Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of the endothelium and heart-brain connection. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the auto-immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Tuesday, May 15, 2012


Just keep swimming

May 15, 2012 at 9:51am

In Finding Nemo, Dory the fish has a little song she sings, to keep Nemo from becoming too despondent...

When life gets you down, you know what you gotta do?
Just keep swimming, just keep swimming.

I had an interesting conversation with Dr. John Cooke at the Hubbard Foundation conference.  It was good to catch up with him.  We hadn't seen him in two years, since Jeff was up to Stanford for his one year testing.  He asked how Jeff was doing, and to what did I credit his health after venoplasty.   I told him that Jeff was much more fit now, then he was at his MS diagnosis.  He was down 15 pounds, and his aerobic capabilities were great.  He out paces me up the hills when we hike and bike, and is much more active in his daily life.

"That's great!"  said Dr. Cooke.  "He's keeping the blood flowing."  

Later that day, in his presentation, Dr. Cooke discussed how the endothelium likes fast blood flow.  Shear stress, or the stress caused by fast moving blood through our body, is good for our blood vessels.  It keeps them open, and flowing.

You see, the body and brain respond to aerobic exercise in many ways that are being studied in the MS population.  I know I don't have to tell you this---the terrible tragedy in MS is that as the disease progresses, your ability to move is shut down.  It becomes a vicious cycle.  Your disabilities increase, your ability to move decreases, your blood flow slows down, your pain and fatigue increase, your MS progresses.

I want to encourage you, like Dory, to find ways to just keep swimming.  Find ways to move, everyday.  It may not be pretty, but your heart and circulatory system need this.  When Jeff was first diagnosed with MS, he had trouble walking.  He started with an elliptical machine.  He couldn't do very much, and his legs hurt...but he did it, as best he could.  After venoplasty, he was able to get back on his bike.  He started slowly, with street rides, and then progressed to mountain biking, as his balance and endurance increased.  Every single day, he gets his heart pumping.  And his veins are staying open, and his gray matter looks normal on MRI.

Here's some research to encourage you:

Friday, April 27, 2012

Clinical trials and "Finders' Fees"


April 27, 2012 at 7:54am

Something that is not discussed very often (or ever) is the fact that clinical trials for pharmaceuticals can be a very profitable business for a university, MS center, clinic and lead investigator.  We know that drug companies pay the researchers, and pay for the use of facilities---and this has been a very lucrative business model for many.  But something that has been kept quiet is the fact that physicians are paid "finders' fees" for enrolling patients in clinical trials.  Because they need your body to test the drugs---signing you up is rewarded.

The published paper that first brought this practice to my attention was written by Maran Wolston, a woman with MS, who found out about her doctor's commercial interests in the drugs and trials he was recommending to her-- I suggest all pwMS and those that love them read her paper-

People are clamoring to be tested and treated for CCSVI.  We've seen CCSVI clinical trials fill up within days, patients are turned away.  Could the real push back from neurology regarding CCSVI treatment clinical trials be that neurologists do not want to lose potential patients for their own pharmaceutical clinical trials?

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If your doctor suggests you're the perfect candidate for some clinical trial, you might ask how much he's getting paid to recruit you.

Finders fees from $2,000 to $5,000 are common, say University of Toronto researchers Trudo Lemmens and Paul Miller. The fees are being paid to physicians, nurses and other health care professionals.

Sunday, April 22, 2012


Why mouse models of stroke and MS don't work

April 22, 2012 at 8:51am

MS is not the only neurological disorder which has a flawed rodent model.  Turns out, stroke researchers just aren't happy with their mouse model, either.  Why?  Because the immune response after stroke is different in mice and people.

EAE is not MS in humans.  
Believe it or not, the current MS drugs cure mice of EAE.  But they sure do not cure people of MS.  
What's the problem?   There are many problems with the EAE model.    
Here's my favorite description of what's wrong with EAE, from Dr. Michael Dake--

"There's an animal model, but it's not really, unfortunately, like most animal models, it's not really a human model.  Basically, you take like a mish of ground up spinal cord and brain from some other species, you mix it with some oily substance, some TB bacilli, and some bordatella pertussis, some whooping cough toxin, and inject it into peridium,  and what you get is this whopping inflammatory response, and that's good because you get the accelerated disease process, but obviously in humans, it's a much more chronic and progressive thing."

People with MS haven't had this cocktail of viruses injected into their brains.  (Good thing!)
But there's much more. The immune system of rodents and humans are very different, too.
Stroke researchers understand that their rodent models are not working.  
This is because the immune reaction after ischemia is very different in rodents when compared to humans

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Here is a recent paper on the problem with the rodent model of stroke--and the difference in the immune response in mice and men.

Important to note---the immune system responds after stroke, just as it does in MS.  Ischemic injury, or lack of oxygen to brain tissue, calls in the immune system to clean up dead cells.  This happens in all mammals.

The rodent immune cell composition is remarkably different from that of humans.
Specifically, rodents have a lymphocyte predominance with a 1:5 ratio of neutrophils to lymphocytes.
Humans have a 2:1 ratio of neutrophils to lymphocytes.

What does this mean?  Time for some explaining.
Neutrophils and lymphocytes are both types of white blood cells that make up the innate immune system of all mammals.