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.
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.
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 […]
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 […]
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 […]
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 […]
Proposed legislation in Washington, S.B. 5448, was read during regular session on January 21, 2015, and referred to the Senate Health Care Committee, scheduled for hearing on February 2. The bill would allow specified practioners to treat patients dianosed with Lyme Disease using long term antibiotics, “for a therapeutic purpose that eliminates infections or controls the […]
“There is currently a two-week window during which representatives can decide if they want to support the proposed bill known as: H.D. 469 An Act Relative to Lyme Disease Treatment Coverage, so we need to act quickly.” The who, what and how of this issue was very well said and accounted for in a […]
Deer Ticks Confirmed in North Dakota Carry Lyme Disease and Important Implications for ‘Non-Lyme’ States
Recent findings published in the Journal of Medical Entomology carry critically important implications for Lyme Disease detection in Montana and other states currently not considered Lyme endemic. Although North Dakota was considered to be outside the range of deer ticks (Ixodes scapularis), researchers sampled nine locations in North Dakota and found deer ticks present at six of them, including […]
Complete the survey immediately to have your answers included in the report, to be compiled this week. From Lymedisease.org’s facebook page: More than 7500 people have taken our survey about Lyme testing. Their opinions will be included in a report to the FDA that we are compiling this week. Still time to make your […]
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 […]
This did not take long to complete and is an opportunity to have your information, concerns, and situation represented. The more people that answer, the larger the sample size and the more meaningful and representative this information will be. As an example, their past survey regarding Lyme patient quality of life had over 5,000 respondents, […]
Post-protest link lists SO FAR for the Oct. 10 & 11, 2014, IDSA IDWeek Lyme Candlelight Vigil and Protest organized by The Mayday Project . Links for photos, albums, videos, news articles and coverage found so far, groups and pages present/involved, contact lists to save, and follow up links (who to thank, tweet, etc.). This […]
How to Help From Home ~ Philadelphia Candlelight Vigil and IDSA Protest *****October 11 post-event update—call fox and ABC—-see more at bottom of post****** Also see following blog post with Post-Protest links I’ll be adding links to this if I can from the train, otherwise google the references to find the lists!!!
I will be joining Lyme disease patients from around the country tomorrow (Friday, Oct. 10) in Philadelphia for a candle light vigil outside the IDWeek Medical Conference and a peaceful protest outside the conference the following day (Saturday, Oct. 11, my husband’s 40th birthday). Per the MayDay Project’s event Facebook page: We are calling on […]
Just two years ago, Nathan DeJong was confined to his house by Lyme disease. He’s since gone through three pairs of shoes in one year and completed an obstacle race, inspiring hundreds of patients. I am re-posting the contents a Facebook group post here, with permission, because even within the first hour or two posted […]
Last week H.R. 4701 (The Tick-borne Disease Research Transparency and Accountability Act of 2014) passed the house. The bill is also known as the Gibson Bill, after the bill’s author, New York Senator Chris Gibson. Per Lyme disease.org: H.R. 4701 forms an interagency working group consisting of federal agencies and non-federal partners, including experienced Lyme physicians […]
Pending a reasonably priced hotel and reasonably energy levels this week, I may be headed to participate in my second Lyme disease Awareness/Activism/Advocacy event later this month.
Lymdisease.org diagram, full size below Please take a moment to read the article I’m leading into here, and if your time is perhaps too short to read until we get there, please scroll directly down to the article link. At the very least, you need to save this one for later. (And/or share it with […]