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» LymeNet Flash » Questions and Discussion » Medical Questions » GOOD so far- but need 300 more Lyme patients to do survey!

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Author Topic: GOOD so far- but need 300 more Lyme patients to do survey!
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Many have taken this survey already...

But, I just learned they still need 300 more patients so the data can be presented in its full glory at the upcoming IDSA Lyme Guideline Review Panel Hearing.

Please take a few minutes to complete this survey...

And then send this message to those you know who have Lyme disease and encourage them to complete it too.

If you've sent it out already, maybe you could send it out again as a reminder. Time is running out!

Thank you!

http://www.lymedisease.org/news/lymepolicywonk/134.html

More information below.

[Big Grin]


California Lyme Disease Association (CALDA) sponsored

Survey will send message from patients to IDSA* Lyme panel

Have you taken CALDA's new Lyme survey? If not, click here to participate. CALDA CEO Lorraine Johnson will present the results at the IDSA's Lyme guidelines hearing in Washington DC on July 30. (The hearing will be streamed live over the internet. Stay tuned to the CALDA web site for details.)

http://www.lymedisease.org/news/lymepolicywonk/134.html

is the CALDA web site link.

The Infectious Diseases Society of America's (IDSA) new Lyme disease guidelines review panel will hold a one day hearing on July 30.

This hearing is part of the antitrust settlement that the Connecticut Attorney General negotiated.

Of the 18 speakers selected to testify, two are patient advocates, including me, Lorraine Johnson.

The testimony will be aired live on the internet on July 30 so stay tuned. STAND UP AND BE COUNTED CALDA is conducting a survey of individual Lyme experiences to give you a chance to have input.

Results of the survey will be included in my testimony to the IDSA panel.

Speak out and be heard. Help CALDA represent your views to the IDSA at the July 30 hearing.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Nicole_Denise
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Oh good- you don't need an American postal code now. The first time I tried (a long time ago), it wouldn't accept my Canadian postal code.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
Melanie Reber
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Just posted this at LymeLand. Thanks for making it so easy for us who tend to procrastinate just a tad.
Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
bettyg
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i posted it on mdjunction lyme board; they have over 1000 members; most very ACTIVE !!
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keltyl
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Done!
Posts: 847 | From upstateNY | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
mtree
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done [Big Grin]

--------------------
worrying about tomorrow takes its strength away from today

Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
venus
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done

--------------------
Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly.

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tickssuck
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done!
Posts: 566 | From West Coast | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
lymeinhell
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Done. Up to the top for others!

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

Posts: 2257 | From a better place than I was 11 yrs ago | Registered: Sep 2003  |  IP: Logged | Report this post to a Moderator
kam
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Any updates on how it is going??
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
mtree
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Hi Tincup... [hi]

maybe this should also be posted in general...??? [confused]

I myself find that I often just go to General Support...not so much Activism or Medical...

just a thought... [bonk]
I do have them once in awhile... [Big Grin]

[Smile] mtree

--------------------
worrying about tomorrow takes its strength away from today

Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
randibear
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my done!!

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
mtree
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I also did my daughters.... [Big Grin]

--------------------
worrying about tomorrow takes its strength away from today

Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
viva
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Forwarding the link to my husband; he has promised to send it in.

Up!!

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bettyg
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heard back from 1 mdj lyme patient who is a moderator there; done; now that she did it; others will follow ...
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gemofnj
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done. glad to have the opportunity to do it!
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Zebco 33
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Done...It's a wrap..Thanks Tincup for the reminder. [hi]
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feelfit
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just finished.
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bettyg
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lou b posted this in activism too
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pepperspeck
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done!

--------------------
I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!

Member red (Member # 1886)
Registered: 26 November, 2001
70 posts

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linky123
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done
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mushroomman06
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Did mine when first posted. Is there any way one can see if it posted?
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Nancy2
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Done!
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groovy2
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Hi All

where is the survey--
I click on the link and it takes me to a page
that says Click Here to take survey-

A new page opens up with a bunch of articals
on lyme but No survey that I can find --jay-

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mtree
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groovy...

click on to the link above again...
then ...click on to survey...

then go to......

June16th Listen Up!
click on to full story....

then click survey again....
[dizzy]

I hope that works..... [Big Grin]

[spinning smile] mtree

--------------------
worrying about tomorrow takes its strength away from today

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Jane2904
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Done!
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fighter
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did my part [Smile]

thanks for the reminder

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jlc
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Just did mine.
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Healing in Santa Cruz
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Done
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Tincup
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GOOD NEWS!!!

But we STILL need 300 more! See the link below!

HA!

And just when you thought we could rest.

[lol]

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/83683?

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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And thank YOU!!!

Keep spreading the word!!!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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SoSublyme
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Happy to oblige. [Cool]
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Tincup
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Thanks and up for the Monday Club...

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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bettyg
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here's for mon. evening club ...
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disturbedme
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I just filled it out. [Smile] Nice to see this survey.

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
Tincup
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Thanks Disturbed!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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mtree
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just a bump....

[hi] mtree

--------------------
worrying about tomorrow takes its strength away from today

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