Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Wow! You must see the incredible production of the results of the Lymedisease.org survey. I hope you participated - I did. As you were notified, only one person represents patients on that review panel, and she never dealt with Lyme disease in any way. A travesty!
All the people involved with setting up this survey, participating, analyzing it, and publishing this great booklet with the results, deserve medals.
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Wow, thanks for posting Ann!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
It is excellent! Very well done and a LOT of work!!!
Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
up
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I sent the announcement out and got a reply back that the link I sent wasn't working. Just found out the volume of people looking at it crashed the site, but it is back up now and running.
Great to know it is being shared all over the place!!!
posted
Wow - crashed the site - that's good news, I think!
Yeah, 6000+ folks - we're doing good, organizing together like this.
Posts: 13116 | From San Francisco | Registered: May 2006
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I don't know how these things work.... Will this truly make a difference? or is it stil up to someone to accept these results, etc?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
If you go to www.lymedisease.org you can click "View survey results" to see the incredible booklet with color charts and lots of personal stories, too.
Just keep clicking on the right-hand page.
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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posted
Lisa, it's for both advocacy and PR purposes and LymeDisease.org is gonna make hay with it, so to speak...
Posts: 13116 | From San Francisco | Registered: May 2006
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