Patient Advocacy
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
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Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change.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)
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
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
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.
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)
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
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 […]
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
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
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 […]
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 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 […]
Support French Lyme Patients ~ Send Support For Proposition N° 2291
I’ve posted twice lately about state-specific proposed legislation (Massachusetts and Washington) because even letters from out of state expressing information and support for better care have been catching representatives’ attention and helping the Lyme-patient-residents of those states. There is also, it turns out, a French Proposition (draft included below) that will soon go before the French […]
Yolanda Foster Bashing Doctor-Author Forgot To Research Lyme Disease (Part One)
This is part one (focusing on the science) of a response to a recent article which questioned Real Housewives star Yolanda Foster’s Chronic Lyme Disease diagnosis and claimed that there is “no good evidence” that Chronic Lyme Disease exists. The author’s inflammatory title, “Real Housewife, Fake Disease” is fairly ironic, given that the doctor writes under a fake […]
Washington Proposed S.B. 5448 Would Allow Long Term Antibiotic Treatment For Lyme Disease
Proposed legislation in Washington, S.B. 5448, was read during regular session on January 21, 2015, and referred to the Senate Health Care Committee, scheduled for hearing on February 2. The bill would allow specified practioners to treat patients dianosed with Lyme Disease using long term antibiotics, “for a therapeutic purpose that eliminates infections or controls the […]
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 […]
Reminder & Last Chance: Lymedisease.org FDA Proposed Regulation Survey
Complete the survey immediately to have your answers included in the report, to be compiled this week. From Lymedisease.org’s facebook page: More than 7500 people have taken our survey about Lyme testing. Their opinions will be included in a report to the FDA that we are compiling this week. Still time to make your […]
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 […]
Invisibly Lyme Montana 
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 […]