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 […]
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 […]
Washington organizers, including Co-sponsor Dan Boeholt, have requested assistance in the form of gentle emails of support to Governor Inslee requesting that SB 5448 be singed into law. Below are two requests that say it well, followed by a brief update and links for further background on the Bill, including follow up on last week’s exciting margin […]
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 […]
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 […]
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 […]
The Comment Period ends April 9. Just published ~ a survey opportunity via Lymedisease.org in order to submit comments to IDSA’s Lyme Guideline Review Project Plan Public Comment Period (ending April 9). You can see my other posts and links on this topic listed here. MayDay Project press release here (regarding comment period and meeting with IDSA […]
The process of getting started feels a bit overwhelming. In theory, we do need to include hard science, as well-organized as possible. In reality, we are sick, tired, and behind compared to what we thought we’d have time to get together so far. *UPDATE* Lymedisease.org released a survey (3/27) yesterday that allows patients to be […]
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 […]
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 […]
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 […]
Bill supporters in Washington and beyond have been ecstatic all week, since Washington Lyme Disease Advocate and Bill co-auther Dan Boeholt’s announcement that WA Bill 5448 (a Bill to Recognize Chronic Lyme Disease) has passed unanimously on the Senate floor and moves to House Hearing! I had high hopes for this Bill being supported, but unanimous […]
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 […]
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 […]
I posted in early 2015 about about Christopher’s New Year’s Resolution, as emailed to me by his third grade teacher, to raise awareness for Lyme Disease through a gaming channel he plans to start on YouTube. He also, very sweetly, planned to donate 99% of his profits to Lyme Disease awareness, using the other 1% […]
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 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 […]