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...