The New York Times has gotten "in the game" (in our game, at least) and posted a full-length article on CCSVI: From M.S. Patients, Outcry for Unproved Treatment
I had run across this myself last night while winding down and scanning the New York Times online - by this morning, no fewer than 20 people had sent me a link to this article. As a person living with multiple sclerosis who also tries to bring news to others with MS, I find the writing style kind of fascinating. For instance, I go out of my way to never refer to a person with MS as a "patient," unless the article is about our actual role as patients in a relationship with a physician. The rest of the time, we are people. Just a nuance, but an important one to me.
I am intrigued with how easily the author, Denise Grady, mentions facts and anecdotes about CCSVI and the "liberation procedure" - she states things once with minimal detail, but gets her point across. I am always backtracking and try to avoid saying things in general terms, because I figure that if I want to know, surely many of you will, too. This statement would make me nervous, for instance: "Another doctor, Marian Simka, who has been performing the procedure in Pszczyna, Poland, has reported that it has made symptoms worse in some patients." What does that mean? I'm going to look it up. I'll get back to you.
Anyway, if you haven't yet read the article, take a look. Remember, this article is not written for those of us closer to the matter, it's written to explain what is going on to the rest of the world - for me, it is an odd experience to read about the whole CCSVI thing this way, from kind of an outsider's perspective.
I am truly enjoying reading all of the comments posted on Tara-Parker Pope's blog, Well, posted by people with MS and those hearing about CCSVI for the first time (I am guiltily imagining a cocktail party with all of these people in attendance - how I would love to see that). Check them out (and contribute) yourself: An Unproven Treatment for Multiple Sclerosis. Of course, as always, you are welcome to leave your feelings in the comment section below.
Read more about CCSVI:
- Scientists Call for "Ethical Consciousness" Around CCSVI Treatment and Research
- What is CCSVI in Multiple Sclerosis?
- What Causes CCSVI?
- What Do the Results of the "Buffalo CCSVI Study" Mean, Anyway?
- CCSVI Treatment Reports From Patients
- CCSVI Presented in an Elegant and Thoughtful Way
- CCSVI Treatments Halted at Stanford After Two "Adverse Events"