Patient Advocacy

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Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change.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

Yolanda Foster Bashing Doctor-Author Forgot To Research Lyme Disease (Part Two)

Yolanda Foster Bashing Doctor-Author Forgot To Research Lyme Disease (Part Two)

Misinformation about Lyme disease dangerously skews public perceptions of patients, in addition to perceptions of the disease, further alienating thousands of patients from families, friends and careers, as well as appropriate healthcare.

Why Montanans are calling Congress Jan. 26/27

Why Montanans are calling Congress Jan. 26/27

We are spread-out, disenfranchised, devastated moms, dads, students, and children…..former participants in lives we now just watch go by.

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.

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 […]