Epstein Barr Virus (EBV) and MS

The association of the Epstein Barr Virus (EBV) and multiple sclerosis is one that has evolved over of decades of research.  95% of all humans carry the dormant or "latent" EBV virus.  But in people with MS, there is an activation of the virus, which is seen in tissue of autopsied brains. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2118531/ 

I wrote about this connection exactly 10 years ago.  https://ccsviinms.blogspot.com/2012/01/hypoxia-reactivates-latent-ebv-january.html

EBV is in the news a decade later, because researchers at Harvard have a new study published in Science  https://www.science.org/doi/10.1126/science.abj8222

Their conjecture is that if people are never infected with EBV, they will never develop MS.  Well, that would be wonderful!  Incredible.  An end to MS.  An EBV vaccine will be developed, and it may well help future generations.  But what about the people alive today on the planet, the 95% of us who are already infected with EBV?  

Back in 2011, researchers at Buffalo Neuroimmaging Analysis Center published a paper in Expert Reviews on how venous stasis (or impeded blood flow out of the brain) might be responsible for a reactivation of EBV.  This paper no longer exists online, which is heart-breaking to me.  The only place I found links to this hypothesis was in my writing.  

But I would like to suggest that this be further explored. 

The association between EBV infection and CCSVI has not yet been explored; however, it could be hypothesized that venous stasis in the superior saggital sinus due to extracranial outflow impairment could affect the drainage of bridging veins that pass through the subarachnoid space (near the meninges and EBV-infected B-cell follicles) and contribute to EBV activation. The venous stasis hypothesis in the SSS may contribute to understanding why so many different viruses and bacteria [3,111] have been linked to increased MS susceptibility risk over the last 50 years.

http://www.expert-reviews.com/doi/abs/10.1586/ern.11.117

I have stopped following MS research and writing about it for many reasons.  Jeff continues to do quite well, and I am not the person to be giving out medical advice.  

Follow the ISNVD.  Listen to experts.  Take care of yourselves. 

Be well,

Joan 

MAGNIMS consensus recommendation: Measure brain and spinal atrophy in MS

Readers of this blog have already learned about the importance of monitoring their gray matter.  Volume loss, or the shrinking of tissue, is also referred to as atrophy and neurodegeneration.  I explain this process in more depth here: link  The MRI measurement of atrophy has been proven to be more indicative of MS progression, when compared to white matter lesions.  (The fact that we still use a seventy year old mouse model to measure white matter lesions for MS drug efficacy boggles the mind.)  This paper advises that MS specialists look at other MRI markers to understand how treatments might be impacting loss of tissue and MS progression.

A consortium of international MS experts published this review earlier in the year, right before COVID, and I missed it.  It was not sponsored by any specific drug company.  The MAGNIMS study group (Magnetic Resonance in Imaging in MS) was comprised of MS experts from seven countries.  I highly recommend discussing this research with your doctor, to make sure you understand how your own gray matter is doing.  

link to MAGNIMS study in Nature

The authors discuss lifestyle factors which impact brain volume. I like to call these factors "the things we can change."   There are things we can do today to maintain our gray matter.  The heart brain connection is real, and vascular health impacts our brains.

Many lifestyle factors, including physical activity124, influence estimates of brain volume. A higher level of alcohol intake has been associated with a higher rate of brain atrophy over a 6-year period115 and with a specific pattern of regional involvement of the white matter and grey matter125. A similar effect has been described for cigarette smoking and substance abuse (for example, marijuana use)115,126. Many systemic conditions, such as diabetes, chronic kidney disease, hypertension, obesity and vascular conditions can also accelerate brain atrophy115,127,128.

Please notice the mention of vascular conditions.   All of this is new.

I've written about how Jeff's gray matter atrophy was reversed thanks to vascular and lifestyle intervention.  This post is from 2018 Celebration!   Jeff's good health continues in 2020, and he is still hiking, biking, composing, and active.  He's also down to his high school track star weight (178!) and has built up muscle tone.  He remains my inspiration.  Our goal, God willing, is to stay healthy and active, and live to see the end of this pandemic.  We work on managing the things we can change--by eating whole foods, moving every day, getting sunshine, staying connected to family, praying, meditating, making music, laughing, helping others, and letting go of the factors beyond our control.  I've mentioned the serenity prayer before.  link Written in the trying 1930s by Reinhold Niebuhr, American theologian, it is a reminder to take each day at a time, especially as we face difficult times. 

Here is to getting through this- with renewed health-- physically, emotionally, spiritually.

with love from smokey California,

Joan

Living in a post truth world

Hello dear readers,

I hope that you and your families and friends are surviving this most challenging time.  Please let me know how you are faring in the comments.  I've thought about our group members many times, praying that you've been able to stay sane and somewhat healthy, safe at home.

Jeff and I remain well.  We continue to follow The Endothelial Health Program, more rigorously than ever.   Exercise, sleep, sunshine, lots of fruits and veg, time in nature, laughter, meditation and music are helping us stay healthy and sane.  We are in touch with our family via Facetime and phone calls.  Work, meetings, and social interactions now happen on Zoom.  We get outside every day for exercise, recreation or yard work, while maintaining social distancing and mask wearing in public.   We have several family members who have lost their jobs.  I retired and took my studio singing pension early at 58.  Thankfully, Jeff continues to compose and has several projects in the works.  You can hear his beautiful music on the new Netflix documentary Athlete A. 

We realize how fortunate we are not to have to work outside our home to make a living. We are deeply aware that this has been an extrememly difficult time for all, most especially our front line workers, service workers, hourly wage earners, as well as our underserved minority communities, and those with underlying chronic illness and disabilities.

This kind of unrelenting stress and anxiety is hard on people with MS.  So is not able to see your doctors or physical therapists, get massages, treatments, or visit with friends.  It's hard not to go to a religious group gathering,  a family event like a wedding, or simply go outside for a change of scenery.  All of these situations are impactful, and can affect your health.  In the midst of this, I hope you are able to find activities that bring you a bit of sunshine and joy.  I've seen many MS friends taking joy in gardening, listening to music, enjoying family, and being in nature.

Over the years, you all know I've handed out a lot of unsolicited advice. I've tried to back up the medical advice with peer-reviewed and published science, not just anecdotal stories. That's why I always include links to medical journals in my posts.   I've joked about being your bossy Mom, and telling you how to eat or stay active.  But this time of forced stillness has given me the opportunity to ask myself WHY I have felt it so important to share all that we learned to help Jeff heal.  

So much of what we click, hear and read today is about identity and narrative.  There are thousands of falsehoods, conspiracy stories, invented tales, all created to mislead society.  I've been horrified to see what people are being persuaded to believe, especially in regards to this current pandemic.  Experts, researchers and scientists who have trained and have insight are being discounted for heresay, anecdotal evidence, and downright dangerous advice.  This has happened throughout human history, when experts and intellectuals have been portrayed as "the elite," in order to sow discord in society.   A rise in populism around the world has put us in a very dangerous situation, where the average citizen no longer believes in scientific evidence.  Whether flat earthers, QAnon, anti-maskers, climate deniers; all deny scientific evidence in favor of a belief system that makes sense with a chosen story.

Believe me, I get the irony.  Jeff's healing experience has been thrown in the heap of anecdotal evidence and heresay.  The entire CCSVI investigation has been portrayed as quackery, and the vascular connection to MS and benefit of lifestyle intervention is still downplayed, even though the research began in medical journals and continues to be published.  But I contend that our understanding of lifestyle and vascular intervention in the healing process of MS continues to build evidence, and is based on the earliest scientific discovery of the central vein sign, discovered by Rindfleisch in 1863, and still seen today a a reliable biomarker in MS.  Inflammation in MS occurs around cerebral veins.  That's the truth.  We still do not know why.  https://ejrnm.springeropen.com/articles/10.1186/s43055-020-00185-3

So, who am I to even comment on any of this?  I'm surely not an expert, I have no medical degree or training.   I should have shut my trap years ago, not gone up against MS specialists or challenged my husband's neurologist.  I certainly should not have written or shared anything online.  I have participated in the exact same narrative creation and populist rhetoric I find so abhorrent today.  I have spun a tale, and sowed confusion.  I am exactly part of the problem.  Ironic, huh?

I would suggest readers follow the ongoing work of the International Society of Neurovascular Disease, for continued research into the heart/brain connection.   These researchers are continuing to advance the science behind CCSVI, vascular contributions to dementia, and the impact of lifestyle on the heart brain axis in all diseases of neurodegeneration, including MS.   https://isnvd.org

Also keep your eyes on the work being done at UCSF at The Gladstone Lab.  Researchers there are honing in on toxic blood particles found in the MS brain, and linking the clotting protein fibrinogen to inflammation and decreased myelin repair.   

https://gladstone.org/news/overcoming-obstacles-promote-repair-multiple-sclerosis

Do we get to pick and choose our truth?  Or is there an ultimate reality, beyond our personal narratives?   Our dear friend, theoretical scientist Brian Greene, has a brilliant new book Until the End of Time, in which he attempts to explain the emergence on life on earth.  Simple, right?   Brian's own life work helps me put things in perspective.  Evolution and entropy are tensions bound by gravity.  Gravity is the real, measurable force which binds us all--stars and humans alike.  There is mathmatical truth in gravity. As Brian states, "Life is physics, orchestrated."   Listen to Brian explain it, better than I ever could. 

 https://www.youtube.com/watch?v=YXfMN3mZa0Y   

But even in this truth, Brian admits we still do not have scientific proof as to WHY humans are conscious beings.  I have a theory on this, as a religious person who believes in a creator God, but I don't have an equation.

I would submit that even in this unknowing, there is still a core of scientific fact. I cannot chose to ignore the rules of gravity, even though I might not like them, or don't completely understand them.  There are so many brilliant people like Brian, experts and reseachers, who will spend their lives exploring topics we can never understand.  These exceptional minds are working on COVID19 today.  Do we ignore them, simply because they work in difficult concepts?  I may not know the mathematical formulae which prove gravitational force, but I still live in a world governed by gravity.  I may not like the fact that I have to wear a mask or distance myself right now, but I trust the trained epidemiologists exploring the corona virus. 

Listen to the experts.  Believe the smart people. Think critically.  Question when individuals spout out theories formed "in my gut," as opposed to in a lab.  When we get on an airplane, we all want the most experienced captain in the cockpit, not the most charismatic one.  We want our surgeon to be the one who's the most well-trained, not the one who entertains us.  

Most importantly, don't listen to me.  Find your own team of doctors and specialists who you trust, who can take care of you, who will tailor your lifestyle program to suit your needs.   That's the truth.

Here's hoping we all get through this,

Joan