Thursday, August 2, 2007

Finding Accurate Information

When I was first diagnosed back in 2002, I did what everyone does. First I panicked. Then I got busy trying to learn everything I could about lymphoma. There wasn’t as much information on the web as there is now, but there was still enough to make my head spin, and I couldn’t help but wonder what was accurate and what wasn’t. What applied to me and what didn’t? And how was I to know the difference?

Truth is, we’re all desperate to find answers, but we need to separate the snake oil from the truth. I came to the conclusion that accurate information could only be found on sites that provided evidence-based medicine, meaning that the information was based on studies and trials rather than opinion. Much as I wanted to find an “easy” answer to my dilemma, and much as I wanted to avoid chemotherapy, I suspected that that drinking 8 gallons of carrot juice a day would do little more than give me an orange tint. And no, I’m certainly not against complementary therapies. I just wanted to know that whatever path I chose had been scientifically proven to work.

I also found some sites that required me to pay for information, and I wondered who was profiting from my illness – and why. There are too many reputable agencies which provide free information, such as The American Cancer Society and The Lymphoma Research Foundation.

I did stumble onto a site which I have followed for some time now and which is, in my humble opinion, the best “one stop shop” for information about lymphoma. It’s at and it’s run by a group called Patients Against Lymphoma. It was started several years ago by a gentleman named Karl Schwartz whose wife had lymphoma and is now doing well. Karl and the others have devoted their lives to gathering and sharing information which is evidence-based. The site doesn’t attempt to “play doctor” by recommending one thing or another, but it does provide up to date information on clinical trials, new treatments, etc. I’ve found it to be a trustworthy site for accurate information.

I’ve always believed that knowledge empowers us, but it’s even more important to have the right knowledge. In this day of information overload, we all need to be careful about whose advice we follow.


1 comment:

Anonymous said...

Good Morning Betsy:

Thanks again for what you call "your humble opinion". Andy and I are exactly at the point where "our heads are spinning". You don't know who is telling you the "truth" and for what reasons... Do they have something to gain ($$$$) from your illness, or are they really trying to make you BETTER???? That is the ALMIGHTY question!!!!!
Thanks Betsy for what you continue to do!
Andy & Gmck