3 Comments

IDSA Lyme Guidelines ~ Background Resources (with Notes for Comment Period)

Foreward ~ I’m so behind on my own comments, and the deadline for the IDSA Public Comment period is so fast approaching, that multiple posts with relevant or even related content or links are going to published in a rough state, including things like un-formatted and un-annotated lists of links, just to get the information out to those that may be looking.  I’ll be cleaning them up, adding to them, and adding relevant Mayday or lymedisease.org links to them as time permits and as applicable.

Understanding (enough of)  the History of the Guidelines and Related Background

Deciding where to start in understanding guidelines is a bit daunting.  I got my start before my diagnosis after wathcing Under Our Skin for the first time.  I’d asked about Lyme a few times during and after Bell’s palsy, since I’d been bit by a tick.  But was adamantly told it was not a possibility.  I remember watching the film, during a then-ongoing Equal Employment Opportunity (EEO) federal discrimination case (to prove I was able to work), and thinking “Thank God that’s not what I have.”  Thinking I was already going through as much as any sick person could take.

It all sounded a bit conspiratorial back then.  Credible, but hard to get my head around.  I looked up Montana’s guidelines for the treatment of Lyme, curious to see if the logic could really be so poor.  And there it all was.  I can say now, there were the words that kept me misdiagnosed for over three years, and that have kept me sick for almost five years so far.

The headings for these resources and sections may seem conspiratorial or accusatory to someone not yet familiar with the background, the parties involved, and the issues at play.  Which leads to the first few over-view type links.

As more information on the links is added, I may include Comment Period Notes (CP Notes) where applicable.  These are as much reminders for me as anything, and doesn’t indicate that the resource is necessary for comments.  There are resources to help dig further in specific directions or to find background enough to answer or formulate questions.

If you are looking for resources to support your comments to IDSA’s March 2015 comment period, or seeking specific types of resources, these links in the first list will probably not provide you with new information, (other than the ‘Arguing Chronic Lyme’ post this blog (listed) which includes links t may be of use).

Basic Background (on Problems, Conflicts, History Surrounding Guidelines)

Background on the Comment Period

*Again, I’d much rather have these organized with more info, but 1) I’m posting in case these links are of use to anyone in the short term (and they fit with specific current questions and discussions), and 2) EVERYONE in the Lyme community needs to pace themselves right now.  We’ve got legislative processes rolling in multiple states, planning happening for multiple events and campaigns in May, and the rapidly moving and extremely evolving Lyme Disease Challenge.

Greater Depth ~ To be sorted soon

Video: Background on reviewing guidelines (not specific to this round, but good background) *interesting, states guidelines not meant to “have teeth” but have been used to revoke physician licenses….where did the teeth come from?  (branches into a primary question of mine, which is where or whether there are teeth to the comment process or review process)

Panel report from 2006 review  http://www.idsociety.org/uploadedFiles/IDSA/Topics_of_Interest/Lyme_Disease/IDSALymeDiseaseFinalReport.pdf  *The bar is pretty low….based on what was required under settlement….

Prospective, controlled clinical trials have demonstrated little benefit from prolonged antibiotic therapy. Nearly all primary outcome measures have failed to demonstrate a benefit to prolonged antibiotic therapy. Statistically significant improvements in treatment groups were not demonstrated across studies, were nonspecific, were of unclear clinical importance, and in one case, not sustained at the end of the trial [286, 438, 459, 493, 666].

*MayDay project doc–recommendations pulled from 2006 panel report, added contradictory italicized statements pulled from studies…..

Advertisements

3 comments on “IDSA Lyme Guidelines ~ Background Resources (with Notes for Comment Period)

  1. […] Links to the primary documents plus webinar resources are listed below, and background info regarding past reviews, the guidelines, past recommendations, and the anti-trust investigation are in another ‘rough’ post (including some resources people have recently had questions about): IDSA Lyme Guidelines ~ Background Resources (Public Comment Period Ends April 9) […]

    Like

  2. […] statistical issues with research used, and just generally having my memory jogged.  I put together in a recent ‘rough’ background post that includes some of those resources so far, not yet sorted or described, but just to make them […]

    Like

  3. […] IDSA Lyme Guidelines ~ Background Resources (with Notes for Comment Period) (March 26) […]

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: