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» LymeNet Flash » Questions and Discussion » Activism » Want treatment and research? Sign petition to force IDSA to redo guidelines

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Author Topic: Want treatment and research? Sign petition to force IDSA to redo guidelines
ellenluba
LymeNet Contributor
Member # 1707

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I think you all know the problems we've faced because of the 2006 IDSA guidelines on Lyme disease that say there's no evidence that chronic Lyme disease exists.

They were required to be reviewed and updated in 2011 in order to continue to be kept on the National Guidelines Clearinghouse website (NGC).

Rather than bother with actually revising and updating them, the IDSA simply falsely stated that they had reviewed them.

The NGC allowed them to do that, until Lorraine Johnson from lymedisease.org caught on to this and began complaining and getting legislators to complain.

Now we have to really do OUR part to let NGC know that we are watching, that the public will hold them responsible for making the IDSA update their guidelines.

We need guidelines that will reflect the recent research supporting the fact that Lyme can be chronic and including changes recommended by the committee that reviewed the guidelines during Attorney General Blumenthal's investigation.

So please sign the petition at www.lymedisease.org (link to petition is on upper right hand side of page) and then write to everyone you know, with and without Lyme disease, and ask them to sign it.
Thanks,
Ellen

[ 03-13-2012, 12:38 AM: Message edited by: ellenluba ]

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Posts: 819 | From New York, NY | Registered: Oct 2001  |  IP: Logged | Report this post to a Moderator
ellenluba
LymeNet Contributor
Member # 1707

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Please sign this petition at www.lymedisease.org
or we will be stuck with the IDSA guidelines for 5 more years.
Ellen

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Posts: 819 | From New York, NY | Registered: Oct 2001  |  IP: Logged | Report this post to a Moderator
ellenluba
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I think most of you are aware that the reason there's no research being done for a Lyme cure and the reason that we can't get enough treatment for chronic Lyme is because of the 2006 IDSA guidelines that say that chronic Lyme doesn't exist.

Those guidelines were supposed to lose their power at the end of last year. The government agency that gives credibility to guidelines by posting them on their website, the National Guidelines Clearinghouse, requires that they be reviewed and updated every 5 years to keep the government backing.

SO knowing the IDSA, whaddya think they did? They claimed (lied) that they had reviewed and updated them. That way they didn't have to worry their pretty little heads about making the 25 changes that had been recommended. They also didn't have to include the two new studies that give evidence of chronic Lyme.

And the National Guidelines Clearinghouse blindly accepted their claim. That is, until Lorraine Johnson of CALDA found out about this and complained, and got legislators to complain.

THe NGC has finally agreed to "look into the matter."

Now we have to really do OUR part to let NGC know that we are watching, that the public will hold them responsible for making the IDSA update their guidelines.

So please sign the petition at www.lymedisease.org and then write to everyone you know, with and without Lyme disease, and ask them to sign it.

We can't go five more years under these dishonest, sickening guidelines.
Thanks,
Ellen

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Abxnomore
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Here is the link that brings you directly to the petition:

http://www.lymedisease.org/petitionscript/index.php

Send it to everyone in your address book and ask them to pass it along.

Posts: 5187 | From Lyme Zone | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
KeyLymePie
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Done - I just signed the petition and forwarded the link to everyone I could think of - even those who will probably curse me for more email petitions [Smile]

Please ppl do the same - it is very very important!

Posts: 47 | From New York, NY | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
BorreliaBrain
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Ok, Ok, I just did it as well - and I forwarded it too - is there any way to get this more noticed on Lymenet????
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ellenluba
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That's a good question. Does anyone know whether there is a better way to get noticed? I've put it up on General and on Medical and it's been taken down. I've been involved in Lyme politics for 12 years and this seems like maybe the biggest issue for the grass roots to handle.
Ellen

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Abxnomore
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Contact all of the moderators in one email and talk to them. It shouldn't be buried where the least amount of people can see it.
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Lymetoo
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I didn't take it down, did I??

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--Lymetutu--
Opinions, not medical advice!

Posts: 95974 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
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I don't think you did TuTu. I think they are still floating around here.

Also note- the original posts for this petition were put up in January, almost two months ago. Most of the folks already signed on and/or shared it in the first two weeks.

Here is one example of an earlier post.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/114399?

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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
ellenluba
LymeNet Contributor
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Hi,
In answer to the last few posts:
I don't know who all the moderators are.

Lymetoo, I see you're a moderator. I did put it up on medical and on general and they disappeared. But if you're a moderator could you please let me know how to get them up permanently there, or even to get it on the front page as well. Thanks in advance.

Tincup, I don't think that everyone has signed. You know I'm a pain in the butt, so I have haunted my poor support group with reminders and their responses are still trickling in everytime I send a new reminder. I think that people often don't think to do it until they've seen it a few times.
Ellen

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ellenluba
LymeNet Contributor
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Whoops. Tincup just wrote me that the posts had just gone to the bottom. They weren't taken off. Lymetoo, thanks for posting to the thread on General Support. I will be sure to keep it up. If some of you did it as well, it would be very helpful.
Thanks so much,
Ellen

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ellenluba
LymeNet Contributor
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UP

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ardalia
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Thanks for all the reminders, Ellen. This is such a critical issue. The need for care for Lyme is growing while the supply of willing and able doctors is shrinking--largely to these restrictive guidelines. The more freedom doctors have in being able to treat, the more doctors will treat us and then, more of us will get better.
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ellenluba
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I completely agree. Even those who are being treated now need to be concerned about this. If the IDSA guidelines remain in place there will be no money given for researching a cure for chronic Lyme. The guidelines say there is no such thing as chronic Lyme.
Ellen

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Abxnomore
Frequent Contributor (5K+ posts)
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I've been posting the link all over Huffington post in response to their article.

Everyone should do the same. It has resulted in a lot more signatures.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/116372


"Here's yet another article about Lyme Disease in the press.

http://www.huffingtonpost.com/2012/04/04/global-warming-lyme-disease-west-nile_n_1400692.html

Here's another chance to make our voices heard and also help educate the public by posting in the comment section.

Let's inundate it with comments and provide the "correct" information.

You have to join the site to post a comment but it will be time well worth it. It takes just a few minutes.

A great place to post the lyme petition, too!

http://www.lymedisease.org/petitionscript/index.php

http://www.huffingtonpost.com/2012/04/04/global-warming-lyme-disease-west-nile_n_1400692.html"

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