Tag Archive | IDSA
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Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change.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 […]
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.
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 […]
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 […]
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 […]
Recap and NEW TOOLS for IDSA Comment Period ~ Still not too late (EXTENDED THROUGH APRIL 24)
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 […]
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 […]
Link and Notes ~ Lymedisease.org/LYMEPOLICYWONK IDSA Guideline Comment Survey
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 […]
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
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 […]
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 […]
Invisibly Lyme Montana 
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 […]