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"
Why is it that every time a person is introduced to a new theory, advance in medical treatment, or dare I say it, a spectacular event there has to be a tongue in cheek attitude? Ask someone who has had the procedure done. I have Secondary Progressive Multiple Sclerosis. I am now standing where a month ago my wheelchair was my constant companion.
http://www.youtube.com/user/mammananny
Hi mammananny,
Thank you for sharing the before and after of the procedure. You and your husband do look truly liberated and very thankful. You have give me and many others much hope for the future. KEEP ON ADVOCATING FOR CCSVI!!!!
Best wishes for your continued progress …
MS is a neurological fraud.
CCSVI is a vascular problem.
May-Thurner Syndrome is the needed diagnostic.
http://www.thisisms.com/ftopicp-120430.html
I’m so glad Julie is discussing this topic so rationally. Patients often demand drugs or treatments which are not good for them. Michael Jackson comes to mind. Also, many of us demand antibiotics for bad colds which are not caused by bacteria. Many of us will no longer respond to these drugs when we actually do have an illness caused by bacteria. Why does anyone want to pay thousands for a procedure that has not been proven scientifically to help us? In fact, it might kill us or make us more disabled.
i was very pleased to have someone refer me to the times article. although i have been following the ccvsi literature since last november, the presentation in the times summed up several ‘things’ i did not know and i thought it did a sufficient job of covering the subject, if not introducing the subject, to the general public. i was glad to see the general broadcast of the subject in such a visible forum. it also was a good overview for my family to understand what i have been talking about. in regards to trials and rapidity of the medical profession in ‘tackling’ ccsvi research, i had an mrv in january which showed my left jugular consistently very narrow from heart to brain and the 3 ms drs. i showed it to (the 3 i regularly see) said the usual, ’see you in 6 months’; in fact, i was the one that first told all 3 about the subject last winter and they copied the literature i brought in to show them as they had none in their files. i would have thought the severeness and completeness of my narrowed vein, in comparison to, for example, with ‘only’ a kink, would have them interested enough to study me or refer me to someone more into research but to the contrary. i for one am somewhat irritated at the slow pickup of the medical profession, at least here in austin, in following up on such an obvious data set. if they are so busy telling patients, ‘look left, look right, walk down the hall, etc.’ that they do not have time to stay current with their field then they should be prepared to refer patients to someone who does. as a scientist myself, when something this potentially ‘game changing’ enters my field, we jump all over it, not necessarily to embrace it but to understand it, and we do not let the subject lie fallow waiting for more to happen – and i do not see that energy with ccsvi research at the daily practioner level, and i see the supposedly top 3 ms drs. here in austin. let there be no doubt, i like receiving julie’s newsletter and always follow several of the links.
I just want to say thanks Julie for all the work you
put into this blog – It is so informative, unbiased and knowledgeable – I really appreciate it!
Persuant to my comment above, Facebook has deactivated my account against the simple principle of natural justice of specifying my deregatory conduct. First Amendment rights do not apply…nor do the Canadian charter of rights and freedom of speech.
Truth Shall Prevail.
Yes, of 3 treated at Euromedic, Poland this spring, one (a woman) has gotten worse. The two others (men) are getting better.
One man treated at Ameds, Poland, in June reports positive results so far.
There are at least one treated in Bulgaria from our country but there is no reports of that.
Several other MS-sufferers are now going to Poland for the procedure.
Hope for a follow up of the patients who have been getting worse or did not benefit from the treatment from dr Simka of Euromedic because Euromedic has treated more than 300 patients now.
This is difficult for the patients in our smal country because the neuros are very much against the procedure and they rule here. I am positive this far.
Stem cells are “non-specialized” cells that have the potential to form into other types of specific cells, such as blood, muscles or nerves. They are unlike “differentiated” cells which have already become whatever organ or structure they are in the body. Stem cells are present throughout our body, but more abundant in a fetus.
Medical researchers and scientists believe that stem cell therapy will, in the near future, advance medicine dramatically and change the course of disease treatment. This is because stem cells have the ability to grow into any kind of cell and, if transplanted into the body, will relocate to the damaged tissue, replacing it. For example, neural cells in the spinal cord, brain, optic nerves, or other parts of the central nervous system that have been injured can be replaced by injected stem cells. Various stem cell therapies are already practiced, a popular one being bone marrow transplants that are used to treat leukemia. In theory and in fact, lifeless cells anywhere in the body, no matter what the cause of the disease or injury, can be replaced with vigorous new cells because of the remarkable plasticity of stem cells. Biomed companies predict that with all of the research activity in stem cell therapy currently being directed toward the technology, a wider range of disease types including cancer, diabetes, spinal cord injury, and even multiple sclerosis will be effectively treated in the future. Recently announced trials are now underway to study both safety and efficacy of autologous stem cell transplantation in MS patients because of promising early results from previous trials.http://www.neurosurgeonindia.org/