Awareness and Advocacy
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 […]
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Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change.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 […]
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.
We are spread-out, disenfranchised, devastated moms, dads, students, and children…..former participants in lives we now just watch go by.
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.
Today the organizers of Lyme Ribbons 2015 officially announced Lyme Ribbons 2016. You can read the full announcement The Lyme Wire or by joining the brand new Lyme Ribbons 2016 Facebook group.
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 […]
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 […]
It’s time to ‘stamp out stigma’ placed upon people with mental illnesses…Speak out for those who feel they cannot speak out for themselves. The following article, as with the two guest posts before it, began as a heart-felt facebook post that resonated with friends and patients quickly. As with those previous two, it warranted additional […]
ILADS peer reviewed Lyme Guidelines appropriately added to National Guideline Clearinghouse: preliminary context notes and relevant links
As most Lyme patients are aware, patients, physicians and medical practitioners seeking Lyme disease treatment information will only see one set of Lyme treatment guidelines referred to by the CDC. The problematic guidelines they will find, authored by the Infectious Disease Society of America (IDSA), create obstacles to diagnosis and care that leave thousands of […]
Originally posted on facebook, shared here with the author’s kind permission Some days are so hard. Please continue your prayers for my friend, Bambi, who is fighting ‘like a girl’ to recover from her second Lyme stroke. She’s got a long way to go and more hard battles to fight. Her beautiful face will return […]
#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 […]
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 […]
As you’ll read farther down, this post was written during week four of the Lyme Disease Challenge (which launched March 2015). There was so much more to cover than this that I set it aside until I had “time” to do it justice. Now, at the beginning of June 2015, even in it’s less-than-thorough-enough state, […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]