IDSA Protest 2014

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ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

IDSA Protest 2014

Post by ChronicLyme19 » Mon 13 Oct 2014 3:13

If you've been wondering why I haven't been working on the lyme project survey...

Just wanted to share some pics form the IDSA protest yesterday organized by the Mayday project. We were protesting the IDSA to update their lyme treatment guidelines, since they were supposed to back in 2009 and still haven't. http://www.themaydayproject.org/
https://www.facebook.com/TheMaydayProject.org

The security guards were told to come sit in front of our posters as to block them from the doctors. We just held them up higher.https://scontent-a-ord.xx.fbcdn.net/hph ... e=54C0E638

Here's a group shot of everyone:https://fbcdn-sphotos-d-a.akamaihd.net/ ... 075a377189
Half of what you are taught is incorrect, but which half? What if there's another half missing?

duncan
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Joined: Wed 5 Sep 2012 18:48

Re: IDSA Protest 2014

Post by duncan » Mon 13 Oct 2014 14:36

You were there??

That is very cool.

I should have gone. I could have and did not. While I sat on my butt watching re-runs of Rhoda, you were making a difference in person.

Like I said, very cool. :)

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ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

Re: IDSA Protest 2014

Post by ChronicLyme19 » Mon 13 Oct 2014 16:57

Yup, with my mom & bf. It was a low turnout due to the bad weather, only about 100 people. The Mayday protest organizers paid to attend the conference in person and were kicked out Friday night bc they were handing out info, but were eventually let back in on Saturday. Saturday over lunch they got a few docs to sit down and have a detailed convo for 1.5 hrs and went over some of the current research. We gave a bunch of them packets with cited current research, but I'm not sure how many won't just throw it out. A few of my favorite responses were:

"I don't need that I'm an ID"
"Lyme doesn't exist in Australia"
"Sarcasm: Oh, I wouldn't need a thing like that"
One doc flipped through 10 pages quickly and then handed it back.

Only one or two doctors came out to talk to us, and it was because they had family members affected. Many of the docs took pictures of the signs through the window tho. Only two gave us thumbs down and laughed. The rest seemed at least somewhat interested. Even if they took pictures and shared them for the wrong reason, it's still getting the word out. One doc tweeted a pic of me, so I tweeted a key journal article back at him. No response yet. Probably too much avarice to read it.

One mother told us how her son got lyme and was kicked out of the private school he attended for fear of getting the other kids sick. This reminds me so much of the struggle AIDS patients went through between the horror stories and the misinformation.

But seriously, we need more people to show up to help get media coverage. 100 people is a great start, but it doesn't have the impact of 1,000. People will support cancer or ALS projects, but it's still not cool to support lymees.

I hope we placed the seed of doubt in at least one doctor. It's such a depressing fight, the people vs IDSA. I will continue to show up and fight while I'm able and at least I will protect my home community and get them the right into/research.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: IDSA Protest 2014

Post by duncan » Mon 13 Oct 2014 22:35

Everybody who went and put themselves out there, and maybe paid a price, they and you have my admiration. It's HARD to get out there. It's HARD to actually do it!

It is important to be part of the solution; and it is doubly so to have sacrificed, in terms of effort and money and worry.

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ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

Re: IDSA Protest 2014

Post by ChronicLyme19 » Tue 14 Oct 2014 12:58

"MESSAGE FROM JOSH CUTLER: A great video of the protest. We had people fly from as far as California. We had people sick in wheelchairs and on Oxygen, some with Cancer and Lyme. The point is we are ALL sick. One amazing lady stuck with us after having a seizure. Lets make sure we all make it out to the next protest. Don't let being " too sick" stop you. We need to fight as the AIDS patients did. Two weeks out from death they still showed up in force. We need numbers, no more being with us in spirit, please show up we NEED you. Change happened this week, we have been in contact with several Dr's that would like to discuss this more in depth. And even larger news that we can't quite release yet. But this event was a huge success. All those that made it should be proud, In May we need thousands to show up, every eye that sees this should plan to attend. Details soon. United we stand, divided we fall. Watch the video!
http://youtu.be/UTw4SsGaNVE"
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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