The process of getting started feels a bit overwhelming. In theory, we do need to include hard science, as well-organized as possible. In reality, we are sick, tired, and behind compared to what we thought we’d have time to get together so far.
*UPDATE* Lymedisease.org released a survey (3/27) yesterday that allows patients to be heard as a community. Scroll down for more on that opportunity (also now incorporated into instructions, see additional update below). You can take that survey (to be compiled and presented to IDSA and others) in addition to submitting your own comment by April 9 via IDSA’s public comment process.
This post is an attempt to map out the beginning steps, or at least give a simple list of where to go first (based on what I know so far). You may not even have time to go to all of these links, but at least it will give you an idea of what is where so far. Some of the information within these sources might be nice to have compiled somewhere, and if I find that they are, I’ll definitely add a link (SEE UPDATE BELOW). But until then, these are my thoughts on how and where to start (with hopefully more clarity in future posts, as I get farther into my process or as knowledgeable groups post even more resources, as I am sure they will).
*ANOTHER UPDATE* I’ve noted here and elsewhere that I’d be watching for key groups to post instructions, examples, guidance, and here is the sort of thing I’ve been hoping for. Sighing a breath of relief.
Feel free to read my steps below if it may help you. But the following multi-part blog article from Lymedisease.org was released last night and I am guessing will be more clear, or could be better for your own way of approaching this. Or perhaps both with help. (The example of how to format comments is fairly similar to what I’ve started in my notes so far).
New Guidance from Lymedisease.org (still peruse the other links in other posts here, as many are valuable, and the press release from MayDay Project is an example of something you shouldn’t miss).
My Thoughts/Steps -Updated with New Links
1. Read the Announcement, Download or print the Document, *do not go to the comment form (see below)
Start Here: Public Comment Period for IDSA/AAN/ACR Lyme Disease Guideline Project Plan
As described elsewhere (often), the comment form linked to in the announcement is where you will submit your comments (later). It is a survey style submission form and you have to start and finish it one sitting (so have your comments ready to paste in later). The form includes a list of questions which are provided in the plan document (which you are downloading or printing). You will need the plan to read and reference, but you will also need the line numbers, if you are able to comment using the recommended format (which you’ll see a bit later in resources below).
KEY POINTS: Comment period is open through April 9, prepare your comments in advance (using the list of questions in the plan document, in addition to other resources and advice provided below), enter them into the survey-style submission form only when you are completely ready.
2. Listen to the Webinar, Look through the slides, and get a basic feel for what kind of comments will have the biggest impact
There may be other links listed later on the MayDay Project website or the webinar’s event page (where the links below are also posted). These are also the same links in my preliminary notes post, so if you’ve already saved, listened, looked, you can skip this step. I would strongly recommend the webinar, to get some perspectives on effective comments and recommended comment format, but also for a general grounding on the issues and the process. It just helps to get yourself ready, if nothing else, and into the right mindset. But additionally, there’s valuable information. The recording and slides links are those noted in the webinar and were provided the following day.
There were a few other resources mentioned that may be still to come (or that I may not have found yet). But at the time, the meeting with IDSA’s president was a week away, so that was quite pressing (and the outcome was quite important).
WEBINAR RECORDING: http://goo.gl/OdpSLz
WEBINAR SLIDES: http://goo.gl/OIwHHQ
3. Read the press release regarding the MayDay Project’s meeting with IDSA President Calderwood for some key points to know for your comments
Dr. Calderwood agreed to consider a Lyme patient on the panel and said he would consider suggestions for questions for the panel to ask. These could both be huge.
How they change your comments: Add questions you think should be asked by the panel (ones that better reflect patient concerns compared to the ones in the document/comment form). Still ask for a patient on the panel, to ensure it happens, and also include other parties you think should be represented, ESPECIALLY doctors that treat Chronic Lyme patients, as well as psychiatrists (good thoughts and statements on this in recent Lymedisease.org articles on the comment period).
I think it is useful to also read the MayDay Project facebook posts that came before the press release. It’s not critical, but it’s nice to see the evolution and there is more to the statements that is worth reading.
PRESS RELEASE: http://www.webwire.com/ViewPressRel.asp?aId=196644
4. Decide What level of detail you can provide
A. Strongly consider Lymedisease.org’s survey to contribute to a community-voiced comment
Update: They promptly answered the question you may have seen here yesterday and in the post about their survey. People are encouraged to fulfill the survey (asap) and also submit their own comment, as ‘both are important’. http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-idsa-guidelines-survey.html (Opportunity to answer lymedisease.org survey to comment as a community….the opportunity to suggest additional questions is important, too, so I am eager to see if that is reflected in the survey, though I know this and other authors there will have excellent suggestions they will present).
B. Take another look at examples and guidance as they become available (webinar slides linked above, new Lymedisease.org links) for the comment format and decide what level of detail you can provide
Consider the optimal format and level of detail in the slides, or other examples as they become available, and set reasonable goals so you can either provide very detailed comments with citations on certain topics, or adjust accordingly in order to cover the items you want to make sure you cover. Recommended is to include the line/page numbers from the plan, the comment, and citations.
5. Decide which topics are most important to you and whether they are most important as questions, comments or both
Use whatever method works best for you, if prioritizing in advance works for you (or if you know your time or energy is limited). For some, it’s better to just jump in. I’m doing all of the above at varying intervals. I’m mostly alternating A and B and will use C for citations.
A. Guidelines & Process Background
I found a good way to get my mind going in the right directions is digging through documents, articles, and past review panel reports. I’m seeing recommendations from past panels, statistical issues with research used, and just generally having my memory jogged. I put together a recent ‘rough’ background post that includes some of those resources so far, not yet sorted or described, but just to make them available.
Similar background can be found in documents on the MayDay Project page and Lymedisease.org articles, also included and or to be included in the post linked to above. There are links to guideline review process standards in various locations in the resources linked to above. There is a link in the anouncement and/or document, and in recent Lymedisease.org articles, and I believe also in the webinar slides. There is also a video outlining the steps of a review process in relation to the Lyme guidelines in a video linked to int he post noted earlier. I found it useful, though it may not be up to date. It was still good background.
B. Start pulling out lines and sections form the plan
As I go through the document, I note the line numbers I have comments for. Some of these are based on things I’ve read in the background documents above. Which is why my approach is still a little bit back and forth.
C. Science and Literature
That, for me, would be a dangerous place to start. Even with questions in mind I tend to end up creating breadth and a longer list of sources instead of the details I’m looking for. But you can certainly start there if that’s how you think, or if you already know your direction. Persistent Lyme: MayDay Project website has a list, and there is a list of 293 citations here More: I’ll link to lists or examples if I find them. But this is as far as I’ve gotten so far, other than brainstorming questions and issues and watching for further examples as I’ve had time.
6. Watch for more information, examples, templates and citations (and updates to this post, potentially)
Not necessarily here. In fact, if you see it here and I created it, I’m not sure how I’d be expecting to also have comments to submit. I hope to travel with my husband and kids if I can next week.
***See Updates above with new Lymedisease.org links, instructions for commenting. I do plan to share citations, comments, ideas, or potential questions as they evolve, if I have time. But I’m not sure how far I’ll get fast enough. And on that note, please share with me in comments if more becomes available somewhere, as I may be travelling and in need of more info!
Use this link to see my posts on the comment period.