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

Wednesday, August 5, 2015

MS News--It's deja vu, all over again

Following neurology headlines since Jeff's MS diagnosis 8 years ago--I've seen many exciting research developments in understanding the human brain.

Recent examples of game-changing research include
The discovery of the brain's lymphatic cleansing system, which occurs when we sleep.

The discovery of the brain's lymphatic vessels, which mean that the brain is not immune privileged, and immune cells are needed in the CNS to insure brain health.

And all of the discoveries made into the vascular connection to diseases of neurodegeneration published by the International Society for Neurovascular Disease (ISNVD)

Meanwhile, MS research spins on a hamster wheel of repetition and dismal lack of progress.  It's been the same, sad headlines for the past eight years.   Nothing about disease etiology.  There is a complete disconnect between what is happening in neuroscience, and what is happening in MS treatment.

Here are today's MS "News" headlines--- (we've seen these over and over again)

PML, the deadly reaction to the JC virus found in immune-compromised individuals, is now being diagnosed in patients on MS drugs Tecfidera, Gilenya and Tysabri.

White matter lesions are not meaningful in understanding MS progression, and gray matter disease is more closely tied to disability progression.

Salt, lack of vitamin D and environmental factors like smoking contribute to MS progression, but MS specialists are not sure why.  Even though cardiovascular researchers already know these factors all contribute to endothelial dysfunction.  The heart-brain connection is continually ignored by MS research.

And in a bumbling show of complete disregard for the cardiovascular connection to brain health, the MS Society of Canada asks Canadians to pledge to eat super-sized portions of french fries to "EndMS"!!!!!  You could not write this stuff, folks.   Simply unbelievable.

What I find most troubling is that nothing has changed the $20 billion dollar a year MS treatment machine.  Drugs with harmful side effects, which calm inflammation but DO NOT address gray matter loss or disease progression, continue to be prescribed as "gold standard" treatment.    Patients are not being told that lifestyle changes-- such as exercise, vitamin D supplementation and UV ray exposure, whole food nutrition, limiting processed foods and transfats, not smoking, and getting good sleep--are all scientifically shown to make a difference in disease progression and calm inflammation in a less risky way.  Advocates who try to help people understand this, like Matt Embry, are sent cease and desist copyright infringement letters by the MS Society.  And no one, with the exception of the ISNVD and Dr. Zamboni, and advocacy groups like CCSVI Alliance, Direct-MS and the NCS, is discussing the vascular connection to MS.

MS research labs are funded, MS specialists get their speaking and consultation fees from pharma, the stock market and investors continue to follow MS drugs, MS Society leaders are paid, funds are raised from people eating french fries---- money is being made off of MS patients.
Yet no one is pursuing disease etiology.

I've talked to many researchers over these past years, and they are all frustrated by the lack of initiative and funding available to them.

Jeff and I are traveling, working, back to our careers and lives.  I keep blogging, hoping that drawing attention to research on the vascular connection might help someone.  Every month or so, I check the MS research headlines, and see the same ol' same 'ol.  Deja vu, all over again.

In the next few months, I will be posting links to my new podcast.  It will feature interviews with doctors and researchers who are passionate and committed to helping people heal.  I'll have more information available as I get further along in the process.  It will be available, for free, on iTunes and linked on a webpage.

I do not want to see the same stagnating MS headlines and failed treatments eight years from now--and I know none of you do, either!  We owe it to this wonderful MS community, we owe it to our children and their children.  If you have ideas for doctors, researchers or topics you'd like to hear addressed, please leave me your suggestions! I'll be speaking to functional medicine doctors, researchers and advocates.

Let's all be the change we wish to see, and get off the hamster wheel,


  1. I am so happy to see the advocates for better brain and overall health like you Joan, are still involved. If not for this no one would be any wiser and I would hate to think where we all would be today. Thank you.

  2. Brava...non mollare Joan! Never give up!!!

  3. Forever grateful! Even if "the system" is stuck on the hamster wheel, you have helped so many!

  4. This news is a sad reflection of what is going on with medicine in general. It appears all forms of illness are being treated the same. It is only that we are all effected by Multiple Sclerosis that we have our finger on the pulse with this disease. Never once has any Doctor or Neuro suggested diet or vitamin D may help with Chris's MS. Their only interest is in prescribing and peddling their toxic drugs. For 18 years we have been putting up with this crap and we have had enough.

    1. You've seen the hamster wheel for much longer than I, Gary. I'm thankful we can get info out to people via the internet--showing how environmental changes in lifestyle, like smoking cessation, whole food nutrition, exercise and vitamin D/UV rays--can help slow MS disease progression. Wishing you and Chris well. Hang in there!

  5. Hi Joan, Thanks for all your work, you have helped me so much too. Please have a look at my posting of 10 August on http://www.thisisms.com/forum/general-discussion-f1/topic15188-720.html which nails down MS once and forever. And at my research proposal, a treatment scheme, at my posting of 30 June on the same page.
    I am sure all those who have other interests than patients will ignore, deter, delay, defer, destroy, if they can. But with the help of patients and these fora, I sure some day the new ideas will thrive.