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 […]

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Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change.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 […]