CDC

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Headquarters in Arlington, VA, to raise public awareness for Lyme Disease and for the damage being done by the outdated and dangerously flawed IDSA Lyme Disease Treatment Guidelines, and to fight for change.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

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.

ILADS peer reviewed Lyme Guidelines appropriately added to National Guideline Clearinghouse: preliminary context notes and relevant links

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 […]

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 […]

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 […]