Image by Steve Rhodes via Flickr
Well, I find myself in a classic good news/bad news situation. The good news is that I was featured prominently in a Canadian newspaper article about CCSVI (click here). The bad news is that while I did say everything that is attributed to me in the article, the reporter chose to feature some of the more glib comments I made during our 40 minute conversation, the majority of which I spent talking seriously about the promise of CCSVI and the righteous desperation felt by MS patients worldwide.
I suppose the best way to handle this is to just go quote by quote, and explain the context in which each was said. So, here goes...
“If CCSVI turns out to be gospel truth and it actually helps people then it’s terrific for the patients that are getting the procedure and getting benefit from it. But it’s doing nothing to advance the science — which is really what needs to happen,” says Marc Stecker, who has MS and who writes about life with the disease on the blog Wheelchair Kamikaze.
Well, I think that one is pretty self-explanatory. I've repeatedly said on this blog that scientifically valid trials are desperately needed to either confirm or refute the CCSVI hypothesis. The same sentiment has been expressed by Dr. Zamboni, Dr. Zivadinov, Dr. Sclafani, and other prominent CCSVI researchers. I completely understand patients spending their own money and getting treated however they can; after all, I followed much the same route. But before CCSVI will be recognized as anything other than rogue science, traditional blinded studies must be carried out.
As I explained in a recent post on this blog (click here), I now believe that treatment trials should be given the utmost priority, as these will not only prove or disprove the correlation of CCSVI with MS, but will also demonstrate whether or not the liberation procedure is truly beneficial to MS patients. Treatment trials will also allow for the refinement of the liberation procedure, which right now is limited to either balloon venoplasty, which has been shown to be impermanent in many patients, or to the use of stents, which carry risks both known and unknown. If trials do prove that CCSVI plays a major role in the MS puzzle, as I'm confident they will, I believe the liberation procedures being performed in a year or two will differ significantly from those being done today.
“I call them the miracle videos,” Stecker, who lives in New York and who has had MS since 2003, says of some of the testimonials. “You see before and the person is struggling to get by on like two canes and a crane. And then the day after they show them sauntering around Poland or wherever they’ve gone to have the procedure done.”
Written out in black-and-white, the above quote makes it appear that I was demeaning the people who received benefit from the liberation procedure, when I was (pretty lamely) trying to be amusing. The reporter left out the fact that after making the above utterance, I said that I didn't think that any patients in the videos were faking, and was truly happy for those who found relief. I then spent several minutes discussing how such results could lead to a rethinking of the MS disease process, because given our current understanding of Multiple Sclerosis it is difficult to explain such dramatic improvements from a traditional medical point of view. MS patients with significant disabilities are thought to have significant nerve damage, and for those disabilities to dissipate in the course of a day or two would require nerve regeneration at an impossible rate. I also explained that the liberation procedure might lead to a sudden diminishment in CNS inflammation, but even that process would take longer than the day or two often portrayed in the before/after videos. In retrospect, I should have been more circumspect about how I presented my views, but my natural inclination is to talk about things in an informal, humorous way, as is evidenced by this next (and last) quote:
“A couple of us haven’t seen great results — it’s like the liberation losers’ league,” Stecker quips.“I know personally through the blog and from people that I’ve met just in MS circles who have had it done (that) it seems to be that it’s not a small percentage that are not finding any benefit.”
To be fair, the reporter does preface this quote by saying that my liberation procedure was unable to open the blockages found in my veins, but again, the quote she chose to use makes it appear that I'm much more negative about CCSVI than anybody who reads this blog regularly knows that I am. I can't even take credit for the" liberation losers league" quip, as that phrase was coined by a fellow MSer who is quite funny and whose venous blockages were also unable to be corrected.
Although the tone of the above quote rings flat, I do stand by its substance. In the enthusiastic embrace that the MS community has given CCSVI, it's often overlooked, or not even mentioned, that there are many patients who have undergone liberation that have not experienced any benefit from the procedure. These include not only patients who have problematic blockages, but also those whose procedure was "successful " but still didn't experience any significant improvement in their MS symptoms. It's been estimated that over 1000 liberation procedures have been performed worldwide. We really only know the results of a few dozen of them. MS is a complex disease, and I've repeatedly said that I believe that CCSVI will likely play a major role in the disease process of some patients, but just as likely play very little part in that of others. My greatest hope would be that CCSVI turns out to be the end of Multiple Sclerosis as we know it, but reason tells me that, unfortunately, this probably won't be the case.
It's often said that there is no such thing as bad publicity, and I'm constantly amazed that this blog has received the attention that it has, but I guess I have a lot to learn about dealing with the press. I hung up the phone after talking to the reporter thinking that I'd given her a positive, well reasoned, and balanced account of the issues surrounding CCSVI, never imagining that my few flippant attempts at light banter would show up in black-and-white on the printed page.
Lesson learned: be careful what you say to reporters...
Ahh, the drawbacks of being famous. People will use you , what you say, or do anyway they want. Must be frustrating not to get your real message out. Oh well. Maybe the article will at least let people know about your blog. Then they can come here to get the real story. Bummer though.ReplyDelete
Oh Marc, I had a situations similar to this with a local paper. It was as if the well thought-out and reasoned portion of what I said was of no interest to the reporter. Rather, she gravitated to the simplistic off-the-cuff quips that did not begin to encompass my opinions on a very complex controversial subject. And, which made me sound more radical or slanted than I was on the subject.ReplyDelete
I avoid reporters now. Come to think of it, reading doc notes is similar. Some docs like to quote me in their notes. One noted that I said, "Ambien is evil." Oh crikey, I was just saying that it wasn't a good choice for me!
Keep doing your good work with your new knowledge!
Marc, it’s unfortunate that the journalist took your comments out of context, but I am convinced that she would have done so no matter how you had formulated your points. It is unlikely that she was trying to provide an objective overview (as we saw in the NY Times article) but was undoubtedly out to portray CCSVI in a more negative light. Quotes and statistics can be (and are often) taken out of context in order to support the author’s arguments. Journalism is supposed to be objective, but we know that is just not the case.ReplyDelete
One point that I would like to make that is often overlooked with respect to CCSVI is that to the extent that disease progression is slowed or stopped, the Liberation procedure should be considered a success. To find this out will take time and that is why those undergoing the procedure should be closely followed up. Any symptom improvement is just gravy – and lack of immediate symptom improvement should not be classified as a failure.
Please don’t let this article bother you. We all still believe in you.
Being quoted out of context? A story old as time. Be careful out there!ReplyDelete
Oh the ever glorious and wordtwisting Media! The media is the one to blame here with regards to the unbias, trustworthy, factual advancment of CCSVI. (lack thereof) You say green they report red. You say good they make it controversial. IF all news was good these monkeys would have nothing to report. They love to muddy it up. Have you watched the first 15 minutes of your local news lately? Dont.ReplyDelete
An MS friend of mine, kicker, when asked if the CCSVI story was a fresh new start for MS, said "...a story old as time." And then when asked if CCSVI is safe, said, "be careful out there."ReplyDelete
Oops. There you go again, kicker. Quoted out of context :-)
Don't worry Marc, we know where you stand on these issues, but I feel your frustration.
It is amazing how what is said is not always what is heard then repeated. Has happened to me before. I gave an interview after hurricane Katrina and someone said That I said to not give a donation to our troops to give it to the hurricane victims I NEVERRRR SAID THAT. I was LIVID. Matter of fact she said I said FORGET THE TROOOPS HELP THESEE PEOPLE! I could have just ugh! I tell ya!ReplyDelete
My dear Marc, here in Sweden it seems like all reporters have to ask one and one only doctor before they write anything about CCSVI. Then us Swedes get awfully annoyed. They wrote about Tysabri and that medicine has killed 17 people so far, but that seems to be allright.ReplyDelete
We just want to know that our medicine men and women do everything possible in order to find out everything about the CCSVI hypothesis. But there is no way to find out.
Marc: No big deal. Those of us who read your blog regularly know your attitude about CCSVI and MS. No need to back peddle or apologize for anything. Cheers! __DaveReplyDelete
Always a fan. :) No matter what you say. lolReplyDelete
See you on the Today Show.
I never expected to see Liberation Losers' League, our special club, in print. Next time you're interviewed remember most people don't share our sarcasm.ReplyDelete
I remember this story from college and it oddly keeps coming to mind these days... I think I now may even understand the prof's point. LOLReplyDelete
The blind man who feels a leg says the elephant is like a pillar; the one who feels the tail says the elephant is like a rope; the one who feels the trunk says the elephant is like a tree branch; the one who feels the ear says the elephant is like a hand fan; the one who feels the belly says the elephant is like a wall; and the one who feels the tusk says the elephant is like a solid pipe.
A wise man explains to them:
"All of you are right. The reason every one of you is telling it differently is because each one of you touched the different part of the elephant. So, actually the elephant has all the features you mentioned."
Thank you for this response to the article in which you were written up in.ReplyDelete
I would suspect you have more readers here from around the world then the publication and reporter in question so I would not lose any sleep over it.
You have corrected it all here for the World to see and if the publication has any respect for it's readers they will correct themselves the next time or those readers will start to drop like flies.:)
Thanks for all the supportive comments, folks. They are very, very much appreciated. Just another lesson learned on the road of life, the reporter was only doing her job, I didn't understand my role in that particular bit of theater. Suffice it to say, now I do...ReplyDelete
You have become a voice for many. With great power comes great responsibility. You are wonderful!
If I have had stenosis all my life, how can I expect a quick recovery. The focus should be on progression not recovery. If after liberation I regain something that MS stole from me great. If returning optimal blood flow puts MS behind bars, all the better.ReplyDelete
The above coment got sent before I was done, sorry. I am still a follower, remember no such as bad press.ReplyDelete
Well as a former reporter, I can attest to the assertion somebody made - they're looking for the most inflammatory quotes, not necessarily the truth. Believe me, you are a better writer than the reporter and you voice objective, well-researched opinions on this blog. I concur - see you on the Today Show!ReplyDelete
Going on a wise friend's advice, when I was interviewed by the Philly Inquirer, I requested to see all quotes of mine before publication so that I could review them for accuracy.ReplyDelete
The reporter emailed the section containing my quotes before the article was published.
Just something to think about for next time. In the meantime, your credibility far outweighs any badly written nonsense.
To sum up all of your responses...
Elbert Hubbard said it perfectly.
Never explain..Your friends do not need it, and your enemies will no believe it anyway.
We all know where you and your heart are..
No need to defend yourself to us Marc...but seriously you weren't smoking pot before the interview were you? I am sooooo kidding. Everything you said makes sense to me, in and out of context...people listen for what they want to hear...not always all that is being said. What did you think about the MS Web conference the other day? I was really psyched about the stem cell stuff...but it is far into the future...not so great if you have primary progressive disease right now. Thank you for being a voice for all of us. I know I for one am proud to know that someone as thoughtful as you are is talking to the press.ReplyDelete
I don't know if you're going to like this or not but the NMSS posted this story on their website:ReplyDelete
Marc, I thought your remarks were clever and informative. People need to lighten up and understand that with MS, if you don't laugh a bit, you will never stop crying.ReplyDelete
As for reporters, I am sick of them getting off with "just doing their jobs". Their job is to be expository, informative and accurate. It is a freedom of great value. We can watch politics for inflammatory remarks taken out of context.
You are still the best blogger around. Don't change!
Marc, it's these quotations that people will remember and pay attention to more than dry statements that won't stick in their memory. These are the statements that stuck with the reporter more too--I think he/she liked them. It is a serious subject, but I don't think the gravity of the issue is lost. At the same time, yeah, I'd want my more serious comments quoted if I were in the same position.ReplyDelete
I know that you are still skeptical of CCSVI in relation to MS Marc but I have decided to look at this from a different perspective. What has happened is that we have started from the perspective of something called Multiple Sclerosis, with no known genesis, and tried to find a cause. Imagine we found CCSVI first. Then imagine we learned how to treat it quickly. Symptoms would often get no worse than headaches, heat issues, vision problems, cold extremities, tinnitus, etc. Some people would choose to ignore these symptoms or would not seek treatment for one reason or another. These people would start to suffer nerve damage, demyelination, have trouble walking. The brain or CNS has been living in an unhealthy environment for too long. I think this is a matter of timing and focus. I have read your previous posts and the questions you have, but respectfully I would say that many of your questions have to do with interpreting CCSVI through the lens of MS, when we might do well to do the opposite.ReplyDelete
Again, thanks for all the sage advice and words of encouragement. It's all very much appreciated, and like I said, I'll just chalk this incident up to experience, or inexperience, whatever the case may be.ReplyDelete
Vladimir, I'm not quite sure why some folks still think of me as a CCSVI skeptic, when I have in fact undergone an attempted liberation procedure myself. Can't be more of a believer than that, I would think. While I'm not completely sold on CCSVI as the panacea for all things MS, as some are, I certainly do believe the hypothesis will prove to play a large role in the MS puzzle. I don't think it's THE answer, but I do think it's a significant development that will ultimately lead to a rethinking of all things MS. That said, there is still a lot to learn regarding the CCSVI model and the most effective ways of treating the condition.
I do hope you actually read these. A friend of mine was recently diagnosed with MS. Her Mom has been looking for alternative answers much like you. She did see the CCSVI work written up. I asked a chiropractor friend of mine what she thought about that theory and she said it made sense to her as she has success reducing symptoms with her MS patients with spinal adjustments. That may temporarily improve the flow of the veins. Just wondering if you have a chiropractor? PeggyReplyDelete