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Recap and NEW TOOLS for IDSA Comment Period ~ Still not too late (EXTENDED THROUGH APRIL 24)

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):

  1. Survey from Lymedisease.org (fastest option, allows you to contribute via their comment)
  2. New comment examples from Mayday Project (to save time and allow you to still comment individually, and/or to use in your individual comment)
  3. Existing comment examples from Lymedisease.org (to save time and allow you to still comment individually)
  4. Mayday Press Release (additional items to consider when commenting from meeting w/ IDSA President)
  5. IDSA’s announcement/comment form (to use when fully ready to submit comments)

New Tools

The MayDay Project

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)


Recap Lists

IDSA (Comment Period)

My Posts

MayDay Project



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….


One comment on “Recap and NEW TOOLS for IDSA Comment Period ~ Still not too late (EXTENDED THROUGH APRIL 24)

  1. […] The most recent tools I was using by the end of the initial comment period are included in a Recap post here. […]


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