I know a number of myeloma patients and caregivers that are reluctant to use the internet as an information source. They site negative and inaccurate information as the reason why.
We all know that the internet is an almost miraculous source of information, linking research from all over the world and placing it at our fingertips. And by now we should all also realize that it is a bit of a “buyer beware” type of situation. The statement, “Don’t believe everything you read on the internet!” is true. BUT, I’m hear to remind you not to “throw the baby out with the bathwater.”
If you stick to credible sites and read blogs with a skeptical eye (except for mine, of course!), I believe most information you get on the web about multiple myeloma is solid. Still, many don’t read them because of the “negative” thing.
Stats are a funny thing. Often its all about how you spin them. It may seem insensitive, but most researchers aren’t thinking about how a patient or loved-one will react as they read their abstracts.
Here’s some unsolicited advice. Just because you deem a site as “negative” doesn’t mean it’s inaccurate. I would hate for you to miss some helpful information just because you don’t like–or agree with–some other statistics. Let me give you an example.
Yesterday I included an excerpt from an article about advances in myeloma therapy from the San Francisco Chronicle. The excerpt ended this way:
After five years, about 34 percent of people diagnosed with multiple myeloma will still be alive, one of the lowest survival rates among all cancers. While there’s still no cure, newly approved drugs and other treatments currently undergoing testing are offering hope and results for patients…
The first sentence is what some reader’s would consider negative. “Only 34% live five years? That can’t be true!” Despite the follow-up statement about “hope” and “results,” some stop reading there. Or never bother reading at all.
And that’s a shame. Because being a well educated myeloma patient/caregiver makes one much more likely to be a part of the 34%!
Don’t lose focus because you don’t like the way some of these overall survival (OS) stats make you feel. You aren’t a statistic! Don’t let negative statistics discourage you! Remember that statistics like these take many years to change. Simply move-on and glean whatever useful info you can from a website, article or blog post.
Information is power! And an informed patient consumer shouldn’t pick-and-choose based on a feeling.
So read as much as you can whenever you can. You or your loved one’s life may depend on it! Feel good and keep smiling! Pat