Tag Archive | Awareness and 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Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change.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.
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 […]
Lyme Denialism and IDSA/CDC Misinformation Campaign ~ Recent Article Links
I’ve linked to articles in the past that I felt were particularly valuable for understanding or conveying why there is controversy surrounding Lyme disease diagnosis and treatment (not a small or simple topic). I’ll re-link to some of those here as well, but first, here are some very recent must reads to that end. They will […]
#NationalSuicidePreventionDay ~ Guest Post from Jordan Landerman
#NationalSuicidePreventionDay ~ Cross posted from Facebook with the Author’s kind permission, artwork also by the author, Jordan Landerman Yesterday I posted a status, and had some interesting responses. I essentially “came out” as suicidal. This isn’t the first time I’ve made this known to people, but it’s the first time I’ve blatantly posted it on social […]
Thanking Doc Ivan ~ Honorary Lyme Warrior
My kids and I saw the Lyme Disease Challenge video that Doc Ivan did for Sheila Bush (No Relation) when it first came out and got a huge kick out of it. A big tough guy taking time for our cause made us smile. It was one of the first celebrity videos in my album […]
Lyme Links ~ Essential Reading, Late May 2015
There were so many not-to-be-missed articles this month that they ALL became easy to miss and easy to lose track of. Which I have done, prior to finding the time to read or share most of them. This is due in large part to May being Lyme Disease Awareness month, and to the ongoing traction […]
PostStar Link ~ Must Read Commentary by Holly Ahern
Commentary: Diagnosis, treatment of Lyme Disease controversial May 24, 2015 As an advocacy organization, Lyme Action Network (of which I am co-founder) does not “support” medical guidelines. LAN does, however, support the rights of patients to be advised that there is more than one evidence-based, medically recognized standard of care for Lyme disease, and that […]
Styling a Lyme Bill ~ Washington Guest Post by Hannah Elise Miller Kato
What do you wear to witness the signing of a state bill by the Governor? As I picked over my closet I thought about how I arrived at this day. I thought about my long fight over the last ten plus years. I thought about it all; the sleepless nights, the progressive symptoms that waxed […]
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 […]
Northern Rockies Lyme Disease Coalition ~ Requesting Photos and Map Locations
My new site and organization, at NorthernRockiesLyme.org, is up and running, although still in progress. We will continue to be seeking map locations and several types of photos, used initially to celebrate and prepare for our May 1 launch and participation in The Mayday Project’s IDSA Rallies in Arlington April 30 and May 1. Patient voices are […]
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 […]
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
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 […]
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 […]
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 […]
Mary Beth Pfeiffer Article in Poughkeepsie Journal: Review of Lyme disease treatment leaves out patients
If you only share one article this month (or even this year) about Lyme disease, consider this one. I’ve describe multiple articles lately as ‘must read’ and I’ve got a great many more to catch up on. This one, however, is a must, must, must share and a must link-to in addition to being a must […]