Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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!
posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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-------------------- "To eat is a necessity, but to eat intelligently is an art" - LaRochefoucauld
Lyme neuro symptoms for 20+ years. Infected in Maryland. Diagnosed with Lyme Jan 2011. (previously diagnosed with CFS, Fibro, peripheral neuropathy) Posts: 261 | From Colorado | Registered: Oct 2010
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
Did it and am passing on.....
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
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 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
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.
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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