Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. 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 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, April 8, 2015

An Apology Letter to Dr. Roy Swank from the National MS Society

Dear Dr. Roy Swank,

We would like to apologize.  Remember how we denigrated your cardiovascular health program for people with MS because it wasn't really double blinded and placebo controlled?   Laughed at you for implying that MS might be a vascular disease?   You had the audacity to suggest that people with Multiple Sclerosis would live longer, healthier lives by limiting saturated and trans fats, eating more fruits and vegetables, removing processed foods and exercising, and you had published research to back up your claims.

We assured everyone that you were spinning hope, not science.  Since we knew MS was a purely an autoimmune disease,  addressing cardiovascular health would make NO DIFFERENCE in disease progression.  How would heart and blood vessel health change an autoimmune disease???  C'mon!  You have to admit, it even now, it seems too simple.  Yes, you published 170 scientific papers from 1934-2003,  LINK   But food and exercise helping MS disease progression?  Too easy.  It was placebo effect, obviously.

Here's what we said to the NY Times about programs like your "diet and whatever" in 2008:

Patricia O’Looney, vice president for biomedical research at the Multiple Sclerosis Society, said in an interview: “There’s a strong placebo effect in MS. With any change a person makes — in diet or whatever — they’re likely to feel better because they’re taking some action. Eating less saturated fat and more fish oil is good for all of us. But we’d never suggest changing one’s diet in place of taking a therapy approved by the FDA.
“Thus far, no researcher has been interested in taking this (nutrition for MS) on,” Dr. Kalb said. “The medications seemed to show more promise.”
link

So, we have recommended expensive FDA approved chemotherapies and those promising immune ablating and modulating drugs, in the hopes of wiping out all the nasty, aberrent immune cells. We used double blind placebo controlled gold-standard science--not as easy to do for your "diet." 

Here's a news story from 1989, where we scientists discuss how our chemotherapies are going to conquer MS.  It's compared and contrasted to you rather quaint lifestyle program.  We look like the future.  You look like a friendly, small town doctor.  We are really taking dramatic risks,  and we chuckle at your program for MS. (Of course, this particular chemo treatment failed in future trials, but hindsight is 20/20, right?)
https://www.youtube.com/watch?v=lEnn_AZT-SU

Well, gosh.  All these years later, it appears we might have been wrong and you were on to something!

Turns out nutrition, exercise and cardiovascularly healthful pursuits can make a difference in quality of life, and slow disease progression in MS, without the side effects.  And your peer-reviewed and published research was actually right.  Because even more research is being published on the connection, and your papers are being cited.  Obesity in linked to faster MS progression, processed and highly fatty foods are linked to faster MS progression, and nutritional and lifestyle strategies are making a difference.  People with MS show plasmic differences, related to endothelial dysfunction.  Environmental factors like nutrition and exercise really affect disease progression.  Cardiovascular exercise even reversed brain atrophy in progressive MS...

Huh.  Who would have thought?

Here's our new updated "National MS Society Wellness Program."  We're looking at your suggestions, sixty years later.  Better late than never, right?
link

We won't give you any credit, mention your name and research, or make any public apologies.  Because, well, we don't really want people to know that you were publishing this science on the cardiovascular connection to MS in the 1950s....and we could have saved millions from undue suffering.

Well, anyway.  Bygones, OK?

your friends,
The National MS Society

++++++++++++++++++++++++++++++++++++++++++++

(note:  just so I won't get sued, this letter isn't real.  It's satire.  But it's really not that funny.)


For those who wish to learn more, here is Dr. Swank's website.
http://www.swankmsdiet.org


Here's is Dr. Ashton Embry's paper, a letter of love and appreciation for Dr. Swank's research, upon Dr. Swank's death in 2008.   Dr. Embry went on to help his son Matt, by using Dr. Swank's principals.  
http://www.direct-ms.org/sites/default/files/25%20Swank.pdf

Matt is now 20 years past his MS diagnosis, using diet and exercise alone, with no disease progression.  Here's his program.
http://www.mshope.com

Here is Dr. George Jelinek's program, Overcoming Multiple Sclerosis, based on Dr. Swank's foundational research.  http://www.overcomingmultiplesclerosis.org

And finally, here is the Endothelial Health Program.  I used Dr. Swank's documentation of "capillary fragility" in MS, and brought his research into 21st century science with the recent discovery of nitric oxide as endothelially derived relaxing factor (EDRF), and how nutrition, lifestyle and exercise impact brain health.
http://ccsvi.org/index.php/helping-myself/endothelial-health

The vascular connection to MS is real.  It was real in the 1850s when Dr. Rindfleisch saw inflamed and engourged veins in MS brain tissue under his microscope, it was real in the 1940s when Dr. Putnam created MS lesions by blocking venous blood flow, it was real in the 1950s when Dr. Swank found the dietary connection, it was real in the 1980s when Dr. Schelling noted the venous connection and still real in 2005 when Dr. Zamboni saw on doppler ultrasound how blood was refluxing in jugular veins.

Please take care of yourselves.  Eat well, move as much as you are able, don't smoke, get UV rays and plenty of sleep, laugh, pray and meditate, find support, and live your best life.  Because science says these things can make a difference.

Be well,

Joan





11 comments:

  1. So much appreciation to you, Joan!

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  2. Hey Joan,

    When looking at the MSHope website the diet he was recommending indicating the need to remove all dairy from your diet, as well as a lot of animal proteins. I'm just wondering how this could possibly be recommended to people with MS givens hat the majority of us sufferers are women of child bearing age? If I had done this while pregnant I wouldn't have survived, and the calcium deficiency would have been unreal. I'd love to explore how diet and exercise could affect disease progression but these "cut out everything" diets really turn me off. Is Dr. Swank's book the same? Any thoughts or suggestions would be greatly appreciated!

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    1. Hey Kate--I hear you!! Our family hated the "don't eat this" approach. In fact, my husband was completely freaked out and angry when I stopped buying and serving red meats, cheeses, dairy and all of his beloved favorite foods. His comment to me was, "How will I ever get enough protein and calcium?!?" All he wanted was a cheeseburger. And he was pissed. But eight years later, with no MS progression---his favorite foods are leafy green veggies, fish, chicken, cooked up with Indian spices. We're both good cooks now (!!!!) He snacks on nuts and dried fruits. He no longer misses his old favs, and his blood numbers for nutrients, cholesterol, vit D and all of the high inflammatory markers he used to have are normal, and healthy. And he feels great, no MS progression and is still jogging and working full days. He's healthier than most 51 yr. old men I know :)

      Yes, he's a man. Pregnant and breast feeding women have special needs. You need extra calcium, folate and B vitamins. But you can get all the calcium you need from fruits and veggies, honest! Collard greens, broccoloi, spinach and kale, dried apricots, and berries. Using a calcium supplemented almond or soy milk. Eating lean proteins and you'll get your B vitamins. And supplements can always take care of the rest, if necessary.

      I like to think of it as not what I CAN'T have...but look at all I CAN have. It's looking at food from the world of plenty and bountiful options. I now have a green veggie garden where I grow my own beets, spinach, carrots, kale, broccoli. Every day is an experience of color and plenty. I used to kill every houseplant I owned....but when Jeff got sick, I studied, and I kept coming back to diet and nutrition and a healthy endothelium. I hope this inspires you. I know, it's daunting. But it's real. Maybe I'll write a book someday about all you CAN eat and do, from a more positive stance, in the meantime-- Keep reading, keep learning, find a program that clicks for you. And be well! Joan

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    2. Great blog Joan! I missed this earlier :(. Very well put!!
      Read you comment on "Maybe" writing a book some day ... I have thought these past six years ... Joan should write a book. Wouldn't that be great?! I hope one day I will see this happen. I would love a personal autograph in your book for sure! xoxo

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    3. I did fine on this diet while pregnant!! I also worked through my pregnancy on my feet as an RN in a hospital. Teresa Teresa R.N. 40 yrs.

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  3. Oi - É bom para ler esse conteúdo interessante. Eu concordo com muito do que está escrito aqui e eu vou voltar.
    Mais uma vez obrigado por postar tal material de leitura grande !! Para obter informações, visite o mais relevante aqui
    Comprar Kimera Thermo

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  4. Another interesting addition to the mix that 'probably' occurs in tandem or in early stages to set the scene?
    http://www.psypost.org/2014/10/steadily-rising-increases-mitochondrial-dna-mutations-cause-abrupt-shifts-brain-disease-29030

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  5. There is a book on CCSVI written by an RN that has MS and is supported by physicians. This covers cause and effect and can provide good insight into the biology of the disease.

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    1. There sure is!! Marie Rhodes is a friend and has written the best book on this topic by far!!! https://www.amazon.com/CCSVI-Cause-Multiple-Sclerosis-Controversial/dp/0786460385

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