Lyme Activism

Letters To Strangers 2016 ~ Montana Letter

Letters To Strangers 2016 ~ Montana Letter

This effort was discussed in my recent post about my trip to DC last week, and is described in further detail in a post from May of last year.  My letter was updated this year and some of the Montana patients active with Northern Rockies Lyme Disease Coalition efforts shared their photos to help further […]

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May 2016 Trip to Capitol Hill, IDSA Headquarters, and Lyme Policy and Science Forum

May 2016 Trip to Capitol Hill, IDSA Headquarters, and Lyme Policy and Science Forum

Each May, The Mayday Project hosts a rally outside of the Infectious Disease Society of America’s Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change.  Patients travel from around the region […]

Three minutes, three calls, five people ~ Calling Congress Jan. 26/27

Three minutes, three calls, five people ~ Calling Congress Jan. 26/27

This call for action is based upon the failures of CDC in the handling of public policy on Lyme disease, including preferential treatment of the Infectious Diseases Society of America (IDSA), a private organization; failure to provide medical providers and patients with ALL the available information on diagnosis and treatment; extensive under-reporting of the disease; and conflicts of interest and violations of ethics rules.

San Diego Photos & Links: ID Week Lyme Disease Rally and Vigil October 2015

San Diego Photos & Links: ID Week Lyme Disease Rally and Vigil October 2015

Last month, Lyme disease patients and patient supporters gathered outside the annual ID Week conference sponsored by the Infectious Disease Society of America (IDSA) to protest the IDSA’s Lyme disease treatment guidelines and their role in obstructing patient access to proper testing, treatment, and insurance coverage. The conference is attended annually by physicians, researchers, and […]

Prologue ~ Guest Series from Washington’s Recognizing Chronic Lyme Bill Supporters

Prologue ~ Guest Series from Washington’s Recognizing Chronic Lyme Bill Supporters

Washington’s SB 5448, Recognizing Chronic Lyme was signed Friday, April 24, by Governer Inslee.  There will be more steps in the future, but the signing makes way for some of the stories from the inspiring patients that supported this bill. I love to share other people’s stories and other people’s work, and the patients advocating […]

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 […]

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 […]

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 […]

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:

Please Email Senators by Feb 20 ~  WA Proposed Lyme Bill S.B. 5448 Updates ~ Action Needed!

Please Email Senators by Feb 20 ~ WA Proposed Lyme Bill S.B. 5448 Updates ~ Action Needed!

Please write Washington state Senators immediately to show your support! This post forwards the requests of Washington Lyme activists and organizers (with clear and specific steps to take), including the Lyme Disease Seattle WA Support Group, Ticked Off On Lyme WA, and Dan Boeholt (Bill coauthor). Pre-Notes For Residents/Non-Residents: Residents: The links below make it […]

Email Massachusetts Senators (How and Why) Re H.D. 469 ~ Insurance Coverage for Lyme

Email Massachusetts Senators (How and Why) Re H.D. 469 ~ Insurance Coverage for Lyme

“There is currently a two-week window during which representatives can decide if they want to support the proposed bill known as: H.D. 469 An Act Relative to Lyme Disease Treatment Coverage, so we need to act quickly.”   The who, what and how of this issue was very well said and accounted for in a […]

Photos and Videos from Philadelphia Lyme Protest

In October, I posted links about the Philadelphia rally (before, during, and after), but I didn’t get around to posting many photos directly to this blog.  I did put links to some of the facebook photo albums (on the Invisibly Lyme Montana facebook page) in past posts, but here they are again, with a link to […]

2015 IDSA Headquarters MayDay Protest: Reasons 1-5 to Read and SHARE

Visit the Event Page on Facebook, linked below, for event details, and read and share reasons 1-4 to participate in and promote this event. “We need to let the IDSA know WE WILL NOT STOP UNTIL THEY TAKE ACTION! THE IDSA NEEDS TO REVISE THE LYME GUIDELINES AND STOP REJECTING THE SCIENCE THAT PROVES WE […]

Lyme Disease U.S. Postage Stamp Could Become Reality ~ Letters Needed

Lyme Disease U.S. Postage Stamp Could Become Reality ~ Letters Needed

The National Stamp Advisory Committee is willing to consider a Lyme Awareness Stamp if enough national interest is received.  You can help with the (updated) letter templates and options provided here, or via groups noted in this post. In November 2014, the leader of a support group called Lyme Disease Eugene Oregon, Deb (‘Dive GirlDeb’ on […]

Asking IDSA for Change ~ Video is Up: Lyme Disease IDWeek Protest Philadelphia 2014

Saturday’s protest included Lyme patients and loved ones from across the country, together to ask IDSA to revise guidelines for Lyme disease diagnosis, treatment, and care. Too many patients are misdiagnosed, their care delayed and lives destroyed. IDSA needs to incorporate current available science…