UPDATE: The comment period has reportedly been extended through April 24.
As a very general recap, you can respond to a Lymedisease.org survey RIGHT NOW (though April 9) to contribute to their comment, and you can still (through tomorrow, April 9) submit your own comment. I’ll list all the resources I’m aware of below. They are all listed in previous posts, other than the new resources, listed first, that might make it still possible to submit your own comments, even if you thought you were out of time.
These new tools (or a new look at existing tools) from Lymedisease.org and The Mayday Project are enough to get you over the hump if (like me) you are still hoping to or working on your individual comments. Technically, at the moment, I’m posting this instead, but these are going to make the difference in getting me there, so this is a worthy distraction if even one person sees it that didn’t know these were out (I missed some of them initially) or has lost track of what is available where.
As of today, in order to comment efficiently and quickly, or at least respond to the survey, I would consider these the top five links/steps (all identified/denoted (with a note in red) in their respective lists):
- Survey from Lymedisease.org (fastest option, allows you to contribute via their comment)
- New comment examples from Mayday Project (to save time and allow you to still comment individually, and/or to use in your individual comment)
- Existing comment examples from Lymedisease.org (to save time and allow you to still comment individually)
- Mayday Press Release (additional items to consider when commenting from meeting w/ IDSA President)
- IDSA’s announcement/comment form (to use when fully ready to submit comments)
- Mayday Project’s Response (to use in Comments or as example) *A “top five” link
The Mayday Project encourages everyone to fill out the IDSA patient response form. We’ve complied a document, filled with scientific evidence of persistent infection, to help those who may be struggling with the form. Feel free to use any/all information provided! Let your voice be heard! (per their related fb post)
- Part 2 of their Comment instructions post included examples as well (big time saver)
IDSA (Comment Period)
- Public Comment Period for IDSA/AAN/ACR Lyme Disease Guideline Project Plan *A “top five” link *to use when you are fully ready to submit your comments (must be started finished in one sitting, more info in posts below)
- Preliminary Notes ~ IDSA Comment Period and Mayday Project Webinar (March 10)
- Link to Press Release ~ Outcome of The Mayday Project and IDSA President Calderwood’s Meeting (March 24)
- IDSA Lyme Guidelines ~ Background Resources (with Notes for Comment Period) (March 26)
- IDSA Guidelines Review Comment Period ~ Thoughts on Where to Start (Updated) (March 26)
- Link and Notes ~ Lymedisease.org/LYMEPOLICYWONK IDSA Guideline Comment Survey (March 27)
- Personal Overview of the IDSA ‘Public Comment’ Period ~ Part 1 (April 6)
- WEBINAR RECORDING
- WEBINAR SLIDES
- PRESS RELEASE *A “top five” link
- COMMENT FORM (as above)
- Visit their Facebook Page for useful posts
- Commenting on IDSA Lyme guidelines, part 1
- Commenting on IDSA Lyme guidelines, part 2 *A “top five” link
- Commenting on IDSA Lyme guidelines, part 3. Take our survey
- Take our guidelines survey & give comments to IDSA *A “top five” link
- Chronic Lyme Page here: Persistence: Adapted List of 293 Peer Reviewed Articles/Studies
- Mayday Project Document List
- Basic Background (on Problems, Conflicts, History Surrounding Guidelines)
- Under Our Skin Excerpts
- Arguing Chronic Lyme ~ A (Very) Basic Overview & A Few Good Links
- Hub Pages Articles (for now, see Arguing Lyme post, linked above)
- Lymedisease.org Articles (for now, see Arguing Lyme post, linked above)
- IDSA Lyme Guidelines ~ Background Resources (with Notes for Comment Period)
Reminders and Quick Thoughts: Additional Questions and Review Process
*Don’t forget, no matter what tools you use or don’t use: Based on IDSA President Calderwood’s statement after his meeting with The Mayday Project last month, they will consider suggestions for addition (better) questions for the review panel to ask. ADD THOSE, TOO. AND remind them to add at least one Lyme patient to the panel, as well as physicians that treat Lyme and Chronic Lyme patients. (Their is little value to any review without at least that degree of objectivity, in my opinion, but of course you can voice that if or how you wish).
*I also find the lack of accessibility of this process inhibiting to patients and problematic in terms of transparency and collaboration, but that is likely beyond the scope of most people’s comments. I’ll be writing my representatives on at least this aspect of the process (yesterday’s post speaks more to this, as will part 2 of that post, most likely).
DON’T FORGET TO: Comment, eat, and rest today….