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

This is topic Not happy with IDSA panel? Here is what YOU can do! in forum Activism at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/8/1547

Posted by Tincup (Member # 5829) on :

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!

Posted by minoucat (Member # 5175) on :

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. "

Posted by bettyg (Member # 6147) on :

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

Posted by scared08 (Member # 14695) on :

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!!!

Posted by FancyRatFan (Member # 3088) on :

up