Did your cfs start due to Epstein Barr?

[stellaluna]

No doctors ever suggested antiviral medication for my many viral assaults. Maybe they only existed in recent years.

I was given antibiotics for the Virus that attacked me, back in 1983. Which was likely shingles. It killed off two of my front teeth.

At the time, I marched right into the doctors office with my mom like “Hey doc! I’ve got a bad case of herpes and need antiviral medication!”

…of course nobody was going to listen to an 11 year old. I took antibiotics for 3 weeks and by that point, my eyes were so badly infected I couldn’t see. Every morning I’d wake up with my eyes crusted shut and had to soak the crust off just to open them. So painful and uncomfortable, I was really suffering. All this time I’d also been missing school.

It wasn’t until my mom took me to an opthalmologist that I got prescribed antivirals pills and eye drops. He said I was lucky that the infection didn’t cause any lasting blindness.

At least now I know to demand I receive either the medication I need or a cogent argument as to why I’m wrong about what medication I need. Not just “ehh I think antibiotics would be a better fit”.

 

[heapsreal]

They use to say it's a hit and run infection or some sort of stress, so initial trigger is gone but left us with neurological and immune dysfunction but I think many could have a chronic infection going and also the damage from the initial hit.

It's also possible to have had a severe flu infection and once it's left and immune system is down an old ebv infection could reactivate.

There were several stories of people who got covid and remained ill as ebv had reactivated. So covid was the trigger and ebv has kept the cfs going.

There's no one cause of cfsme I believe but multiple sub groups, that should be treated individually.

 

[2Cor.12:19]

How many of you started the me/cfs after having epsteinn barr?

@waitingyet Me- Absolutely! 1986 (39 years ago). I was extremely ill literally overnight. Did not test positive for mononucleosis, but did test positive for acute EBV. It attacked my nervous system. Was bedbound for 3 years then bounced back and forth for decades from between 30%.-70% while collecting an assortment of other co-morbid conditions. Eg; Hashimoto’s, sleep apnea, tinnitus, POTS, etc.

Because of how the EBV virus initially impacted my nervous system, I later developed severe sensor-motor large fiber axonal Polyneuropathy. As I’ve aged (73 now) my ME/CFS has worsened again and I’m mostly housebound. Plus the additional fatigue and nerve damage in my legs caused by the neuropathy has caused me to need an electric chair when I need to go out.

I recently started with a smart new young neurologist who explained why/how my initial EBV infection triggered ME and damaged my nervous system. I mentioned that in the past I’d had drs try to tell me I needed a psychiatrist. Lol! But he was adamant and said no, mine is a post-viral neurological disease. He explained that not all EBV infections present with respiratory symptoms (mine did not). I knew what he said was true from decades of doing my own research, but it was extremely gratifying to hear a neurologist confirm it and add some extra information.

I believe EBV and the way some of us respond to it. will end up being the culprit for many ills.

 

[Viala]

Nowhere near any virus in my case and it was mostly gradual. Can't really say what caused it 100%, I suspect at least a few things, a lot of it is diet and digestion related, but not everything.

 

[Wishful]

Don't let them trick you into thinking the EBV link is not legitimate or has been disproven.

No one tried to convince me that EBV isn't the cause of ME; I just don't find the evidence for it convincing.

From my personal experiences, I don't see a viral infection a likely mechanism for explaining the rapid on/off switching of state, or the effects of gut chemicals (food intolerances, microbiome changes).

I can imagine possible mechanisms for ME to be responsible, such as by existing inside brain cells and altering their function, and that scenario could possibly result in the switching and chemical sensitivities, but seems low probability to me.

If EBV was responsible, I'd expect more gradual increases in symptom severities, as the virus spreads, and more cases where the symptoms gradually reduce or even go into complete remission, as the immune system gets better or worse at dealing with the virus. The variable responses to other viral infections would fit that, but from the responses I've read, the severity generally goes back to what it was before the other infection, which doesn't fit. Likewise with antiviral treatments.

AFAIK there hasn't been any evidence that PWME have more EBV particles or traces than other people. I have read explanations for that (the virus is unusually good at hiding), but to me those sound more like excuses for continuing to ask for funding rather than proof that the virus can evade detection or control by treatments.

To me, the focus on EBV is likely because some of the symptoms are similar (Does EBV cause genuine fatigue or is it like ME's fatigue-like symptom?) and that many PWME feel (since no one can prove what triggered their ME) that EBV was their trigger and it's an easy answer and easy to get funding approval for, even when they can't provide supporting evidence.

Are their other viruses that cause similar fatigue-like symptoms that are also reported as ME triggers?

 

[cfs since 1998]

From my personal experiences, I don't see a viral infection a likely mechanism for explaining the rapid on/off switching of state, or the effects of gut chemicals (food intolerances, microbiome changes).

You said the other day you don't meet diagnostic criteria for ME, so you don't have ME. Your personal experience therefore can't be used as evidence to dispute any theories about what causes ME.

No one tried to convince me that EBV isn't the cause of ME; I just don't find the evidence for it convincing.

It's hard to accumulate convincing evidence when the disease is so under-funded and the US government deliberately sabotaged the EBV hypothesis specifically.

It took until 2022 before EBV causing MS became a generally accepted scientific consensus and they have more than 10 times the research than we do.

If EBV was responsible, I'd expect more gradual increases in symptom severities, as the virus spreads, and more cases where the symptoms gradually reduce or even go into complete remission, as the immune system gets better or worse at dealing with the virus. The variable responses to other viral infections would fit that, but from the responses I've read, the severity generally goes back to what it was before the other infection, which doesn't fit. Likewise with antiviral treatments.

If patients had the kind of immune suppression that is seen in AIDS and transplant recipients that might be true, but the immune system is dysfunctional in a more subclinical way. All people with EBV have a host-virus set point. Antiviral treatment is marginal when the host immune system is suppressed; for example, prophylactic antiviral use in transplant recipients can reduce, but not eliminate, the risk of severe EBV/CMV reactivation. That's because the host immune system still has to kill infected cells in order to reduce the viral load. There are several studies that suggest the immune system in ME/CFS patients is "overwhelmed" by "viral overload" (e.g., https://pubmed.ncbi.nlm.nih.gov/24343819/). These same kindo f disturbances in immune function are seen in EBV-associated autoimmune diseases like rheumatoid arthritis; RA has been found to be comorbid with ME/CFS in several studies.

AFAIK there hasn't been any evidence that PWME have more EBV particles or traces than other people. I have read explanations for that (the virus is unusually good at hiding), but to me those sound more like excuses for continuing to ask for funding rather than proof that the virus can evade detection or control by treatments.

EBV was found in Plasma at a rate 6 times higher than controls in 2020 (https://pubmed.ncbi.nlm.nih.gov/32129496/). And EBV was found to be more frequently detectable in sputum and at a higher viral copy number in ME/CFS than matched controls (https://pubmed.ncbi.nlm.nih.gov/40143349/). And yes, EBV is known to "hide" in tissues such as tonsils, lymph nodes, spleen, and bone marrow.

Are their other viruses that cause similar fatigue-like symptoms that are also reported as ME triggers?

Research like the two studies above found no difference in detection rates for other viruses; only EBV. Other viruses, like H1N1 influenza and SARS-CoV-2, seem to trigger ME/CFS at much lower fequency that EBV. As other infections activate the immune system, they can cause EBV reactivation or increased viral load through latent replication (B cell clonal expansion).

 

[Rufous McKinney]

some people have developed ME after a bout of the flu. Some after vaccinations. Some after COVID.

Its could be that EBV is reactivating or otherwise capturing our neuroimmune systems-but isn't noted because its the Flu or the Shot or the COVID that we notice.

 

[Rufous McKinney]

Nowhere near any virus in my case and it was mostly gradual. Can't really say what caused it 100%, I suspect at least a few things, a lot of it is diet and digestion related, but not everything.

But:

they found, for instance, that asymptomatic COVID cases can develop Long COVID in which a subset will end up with ME. It's less likely but still it can happen. Something accounts for it. But what.

https://pmc.ncbi.nlm.nih.gov/articl...out the long-term,most frequent symptoms [16].

 

[waitingyet]

It's hard to accumulate convincing evidence when the disease is so under-funded and the US government deliberately sabotaged the EBV hypothesis specifically.

It took until 2022 before EBV causing MS became a generally accepted scientific consensus and they have more than 10 times the research than we do.

Why did they sabotage the EBV hypothesis? This illness seem like a curse, little research, people saying it is fake, psychological.. I feel abandoned

 

[Rufous McKinney]

Why did the sabotage the EBV hypothesis?

there is a long and sordid history here. Books have been written. You can read about it. Things were real bad in the 1980s. Then we got on the cover of Time Magazine. Lies were told, and lies live longer than truths, it seems.

 

[Rufous McKinney]

At the time, I marched right into the doctors office with my mom like “Hey doc! I’ve got a bad case of herpes and need antiviral medication!”

I assume you are a "younger person"......who has had access to the Internet which is now our Encyclopedia of All Things.

I see no reason that an Eleven year Old would Also be capable of suggesting something to your doctor because you talked to people and read about it.

 

[2Cor.12:19]

there is a long and sordid history here. Books have been written. You can read about it. Things were real bad in the 1980s. Then we got on the cover of Time Magazine. Lies were told, and lies live longer than truths, it seems.

@Rufous McKinney @waitingyet @cfs since 1998
Implications of EBV involvement in many cases of ME/CFS may be coming full circle . I got sick in 1986 during the “Yuppie Flu” outbreak at Incline Village NV. Daniel Peterson and Paul Cheney were the physicians there who became some of the first researchers. Although EBV was prevalent among those cases it was ruled out as a cause early on. Interestingly, Peterson now heads the Simmaron research institute that published this article recently. Looks like EBV may very well be in part the culprit in many ME cases after all, and also in many other diseases. This explains the latest research on that.

“Nobody until now, though has attempted to complete the circle, and bring that "original gangster" in ME/CFS - Epstein Barr Virus - and the new guy in town – neuroinflammation – together. Could EBV be causing or contributing to the neuroinflammation present in the disease?”

https://www.simmaronresearch.com/bl...us-neuroinflammation-chronic-fatigue-syndrome

 

[Viala]

But:

they found, for instance, that asymptomatic COVID cases can develop Long COVID in which a subset will end up with ME. It's less likely but still it can happen. Something accounts for it. But what.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9863678/#:~:text=Research about the long-term,most frequent symptoms [16].

That's also possible. What I found interesting is that I can track some of my symptoms even to when I was a child, some reactions that could be considered a very early stage, and a virus or any infection could have started it back then. It could be dormant most of the time and then under the right conditions developed into ME.

I am a fan of nutritional deficiencies theory, and they alone could cause viral susceptibility, but then a virus could also wreak havoc on it's own irregardless. It continues to be the chicken and egg scenario. I really would like to know at some point what was the actual culprit.

 

[Wishful]

You said the other day you don't meet diagnostic criteria for ME, so you don't have ME.

I did meet the criteria, and then managed to block one aspect (PEM). All the rest of the symptoms and responses remained the same. So, I put it down as limitations on the criteria, which are simply a "committee's best guess" since no one can test for ME.

 

[Rufous McKinney]

I got sick in 1986 during the “Yuppie Flu” outbreak at Incline Village NV. Daniel Peterson and Paul Cheney were the physicians there who became some of the first researchers

I was my version of Mild, back then. The odd part of all this is I was often up at Tahoe, as I'd work around there in the woods and I was employed by a lab studying the water quality of Lake Tahoe. All that was going on and I was in a parallel universe, mere steps away. There was a connection on some of the theories, that include an Algae Bloom and I was the lab's Algae Expert (lakes).

This is back during the era of Having Babies. I was super sick anytime I was Pregnant. I managed to produce one child that made it. I was acutely ill heading up to Tahoe, and frankly never wanted to see that place again.

 

[Rufous McKinney]

w

Although EBV was prevalent among those cases it was ruled out as a cause early on.

We can't have something "contagious". That would be messy, and inconvenient.

Just do not donate blood, as "something" might get passed on to the next person., But its not contagious.

 

[Rufous McKinney]

I am a fan of nutritional deficiencies theory,

for me everything Problem started with Food Allergies upon eating Food. I was breast fed. But given food at two months.

So THAT is the cause of my lifetime of challenges?

 

[waitingyet]

w

We can't have something "contagious". That would be messy, and inconvenient.

Just do not donate blood, as "something" might get passed on to the next person., But its not contagious.

Exactly. We can't donate blood (at least in UK is forbidden) but we don't have nothing aham..

 

[2Cor.12:19]

I was my version of Mild, back then. The odd part of all this is I was often up at Tahoe, as I'd work around there in the woods and I was employed by a lab studying the water quality of Lake Tahoe. All that was going on and I was in a parallel universe, mere steps away. There was a connection on some of the theories, that include an Algae Bloom and I was the lab's Algae Expert (lakes).

This is back during the era of Having Babies. I was super sick anytime I was Pregnant. I managed to produce one child that made it. I was acutely ill heading up to Tahoe, and frankly never wanted to see that place again.

@Rufous McKinney - Such a coincidence. Yeah, I wasn’t living there at the time (though I’d lived there in the early 70’s. ) But I had passed through Incline on my way to Yerington to see my parents shortly before getting horribly sick with EBV. At the same time Yerington was also having a large (about 200) out break that was never publicized. I had spent several hours in the Yerington ER with one of our kids who had an ear infection. I always wondered if I picked up EBV there or passing through Incline on my way back to Sac.

Interesting you worked doing water samples at Tahoe. My SIL did that too for many years with the UCDavis project . Small world.

 

[Wishful]

Just do not donate blood, as "something" might get passed on to the next person., But its not contagious.

The bureaucrats can't find a certified expert to sign something stating that ME is 100% not contagious, so they can't cover their own butts that way, so they take the safe solution, that "We dont' know for sure that it isn't contagious, so for public safety, we're assuming that it might be." It doesn't matter that there aren't any confirmed cases of it being transmitted from one person to another, butt-covering comes first.

Also, while ME might not have "something in the blood" that will cause ME in the recipient, it could still cause other temporary medical problems, and people who need blood transfusions really don't need that. I don't believe that my blood would inflict ME on someone else, but I stopped donating blood because I didn't know for sure that something in my blood couldn't cause problems.