Wednesday, January 27, 2010

The Truth is Out There

Finally. The truth is getting out there. And it will continue to be revealed. Too bad my fellow members of the media failed to do their jobs in the first place and present all the evidence.

I direct your attention to two articles recently published that discuss all of my previous concerns about Dr. Zamboni's Liberation treatment for MS.

Article one.

Article two.

I spoke with a woman last weekend who held out hope for this treatment. When I explained to her that the evidence to support Dr. Zamboni was not there and that there still remained too many unanswered questions for people to be jumping on his bandwagon, she was greatly disappointed. I explained to her, as well, that even if this treatment actually worked, she would not get any better as far as her MS went. It just would not progress. (She is already greatly dependent on a wheelchair)

I asked her if she was a member of the MS Society, had she signed up for any e-mail lists to get up to date and reliable information about MS? No, she told me. Why not? She didn't really give me a good answer. A person with MS for 20 years not asking for information from the MS Society? Where did she get information? From the internet and from people who "cared" about her who heard about different things she should look into.

I am so frustrated, I am almost at a loss for words. Can you say "denial"? What does it take for people to open their eyes and use their minds for themselves? When will they realize that they alone are responsible for their health and they have to research for themselves what they are ingesting or submitting to?

Arrgh. OK, here's an example. A well meaning person years ago told me that I should try Noni Noni juice. So I checked it out. It's an interesting fruit found in the Pacific with a good bit of Vitamin C, though not as much as oranges. That's about all it's got, besides an apparently nasty smell. Claims of its medicinal uses ranged from treating ADHD to menstrual cramps and immune deficiency. Immune deficiency! MSers don't have immune deficiencies, we have overactive immune systems. Do I want to take something that might stimulate my immune system? Nope. My point is that I looked at this juice from both sides. There was no medical literature to support any claims of it being of benefit to me and if I want Vitamin C I'll have an orange. It's cheaper. So I made an informed decision about whether or not to use it.

We do this all the time when we get prescriptions from our docs. We are told why we should take a drug and what might happen if we don't and then we ask about side effects. We then have both sides to determine whether or not we should use the drug.

The other thing that is getting to me about this whole Zamboni affair, are the conspiracy theories that are popping up everywhere. "The docs and researchers are in the pockets of Big Pharma" is the mantra of these folk. "The docs and researchers don't want to look at anything that might put them out of business" is another line I hear. Bull feathers!! Any doc or researcher worth his salt will look at any idea that has merit and ask questions about how it works, and why it could or couldn't be of use.

I was wondering why CTV had not interviewed neuros who had opposing views to Zamboni, as that would have been the ethical journalistic approach. Apparently they did! But they didn't air those bits, which is just as unethical as not asking for opposing views. From this point on I'm afraid that I cannot trust the reporting of CTV on this or any other matter. (My personal boycott of CTV's program W5 will have little impact on them, I'm sure.) To be honest, if I hear a story that makes me think there's more to it than is being broadcast, I will research it. There is little I take at face value and I'm critical of the bigger news machines, especially when they omit information or distort facts. What else have they not told us? What else have they distorted?

As a member of the media for 25 years I had always joking said, "Don't trust the media". In other words, look it up for yourself. Get all sides of a story. Then decide.


Travelogue for the Universe said...

I am confident my doctor who is a world known MS specialist and developer of early interferon is working with other competent, thoughtful neurologists to find the actual cause and cure not snake oil salesmen. I worry people do not know this and will progress faster than they need to. My article called Wheelchair Repellant is listed under under Mary 50. I talk about how MS people need a good neurologist and current accepted meds not a quack.Thanks for this topic. Mary

Shauna said...

Hi Mary,

This is a multi-faceted problem. First of all, there are no effective treatments for the more advanced cases of MS. Even for relapsing-remitting MS, some folks are just not able to tolerate the current DMDs. Some can't afford them. Add on to that, a segment of the population who are in denial about their illness, that they keep it from family and friends, and refuse to learn about their disease from reputable sources, then you've got a recipe for ignorance and paranoia.

Thanks for coming by!


Herrad said...

Hi Shauna,

Good post, I agree about never accepting things at face value.
I always do my own research too.

Please come by my blog and pick up your award.

Joan said...

Well said!