Wednesday, March 10, 2010

A Rant

The most recent findings related to the whole Zamboni theory come from the USA. While I don't have the exact number of participants in this study at my fingertips (a quick search on Google will turn up the study I'm sure), up to 63% of MS patients tested were found to have the vein occlusion Dr. Zamboni described. Many supporters of the vascular theory are now proclaiming victory saying that this proves Zamboni's case. It doesn't. It adds weight to it, but falls far short of proof of anything.

This study also revealed that up to 25% of non MS participants had the same vein occlusions. That's the part that I found interesting. 25%! These people will now have to be followed (or at least should be) to see if they develop MS as a result of their occlusions.

The two populations must be examined to determine the differences between them and why one group has MS and the other doesn't.

The reality is that both Zamboni's study and the follow up American study add to the whole puzzle that is MS. But they neither prove nor disprove anything.

Did you know that the medical MS field has known about Zamboni and his theory for a couple of years? If it was such a great idea why didn't they jump on board earlier? The simple reason is that Zamboni's research isn't enough. Other people have to replicate his findings.

Trevis Gleason is a blogger for whom I have a great deal of respect. He is much more eloquent than I and much more diplomatic. On a post a couple of weeks ago, I responded with my opinion about Zamboni. Another poster didn't like what I had to say about Zamboni's theory and research and rather than fight on someone else's blog, I'm going to state my case on MY blog.

I said that Zamboni's research was sloppy. To be fair, it was more the presentation of his research that I found sloppy. I had more questions after the airing of the W5 episode he was featured on than I could find answers for. How many participants did he screen for the venal occlusion before he settled on 65? Did he have any control subjects? How many required a second operation to treat the occlusions? Did he do animal studies first? Those are just a few of the questions I had.

I said that Zamboni was unethical in treating his wife. My critic said Zamboni didn't treat his wife, that a colleague did. If Zamboni included his wife in the study, whoever physically treated the woman is irrelevant. She was under Zamboni's treatment and therefore was treated by him. That is unethical. At least, in Canada and the United States it is unethical to treat a family member.

As you can probably tell, I'm still hot under the collar about all this. Why? False hope. I have encountered more people in the past couple of months who are talking about the "cure" for MS. They don't realize this is not a cure. It is an experimental treatment at best, and a waste of money and time (for those willing to spend their savings on travel to a foreign country and an operation) at worst.

Yes, I believe research into Zamboni's theory should continue. But as I've told a number of folks, don't put all your eggs in this one basket. It will be years before we know if this is the cure.

Years ago, it was theorized that MS was caused by Epstein Barr virus, the virus that causes mononucleosis, the kissing disease. Up to 95% of the entire world's population has had exposure to this virus and would test positive for it if given the blood test. Measles affects 30-40 million people a year and many more milliion have been vaccinated or have had the disease and would test positive for it. Measles has also been a suspect in the pathogenesis of MS. My point is that there are more likely suspects than the vascular theory.

And please stop believing that neurologists and Big Pharma are conspiring to keep us from finding a cure. That's just not happening.



kmilyun said...

Well spear me rascally rabbit someone else who is not hopping on the bandwagon.

This "study" has not yet been replicated and right now desperate and/or hopeful folks' enthusiasm coupled with what my high-school science teacher would grad "shoddy" research techniques have sure fired the flames.

It could be Lorenzo's Oil or the Bee Sting Cure - there is not enough data in to decide.

Thanks for the post


Kim said...

Well put. I want to see the science too around all of this and it makes me sad hearing about the cash out of pocket being put into overseas doctors with less standards than we have here in Canada.

Diane J Standiford said...

I keep saying: Since the day I was DX MS in 1990, NYT headline read: CURE FOR MS" Over the years, ideas come and go over and over and over and over and over and...every study/discover/drug should be FDA required to add to the label: "Take with a grain of salt." (Also any of my OWN ideas. I am only a person with MS, sifting through all the info coming at me and searching for answers.