Community

I'm fortunate enough to be at the Canadian Neurovascular Health Society Conference this weekend.  I say fortunate for many reasons.  I have the gifts of mobility, financial resources, and free time necessary to get on a plane and fly to another country to have this experience.  And the older I get, the less I take this for granted.  I'll go down to breakfast soon, and hear Dr. Zamboni address us, via Skype!
https://www.facebook.com/CanadianNeurovascularHealth

Sandra Birrell and her husband Landon, along with the incredible CNHS board and dozens of volunteers and supporters, have put on a tremendous event.  The venue is wonderful, the food has been nourishing, the speakers are all interesting and passionate, and my fingers are flying on the keyboard.  There is something here for everyone.  It's wonderful to see old friends and new, and to share and connect and be physically together.

I don't have MS.  I found this whole world of activists and disease specialists because I love someone with MS.  So, I always feel a bit strange and slightly self-conscious receiving thanks for my work.  Which happens whenever I get out to these wonderful events and see people who have been part of our virtual community for six years now.

I am more convinced than ever of the vascular connection to multiple sclerosis.  As the new, ground-breaking research continues to come in---on the lymphatic vessels of the brain, on the connection of the gut to the brain and the microbiome's influence on our blood brain barrier, and on the fact that all it takes to create MS is blood on brain tissue.  All signs are pointing to the connection.  And I have to admit, there is a bit of ego gratification in hearing the word "endothelium" coming from the speaker's podium.  I am proud of having a part in encouraging this discussion...yup, proud.  I think that's OK, but this fact also embarresses me.  Because, in all honesty, I know that all of this has been a gift.  And I feel compelled to continue to share and encourage.  None of us can do this in a vacuum.

Thanks to Amy, Sharon and Carol, and our discussion at dinner last night, I really got this message loud and clear.  If you have found any inspiration or motivation from this blog, please share it.  By that, I mean, get the information out to other people with MS.  You don't have to make them read my verbiage, simply be for them the kind of friend you think they need.  The kind of friend you need.  Can you encourage them to eat a more healthy, veggie and fruit-filled diet?  Can you be there for them, to take a walk, help with learning about supplementation and the blood tests needed to monitor Vitamin D levels or B12 levels.  Can you listen to them, help them deal with day to day stress?  Teach them a few deep breathing exercises, or strategies that have helped you get to sleep and stay asleep.  You know, all the stuff we share on line.  Because in the end, the spreading and sharing of this encouragement and knowledge in our communities--in all its forms--will be what means the most.

The science will come in.  It took 70 years for the EAE mouse model of MS to become a 20 billion dollar a year pharmaceutical machine.  This establishment fortress is not going to fall overnight, or even in a decade.  But that wall is beginning to collapse, as we remove one false brick at a time.  MS is many different things to each individual, but the strategies to keep people well are being outlined.  Good spinal and cerebral perfusion, good sleep, exercise, whole food nutrition, UV rays and Vitamin D, a healthy microbiome and probiotics, toxin and allergen removal, spinal and muscular alignment.  This is the foundation of the new approach to managing MS.  Focus on the individual, functional medicine, healing of the vasculature----and dealing with mechanical issues which inhibit healthy blood, CSF and lymph flow.  You can follow one of the many plans and diets being published and sold and be a loyal acolyte to a specific individual,  or you can go free-style, and find your own way.  Just know that the basics remain the same.

It's the community effort which is creating this new world.  The volunteers who put flowers on the table or stuff envelopes, send out e-mails, book venues and speakers.  The people who post on twitter, FB, and blog about the research.  The patients who learn about new treatment modalities and share their knowledge with others with videos and books and speaking engagements.  Every individual has a specific part to play, a talent to share.  That means you, too!

This is what community looks like.
Joan

A Single Drop of Blood...

....is all it takes to create MS.
Forget about requiring a rogue virus or some deranged auto immune reaction.
You don't need to inject mouse brains with foreign antigens and create EAE.

Just one bit of blood on brain tissue activates the immune system and creates MS demyelination.

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From the Gladstone Institute Press Release:
In the current study, published in Nature Communications, the scientists created a new animal model of disease to determine if BBB (blood-brain barrier) leakage can cause autoimmunity. They discovered that injecting just one drop of blood into the brain set off the brain's immune response, kick-starting a chain reaction that resulted in inflammation and myelin damage.

These findings offer a completely new way of thinking about how the immune system attacks the brain--it puts the blood in the driver's seat of the onset and progression of disease," says senior author Katerina Akassoglou, PhD, a senior investigator at the Gladstone Institutes and professor of neurology at the University of California, San Francisco. "This opens up the possibility for new types of therapies that target blood coagulation factors, upstream of autoimmune processes."

"Our results provide the first evidence that blood promotes T cell responses against the brain," says first author Jae Kyu Ryu, PhD, a staff research scientist at the Gladstone Institutes. "Not only did we confirm that the presence of blood in the brain recruits peripheral immune cells to the area, which is sufficient to cause myelin destruction, we also identified fibrinogen as the critical protein driving this process."

"These findings question a long-held paradigm that myelin-specific T cells initiate inflammation in the brain through activation of microglia and brain macrophages," says Scott Zamvil, MD, PhD, a professor of neurology at the University of California, San Francisco and co-author on the paper. "This study demonstrates that the original paradigm may also occur in reverse. Namely, initial activation of microglia and brain macrophages may activate T cells."

https://gladstone.org/about-us/press-releases/blood-clotting-protein-triggers-immune-attack-brain

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Why didn't we know this before? Shouldn't we know this???

Well, we do. We see this reaction in stroke and vascular dementia in humans. And stroke specialists have published on the immune system response to blood in the brain. But MS specialists don't talk to other doctors, and they have chosen to stick to the EAE autoimmune mouse model--come hell or high water-- and consistently ignore the vascular evidence. Here's a blog post I wrote about the autoimmune response in stroke back in 2010.
http://ccsviinms.blogspot.com/2010/12/the-autoimmune-response-in-stroke.html


You'd think this idea of blood in brain tissue would have been tested by now, especially since we know that people with MS have microbleeds in their brains, as seen on 7T MRI. Dr. Yulin Ge discussed this at the 2014 ISNVD conference. People with MS have tiny, pinpoint bleeds in their brains, only seen on the most powerful MRIs. Blood is not supposed to breach the blood brain barrier. But for some reason, in MS, it does.
http://ccsviinms.blogspot.com/2014/03/blood-matters.html

In 2015 we finally have an actual animal model, created by the innovative Gladstone Institutes (go, Silicon Valley!), demonstrating that injecting one single drop of blood into the brain begins an "immune response akin to MS."

The Gladstone Institute has been honing in on the blood for several years now. Dr. Katerina Akassoglou has published in the past decade on how leaking fibrinogen, a clotting protein found in blood, can trigger inflammation in the brain. http://www.nih.gov/news/health/nov2012/ninds-27.htm

Dr. Akassoglou's premise has been that fibrinogen causes neuronal damage to the MS brain. With this current study, Dr. Akasssoglou and her colleagues saw the actual result of this leakage--activation of the immune system.
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I would like to suggest that instead of rushing off to create the next MS drug bonanza--based on coagulation factors and blocking fibrinogen-- perhaps researchers would like to revisit MS disease etiology? Perhaps it is time to reconsider the vascular connection to MS? To study how altered venous hemodynamics might be affecting the endothelial wall of vessels, and creating permeability?

Maybe we should figure out what is causing these microbleeds in the MS brain, and why fibrinogen is there in the first place?

Want to cure MS? Let's discover the cause of MS.

Here is Dr. Yulin Ge's description of tiny micro bleeds seen in MS brains in vivo, with 7T MRI.
These pinpoint drops of blood precede demyelination.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2579786/

Dr. Mark Haacke's presentation on SWI technology and imaging the MS brain is also a good place to start.
http://www.ms-mri.com/presentations/Imaging%20Iron%20in%20MS%20using%20Susceptibility%20Weighted%20Imaging%20(SWI).pdf

Or how about Dr. Paolo Zamboni's "Big Idea" paper from 2006, where he outlines the similarities of MS and venous disease? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1633548/

In the past year, we have learned that the brain has an immune system and lymph vessels--that the brain's immune privilege is a myth. http://ccsviinms.blogspot.com/2015/06/rewrite-textbooks.html

And this week, we learn that a single drop of blood in the brain can cause MS---just like the micro bleeding seen on MRI.

We are in the midst of a huge paradigm shift in MS research.

Here's the preliminary program for the 2016 ISNVD conference in NYC next April. Lots of discussion on microvasculature imaging in MS. And Dr. Yulin Ge, Dr. Mark Haacke and Dr. Paolo Zamboni will be presenting! The keynote speaker will be the scientist who discovered the brain's lymphatic vessels, Dr. Jonathan Kipnis.
 Please come, MS specialists and researchers---I guarantee you will learn something.
http://isnvd.org/sites/default/files/Preliminary%20Website%20Program-Schedule%209-11-2015.pdf

Let's not let this moment pass us by. Get this research to your local universities.
Tweet about it, share it in your community. Ask your MS Society to fund further research into the vascular connection. Support groups like the ISNVD. www.isnvd.org Educate yourself and others in the MS community.

The vascular connection to MS is real.

It's as real as a single drop of blood.


Joan

Endo-the-what???

I know.  Reading medical words causes the brain to shut down.  I completely get it.
I've watched, as Jeff's eyes roll into the back of his head as I start discussing some new paper.  He just doesn't like medicalese in the same way I do.  And he teases me all the time.  While taking a bite of salad,
"So, is this good for my phytonutrient endothelial lifestyle?"
Or on a walk with the dog,
"Am I irridicating my endothelial dysfunction yet??"
Yeah, he's a really funny guy.  Thirty one years of his teasing me, since we got married in college.  The laughs just don't stop in our home.  Which is a good thing, since laughter is part of the endothelial health program!  :)

I know that I have become the broken record.  The pain in the neck naggy Mom who is always checking to see if you have a sweater, or brushed your teeth.

But I really can't stop harping.  Because your endothelium is so important.
Please, just hear me out.
Let me explain.

The lining of all 60,000 miles of vessels in your body---this includes arteries, veins and lymph vessels---is lined with your body's biggest organ (yeah, not that one, Jeff...)
It even serves as your blood brain barrier, to protect your brain from plasmic particles--like iron and coagulation proteins, or viruses, or bacteria--which are severely damaging to your brain tissue.

Your miraculous endothelium.  Say it with me,  en-do-the-li-um!!!  All of the tiny endothelial cells fit together to form a special lining, guiding the blood and lymph flowing inside your vessels.

Picture the waterproof lining roofers put on your roof before they add roof tiles. You've got your plywood layer down first, and you need to protect it (that's your body tissues).  So, the roofers put down a waterproof membrane (your endothelium.)  On top of that go the shingles (that's the vessel)  Once the rains come (bodily fluids), the health of your home DEPENDS on the waterproof lining doing it's job and channeling water into your gutters.  Even though the roof and plywood seem much stronger, they need that membrane.  If the waterproofing membrane has holes, or is in bad condition, you're going to have a problem.

Same thing with your endothelial layer.  If you've got a problem, it's called endothelial dysfunction.  And this problem is found in multiple sclerosis, heart disease, dementia and Alzheimer's, and a whole host of other diseases which are linked to heart and brain health.  Leaky and faulty endothelial layers allow plasmic particles into your brain and cause inflammation.  Faulty endothelial cells don't allow blood and lymph to flow smoothly and create slowed cerebral blood flow, or "hypo perfusion."


The good and bad news is that there are a lot of environmental factors that affect your endothelium.  That means there are things you can do, or not do, to help it.

When I started blabbering on about endothelial health to Jeff and all who would listen-- back in 2008---there wasn't as much research published on the link of endothelial health to MS.  But there sure is a lot more now.  link

I sent my program to Dr. John Cooke at Stanford, and he thought it made sense.
Here it is.  Please check it out.  It works.  Honest!!
http://ccsvi.org/index.php/helping-myself/endothelial-health

Don't let medical words keep you from the truth of the research.
There are things you can do, starting TODAY, to improve this lining.  To feel better, to decrease MS symptoms, to decrease MS progression, to increase health and vitality.

Endothelial cells are very forgiving.  They can heal and repair.
And that's why I'm going to keep harping and nagging and take the teasing (you hear me, Jeff??!!)

Learn about your endothelium.

Because you matter!
xo,
Joan