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How much will ever be "good enough"?

10/10/2013

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Hey all!

So this post, as every other post, is free for anyone to read/comment on, etc. however it may not be all that interesting to non-Lymies so beat with me. Lymies, on the other hand, will know exactly what I’m talking about!

So yesterday we had a pretty big milestone in the Lyme awareness field! Katie Couric hosted her talk show at 3pm EST (for most people that was the time) and the first third of the show was dedicated to talking about Lyme Disease.

I first want to back up and mention that at 12pm EST Katie facilitated a twitter chat during which she tweeted from @KatieShow and anyone that wanted to take part simply had to hashtag #LymeBigConvo in their tweet so everyone else who was participating could see it. The chat was a great experience–Katie really has become an advocate for us, or at least has become a public figure who is helping give us a voice. If that doesn’t mean advocate, well, I don’t know what does.

Anyway, on to the show. I’ve been speaking with many Lymies who were very hopeful about the show and who ended up being disappointed/frustrated/angry/mad etc because they still feel the show didn’t do justice for all of us who are suffering. Let me first say if you’re in this group of people. I can definitely see where you’re coming from! There were moments, particularly when Dr. Halperin from the IDSA was speaking, when I wanted to scream at him (okay, maybe I actually did scream at him here from my house….) because he was just on there spreading misinformation galore, just like every other CDC and IDSA based talk show appearance on Lyme.

Among his inaccurate statements were the following:
“Well 95% of Lyme cases are found on the Eastern seaboard” (LIES)
“The tick has to be attached at least 24-48 hours to transmit any bacteria” (LIES)
“The tests are, um, reliable” (BIGGEST LIE YET)

And these are just a few of the ones I remember without rewatching it. So yes, Lymies, we all have a reason to be very angry–HOWEVER we should direct our anger to Halperin and the entities that enable him and his ignorance (the IDSA, CDC, powers that be). Our frustration cannot be taken out on the show as a whole. I know none of us were upset with Katie herself but we must try to resist slamming the show for not doing an adequate job for the cause.

Because then enters Dr. Horowitz, whom I’ve officially deemed “the man!”

Horowitz did an excellent job speaking up for the truth and advocating for us who deal with chronic Lyme in the time he was given. He even got in a few excellent comebacks directly to statements Halperin had made. And there were two chronic Lyme patients who had seen Dr Horowitz and who we’re talking about their success stories! In my mind, we definitely had the upper hand over Halperin et al as far as support and believability. (Not to mention the seating arrangement had one of Horowitz’ success stories s rated directly next to Halperin in the audience! How funny was that?!)

I fully believe Katie would personally preferred to have the entire segment be about chronic Lyme and raising awareness about that. But we have to realize that while changes are being made (slow, slow changes, but changes nonetheless), there are still guidelines in place that, while they’re complete bogus and need to be overhauled a LOT, mandate wonderful people like Katie to include all sides to controversial topics they air on their show.

Overall I was very pleased with the coverage we were given on Katie’s show yesterday. I think that any non-Lymies who were watching it just because they happened to turn it on were probably able to discern which doctor was speaking truth and was truly an advocate for patients (Horowitz, obviously).

And the big thing is that we got the coverage in mainstream media at all! Yes, I wish the segment had been longer, but 24 minutes is no snooze compared to the usual coverage that lasts maybe 5 or 6 minutes, rarely longer, and is often laden with misinformation. So while we didn’t get as much time devoted to the cause as I think we all would have liked, I do think this was an excellent step in the right direction for awareness and hopefully by opening the dialogue in this format the discussions will permeate more and more homes in America….and then continue tor each the higher ups and higher ups until we are all able to get the care, attention, seriousness, and treatment we deserve!

Thanks for reading!

God bless,

Becca
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