Viruses hiding in tissues
Path to a cure for myalgic encephalomyelitis?
For decades I have heard theories about how myalgic encephalomyelitis (ME) is caused by a misbehaving immune system. A virus comes along, then the immune system clears it.
The theory is that instead of going back to normal, the immune system is confused and keeps "acting sick". Another theory is that patients are just acting sick based on false illness beliefs. This theory has led to harmful treatments like graded exercise therapy (GET) and cognitive behavior therapy (CBT) with expectation of a full recovery.
Neither of these theories ever made sense to what I experienced. I feel like I am still fighting the virus that started my chronic illness journey 34 years ago.
Recently, I have seen more research into an hypothesis that ME (as well as Long COVID) is the result of ongoing viral persistence. Our immune systems aren't confused. They are responding as designed in response to evolving viruses that have learned to hide from our immune systems.
I came across an article from the 2009 issue of Cell, Redefining Chronic Viral Infection. It offers insight into some of the more recent work into viral persistence in ME as well as Long COVID. The understanding that viruses maintain a chronically ill host in order to survive makes a lot of sense to me. The article states:
"It is important to realize that viruses that rely on a living but chronically infected host for their own survival must carefully avoid mechanisms that overwhelm immunity and kill their hosts.
Indeed, given the rapid pace of viral evolution, it stands to reason that viruses that are relatively benign clinically, despite establishing chronic infection, would have evolved to greater virulence if this was advantageous."
Research into Persistent Viruses
Researchers at Polybio Research Foundation have been discussing viral persistence for a while now with an emphasis on looking for viruses hiding in tissues. Amy Proal, of Polybio, details evidence for viral persistence in a video posted on their website HERE.
In the video Amy Proal talks about looking for viruses in the intestines. Taken from the transcript of the video:
“...the things that has made me particularly interested in intestinal tissue is one of the researchers that I most respect in the me/cfs research community, a scientist named Dr John Chia. For a long time he has been collecting intestinal tissue samples from patients with me/cfs via endoscopy and he has stained hundreds of those samples for enteroviruses…
Dr. Chia participated in writing the ME International Consensus Primer for Medical Practitioners (ME IC Primer) and this primer references some of his work including CFS is Associated with Chronic Enterovirus Infection of the Stomach which states:
“A significant subset of CFS patients may have a chronic, disseminated, non-cytolytic form of enteroviral infection, which could be diagnosed by stomach biopsy.”
The testing on page 11 of the ME IC Primer includes recommendations to test for various viruses including enteroviruses by stomach biopsy.
I have been following Amy Proal and Polybio on social media to learn more about the viral persistence research. Amy Proal posts on X (formerly Twitter) regularly - follow her at: https://twitter.com/microbeminded2
Treatment based on persistent viruses
Some of the doctors specializing in treating patients with ME have used antivirals and immune modulating treatments with some success in improving the quality of life for patients. In 2015, Dr. Martin Lerner (deceased) wrote an article, Dr. Martin Lerner’s Treatment Protocol for ME/CFS, which covers some antiviral treatments.
IV immunoglobulin (IVIG) has also shown benefits for some patients but research has been lacking and access has been limited.
While I have experienced improvement from antivirals like Famvir, Acyclovir and Valacyclovir, the side effects have made it impossible to use them for long periods of time. Approaches that focus on boosting my immune system and combating viruses have been the most effective for me to stabilize my baseline.
Stratifying Patients
I think this understanding of viral persistence points to the need for more stratification of patients lumped under the “ME/CFS” umbrella.
For those who have fully cleared the precipitating virus but are dealing with the harmful aftermath caused by the illness, a treatment based on replenishing nutrients combined with diet and gradually increasing exercise may be effective.
For those patients who are dealing with viruses hiding in their tissues, a treatment approach based on combating any virus causing chronic symptoms is needed.
Doctors need to know how to differentiate between those patients who are helped by exercise and those who are harmed by exercise.
The testing on page 11 of the ME IC Primer along with the screening guidance to diagnose myalgic encephalomyelitis seems like a good way to differentiate between those two patient groups. A place for every patient to start is self screening using the International Consensus Criteria (ICC). The webform provided by the Swiss Society for ME & CFS makes it easy to discern if a person fulfills the ICC.
The Future
Research into viral persistence gives me hope we are moving toward an understanding that neither the patient or the immune system is "confused". What is happening to us is fully understandable when viewed through the lens of an ongoing virus that is hiding in our tissues.
My hope is that much more funding will be made available to those researchers who are looking for tools to screen for and fight viral persistence.
This viral persistence may be a key to many diseases. When researchers find a cure for myalgic encephalomyelitis, I think it will change the face of all medical care.
This line of research into viral persistence gives me hope we are on a path to a cure.
Colleen
Information provided here or in comments is not to be considered medical advice
Sources
Redefining Chronic Viral Infection, Herbert W. Virgin,E. John Wherry,Rafi Ahmed, Publication: Cell; Publisher: Elsevier. Date: 10 July 2009
Chia, J K S, and A Y Chia. “Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach.” Journal of clinical pathology vol. 61,1 (2008): 43-8. doi:10.1136/jcp.2007.050054
The National Library of Canada Cataloguing-in-Publication Data: Myalgic Encephalomyelitis – Adult & Paediatric: International Consensus Primer for Medical Practitioners. ISBN 978-0-9739335-3-6
I believe what was found nearly 40 years ago by virologists Elaine Defreitas (an HTLV-2 like virus) during the Lake Tahou outbreak is what's behind many of the Chronic Fatigue Immune Deficiency Syndrome cases. She had documented overwhelming evidence. They could have had a cure by now. For some reason, the CDC did not want to reproduce or validate her findings. Currently, I think many of these scientists / virologists are going down the wrong investigational path for these diseases. Take a more detailed look at what was found 40 years ago.
Makes sense to me. I know mostly first hand of a few people who were helped with a combo of HIV drugs. Took 4 months to start working in one. "They" will give HIV drugs to babies, but not to somebody who is really sick, is my big complaint about that. I have a FB friend who actually saw Lerner, not long before he died. Not helpful and in fact hurtful. She had been sick most of her life and just throwing antivirals at somebody doesnt help. Support is needed, in my opinion. I read a lot of his stuff years ago and my conclusion then was something like the longer you had been sick, the less likely to help. I got my virus info about 15? years or so ago, during the surge of Fibro and Fatigue clinics, Teitlbaum. Dropped a lot of $$ there. At that time, you could only get antibody titers, not actual live virus. I think it remains that way.?? I had high EBV about 10 years ago, I am assuming that was antibody titers, but I dont really know.