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Please sign this Lyme and coinfection petition!

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Posted 9/4/2014 5:23 AM (GMT 0)
@DebbieGibson plz sign & retweet thx Appoint panel to find effective help for those w/ Lyme Disease & Associated TBIs http://wh.gov/lSBKw

Sent tweet to amy tan and debbiegibson, I think.
Posted 9/4/2014 5:30 AM (GMT 0)
Burrascano no twitter
Posted 9/5/2014 2:44 AM (GMT 0)
Guess I dont get it. LadyofLyme will retweet about a tshirt to raise awareness for lyme but not a petition?
Posted 9/5/2014 2:48 AM (GMT 0)
I tweeted Debbie Gibson too. Also Amy Tan and Jordan Fisher Smith. I hope I did it right!
Posted 9/5/2014 3:06 AM (GMT 0)
I am disheartened. My Mom and I have worked hard last 48 hrs to let people know about this petition and many of the 80 that have signed are friends and family and they dont even have lyme but were willing to try and raise awareness.

Apparently raising awareness for lyme is not worth 3 minutes of time to sign a petition.I have spent hours trying to garner support. The one place I expected a big response was here with my fellow lymies. For those few that did sign be proud you took small step to try and effect change for your benefit and others who remain silent.

when you finally get to see Under Our Skin 2 Emmergence you will see Jordan say to fellow lymies that we have to stand up for ourselves even when we feel sick.

I have been blessed by my Mom and her effort to get people to sign on my behalf. This gives friends and family a concrete way to show us they care by giving them an opportunity to support this cause. She really surprised me, I expected she might sign but she exceeded my expectations in writing a wonderful heartfelt email to her friends snd asked them to sign, that was such a blessing anf encouragement to me.

You might be surprised, you might not but that is probably what we expect but what a blessing when we ask for supoort and we get more than we expected.
Posted 9/5/2014 4:10 AM (GMT 0)
Yes, I agree. I've worked hard on this too. If everybody would share this on Facebook and ask friends to share, we could make progress. I've posted it on two other forums too. No responses. Not sure if anybody signed, but maybe they did.

I've had better luck with friends and family who are worried about me than other Lyme patients. It doesn't make sense.

This panel might not even accomplish anything, but EXPOSURE matters! And the panel is supposed to include famous LLMDs like Dr. H, and lyme patients. Not just IDSA members.
Posted 9/5/2014 4:31 AM (GMT 0)
I tweeted everybody on my list that I could find on twitter.
Posted 9/5/2014 6:03 AM (GMT 0)
I'm going to sign it now, but may I make a suggestion? Maybe someone could come up with a catchy topic title. I almost didn't read this post because I didn't realize the importance of this.
Posted 9/5/2014 8:55 AM (GMT 0)
Aml I know you have been trying snd I agree wtih yiur comment on exposure.

Post Edited (Roxie60) : 9/5/2014 2:59:28 AM (GMT-6)

Posted 9/5/2014 8:58 AM (GMT 0)
Poh...did mot dawn on the me that maybe members have not been reading this post. It has had over 200hits so I presumed members were reading it.

im sure aml would be open to title suggestion, what do you think would get more members to look at this yhreaf

thanks gor signing!
Posted 9/6/2014 12:21 AM (GMT 0)
AML would you be willing to chane the title of this thread, maybe 'please sign this lyme & coinfections petition', just a suggestion.
Posted 9/6/2014 5:04 AM (GMT 0)
I changed it. Thanks for the suggestion!
Posted 9/6/2014 12:58 PM (GMT 0)
bump
Posted 9/7/2014 7:09 AM (GMT 0)
Only five people signed yesterday, and three of them were my family and friends. I really don't understand why people won't do something so quick and easy!
Posted 3/5/2015 2:40 AM (GMT 0)
Hi everyone! I started a new petition to the White House - please sign and share! We'll just keep posting and signing until they can't ignore us any longer. In a few days we are already at over 800 sigs. The more the merrier.

Repost on FB, twitter, snapchat, email, text, instagram, everywhere!! XOXO
VIEW IMAGE

Sign and share:
/petitions.whitehouse.gov/petition/acknowledge-existence-chronic-lyme-disease-co-infections-and-develop-legislation-funding-treatment/PlClF4hT

turn
Posted 3/5/2015 2:42 AM (GMT 0)
Signed
Posted 3/5/2015 2:43 AM (GMT 0)
Awesome !!
Posted 3/5/2015 2:53 AM (GMT 0)
I signed
Posted 3/5/2015 3:07 AM (GMT 0)
Sweet !!
Posted 3/5/2015 3:55 AM (GMT 0)
Signed & shared :)
Posted 3/5/2015 3:59 AM (GMT 0)
Radical everyone !! :)
Posted 3/5/2015 4:08 AM (GMT 0)
*Signed*
Posted 3/6/2015 10:08 PM (GMT 0)
I signed, too, but I am disappointing so few people signed. I think before someone starts a petition, they should reach to as many lyme forums as possible to spread the word AHEAD of time. Not everyone logs in all the time here, to find a petition that has to be signed within this time frame.

Maybe I am wrong, but I think there should be at least 10,000 signatures in order to get some attention. I think we really need to overwhelm them with a high number of signatures or we risk to be ignored.
Posted 3/7/2015 6:37 AM (GMT 0)
Don't be too dismayed! We're just shy of one week in and have 1200 signatures so far... we have about three weeks left. Really important to share on all social channels! FB, twitter, instagram (take a screenshot), in email, text, or by corded telephone! :)

I also started something called Lyme Stats which is helping to promote the petition. A site is in the works.

instagram.com/lymestats
twitter.com/lymestats
facebook.com/lymestats

Follow and share my images to help promote the petition!

xoxo
Posted 3/7/2015 10:39 AM (GMT 0)
Signed
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