LymeNet Flash: Not happy with IDSA panel? Here is what YOU can do!

LymeNet on Facebook

LymeNet on Twitter

Follow @LymeDiseaseNet

The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive

The Lyme Disease Network is a non-profit organization funded by individual donations.

»	LymeNet Flash » Questions and Discussion » Activism » Not happy with IDSA panel? Here is what YOU can do!

UBBFriend: Email this page to someone!

Author

Topic: Not happy with IDSA panel? Here is what YOU can do!

Tincup
Honored Contributor (10K+ posts)
Member # 5829

posted

Thank you for your patience while the options were being reviewed and worked out.

Here are some tips and suggestions for addressing the recently created IDSA panel that will be reviewing the guidelines.

Lyme panel: Selection and exclusion bias

http://www.lymedisease.org/news/lymepolicywonk/46.html

Protesting the panel: Putting pen to paper

http://www.lymedisease.org/news/lymepolicywonk/47.html

More news will be forthcoming about additional actions that can be taken from what I understand.

But for now this is, in my opinion, a good way to proceed.

[Big Grin]

Let's GO, GO, GO!!!

And remember to be NICE, NICE, NICE!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004 | IP: Logged |

minoucat
Frequent Contributor (1K+ posts)
Member # 5175

posted

Good stuff, useful info to include, clear guidelines, says exactly who to contact and what points to make. Thanks to CALDA and all those who put this together.

And YES, as I thought, the Lyme panel as it stands is not SOP. This from the Selection and Inclusion Bias page:

"By comparison, the HIV guidelines of the Department of Health and Human Services were reviewed by clinicians in the field, who evaluated the guidelines for validity, credibility, and usefulness in their own practice settings.

So, the issue here isn't that there are fewer cases of Lyme--there aren't. The number of annual cases of Lyme disease far outstrips the annual incidence of HIV. The issue is accountability. This type of treatment would not be tolerated in AIDS and should not be tolerated for Lyme. "

--------------------
*********************

RECIDITE, PLEBES! Gero rem imperialem!
(Stand aside plebians! I am on imperial business.)

Posts: 2331 | From WA | Registered: Jan 2004 | IP: Logged |

bettyg
Unregistered

posted

please send this to all your lyme friends, list groups, and post on OTHER LYME BOARDS; i just did!!

IP: Logged |

scared08
LymeNet Contributor
Member # 14695

posted

Tincup,

Thank you for posting this; for doing the 'foot-work' for those like me who just don't know where to start when you're too sick to think!

Which is my question actaully. I want to contant them and write a letter, but I am son such an intence treatment and herxingk, very symtomatic. I keep waiting for a 'better day', but it doesn't look like that will be comeing any toine soon.

Question---should I go ahead and try to write a letter know that no matter how hard i try, there will be errors. By doing this, they would certainlly know what nerolyume does in late stage due to late dx and incorrect treatemnt.

Or should I wait for a better day when I maybe able to focus and write better????? Knowing that his may be a while???

Please let me know what yout htink??

Miniocat-----Funny you mentiond HIV giudelines, this has always been may arggument and exmaple too! I thing its a perfect one!!!

Posts: 351 | From Georgia | Registered: Feb 2008 | IP: Logged |

FancyRatFan
LymeNet Contributor
Member # 3088

posted

Posts: 258 | From San Diego, CA USA | Registered: Sep 2002 | IP: Logged |

Printer-friendly view of this topic

The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA
http://www.lymenet.org/