Topic: SURVEY- Lyme- IDSA Guidelines-NEED MORE RESPONSES!
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!
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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posted
Thanks. Just took the survey. It's quick and painless, and can do so much good.
Posts: 873 | From WA | Registered: Dec 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
GREAT!
Good to see you all are getting right on it! Since the IDSA guidelines are "expired" now, it could be any time the new ones could appear. Before they seal our fate again for another 5 LONG years, we must respond.
I am SURE you want to be heard and for YOUR vote to be considered....
So, as Larry the Cable Guy says...
Get 'er done!
TuTu... I have no clue what you are talking about? Sorry!
-------------------- "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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"What does a dyslexic, agnostic insomniac do? A: Stay up all night wondering if there is a Dog."
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Took the survey and posted it on facebook!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Sure Tincup, glad to help!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thank you, thank you!
Just finished sending this out. Fun fun!
The prize for the Racing Lyme Disease Awareness Car has arrived!
posted
Just completed it. Thanks for posting!
Posts: 13 | From Charleston, SC | Registered: Jul 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
nh and sc... thanks!!!
Just heard that between 9 PM last night, when this was posted, and today at 3 PM, less than 24 hours later.... and considering this was over night....
There were already 700 plus responses!
Keep up the good work. We all want and need a voice in this IDSA Guideline development process, and we deserve it! In fact, we have a right to be heard.
posted
Well that is weird. The page is different now! It was asking stuff before I could get to the page to do the survey. Just now I was able to do the survey.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Just completed the survey!
Hope many more do also!
-------------------- 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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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
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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posted
Done.....thanks tincup!
Posts: 574 | From New Jersey | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Dekrator,
Thanks for doing the face book explanation. I am NO good at that, so your effort is much appreciated!
JJ,
Thank YOU! Glad you got 'er done!
NOW... I just heard back from the skunk (I'm going to get in BIG trouble for that- don't ya know)- actually missed the communication exact time- but there are now over 1,000 responses!
Yee haw!
You all are burning up the airwaves... or whatever runs the computer survey thingy! HA!
posted
Wow - 1000+ in 24 hours!! And I think everyone passed! My question: usually we say that something's gone viral when it spreads quickly, but in our case, can we say it went bacterial? An inquiring mind wants to know...
Posts: 13171 | From San Francisco | Registered: May 2006
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Scorpio - your daughter totally counts as a lyme patient! Her experiences are just as valuable!
Do it again!! The more input the better.
Not that it is not sad for adults to have lyme, but it really breaks my heart when young children have to suffer too.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
up
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
I just checked out the IDSA's agenda for their Annual Meeting - not much about lyme disease huh? I guess talking about bedbugs is more important. I guess lyme is really not an epidemic after all.... UGH!
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey hey,
Tttttthanks to all who are doing it and sharing it!
Scorpio,
Your daughter certainly does count!
BUT... I think I remember the survey saying it was for people 13 years old or older? I am not at all sure of that, especially the age limit, so do check.
It also is set up for only one response per computer, so please do not try to answer for more than one person per family. We want to keep the data clean and good for the results to be published.
I haven't heard from the skunk how many more have been filled in, but when I do, I will share!
posted
Bumping up, does it say anywhere how long the survey will be open?
-------------------- "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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ruby,
Thanks for bumping it up!
They are trying to get as many responses as possible as soon as possible. No deadline date as of now, but it could end at any time.
The data has to be processed so it can be written up to deal with IDSA who is in the process of writing its new Lyme guidelines, supposedly.
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