they're adults, so clearly there's a large portion of us who have chronic symptoms that could well be due to EBV and I think it's time to pay more attention to the virus."
http://www.11alive.com/news/childhood-kissing-disease-linked-to-adult-chronic-illnesses/369200723

Note: Kelly Deushane is the wife of WXIA-TV General Manager John Deushane.

Guess being a family member of a station manager helps with media awareness.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,097
Location
australia (brisbane)
Im not confident it vaccines being helpful for many mecfsers?? my reason is vaccines help adaptive immunity and most of us show antibody responses to viruses, i cant see how more can help. the problem many of us cfsers have is our innate immunity ie nk cells and t cells dont function well. i believe also that they dont work alone but adaptive and innate work together to fight infections but when one side is broken then infections can remain and become chronic.

One of my experiences is when i stopped antivirals (cmv/ebv) i got my antibody test done for varicella virus . test came back saying good immunity. well it wasnt enough and not long after stopping avs i got shingles/varicella and its been reoccurring for 2yrs plus now, but its now controlled. i believe its because i have low nk function and low neutrophils.
 

RogerBlack

Senior Member
Messages
902
Probably talking through my rear here, but my understanding was also that vaccines are only effective in those who are not yet infected. Since EBV is for life, you'd never reach a point where you were vulnerable to reinfection and thus could benefit again from vaccination.

It's complex.
The body does not make a robust immune response to all viruses, and a vaccine can greatly help.
Some examples - not all very related.

Rabies virus is pretty much 100% fatal - but a large fraction of people who die from it seem at the end to have antibodies that probably would clear the virus given time - it's just not enough, as by that time it's already gotten into the brain, and they die. If you give vaccine at the start, it lets the immune system kill it before it can get that far, and develop the immune response early enough to cope with minimum or no later problems.

Shingles is caused by a reactivation of the chicken-pox virus that has lain dormant for some years. Immune responses to viruses can decay over time, perhaps combined with the virus mutating to escape the immune response, though due in many cases to immune suppression - either the normal one through age, or other causes. A vaccine is available which boosts the immunity (though you have some natural immunity already because you were infected with chickenpox) and prevents (or greatly reduces the chance of) a reactivation and shingles.

Norovirus (winter vomiting disease) is another example - in this case the immunity made to it is not great, and you can get reinfected by the same strain in a fairly short time.

On EBV, a vaccine could help in several ways. (these are all entirely made up by me, and seem sort-of-plausible)
If flares of EBV activity are triggered by severe stress (including PEM), which causes an immune response which is misdirected in the same way that initially causes CFS, reeducating the immune system with a vaccine, and strengthening it so the immune system is better able to kill the flares promptly, or even eliminate the virus might, if not curing a patients CFS, at least stop the prospect of subsequent activations of the virus causing a significant worsening.
If there are several strains of EBV, it may be possible to be infected again, and get a 'new' response to that infection, because your initial immune response was specific to that strain. A proper vaccine may be able to cover all circulating strains.
If the bodies immune response is not for some reason clearing the infection, but a more robust response could reduce it to a low enough level that whatever it's doing to the immune system on a sustained basis stops, it might be a 'cure'.

In addition, antivirals are unfortunately not in general very widely acting - we're not at the early antibiotic era, when everything died to penicillin.

Viruses mutate much more rapidly - HIV has taught us that you need to use several effective antivirals at once in many cases to control an infection.

EBV may of course differ. But a quick search leads to attempts to clear EBV from people who are voluntary organ donors, which unfortunately failed with common antivirals.
 

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
It's complex.
The body does not make a robust immune response to all viruses, and a vaccine can greatly help.
Some examples - not all very related.

Rabies virus is pretty much 100% fatal - but a large fraction of people who die from it seem at the end to have antibodies that probably would clear the virus given time - it's just not enough, as by that time it's already gotten into the brain, and they die. If you give vaccine at the start, it lets the immune system kill it before it can get that far, and develop the immune response early enough to cope with minimum or no later problems.

Shingles is caused by a reactivation of the chicken-pox virus that has lain dormant for some years. Immune responses to viruses can decay over time, perhaps combined with the virus mutating to escape the immune response, though due in many cases to immune suppression - either the normal one through age, or other causes. A vaccine is available which boosts the immunity (though you have some natural immunity already because you were infected with chickenpox) and prevents (or greatly reduces the chance of) a reactivation and shingles.

Norovirus (winter vomiting disease) is another example - in this case the immunity made to it is not great, and you can get reinfected by the same strain in a fairly short time.

On EBV, a vaccine could help in several ways. (these are all entirely made up by me, and seem sort-of-plausible)
If flares of EBV activity are triggered by severe stress (including PEM), which causes an immune response which is misdirected in the same way that initially causes CFS, reeducating the immune system with a vaccine, and strengthening it so the immune system is better able to kill the flares promptly, or even eliminate the virus might, if not curing a patients CFS, at least stop the prospect of subsequent activations of the virus causing a significant worsening.
If there are several strains of EBV, it may be possible to be infected again, and get a 'new' response to that infection, because your initial immune response was specific to that strain. A proper vaccine may be able to cover all circulating strains.
If the bodies immune response is not for some reason clearing the infection, but a more robust response could reduce it to a low enough level that whatever it's doing to the immune system on a sustained basis stops, it might be a 'cure'.

In addition, antivirals are unfortunately not in general very widely acting - we're not at the early antibiotic era, when everything died to penicillin.

Viruses mutate much more rapidly - HIV has taught us that you need to use several effective antivirals at once in many cases to control an infection.

EBV may of course differ. But a quick search leads to attempts to clear EBV from people who are voluntary organ donors, which unfortunately failed with common antivirals.
EXCELLENT explanation, thanks! maybe this gives us some hope. By the way, do you know what test are useful to determine if you've got an active EBV infection? I only got checked for igg and igm, having only positive igm (titer: 1/320)