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

Friday, January 3, 2014

Dallas Buyers Club and MS treatments

One of the new Oscar-worthy movies now in theaters is Dallas Buyers Club.  It features tour de force acting and a compelling, true-story script.  Jeff and I both enjoyed this film, for a variety of artistic, professional and personal reasons.

I don't want to give away spoilers for those who haven't seen the movie.  With that caveat, if you're planning on seeing the movie and don't want to know what it's about, stop reading now, and come back to this note after you've seen it.

Personally, I don't like to know anything about a movie before I see it--which is why I hate movie trailers.  I steer clear of movie and book reviews for the same reason.  So, if you're like me, and you enjoy being surprised when you see a film--stop now :)



SPOILERS AHEAD.....(OK, that was your final warning!)

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

What I didn't realize, when Jeff and I recently saw this film, is that this is a true story about Ron Woodruff's fight for his life.  Ron battled for the right to purchase and distribute alternative treatments, which at that time were not FDA approved.  His heroic effort was profiled in a 1992 feature article, written by Bill Minutaglio and published in the Dallas Morning News.  This is highly recommended reading.

Ron was diagnosed with HIV in 1985.  He was a rough-talking, rougher-living, drug-addicted rodeo rider, and by the time he'd received his diagnosis, he was given 30 days to live.  His treating doctors were unable to help him, since they were conducting a double blind, placebo controlled trial for AZT, which was at that time the only FDA approved anti-retroviral available to treat HIV.  Ron set about getting AZT for himself, by paying a hospital employee to steal it for him.  When he was no longer able to get AZT, he set out to learn more about how he could help himself. Ron began to research alternative treatments at the local public library and at HIV support groups.   This was in the days before the internet, and our current access to online medical journals and support groups.  This research lead him across the border to Mexico, where he worked with a physician to create a different protocol to treat his HIV.  The doctor in Mexico explained to Ron that the AZT he had been taking had actually been causing serious side-effects, like anemia and neuropathy.  Ron was close to death by the time this doctor helped him find less toxic ways to deal with his HIV.

At that time, the few HIV treating doctors in U.S. hospitals were blocking their patients from using alternative treatments.  Other anti-viral treatments and supplements were considered safe, proven to help those with HIV, and available to patients in other countries, but because US doctors and the pharmaceutical industry needed their patients "treatment naive" for clinical trials of AZT, these alternatives became illegal.  Sadly, many trials noted problems with the toxicity and side effects of AZT.  Some of these studies had been published in medical journals in other countries, but were being withheld from the US doctors.  A key scene in the movie is when Ron brings a copy of the medical  journal, The Lancet, to his treating doctor, and shows her studies mentioning the deadly side effects and lack of efficacy with AZT that have been silenced in the US. 

In 1987, Ron begins smuggling drugs across the border and selling them to other HIV patients.  This effort to save his life and help others begins the Dallas Buyers Club.  I was happily surprised to learn that some of the supplements in the protocol he sold included silymarin (milk thistle), natural antivirals, and omega 3 oil (part of the Endothelial Health Program.)  These "buyers clubs" were set up around the country, to help thousands of  AIDS patients deal with their symptoms and to give them quality of life-- by selling them hundreds of alternative treatments, many of which were brought into the US illegally.  These treatments extended the lives of thousands of people with HIV, often by many years and even decades past their expected life span on AZT alone.  In fact, a virtual anti-viral cocktail and other supplements has now become the accepted form of treating HIV, thanks to the efforts of these first patients.  HIV is no longer a death sentence, because of the work of these heroes.  I'd forgotten the history of this era--it was a time when AIDS patients would protest outside the FDA office in Washington, calling for faster approval of treatments to slow the disease.  And all the while, the FDA stood firmly behind one treatment and one means of disease modification--AZT.  Here's the interesting history regarding how AZT, a drug created to fight cancer which failed in cancer trials, which was later developed for use in HIV thanks to a unique, and perhaps questionable, partnership between the National Cancer Institute and Burroughs Wellcome,  a drug company focused on anti-retroviral medications. http://www.scribd.com/doc/92129927/The-History-of-Zidovudine-AZT-Partnership-and-Conflict 

Here's a terrific write up of this film, and what it says about our current situation with FDA approval for drugs, published in Forbes.

What’s amazing is that in a country founded by wise men wholly skeptical of government, we live in a nation today that says it’s illegal for the terminally ill to do all they can to extend their lives. It’s easy to simply blame the FDA, the film does just that expertly, but the pharmaceutical industry itself shares some of the blame too. Names and companies will not be mentioned, but this writer remembers talking to a Washington representative of a big pharmaceutical company back in 2004, and in the conversation the FDA’s anti-life ways were mentioned.

The latter is almost a tautology considering the drug approval process that the FDA has erected, but the pharmaceutical rep lauded the bureaucracy. It was surprising at the time, but only initially. Figure if one of those innovative thinkers cures cancer tomorrow, that person’s ability to bring the drug to market will be impossible thanks to the FDA. Big pharmaceuticals like the FDA precisely because it protects a large market for them, and its approval process ensures that any cure crafted outside a government-infused pharmaceutical establishment will have to be sold to a well-connected drug company if it is to ever be used for its real purpose: the saving of lives.


To those of us working for alternative treatments and understanding of the disease process of Multiple Sclerosis,  this movie is all too real.
The parallels to the history of AZT/AIDS and the FDA approved treatments for multiple sclerosis are striking.  

1. The fact that negative studies for drugs are often shelved, and only positive studies are used to prove efficacy, is incredibly concerning.  There was a story just today from the BBC on how the lack of transparency in drug trials causes important data to be withheld from prescribing doctors.  
We see this in the MS drug world, as pharma-sponsored MS specialists promote their particular drug, while maintaining the misinformation that these drugs slow disability.  The numerous studies and neurologists who speak out on this fact and debate the EAE model of MS (Tremlett, Chaudhuri, Behan, Ebers) are ignored.

2.  The fact that alternative treatments and alternative disease modalities are portrayed in pharma-sponsored medical journals as pseudo science without referencing the positive studies.  We've seen this with CCSVI diagnosis and treatment, stem cell treatments, hyperbaric oxygen treatment, nutrition and lifestyle treatment, and all of the cardiovascular treatments that have been helping people with MS live longer and healthier lives for decades.  Dr. Swank's clinical trials from the 1950s showed how diet and lifestyle could give people with MS healthy remission and slow disease progression.  Yet it is only in the past 5 years that MS specialists even mention the importance of whole food diets, smoking cessation, antioxidant rich diets, and cardiovascular exercise to their patients.  For 60 years, the EAE mouse model of MS remains the only acceptable explanation for MS, yet an antigenic target has never been discovered.

3.  The fact that deadly side effects are down-played to maintain a drug's viability in the marketplace.  It's all about maintaining market share and stock value.  We see this with Tysabri, as MS specialists speak only of the "great benefit" of this drug, without discussing the growing numbers of those who now have the deadly brain virus, PML.  EHealthMe.com, a completely independent drug monitoring health care site, was created to combat this very problem, as it gives REAL numbers for side effects of drugs, and accepts NO pharma sponsorship.  And the site now reports that PML numbers for those on Tysabri are at 3%.  2,583 patients out of the 90,291 on Tysabri reporting side effects.

4. The fact that people with MS are forced to travel the globe and pay out of pocket for alternative treatments, many of which have published literature behind them, showing efficacy in relieving MS symptoms and slowing disability.  MS patients are treated like outlaws when they return home, and are denied follow up care, or actually fired by their physicians.

5.  The fact that patients are dying, every day, due to complications from MS.  Billions of dollars are made by the MS drug companies, yet we are no closer to understanding MS disease aetiology than we were when Thomas Rivers created the EAE mouse model in the 1940s.


For those who have seen the film, I'd love to know your thoughts.  Please comment below.  
Do you think we can get more journalists, documentary or dramatic film makers interested in the MS/CCSVI story?  How can we do this?

This past year, Jeff and I have seen how one film can change peoples' minds.  Jeff scored the new documentary, Blackfish, which is causing people to re-think whales as circus entertainment, and whether it is right to keep these majestic creatures in captivity.  We've seen a collective change of mind and heart, as people around the globe are protesting SeaWorld and petitioning to have orcas released to open sea-pens. Famous musicians cancel their appearances at SeaWorld, people boycott the marine parks, a little girl sits down in front of the SeaWorld float at the Rose Parade in protest, and is arrested by police in riot gear.    We've seen how much corporations are willing to fight back to keep their market share and stock value, as SeaWorld rigs polls on the internet, makes Forbes.com take down a critical editorial, and spends millions taking out full page ads claiming the documentary is not based on science.  Meanwhile, SeaWorld refuses to go on camera at CNN and discuss the facts.  The director of Blackfish asked them several times to be in her film.  She never had an "angle",  she just wanted the truth.  But they refused her, too.  We know, because we saw this film being made.  It's all true. 

My hope, in 2014, is that we can continue to change the dialogue.  That we can open peoples' eyes to the power and influence of the pharmaceutical industry.  That we can bring together physicians, patients and the public to look at meaningful ways to treat diseases of neurodegeneration.  That we can encourage writers, film makers, documentarians, news reporters, journalists, law makers, politicians, and scientists to look at the facts.  Not just the negative spin regarding the vascular connection to MS, which is often published in neurological journals---but the hard science coming out of collaborative, non-pharma sponsored groups like the International Society for Neurovascular Disease and the papers being published in vascular journals.

Let's get it done,
Joan


8 comments:

  1. Thankyou shared on other sites too

    ReplyDelete
    Replies
    1. Thanks for all your support, Lynne! It's truly appreciated.

      Delete
  2. This is a great review of the film. As I was watching it, it hit so close to me, because all I could thing of is the main character buying time, fighting for his life. Even though it was about AIDS, his frustrations seem so similar to those who have MS. I worked inpharma business, it is about market share, just like any other business

    ReplyDelete
  3. This comment has been removed by the author.

    ReplyDelete
  4. This comment has been removed by a blog administrator.

    ReplyDelete
  5. Al--Sorry, I don't give out my private e-mail. All the info you need is available at www.ccsvi.org Hope it can help! All best, Joan

    ReplyDelete
  6. My Name is wellitymorgan from USA, and am really grateful and thankful for what Dr ezomo has done for me and my family. i Was having HIV/ AIDS for good three years with no solution, the diseases almost took my life and cause i was unable to work and i was also loosing lots of money for medication, but one faithful day when i went online, i met lots of testimonies about this great man so i decided to give it a try and to God be the glory he did it. he cured me of my diseases and am so happy and so pleased to Write about him today. if you need his help of you also want to get cured just the way i got mine, just email
    drezomospellhome@gmail.com and get your healing

    ReplyDelete
  7. This comment has been removed by a blog administrator.

    ReplyDelete