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, June 11, 2014

The Cure Mentality

Disease organizations have walks, bike rides and a variety of fund raisers to encourage donations to "Find the Cure!"   While these organizations have been spectacularly successful at raising money and in some instances, improving survivability of disease, they have not found cures.  And this fact brings us to the larger question---

Can we actually cure MS?

Cures exist.  But only for some, not all, of human disease.  We love to say, "There's no cure for the common cold!" and we all know there's no cure for dying.   We also know there isn't a cure for cardiovascular disease and stroke---there's only prevention, angioplasty and rehabilitation.  Still, we expect science to figure it out.  We think that researchers will create one pill, one solution, one therapy, one cure. 

I would like to propose that this focus on the cure for MS is keeping us from actual healing.  

How and when did our "cure mentality" begin?    I believe it was during the 1930s and 40s, when penicillin and the vaccine to prevent polio were introduced to the general public.   This was the era when all the big disease organizations were founded, to make sure these promising new scientific explorations continued. 

I researched this period for an essay on the founding neurologist of the MS Society,  Dr. Tracy Putnam.  He was the researcher who showed the vascular connection to MS in an experiment where he occluded the venous sinus of dogs, and created MS lesions and disability.   Yet his vascular theory of MS was tossed aside for "new" science and the autoimmune theory of MS, based on research by a co-creator of the polio vaccine, Dr. Thomas Rivers.  

Why did this happen?  Why didn't researchers follow up on Dr. Putnam's findings?   Because the vascular theory of MS did not produce an immediate "cure."  Patients and advocates expected nothing less. 

Dr. Putnam used newly developed blood thinners to treat MS, and the disease still progressed in some.  Patients and advocates grew weary and looked for new answers.  They turned to the young and successful pioneering scientist, Dr. Rivers.  He created the EAE mouse model of MS, which is still used 70 years later--even though, ironically, it has not produced a cure.  Instead, EAE has been used to create a 20 billion dollar a year industry for pharmaceutical treatments for MS.
link

What if Dr. Putnam was right?  What if MS is a cerebrovascular disease that can be treated, modified and possibly prevented?

Sadly, CCSVI treatment was touted as a potential cure by the press and many patients,  even though Dr. Zamboni and all the pioneers had never claimed this.  We knew it was a treatment and only part of a whole new vascularly healthy lifestyle.  Jeff and I were so discouraged when the New York Times chose to portray us as cure-seekers, and completely misrepresented the research.  
link

Today, we have a similar furor growing over stem cell treatment.  Although stem cell treatments that require immune ablation and chemotherapy have proven harmful, and have not stopped disease progression or brain atrophy in progressive patients.
link


Why do we still look to immunologists and MS specialists for the cure?

We now know that MS is not a genetic disease.  There is not one gene that causes MS. Scientists have located the MHC gene and other loci that raise the potential to develop MS-- but only 4% of people with MS even have the MHC gene.  link

And we know MS is not autoimmune, like the EAE model used in mice, or we would have a cure by now.  Because copaxone has been touted as reversing EAE in mice.  link

We do know that MS is affected by environmental factors.  
Proven, scientific links to MS susceptability and progression have been found in low vitamin D levels, low sun/UV exposure, eating processed foods and transfats, cigarette smoking, obesity, stress, lack of exercise and movement, lack of sleep,  and hypoperfusion or slowed blood flow in the brain.

As these Australian researchers have published---prevention may be the best path to healing and disease prevention for MS.
In the face of imperfect and non-curative treatments, understanding the role and mechanisms of action of environmental exposures is highly important as these are potentially preventable.  link

There are things to be done to improve our health.
Could we consider our goal to be prevention, disease cessation and healing, instead of a cure?

What if we took all that energy, money and time we voluntarily give to the disease groups that have continually promised us a cure and reinvested it back into our own lives and our community?

How about using that money to start buying more organic fruits and veggies--and skipping the MS Society hamburger and milkshake fundraiser?   (yes, sadly, this is a real fundraiser.)  link

What if we use our few good hours of daily energy to get physical therapy, take a walk, go to the gym and keep moving our whole bodies?  link

Toss out the cigarettes, and chew on carrot sticks?
link

What if we went outside for 15 minutes, and soaked up some of those nitric oxide releasing UV rays and raised our vitamin D levels naturally?
link

How about meditation instead of frustration?   Deep breathing and deep sleep?
link

Could we heal?  Could we change our disease course?  Science gives us a resounding "yes!!"   As do many medical researchers including Dr. Terry Wahls, Dr. Ashton Embry, Dr. George Jelinek and the late Dr. Roy Swank.

Jeff would tell you these lifestyle changes work.  And his MRI proves he is healing.  His gray matter now looks normal on MRI.  He is not cured--he still has some damage from his first bad flare and neuropathic pain, he still has damage due to "MS".  But it is not getting worse.  His MS is not progressing.  His brain and spine are healing, using venoplasty for CCSVI and the Endothelial Health Program.  link

When we simply sit and wait for a cure and don't change the things we know we can change, we abdicate our power.  We give away our own innate ability for healing.

Wishing everyone who reads this blog hope and true healing,
Please stay in touch with me, and let me know what is helping you to heal.
It's not about blame for the past, it's about real hope for the future.  
We're all in this together--and I remain a cheerleader,

Joan







12 comments:

  1. Very true and inspiring, Joan. Since my CCSVI treatments in 2010 & 2011, I have changed my lifestyle. Quit all medications. I didn't realize how many processed foods and carbs I was eating. Huge wake up call. Along with moving more, I am doing pretty well. Losing weight was a grateful side effect! Been treating for Lyme for the past 19 months too. I believe the reason for restenosis was poor vein health and/or the Lyme bacteria. We are in charge of ourselves. As always, thank you.

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    1. So glad you are continuing to heal, and dealing with your Lyme infection, Beth. Thanks for checking in.

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  2. Excellent overview of this issue. I would probably be less kind than you in characterizing the disease societies. One small point. You say, as does your source, that Copaxone "cures" mice of EAE. In fact, it only decreased disease onset slightly but did not inhibit disease progression and decreased the final EAE disability score 45% relative to the placebo group at the end of a 25 day observation period which is shorter than tested in EAE with several other drugs.

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    1. Thanks for the clarification on Copaxone "curing" EAE, Edward. Mice with EAE do seem to fare better on MS drugs than humans do. In fact, mice on Tysabri did not develop PML, since mice can't get the JC virus and don't develop PML....kind of a problem with the current mouse model for MS. http://www.ema.europa.eu/docs/en_GB/document_library/Presentation/2011/07/WC500109644.pdf

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  3. Really liked your article! It pretty much sums our mentality here at the Estrie MS association, in Quebec (I think you know our director, mr René McKay)

    Would you be ok if we translated it and published the translation on our website, www.spestrie.ca? Many members of the association do not understand english but would still benefit from your words.


    Thanks again and keep up with the good work!

    Jasmin Noël
    Communication agent at ASPE/EMSA

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    1. Hi Jasmin---certainly, go ahead and translate! I had the pleasure of meeting and spending time with Rene and some of the wonderful staff at Estrie in Sherbrooke last year. I think your association has the right approach to helping people with MS, and remain hopeful that the techniques your group uses might be available to all people with MS. all the best, Joan

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  4. Joan, Jasmin was the one who translated the article.....I will post it on the CCSVI in MS page.

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  5. Thankyou from me in ENGLAND UK

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  8. Thank you so much to share <3 Namaste

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