This post has been tidied a bit (3/12/15) but is still intended to provide just preliminary information regarding the announcement of IDSA’s 30-day public comment period (ending April 9) and the Webinar held March 10th by The Mayday Project.

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)

This was initially posted in a rush to share the basics, as the announcement of the comment period and the webinar came in the midst of a flurry of activity in the Lyme community, largely surrounding the Lyme Disease Challenge, but also calls to action in multiple states regarding legislation and other issues.

Also from March 10, see a post on this blog about the Washington Lyme Bill (needs letters urgently from ANYONE) and posts on that and Oregon’s call to action (Or residents, family, friends, former residents—bill here).

This post will NOT be tidy, just fast, for now.  I am completely physically exhausted and herxing.

Please read the announcement from IDSA and associated information on The MayDay project website and facebook page, and from other reputable sources, as more become available.  The following starter list also includes webinar resources posted the day after it was held.

Links ~ Starter List (overlaps with links in following sections)

• IDSA Announcement: Public Comment Period for IDSA/AAN/ACR Lyme Disease Guideline Project Plan (*look around but don’t investigate the ‘comment form’ as it is a survey style submission form that must be started and completed in one sitting; you will not receive a second chance, so you use the list in the document for reference until you are fully ready to comment)
• Plan/Document: http://goo.gl/D2Zu2E (*includes the list of questions, read them there)
• MDP FB: www.facebook.com/themaydayproject
• MDP Twitter: @maydayproject
• MDP Website: www.themaydayproject.org
• NEW, Post-Webinar:
  • Webinar Recording: http://goo.gl/OdpSLz
  • Webinar Slides: http://goo.gl/OIwHHQ
  • Webinar Event Page: http://goo.gl/KWu9s3

This was too important not to announce immediately, even if hastily posted.  I hope to post on this further, but the the list above includes links people should start with, including sites that will be updated by their respective groups as information is available.

Comment Period

Public Comment Period for IDSA/AAN/ACR Lyme Disease Guideline Project Plan

*Warning (as above), when exploring the site, the comment form is a survey tool and must be completed in one sitting.  I started to open it to see the ‘questions’ (which is a concerning concept to me so far, as there is an enormous difference between ‘asking for public comment’ versus taking an electronic survey) and received the following:

“Please note that you will need to complete your review in one sitting as your work in progress cannot be saved. Once you hit the “Save & Submit” button at the end, your responses will be recorded and saved.”

*Questions are available in the plan*

Mayday Project Webinar

MDP Facebook Post re. Webinar

By now most have seen that the IDSA guidelines are up for review. The timing couldn’t be more critical given the meeting with the IDSA President happening next week.

TMP is going to be hosting a meeting with leaders of the Lyme community tonight where we will be discussing how we are going to proceed. In the mean time we ask that those posting on the IDSA link, please do not share your stories , share science. And wait till tonight before you share them. TMP will be hosting a live webinar that all can tune in sharing the most current and compelling science. And for those who are confused, instructions on how to submit a well worded response including most current science will be given.

Reasons to Participate in Webinar (preliminary)

I may redact the following quickly-pasted-in comments from Facebook discussions.  They were included because it was the quickest way to reflect some of my reasons for urging people to go, based on experiences with receiving and answering comments during government comment periods.  They were typed without much information and in a state of extreme exhaustion, so I will likely remove or replace them soon.  They’re still here for now because it is worth people’s time to look at the notes and listen to the recording (I’m not sure how well the comments illustrate that but won’t have time to do better).

In a nut shell, my opinion is/was that:

• It matters how we comment and how well we understand the process for commenting in order to make the most of the opportunity to comment;
• It is worth our time to do so, regardless in our individual level of faith in the system or the players involved,  in order to at least present the science  on the record while the opportunity is available;
• Our participation is more a sign of confidence in the strength or our evidence and position than a sign of trust in the practices and actions that have brought us to this point;
• Every tool available needs to be employed to gain an understanding of the process and what we can do to avoid having comments disregarded (procedure/submission-wise was my thinking at the time, but good points were made in the webinar about diplomacy that are important, though challenging, to consider as well).

Again, please note that even the sloppiness of this post reflects the urgency of utilizing all tools available.

Please note: Many of the following statements were made with hopeful assumptions about a transparent comment/decision process that may or may not be realistic….but that doesn’t negate the underlying notion that we should do all we can to understand the process (particularly what they are or aren’t bound by).

FB Post:  Part 1/3: Please read my following message (regarding some of my own reasons for absolutely listening in if I can) only if you are interested in a perspective to consider, with a grain of salt or what have you. Skip it if you don’t like long messages! I have a few very preliminary thoughts I’d like to share, and think they are worth sharing, based on some different experiences with ‘public’ processes I’ve had. I have to be very careful of adrenaline right now, to keep up health progress I’m making, but I think it’s worth getting this out there in case anyone is interested or on the fence about prioritizing this. If you aren’t looking for input/perspectives/reasons to consider the webinar, or some thoughts on review periods, please skip my following comment. If you perceive anything in it to imply people don’t have a right to submit their own comments or opinions, or that I think people shouldn’t speak for themselves or include emotion at all in comments, then please read it over again with the knowledge that I’m not implying any of the above. Rather, I am suggesting there are ways to maintain all of the above and make sure it gets heard and used (particularly by knowing the process).

FB Post: Part 2/3: As a government employee for many years, I’ve been through many public comment periods from the other side of things. The process itself, or the better ones, somewhat protects the ability of individuals’ comments to be considered independently (sometimes legally so), and should allow all kinds of comments to have to be considered. So there should be a place for experience/impact to come into play—-but I need to get familiar with their process and what they are required to do with comments as fast as possible. And the emotion vs. science isn’t my point at the moment. At the moment, I see a few enormous reasons to listen in tonight if you can. I’m saying this without knowing what will be covered. I just know from years of reviewing public comments that people who are not familiar with the process (whatever that relevant process is) have a lesser change of having their comments or points meaningfully (and separately, if that is the desire of the commenter) considered and recorded. I need to understand what standards they are held to or holding themselves to in their public comment period, and I would invite people to become familiar with that as well. Because if it deviates too much from what a government agency would be held to or other processes that impact policy (as the guidelines do, indirectly and directly, in my opinion) that even THAT needs to be part of our comments. I may add more about science later, not sure. I don’t know if this particular part of things will be covered or not, just saying it’s one of many reasons to read/listen to any info you can to optimize your comments. This a really good way to hear what other people know and are thinking, where they are headed, and lets you get to whatever parts and pieces you need to focus on next.

FB Post:  Part 3/3 Information/resources/links….find out what other people have gathered already. Save yourself hours, potentially. May hear something you didn’t know to look for (also good reason to skim comment threads to day, and consider taking notes). You don’t know what you don’t know, which also means you don’t know to look it up…..been some good stuff already today. Have a spreadsheet going so far….

~~ Different Page~~

FB Post: A quick thought from earlier comments I’m seeing that they aren’t [IDSA isn’t] going to listen…..not that I disagree with this sentiment at heart, but a comment period is a chance to get it on record, regardless of what they think of it or want to do. Then it is there, and depending on the requirements of their public comment process (one of my most pressing curiosities, but haven’t gotten to look into it yet) they are hopefully bound to acknowledge each comment. If the process is anything like gov. processes, a response to comments requirement would be great. But at the very least, it gets and keeps the comments on the record. Not listening to comments/science may mean a frustrating set back as in the past, but the comments still get on record, so think about what you want seen, and what has the biggest chance of having an impact, rather than what they will or won’t do. Depending on the process, certain comments may require more detailed consideration or at least response. so in my mind, it is worth it and worth knowing as much about the process as possible….

FB Post: That is part of why I’m glad the webinar is happening and by a group that has related resources to share. At the very least, it will save us all time and help us focus our own efforts. Since the MayDAy Project announced they meet with IDSA, I agree with the idea of not sending comments immadiately that may make that meeting less beneficial. Plus, I’d be skeptical that any of us could compile the kind of comments that will most likely matter that fast. I don’t think anybody’s comment (even if ready) would be that critical to send before next week or even next week, given that April 9 is the end of the comment period.

FB Post: *To clarify, I don’t know that anyone is asking people to wait until next week or any certain time. That was just my own train of thought, thinking that if I were sitting down with IDSA next week, I wouldn’t want to do so with anything (more) suddenly stacked against such a monumental opportunity. The post here said until after the webinar tonight, and I’d really be skeptical that anyone would have a true need to submit a comment TODAY, let alone that they would be able to get it done that fast!