TOUCHED BY LYME: Wisdom of the Lyme Crowd
As a Lyme support group leader, the first piece of advice I give anyone dealing with tick-borne infections is to join at least one on-line support group, such as CaliforniaLyme. The reason? In the topsy-turvy world of Lyme disease, people who have traveled this difficult road before you are a priceless resource.
As a Lyme support group leader, the first piece of advice I give anyone dealing with tick-borne infections is to join at least one on-line support group, such as CaliforniaLyme. (There are affiliated yahoo groups for most states. Other possibilities are Lymenet, Lyme Aid, Eurolyme, and Facebook’s Lyme Awareness Group.)
The reason? In the topsy-turvy world of Lyme disease, people who have traveled this difficult road before you are a priceless resource. The cold hard reality is that even the best Lyme-literate doctor can’t spend hours and hours with you. An even colder reality is that few people have access to Lyme-literate doctors at all, even if they know they have Lyme. And there are many other folks stumbling around in the dark, trying to find answers to their serious health problems, with little or no help from the medical establishment.
In the case of Lyme disease, one of the best ways to find out what questions to ask, what resources exist, and what might be a logical next step for you…is from an on-line Lyme support group.
Now, along comes an official study to validate what the Lyme community has known for ages: internet support groups can help you get well.
The study is called “The Wisdom of Patients: Health Care Meets Online Social Media.” It was prepared for the California HealthCare Foundation by health economist Jane Sarasohn-Khan. In it, she documents the growth of health-related social media, which includes on-line forums, blogs, Facebook, etc.
She talks about the power of collective wisdom: the more participants there are in a social network, the more value they create. “When patients managing the same chronic condition share observations with each other,” she writes, “their collective wisdom can yield clinical insights well beyond the understanding of any single patient or physician.”
She refers to a book called The Wisdom of Crowds, where author James Surowiecki notes that “groups are remarkably intelligent, and are often smarter than the smartest people in them.”
I’ve found this so true in the on-line groups in which I’ve participated through the years. Let’s say your doctor puts you on a new medication, which comes with the usual disclaimers from the drug company about eating with or without food, etc. You follow all the instructions, and you feel nauseated after you take it. If you post a question about that on-line before you go to bed, you might have five answers waiting for you when you boot up the next morning.
(This is how I found out my daughter shouldn’t take Flagyl with orange juice. The official recommendation is to not take it with alcohol. But somebody on-line suggested avoiding orange juice as well—and this solved our problem.)
Should you be careful about following advice from people you don’t know? Of course you should! But getting a range of suggestions from people with direct knowledge of the topic at hand is a good thing. They may look at it from an angle you hadn’t thought of, have experience that relates, or point you to a helpful website.
Apparently, Sarasohn-Kahn didn’t study Lyme groups specifically. But her research focusing on an internet group about multiple sclerosis, patientslikeme.com, led her to observe, “The collective wisdom on this Web site may rival the body of information that any single medical school or pharmaceutical company has assembled in the field of MS.”
The exact same thing can be said about many Lyme websites and support groups. Because the IDSA has a stranglehold on Lyme research and information, because the medical establishment erects barriers to proper diagnosis and treatment of Lyme disease, the collective wisdom of Lyme patients remains one of the best things going for us. I would venture to say the collective wisdom of Lyme patients will eventually be what will help change the medical system in this country, for the better.
If you haven’t already done so, why not join the conversation on one of the on-line groups mentioned in my first paragraph? There’s a lot of work to be done and we need your wisdom.
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