Lyme Blog Posts
TOUCHED BY LYME: Contentious TBDWG vote delivers a win for patients
The current session of the federal Tick-Borne Disease Working Group is drawing to a close. This panel has been meeting since June 2019 and its…
Public comment: Does that sound like a religious belief, Dr. Walker?
Carl Tuttle gave the following comments via telephone to the Nov. 17 meeting of the federal Tick-Borne Disease Working Group. We have added links for…
Public comment: Genetic variations make Lyme harder to treat
Yan Zelener delivered the following public comments by telephone at the Nov. 17 meeting of the federal Tick-Borne Disease Working Group. My name is Yan…
Phyllis Mervine’s public comment to TBD Working Group
Phyllis Mervine delivered the following remarks by telephone at the November 17 meeting of the Tick-Borne Disease Working Group. Good morning. I am Phyllis Mervine,…
LYMEPOLICYWONK: The pivotal role of patients in Lyme disease research
I gave the following remarks by telephone at the November 17 meeting of the Tick-Borne Disease Working Group. Good morning. I’m Lorraine Johnson, the CEO…
TOUCHED BY LYME: Their message is clear. Patients want to get well.
I made these remarks by telephone to the Nov. 17 meeting of the federal Tick-Borne Disease Working Group. I’m Dorothy Leland, vice-president of LymeDisease.org. We…
“Longest list of Lyme symptoms ever–the prize you never want to win”
Mary Lorusso-DiBara gave the following public comments at the November 17 online meeting of the federal Tick-Borne Disease Working Group. Today I represent our family…
Activist co-authors journal article on Colorado ticks and their diseases
By Monica White Citizen science! I am so grateful to have had the opportunity to co-author a newly published article in the “Journal of Medical…
We Need to Embrace All Forms of Evidence to Accelerate the Pace of Research in Lyme Disease
Research Disadvantaged Diseases Create Research Engines Using Patient Registries Chronic Lyme disease is a research disadvantaged disease. Compared to other diseases very little clinical research…
LYME SCI: Hopeful progress in search of better tests and treatments
In 2020 fashion, the Focus On Lyme Scientific Conference went virtual this year, with featured speakers sharing their latest research in diagnostics and treatment. I…
LYMEPOLICYWONK: MyLymeData, powered by patients, helps drive Lyme research
I want to thank Mimi MacLean for featuring me on Lyme 360’s Heal podcast. Mimi has been battling Lyme disease for four years now, and…
TOUCHED BY LYME: Shapiro and Walker tried having it both ways. It didn’t work.
The Tick-Borne Disease Working Group is supposed to bring together 14 people—scientists, doctors, health officials, patient advocates—with different areas of expertise and divergent views about…