0 Reflections On Patient Responses to the Media - Tribune

A lot of patients diagnosed with Chronic Lyme Disease took exception to the Chicago Tribune “Chronic Lyme: a dubious diagnosis”  article and slammed it, as expected. At first, it was an emotional appeal in comments online - “we’re suffering here, and I know this disease is real, how can you tell anyone it isn’t?” 

But over time comments began to shift to show some arguments and citations to support the existence of Chronic Lyme, which would have been a better response in the first place to authors who were stating from the get-go that it’s patient advocacy groups and patients wanting their experiences to be heard that are more important than science and evidence. Part of this shift took place due to the efforts of Lyme Policy Wonk's column on CALDA, stating to patients, "Please do not write about personal stories. They will not further this effort and may detract from it." But part of it was also individuals who had already chosen to respond to the article from a scientific and investigatory angle.

In the future, whenever a writer brings up the issue of Chronic Lyme’s existence (or lack thereof) in an article,  it would be refreshing to see patients, doctors, microbiologists, veterinarians, and others all throw in their two cents by citing the science to begin with - and leave the links to their personal blogs and stories as a sig file, side note, or not mentioned at all. This is a time for educating the masses, the uninformed, and the skeptical - use it wisely, you might not get this level of free publicity again any time soon.

Regarding the Lyme Disease patient community and Ms. Tol’s misquote, it would perhaps be prudent for patients to be more aware of what they write when it can be publicly accessed by reporters and how it might be taken out of context or misquoted by them.

If they misquote you, coming to your own defense is about the only thing you can do at the time - unless you have a clear case of defamation or slander on your hand - then it might be legally actionable. But if you could somehow prevent them from misquoting you or taking you out of context in the first place  - even better.  Because even if there is a correction or you have commented, the original article remains and has been seen many times over.

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It may be beneficial to use filters on your posts if some are inflammatory or ranty in nature, and in cases where you make a clearly informative post that would be of use to all new Lyme patients and medical professionals, leave those openly accessible. Position pieces proving the existence of Chronic Lyme Disease may be one of your best bets for an openly accessible post, and if enough patients post them and their facts can be verified, then right there is a huge concerted effort to unify Chronic Lyme persistence data on the internet by Google ranking.

By the way, this is not to pass judgement on anyone’s content out there. This is a yellow “proceed with caution” sign saying that you can never be too sure who is going to take what you write and run with it in a way you don’t like, and on the internet, a lot of things have happened to people’s content they didn’t like. Be careful.

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