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New ME/CFS Research re EBV Continues To Tie Back Into Research Links From the Past

Wally

Senior Member
Messages
1,167
The Simmaron Research Foundation website and Cort Johnson’s Health Rising website posted some interesting tidbits of information that may not have been seen by some people/patients in the U.S. because it was published on a U.S. rational holiday - Independence Day (July 4th).

I found the information provided in the blogs to be quite interesting especially because the topic was primarily focused on EBV (which has almost become like a bad rash in the ME/CFS research world that won’t let you ignore it and you feel compelled to keep scratching it.)

Now that exosomes have become a hot topic in the ME/CFS research world, the itch has become more intense especially when the rash seems to point toward EBV and exosomes doing a dance together.to create one raging party from hell inside of our brains..

Here is the link to the Simmaron article/blog and some additional commentary on the Health Rising website which covers a variety of intertwined topics such as EBV, HHV-6,, brain inflammation, duTPase Proteins, exosomes, Dr, Ronald Glaser, NIH ME/CFS grant approval frustrations and a few other interesting puzzle pieces to be added to the ongoing saga of research into this “mysterious” illness with more names, theories, twists and turns than a nine headed Hydra.

See, https://www.healthrising.org/blog/2...ld-it-be-causing-neuroinflammation-in-me-cfs/
and
http://simmaronresearch.com/2019/07/epstein-barr-virus-neuroinflammation-chronic-fatigue-syndrome/


A couple of other recent (2019) threads here on the PR Forum that may be of interest in that they relate to some of the topics covered in the links noted above,
1) https://forums.phoenixrising.me/thr...tory-mediators-implications-for-me-cfs.76123/
and
2)
https://forums.phoenixrising.me/threads/research-re-exosomes-and-me-csf.75840/
 
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nyanko_the_sane

Because everyday is Caturday...
Messages
655
Well I still think EBV has been plaguing me at every turn.
0wBrVD.gif

If only we knew how to stop this crouching tiger hidden dragon.
 

Sidny

Senior Member
Messages
176
I subscribe to the theory that viruses like EBV, HSV, Enteroviruses etc are at the root of most chronic diseases including not only ME/CFS but various mental disorders and significantly contribute to the diminishment of the human experience.

Until we develop better strategies that either eradicate the viruses completely or vaccines to prevent them all together I’m afraid we’ll all just continue to suffer.
 
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nyanko_the_sane

Because everyday is Caturday...
Messages
655

Wally

Senior Member
Messages
1,167
FYI - Here is the link to the first blog in the companion set of EBV blogs published in the last week that review both past and present EBV research. This first EBV blog focuses on ME CFS research from 2008 by Jonathan Kerr* related to EBV Induced Gene 2 (EBVI2). http://simmaronresearch.com/2019/06/epstein-barr-virus-ebv-genes-chronic-fatigue-syndrome/.

*(I remember thinking what a loss to the MECFS research world when this scientist abruptly exited ME CFS research following the XMRV controversy. Always wondered what information/ideas/impressions may have been silenced because of how this researcher was treated by the powers in control of the “final” ME CFS XMRV narrative.)
 

Wally

Senior Member
Messages
1,167
For those who might be curious to go back in time here is a thread discussing Dr. Kerr’s exit from ME CFS research following his gene studies re ME CFS and subsequent information about where his research has taken him in the subsequent years. It is interesting to see what projects he has worked on since the time of the very, very contentious period of ME CFS research history.
https://forums.phoenixrising.me/threads/whats-happened-to-dr-jonathan-kerr.10800/
 
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Rufous McKinney

Senior Member
Messages
13,251
"I have some kind of Chronic Eppstein Barr" has served to internally explain this Crappy Mystery for much of my life.

When the Doctors STARED, I simply go home and decide- whatever, i know this virus somehow has captured this body. And it has PERMISSION to VACATE.

THANKS FOR POSTING THIS: WILL ENJOY READING IT.
 

Xandoff

Michael
Messages
302
Location
Northern Vermont
"I have some kind of Chronic Eppstein Barr" has served to internally explain this Crappy Mystery for much of my life.

When the Doctors STARED, I simply go home and decide- whatever, i know this virus somehow has captured this body. And it has PERMISSION to VACATE.

THANKS FOR POSTING THIS: WILL ENJOY READING IT.

I knocked down 17 years of chronic E.B.V. with Valganciclovir, Lysine and Monolaurin.

I take Solaray L-Lysine and Monolaurin 1:1 Ratio immune support because it is convenient, I take 3 a day and my EBV labs are as low as they go and still be present.

There are better Monolaurin sources available, but I like that SOLARAY combines the L-Lysine 500mg with the Monolaurin 500mg at 1 to 1 ratio. Both Suppress EBV!


Lyme had reactivated my dormant EBV (mono)in 1999, EBV then produced false negatives on all my Lyme tests and no one tested me for EBV so I went 15 years undiagnosed /mis-diagnosed.

Living in Hell and having full blown EBV with Lyme and Doctors telling me it was all in my head is an experience I am never likely to forget or get over.

It helps a lot when you get the EBV under control.

Goodluck!

Michael
 

Tammy

Senior Member
Messages
2,181
Location
New Mexico
I knocked down 17 years of chronic E.B.V. with Valganciclovir, Lysine and Monolaurin.
Congratulations! It's not easy to knock down this mother. I've also managed to knock down 20+ years of EBV beast. I was not able to take any of the prescriptions for various reasons, but the natural anti-virals have fortunately worked for me. I agree with you........."it helps a lot when you get the EBV under control".
 
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Xandoff

Michael
Messages
302
Location
Northern Vermont
Congratulations! It's not easy to knock down this mother. I've also managed to knock down 20+ years of EBV beast. I was not able to take any of the prescriptions for various reasons, but the natural anti-virals have fortunately worked for me. I agree with you........."it helps a lot when you get the EBV under control".
Thanks Tammy!

I had full blown EBV in 1999 and I got caught up in the IDSA-CDC-Denial that it was all in my head. They refused to test me for EBV because that would have begged the question what re-activated my EBV-MONO?.

When Lyme re-activates your dormant EBV-MONO it makes everything 100 times worse. Anyone who suspects they have Lyme Disease and knows that they had EBV-Mono as a teenager should know that EBV is known to produce a False Negative on Lyme Tests.

I tested Negative on Three different ELISA Tests because of EBV (mono)!

I actually had to knock down my EBV-Mono so I could finally get a Positive Western Blot in 2014 and receive treatment.

My wife had breast Cancer and we learned that all Breast's removed because of Cancer in America all test positive for Epstein Barr Virus. My wifes Surgeon confirmed this.