Awareness and Advocacy

Questions, Logic, Ticks, and Lyme Funding Links from Northern Rockies Lyme Disease Coaltion

Questions, Logic, Ticks, and Lyme Funding Links from Northern Rockies Lyme Disease Coaltion

Following are three of the first articles published on the new Northern Rockies Lyme Disease Coalition website.  We are gearing up to launch May 1. The only anticipated on-line fanfare will be photographic (see requests below the article links) and real-life will include presence at the Mayday Project’s IDSA Rallies in Arlington, VA. A CALL FOR INCREASED […]

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Lyme Disease Challenge Updates ~ My Kids’ On-going Challenges

Lyme Disease Challenge Updates ~ My Kids’ On-going Challenges

We challenged all of our families and friends and then some in smaller groups.  For all of the fun and surprising responses we’ve gotten in the celebrity world (which was not a part of all this we were expecting) the friends and family side has been a bit slow.  Very sweet responses, but only a […]

Emails Requested ~ WA Lyme Bill Goes to Gov. Inslee For Signature (SB 5448)

Emails Requested ~ WA Lyme Bill Goes to Gov. Inslee For Signature (SB 5448)

Washington organizers, including Co-sponsor Dan Boeholt, have requested assistance in the form of gentle emails of support to Governor Inslee requesting that SB 5448 be singed into law.  Below are two requests that say it well, followed by a brief update and links for further background on the Bill, including follow up on last week’s exciting margin […]

Letters To Strangers for Arlington MayDay Rally ~ Request Via Sheila Bush Can Also Benefit NorthernRockiesLyme.org

Letters To Strangers for Arlington MayDay Rally ~ Request Via Sheila Bush Can Also Benefit NorthernRockiesLyme.org

Sheila’s request is posted below and was also shared with The 1,000 Letters Lyme Campaign and in additional Facebook groups in recent days.  So take note that if you remember seeing something like this already, it was most likely this request. The intent is for the letters to be handed out at The MayDay Project’s […]

Tweeting the Surgeon General for #NPHW ~ Kudos to Patients for Great Questions

It took more energy than I had to submit what I could for IDSA’s comment period on it’s final day.  It was not an easy process, and I am still exhausted and recovering. So many things happened yesterday that the events will likely spill into multiple posts and will be things we remember for a […]

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 […]

Personal Overview of the IDSA ‘Public Comment’ Period ~ Part 1

We all know how important this is.  Not all patients know all the pieces or felt ready or physically or mentally able to respond directly.  I’ve had firm plans to submit my own comments, as well as question suggestions (based on IDSA President Calderwood’s statements following his meeting with The MayDay Project), and to respond […]

#ChrisBitesLyme ~ Enderswordman ~ Christopher #LymeDiseaseChallenge’d Tobuscus, Kid President, and EvanTube

#ChrisBitesLyme ~ Enderswordman ~ Christopher #LymeDiseaseChallenge’d Tobuscus, Kid President, and EvanTube

Christopher was almost ready for the Lyme Disease Challenge to start March 1 (www.lymediseasechallenge.org).  He made two videos in advance to give instructions, but then got sick.  Then I got sick.   His sister got her video done, so she could challenge some friends early on. Then the challenge started and a number of Lyme […]

Link and Notes ~ Lymedisease.org/LYMEPOLICYWONK IDSA Guideline Comment Survey

The Comment Period ends April 9.  Just published ~ a survey opportunity via Lymedisease.org in order to submit comments to IDSA’s Lyme Guideline Review Project Plan Public Comment Period (ending April 9).  You can see my other posts and links on this topic listed here.  MayDay Project press release here (regarding comment period and meeting with IDSA […]

IDSA Guidelines Review Comment Period ~ Thoughts on Where to Start (Updated)

IDSA Guidelines Review Comment Period ~ Thoughts on Where to Start (Updated)

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 […]

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 […]

Link to Press Release ~ Outcome of The Mayday Project and IDSA President Calderwood’s Meeting

Link to Press Release ~ Outcome of The Mayday Project and IDSA President Calderwood’s Meeting

Just Released Lyme Patient Advocates Meet with IDSA President, Discuss Concerns About Guidelines Review Process ARLINGTON, VA, Tuesday, March 24—Representatives from The Mayday Project Lyme patient advocacy group met with Infectious Diseases Society of America (IDSA) President, Dr. Stephen Calderwood, on Friday, March 20, to discuss concerns about the IDSA’s guidelines for diagnosis and treatment […]

Reminder/Request ~ Email WA Health Care Committee (Supporting Chronic Lyme Bill SB 5448)

Reminder/Request ~ Email WA Health Care Committee (Supporting Chronic Lyme Bill SB 5448)

If you have not already done so please take a few minutes to write the Health Care Committee asking for their support on this very important Bill (Recognizing Chronic Lyme Disease).  I was raised in Washington, have a large number of friends and family in Washington, and travel to Washington for treatment of Chronic Lyme […]

Arguing Chronic Lyme ~ A (Very) Basic Overview & A Few Good Links

Arguing Chronic Lyme ~ A (Very) Basic Overview & A Few Good Links

This overview was initially part of another post from September (with patient accounts of long-term Lyme), but there were just too many ideas there to be valuable.  However, referencing that post is extremely valuable in digesting this overview, and in understanding why you should take the time to do so.  Dozens of patients were willing […]

WA Lyme Bill 5448 Unanimously Passes Senate Floor, Moves to House Hearing ~ Please Email Committee

WA Lyme Bill 5448 Unanimously Passes Senate Floor, Moves to House Hearing ~ Please Email Committee

Bill supporters in Washington and beyond have been ecstatic all week, since Washington Lyme Disease Advocate and Bill co-auther Dan Boeholt’s announcement that WA Bill 5448 (a Bill to Recognize Chronic Lyme Disease) has passed unanimously on the Senate floor and moves to House Hearing!  I had high hopes for this Bill being supported, but unanimous […]

Preliminary Notes ~ IDSA Comment Period and Mayday Project Webinar

Preliminary Notes ~ IDSA Comment Period and Mayday Project Webinar

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 […]

Lyme in Oregon ~ Task Force Announces Draft Proposed Lyme Bill

Lyme in Oregon ~ Task Force Announces Draft Proposed Lyme Bill

A subcommittee of the Oregon Lyme Leaders (the Oregon Lyme Leaders Task Force) has been working toward draft legislation, drawing on months of collaboration and, for some or all members, years of preparation. The task force has used data from studies and surveys which were spearheaded by Oregon Lyme Disease Network over the last ten […]

It’s Not Too Late: Contact 49 Senators NOW to Pass Chronic Lyme Bill SB 5448 in WA

It’s Not Too Late: Contact 49 Senators NOW to Pass Chronic Lyme Bill SB 5448 in WA

If you are active on Facebook in Lyme Disease patient groups, you may have seen (or may have missed) the following post from Dan Boeholt, co-author of Washington state’s proposed Chronic Lyme Bill, and founder of the related Facebook page, Ticked Off On Lyme WA: ~ Contact 49 Senators NOW to Pass our Chronic Lyme […]

Christopher’s Videos About the Lyme Disease Challenge (ChrisBitesLyme)

Christopher’s Videos About the Lyme Disease Challenge (ChrisBitesLyme)

I posted in early 2015 about about Christopher’s New Year’s Resolution, as emailed to me by his third grade teacher, to raise awareness for Lyme Disease through a gaming channel he plans to start on YouTube.  He also, very sweetly, planned to donate 99% of his profits to Lyme Disease awareness, using the other 1% […]

Lyme Disease Challenge Starts March 1 ~ How to Get Ready

Lyme Disease Challenge Starts March 1 ~ How to Get Ready

You can help “Take a Bite Out of Lyme” starting March 1, 2015, but you can do any or all of the following starting right now: