IDSA

May 2016 Trip to Capitol Hill, IDSA Headquarters, and Lyme Policy and Science Forum

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Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change.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 […]

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Three minutes, three calls, five people ~ Calling Congress Jan. 26/27

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.

San Diego Photos & Links: ID Week Lyme Disease Rally and Vigil October 2015

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 […]

Mary Beth Pfeiffer Article in Poughkeepsie Journal: Review of Lyme disease treatment leaves out patients

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 […]

PostStar Link ~ Must Read Commentary by Holly Ahern

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 […]

Questions, Logic, Ticks, and Lyme Funding Links from Northern Rockies Lyme Disease Coaltion

Questions, Logic, Ticks, and Lyme Funding Links from Northern Rockies Lyme Disease Coaltion

Following are three of the first articles published on the new Northern Rockies Lyme Disease Coalition website.  We are gearing up to launch May 1. The only anticipated on-line fanfare will be photographic (see requests below the article links) and real-life will include presence at the Mayday Project’s IDSA Rallies in Arlington, VA. A CALL FOR INCREASED […]

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 Guidelines Review Comment Period ~ Thoughts on Where to Start (Updated)

IDSA Guidelines Review Comment Period ~ Thoughts on Where to Start (Updated)

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 […]

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

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

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

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

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 […]

Yolanda Foster Bashing Doctor-Author Forgot To Research Lyme Disease (Part One)

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 […]

Photos and Videos from Philadelphia Lyme Protest

In October, I posted links about the Philadelphia rally (before, during, and after), but I didn’t get around to posting many photos directly to this blog.  I did put links to some of the facebook photo albums (on the Invisibly Lyme Montana facebook page) in past posts, but here they are again, with a link to […]

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 […]

Lyme Disease Articles on Hub Pages ~ First Two

Hub Pages (a writing website) kindly added a Lyme Disease Topic in their Health section.  One of the author’s whose work I’d been reading was in Philadelphia, but hadn’t put it together until after sharing some of her work on Facebook.  I have photos of both of us holding up/carrying the same sign.  We met […]

“Recent” Tick Science From 1909, Revised in 1949 (Then Apparently Forgotten)

Until at least 1949, only soft bodied ticks were considered to carry the spirochetes later learned to be associated with Lyme disease.  Later it was found that hard bodied ticks carried them also, but I’m at a loss as to how it was forgotten that they also were carried by soft bodied ticks. For the […]