It is time for YOU to have a voice in YOUR diagnosis and treatment of Lyme and tick borne diseases.
Please complete this short survey from CALDA (the ones who have done an excellent job in the past with conducting and reporting on surveys, with your help of course), and share it with others so they have a chance to make their wishes known.
NOW is the time to speak up!
CALDA News, Events & Blogs
LYMEPOLICYWONK: Speak Up Now! The IDSA Is Revising Its Lyme Guidelines And Patient Viewpoints Matter
04 Oct
The treatment guidelines of Infectious Diseases Society of America (IDSA) are more than 5 years old. That means they will be taken off the National Guidelines Clearinghouse in January.
It also means that the IDSA is now revising those guidelines. According to the Institute of Medicine, guideline developers must consider patient values and preferences to be considered trustworthy.
Our last survey found that 80% of patients would not choose to be treated under the IDSA guidelines. So patient trust in IDSA Lyme treatment guidelines a big issue.
But when was the last time the IDSA asked you what you valued or what you preferred in the treatment of Lyme disease?
The answer is: NEVER. It's time we do something about that. We are conducting a survey to find out what you think is important about treatment options, choices, risks and benefits.
Our last survey drew over 4,000 responses. Let's do it again and remind the IDSA that patient values are central to treatment guidelines!
Please help keep this survey thread near the top! I am stretched to the max right now and would sure appreciate you spreading the word.
Thank you!!!
Posted by Robin123 (Member # 9197) on :
Please help T---------I---------N---------C---------U---------P and do this survey - it's easy to do - and comment that you've done it - she is stretched to the max...
One little comment - CALDA has gone the way of history and it is now called LymeDisease.org - talk about going generic - just because it was already happening, so they acknowledged it and went general!
Now everyone can be a Californian!!!
Ok, I'm kidding! It really is general now.
Posted by Tincup (Member # 5829) on :
Great Still! Thanks!
Just heard over night (from 9 PM to 3 PM today) we got over 700 responses so far!
Keep up the good work. YOU deserve a voice in this process. Make your voice heard.
or if you have "Liked" the "California Lyme Disease Association" (CALDA) on facebook and you get their info, you can share it from your fb page.
CALDA has changed it's name to Lymedisease.org , which has been it's URL all along.
This is what I wrote when I shared the survey link on my facebook page...feel free to copy and paste this to your fb page if you want:
It's time to speak up! If you ever had Lyme disease, have chronic Lyme disease or are at risk for getting Lyme disease in the future (that's everyone!!), please take this short survey (takes 5-8 min) and let the IDSA know that you want the choice to have long term treatment according to the ILADS guidelines and that it should be up to the patient to decide!! The IDSA does not even think chronic lyme exists (that's a travesty!!) and they think lyme is hard to get and easy to treat...wrong! Support the ILADS guidelines and the right for Dr's to use their judgement, make a clinical diagnosis, give the patient choices, and treat long-term when needed!!
Posted by RubyJ (Member # 28711) on :
Bumping up
Posted by momintexas (Member # 23391) on :
Did it and am passing on.....
Posted by jblral (Member # 8836) on :
AS of Oct. 7, the survey had more than 2000 responses. How about you?
and click on the red box.
Posted by Tincup (Member # 5829) on :
Great to see you all are helping gwet the data needed! Keep it up!
And Robin359845.. you are just too darn funny!
Posted by Robin123 (Member # 9197) on :
Thx!! Couldn't resist - are you still s----------t-----r-----e---------------t-----c-----h-----e-----d-----------? It's good for circulation... Anywho, am helping with out>>>>>>>>>>>>>>>>>>reach!
Hey, I just learned a fascinating new public outreach tactic this week - at Occupy SF - no mikes allowed, so they do "people's mic" -
The current speaker says a few words, then the whole crowd, maybe a couple 100, repeats them back so that everyone can hear!
Very exciting to hear your own words coming back to you a couple 100-fold! Kinda like a crowd Twitter experience.
So I say: SO I SAY:
fill out the survey - FILL OUT THE SURVEY -
at LymeDisease.org - AT LYMEDISEASE.ORG -
by clicking on the red box - BY CLICKING ON THE RED BOX -
if you haven't already done so!!! IF YOU HAVEN'T ALREADY DONE SO!!!
[ 10-14-2011, 08:16 PM: Message edited by: Robin123 ]
Posted by climber (Member # 26330) on :
Did it and thank you! climber
Posted by Tincup (Member # 5829) on :
Thanks Climber! Much appreciated!
And Robin, Robin, Robinnnnnnnn....
You are GOOFY, girl!
Posted by fflutterby (Member # 28081) on :
Done !!!!
Posted by Suzy50 (Member # 30466) on :
SURVEY COMPLETEd!!!
Posted by Robin123 (Member # 9197) on :
Mic check!! MIC CHECK!!
Mic check!! MIC CHECK!!
Everyone doing well so far!! EVERYONE DOING WELL SO FAR!!
And for those of you who haven't yet, AND FOR THOSE OF YOU WHO HAVEN'T YET,
filling out the survey will only "occupy" FILLING OUT THE SURVEY WILL ONLY "OCCUPY"
a few minutes of your time!!! A FEW MINUTES OF YOUR TIME!!!
[ 10-14-2011, 08:17 PM: Message edited by: Robin123 ]
Posted by James1979 (Member # 31926) on :
All day, all week! ALL DAY, ALL WEEK!
Occupy LymeNet! OCCUPY LY...
Shoot. It doesn't rhyme.
Posted by TxCoord (Member # 9204) on :
The one thing I didn't like about the survey is only one person per computer is allowed to be surveyed!
What do you do if there are multiple people in the household that want to do the survey? If you recommend computers at a library you may not be able to complete if someone else has been on it.
Posted by Robin123 (Member # 9197) on :
Tx - sounds like people will need to use a different computer - you should ask jblral, just to make sure -
James, we ALREADY occupy Lymenet!
Nope, we need to occupy the IDSA next week -
Lyme patients, we all say - Occupy the IDSA!
Posted by Tincup (Member # 5829) on :
Thanks to all who are doing it! Love it!
BTW- You make a me laugh!
Oh and did I mention, the last I heard there were over 2,800 people participating!
![[Big Grin]](biggrin.gif)
![[lol]](graemlins/lol.gif)