Tuesday, January 26, 2010

Why the US News Media Silence on CCSVI?

Speak No Evil

Image by thorinside via Flickr

The topic of CCSVI, the radical new theory that MS may in fact be a vascular disease, has been raging on the Internet for several months now. On some prominent MS forums, the topic has bred near hysteria among contributors, and the websites of most of the major MS advocacy groups (the NMSS, the MSAA, etc.) have featured CCSVI information, with varying degrees of enthusiasm.

Outside of the US, CCSVI has been featured prominently in mainstream television and print news media outlets. In Canada, one of the major television networks aired a 20 minute long newsmagazine feature on CCSVI, and the pros and cons of the theory have been written about in many of the country's newspapers. The European news media have also devoted time to the theory, which got its start when the wife of an Italian vascular surgeon developed multiple sclerosis, and he investigated the blood vessels associated with her central nervous system, finding odd vascular abnormalities.

In the United States, though, the media have responded to this potentially groundbreaking theory with resounding silence. There have been no print articles about CCSVI in any major American newspaper, nor have any of the US television network news organizations paid it any notice. Very strange, given the breathless coverage many medical discoveries of lesser potential are given in the modern, voracious 24-hour news environment that demands a constant stream of newsworthy items and events. The "balloon boy" hoax was given countless hours of coverage; yet a story about a possible breakthrough in the fight against Multiple Sclerosis, a disease that affects hundreds of thousands of Americans, has warranted not even a whisper.

I've heard from very reliable sources that both CBS and ABC have had TV news stories in the can and ready to go for weeks now, but for some strange reason have not deemed them airworthy. Doctors and patients have been interviewed, and video pieces have been cut, only to be put on a shelf.

If I were a cynical man, I might wonder if sponsorship pressures could possibly be behind the silence of US news outlets. After all, if CCSVI were to prove correct, pharmaceutical companies would stand to lose billions of dollars in the yearly sales of the immunosuppressant MS drugs that have become a major cash cow for them. If I were a cynical man, I might watch all of the slick prescription drug commercials that now flood our airwaves, and contemplate the huge influence that the companies that pay to air them could exert on network and cable TV organizations with the mere threat of withholding some of their advertising dollars. If I were a cynical man, I might think about the fact that the United States no longer has any independent news gathering operations, the likes of which have all been swallowed up by huge corporate conglomerates whose focus is on the bottom line, not the dissemination of unbiased journalism.

I'm still not 100% convinced that CCSVI will prove to be THE answer for every patient struggling with multiple sclerosis. It very well might be, but there is still much to be discovered, and proper news coverage could spur into action research organizations, and the foundations that fund them, and thereby quicken the pace of discovery. If I were a cynical man, I'd contemplate these things while quietly humming the Viagra song...

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  1. Marc

    I used to work in the pharmaceutical industry. I have no affiliation anymore and no loyalty to it. But the industry is often blamed for many of the world's problems and I just don't see it. I often hear people say "The pharmaceutical giants have a cure for cancer, but if they marketed it they would lose a lot of business, so "they" are keeping off of the market" Bull. Who is "they"? Whichever company came out with a cure for cancer would make a fortune. Same with the CCSVI story. There are soo many pharmaceutical companies out here. It only takes one to figure out how to put the CCSVI cure in a pill. And that company would stand to earn a fortune. No companies can control the entire industry nor silence the media. It just does not work that way.

    Why the silence? Because disabilities don't sell newpapers. Disabilitis do not sell laundry detergent. Disability stories do not interest the US masses. So, editors make these stories low priorities. If something more interesting comes up, it runs first. This goes on and on until the news is no longer news.

    In the UK, they are going to have a version of Dancing With the Stars featuring wheelchair dancers. Do you believe you will EVER see something like this in in US? Not a chance.

    In the US when the requires a disabled character in a film or TV role, do they hire a disabled performer? No, they hire an able bodied performer to portray a disabled character. (Glee and Lady Gaga both did this recently).

    The disabled community has a long way to go to change the image of people with disabilities in the USA. Until that happens, disability stories and disabled people will continue to be low priority.

  2. Marc,

    Thanks again, Man.. I really enjoy hearing you put into words, what I'm sure most of us already thinking.

    The majority of people with MS are not "really" considered disabled. That is why urgency is necessary. US news coverage would help expidite research/treatment about this potential pharma crushing "procedure", hence my own cynicsm. CCSVI treatment may stop the progression, and prevent those still functioning from moving to the dreaded "disabled" status. Since I received the MS DX in 2002 it was recommended I start taking "disease modifiying drugs" DMD's(injections) "immediately" to slow the progression. I reluctantly took the advice of my Dr. and at that time, the "cure" / treatment was worse than the "condition". I felt great prior to taking REBIF, and had some minimally annoying numbness in my left arm/hand and optic neurotits which was resolved with steroids. Then, while taking the drug, I felt horrible, although my whole bodily makup was telling me to avoid pain and stop taking this crap, I pushed forward and kept at it all the while looking over the published 30% effectiveness stat. and wondering if it was worth it???

    CCSVI treatment does not involve a lifetime of 20 to 30K per year drugs. It is a procedure, period and I want it if my veins are stenosed.

    Call me crazy, but in me soul I feel as though big pharma are not nesessairly looking for "cure's"... It very well may be possible that "they", whomever "they" are, place all efforts in finding a drug that needs to be taken for a lifetime.


  3. I think there is a "they", maybe we never got to meet or know. Unless you were one of the few at the tippy-tippy top. So often those who pull the strings never show their faces. Decisions get made with the input and thought of others never included. Call me paranoid.

  4. I've always said never ascribe to conspiracy what can adequately be explained by stupidity.
    Just sayin'
    That said, I, too, am tired of all the slashing at big pharma. But with all the drug advertising on TV in the US, I imagine they have some sway over what gets aired.

  5. Okay, this marks the end. I'm done with being online with my MS. Marc, your blog was my last hold-out, but I'm done.

    I'm done with all that is out there on-line. The conspiracy theories. The your-neurologist-hates-you. The MS-Society-hates-you. Big pharma rules the universe. I'm in education, so I know the drill. Don't like what I have to say? Then it must be because I have a hidden agenda, it's all a consipiracy.

    Good by MS on-line world. I'll go it alone.

  6. oh come on all you consultant neuros and come out and say something! although uk media might not be as biased as in the usa, we still only hear a little on a slow news day. a story about a british woman who went to california for ccsvi treatment made the newspaper but it didnt give much of an explanation. but fingolimod made national tv news!
    i'm going to discuss ccsvi with my ms specialist neuro when i see him 1st march. hopefully he'll listen and take on board.


  7. Thanks for bringing our attention to yet another possible treatment/cure for MS. I ran out of medication choices just over a year ago and was fortunate enough to qualify for the HALT MS Stem Cell Transplant. I'm 4 months out and no signs of MS. Interestingly enough you're not hearing about this in the papers or on the news either and these things just could be or at least lead to the cure we are all hoping for.

  8. The MS Society hates me!????!!??!! I didn't know that. Thanks for pointing it out!!!

  9. The public opposition and stall tactics in Canada are mostly from nurologists. Zamboni is gone public to keep the interest going. He was stopped in Italy. I would be interested in knowing why?

  10. Anonymous-
    I was in Education too but I don't know the drill. Help!!!!!

  11. Thanks Marc.

    I agree with you skepticism completely.

    I don’t believe that this is a direct conspiracy between the pharmaceutical companies and the media in the traditional sense. Rather, I would agree that both the broadcast companies and the Pharmas are just looking out for their bottom lines.

    MS meds represent a nearly 10 billion dollar market worldwide and are a true cash cow for the drug companies. Additionally, we are on the eve of the launch of a “tsunami” of new oral MS meds and two major drug companies are currently fighting for the “first to market” advantage that will have the power to move stock prices and recoup their huge research costs. If it can be shown that MS progression might be slowed down or even stopped by a vascular procedure, the potential losses to the drug companies could be devastating.

    The pharmaceutical companies are undoubtedly among the top 5 TV advertisers in the US and it is likely that the broadcasters don’t want to rock that income boat. In fact, on a segment of 60 Minutes this past Sunday, they actually admitted to holding back a piece on the tobacco industry for just that reason.

    Back in business school, the very first thing they taught us was that the key objective of a corporation is to increase shareholder wealth. And it appears that this is just what the broadcast and pharmaceutical companies are doing…


  12. When I was first diagnosed stem cell treatment was the big cure for MS. I asked my doctor, and became furious when he said, "there is no stem cell treatment." What??? My best friend, confined to wheelchair, had gotten it and her parents said she was lucky or she would not have as much mobility as she did. Her right arm and she could speak, but not as well as you and I. I was then told that because of Bush, there was no longer any stem cell treatment and she could go no further wit hers.
    So I did my own research, as I was now desperate for a cure (I had no idea I had it the whole time I was friends with her), so I wrote to a doctor at Harvard that headed the neurology department. He said it was a scam. He said that there were no definitive treatments as there was no way of "programming" stem cells to cure MS. Otherwise, he said, how would we know if the person was getting a cell that grew them another arm or hand out of their face?
    Quite dramatic, but I got the point. All the people I knew were going to Europe for treatments. He said it was a way of making money of a family's desperation for a cure.

    I see this media frenzy and internet frenzy the same way. We all want so desperately to be normal that we can't enjoy the gifts of life and be who we are. No offense, but I agree with the Harvard doctor. Marc, you did a great article on the pros and cons of this procedure and I likened it to the doctor's characterization of stem cell treatment, yet people are buying into this.

    Anyway, I am done with ignorance and enjoy reading your blog; and as I am a law school student with MS, I appreciate your thorough research with supporting facts.

  13. Well, it appears that I've really stirred up a hornets nest with this post. I'm sorry that it caused one of my readers to abandon seeking support for MS on the Internet, as there are many valuable resources to be tapped into.

    However, I do believe that financial motivations do, at times, trump medical considerations at some levels of the medical establishment. I intend to soon write a post about the medical industrial complex that has evolved in this country, which often operates to the detriment of patients, not intentionally or with malice, but systemically and systematically because medicine has been transformed into a business that occupies almost 20% of our national economy.

    I don't believe that there is any "they" that conspire against a finding of cures and other potentially beneficial discoveries. However, the private research model as it has developed in the US is strictly profit driven, and the drive to produce ever-increasing bottom lines can run counter to what may be most beneficial to patients.

    I'm not talking conspiracy theories, I'm talking systemic dysfunction. The executives at big Pharma are simply doing their jobs, which is to make their companies as profitable as possible...

  14. If news organizations do not find CCSVI interesting to the public in the U.S., how do you explain the news coverage in Europe and elsewhere? Maybe the difference is that the drug companies make more money here, can use their ad dollars to buy influence and keep the news at bay. I too am skeptical of their behavior and the media's compliance.

  15. I am not one to believe in conspiracy theories. But I do believe in the power of big business and corporations. I think Marc is right to suggest that financial motivations *can* trump medical considerations. Look at the power of the tobacco industry. Have you noticed on the forums and blogs that some people have already abandoned their MS medications because they think CCSVI is the answer to their problems? With more media attention would more people stop using their drugs? That would hurt financially the pharmaceutical companies' bottom line. Big business hires lobbyists to protect their interests. It is not out of this world to think that lobbyists have had some influence on the media.

  16. I don't believe there is an organized "conspiracy". I believe individual company decisions are made to preserve themselves and increase the bottom line. Me, I don't fully understand, I was an Education and Psych. Major.

  17. Yes Marc, I too the skeptic, also wondered why not much media on this subject which probably has helped flame some of my skepticism... I have many times said that when there is something really newsworthy to jabber-about, that CNN, Fox and the others, will be airing the information.

    Still though, I am placing much of what is sent to me from others like yourself, from the BNAC in Buffalo, and other bloggers, onto my MS blog and hope that those who are receiving my weekly e-newsletter will read these postings.

    If anybody has something for me to share with others affected by MS, please either contact me on facebook or write to: stuart@msviewsandnews.org

    My thanks to Marc for writing this article...

  18. I'm in media and know for a fact that most everything in print, broadcast, or web media supported by advertising or sponsorships is beholden to advertisers. They are given priority to be included in and shape stories, and in some instances they will demand a story be killed or their ad dollars will be pulled.

    There are still some media companies that have a strict separation between church and state. It's refreshing, but it's rare.

    Marc, you have stirred the hornets' nest, but it's a fact that needs to be discussed. People are trusting of what they see, hear and read, and don't know what goes on behind the scenes.

    A little cynicism goes a long way, and I bet a little Viagra does too!


  19. Tee hee hee, good thing you're not a cynical man!!! I'm glad people such as yourself (actually living with the disease), are able to provide a view of the questionable antics of pharma in relation to media and the trickle effect to the population. Certainly gives us some very important points to ponder. I also can't help but wonder if now isn't a good time for me to start gambling in the hopes that the liberation treatment is right around the corner and perhaps I should be personally cutting off the drug companies.

  20. My 2¢....The big business who own big pharma, also own big media! I believe that is a conflict of interest. Pharma sure doesn't want to lose 8.7 billion from MS. We are cash cows to all concerned with MS. Pharma is CERTAINLY not going to find a cure that doesn't involve patenting and selling their cr--. There is a cure for Cancer, but look at all the jobs that would be lost if it were mainstreamed. We as an "MS Underground" will stand tough and fight for testing. We can and we will!

  21. Where do insurance companies stand in your conspiracy theory? Certainly they stand to MAKE a lot more money if they don't have to pay for expensive drugs.

  22. we (as patients, and this may not be the case for you Marc)sometimes forget that without the big pharmas making a profit, there would be no drugs out there. and that is a scary thought.

    last year i was on a drug that wasn't helping me at all. and i got a glimps of what my life would be like if there were no drugs out there for me.

    without big pharma, i would not be in college right now.I would not be able to walk. I may not be able to write or speak. the hopes for my future would be gone.

    yes, i want CCSVI to work. im just saying that having to rely on big pharma is better than nothing at all.


  23. People are people, whether surgeons, businessmen, or bureaucrats. Their motives are mixed. They would not come to work each day if not paid. They have beliefs, scruples, goals that temper their pursuit of narrow self-interest. They rationalize so as to see / defend what they like and ignore / attack what they dislike.

    Surgeons thought frontal lobotomies were beneficial. Others thought anti-depressants were what was needed. Still others pushed psychotherapy. When your tool is a hammer the problems seem to be nails. We want to recognize this without becoming, for want of a better term, paranoid.

    Diets, bee stings, LDN etc. have been promoted as beneficial or even as cures. We eagerly tried Betaseron. The unsteady progression, the varieties of symptoms, the placebo effect all make MS hard to pin down and cure. Let's face that as an added dimension to the MS predicament.

    "First, do no harm." This medical tenet makes physicians cautious, especially about surgery, especially about brain surgery. Those of you who go ahead with CCSVI surgery will be doing the rest of us a service, as you will serve as the willing test subjects for something that may or may not prove to be beneficial. Thanks.

    MS afflicts about 1 in 1000 in the US and somewhat more in more northern climates. Only a small fraction of these will be as severely harmed as my beloved wife, who is quadriplegic and on a ventilator and fed through a gastric tube. We get some media coverage, but not a lot, partly due to the rarity of MS and the difficulty in portraying its varieties and severities. This is another part of our predicament.

    Those who place a lot of faith in government for a solution should consider how few we are (how few votes we have) and the degree to which this is a very expensive "pre-existing condition" for which few want to pay. Note that being elderly will effectively also be a serious pre-existing condition, when "quality - adjusted life - years" becomes the standard for choosing who gets expensive treatment.

    We have enough real problems that we need not sink to unneeded dispair. Within a few years, some of the approaches being persued will likely have succeeded. Until then, we perservere.

  24. P.S. I followed literature citations to an abstract of a very recent review article by Dr. Zamboni, concerning CCSVI, "Anomalous venous blood flow and iron deposition in multiple sclerosis."

    Here are the first three sentences: "Multiple sclerosis (MS) is primarily an autoimmune disorder of unknown origin. This review focuses on iron overload and oxidative stress as surrounding cause that leads to immunomodulation of chronic MS. Iron overload has been demonstrated in MS lesions, as a feature common with other neurodegenerative disorders."

    As I see it, even if CCSVI is found to be a significant cause of MS, surgically altering the venous blood flow might prevent further damage but would not necessarily heal already damaged regions. Further if the stimulation of the autoimmune response is not reversible, then more damage might still occur.

  25. Hi Marc,
    Good thought provoking post, thanks.

    Please go by my blog and pick up your award on Thursdays post.


  26. A comment for Douglas W Cooper

    You may be interested to know that a consortium of Vascular Specialists from 47 countries recently had a Concensus Conference in Georgetown on Veinous Anamolies, and unanimously agreed that CCSVI is a congenital disorder.

    And personally, as a woman who has lived with MS for over 20 years, I would be THRILLED id it "only" stopped progression. If I recovered function as well, that would be a bonus.

  27. Hi Marc,
    I guess the reasons for the lack of media attention in the US might be a matter of perception.

    It's far fetched but possible that the major networks and publishers in the US really are concerned enough about staying in favor of big pharma that it would shy them away from covering CCSVI, but it's unimaginable that EVERY little guy in the US media could be quieted by anything or anyone.

    An alternative concern regards whether or not a person feels that we've seen more coverage given to past potential treatments which had less evidence to bolster their believability. I can think of other past potential treatments with as little or less evidence behind them than the theory of CCSVI, but those things better lent themselves to sensationalism, and it's no surprise that sensationalism draws attention in American media (bee stings, goat's blood, parasites,etc..)

    I know I can't change anyone's conviction against their wishes but the the only "roll" CCSVI is on is in boosting the hopes of wishful laypeople by the thousands and the people behind the CCSVI theory need to provide some serious evidence to its benefit or CCSVI is going to start losing interest.

  28. Hi Marc

    This has been my first exposure to your postings and it will not be the last.

    Although CCSVI was covered in the Canadian media,my sense is that the MS Society of Canada very reluctantly picked up on it because of this coverage. Yes, the Society has asked for research proposals and a study is in the works, my concern is that this study will be structured to ensure that no benefits will be established and the procedure will be white-washed into never-never land.

    Keep up the good work. May we all see something good come of this process.

    Best wishes Bob

  29. Would just like to once again thank everybody for their thoughtful and insightful comments. I welcome all opinions, whether in agreement or in opposition with my own.

    A healthy dialogue is the only way to understand the intricacies of medical research and its relationship to the interests of both patients and bean counters.

    I'm most appreciative of the commentary that this post prompted...

  30. Marc,
    Check out Dr. Terry Wahls from Iowa
    Up from the Chair with secondary Progressive

    400 attended in Calgary

  31. Thank you Marc, for a very interesting presentation on CCSVI. You help me stay well informed as I no longer spend a lot of time searching out information for treatments of MS on the internet. Sixteen years of reading NMSS research memos has jaded me, I suppose.

    I find it interesting that while this entry caused quite a stir, I am astounded at how many people responded anonymously. Seriously, people. Own it.

  32. I enjoyed the post and feel the questions you raised were valid. This whole CCSVI thing brings up lots of questions that like why a pharmacological maybe is better than a vascular one? Like why when I speak to my neurologist about diet, exercise, or yoga, the conversation is much shorter and then when we're discussing drug therapies. Why he hadn't even heard of CCSVI as of last Wednesday? Why when first given the info, did he go straight to the NMSS wed site and used it as his barometer and not a medical web site? I could go on and on. If you're so inclined, you can check out my blog posts on the subject at: www.enterthecircle.com.

    PS - Congrats on being a MebBlog Finalist - you got my vote.

  33. In response to "Anonymous":

    If CCSVI is congenital, that leaves open the possibilities that it is genetic, environmental (maternal, uterine), or both. MS shows itself typically decades after birth, which doesn't rule any of these possibilities out, either. So far, that does not advance us greatly. What will advance us is when we know that correcting CCSVI does indeed stop progression of MS, better yet that it also restores some function.

    Unfortunately, "stopping progression" is a tricky end-point to determine, as MS can slow or stop progressing spontaneously.

    With a large number of CCSI surgeries in the near future, we should have a better idea whether this is a help, a cure, or a mistake.

    We hope for success, while not betting heavily on it.

  34. Robert, watch all these videos - they are the "serious evidence" you seek !!!


    I'm pretty sure you'll change your tune after watching them. Don't forget to hit the full screen button in the lower right corner of the 'TV' screen. They play consecutivly after a few second delay. Best videos I've seen yet and I've seen dozens of them.

  35. http://www.huffingtonpost.com/erika-milvy/possible-ms-breakthrough_b_396448.html

    Did you see this article? Written by my partner who was born and raised in NY. I love you blog and videos and photos! Pearl

  36. Your, I mean. Freudian slip.