LymeDisease.org videos can help you learn more about Lyme disease research, education, diagnosis, testing, treatment, and more.
Most of us know that Lyme disease is commonly misdiagnosed as chronic fatigue, fibromyalgia, or depression. But did you know that 20% are misdiagnosed with uncurable progressive neurologic diseases?
Presentation on Patient Powered Research at the AAAS Conference by Lorraine Johnson, JD, MBA, CEO LymeDisease.org
This patient-powered research project lets people with Lyme disease learn from each other and provides data that can help drive research to improve their lives. For more information: www.lymedisease.org/mylymedata/.
MyLymeData is a patient-powered research project. It was conceived by patients, is run by patients, and addresses the issues that patients care about. It lets Lyme disease patients learn from each other and provides data that can help drive research to improve their lives. For more information about MyLymeData and to join the project visit www.lymedisease.org/mylymedata/
“What’s striking is how sick these patients are and how neglected they have been by the medical community. Big Data is a big deal. More data can change the status quo.”
“People are still suffering unnecessarily, given the tools and research possible today. When I was at my sickest, I couldn’t do much to help. But I could have done this.” – Silver Feldman, Diagnosed with Lyme disease at age 13
Raphael Stricker, M.D. speaking before the IDSA Review panel on July 30, 2009. The one day hearing in Washington, D.C. was part of the antitrust settlement that Connecticut Attorney General Blumenthal negotiated to address “serious flaws” in the IDSA guidelines process. Eighteen speakers representing patients, physicians, and research scientists testified.
Lorraine Johnson, CEO of Lymedisease.org, speaking before the IDSA Review panel on July 30, 2009. The one day hearing in Washington, D.C. was part of the antitrust settlement that Connecticut Attorney General Blumenthal negotiated to address “serious flaws” in the IDSA guidelines process. Eighteen speakers representing patients, physicians, and research scientists testified.
Moscone Convention Center, San Francisco, October 2013. Lyme advocates rally outside the annual conference of the Infectious Disease Society of America. The IDSA’s Lyme guidelines deny the existence of chronic Lyme disease, and make it difficult for patients to get the medical treatment they need.
This video shows Congressman Chris Smith, of New Jersey, strongly endorsing HR 4701, the Vector-Borne Disease Research Accountability and Transparency Act of 2014. (September 9, 2014.) The legislation prioritizes federal research on Lyme disease and forms a working group of government agencies and partners, including physicians and Lyme patient advocates. LymeDisease.org applauds Congressman Smith for his many years of working to help people with Lyme disease.
Dr. Richard Horowitz addressing the crowd at the San Diego Lymewalk & Rally, Oct. 19, 2013. He discusses his new book, “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease.”
LymeDisease.org raised $150,000 in support of the Lyme research of Dr. Eva Sapi. The money will purchase a highly sophisticated microscope and otherwise advance her research into borrelia biofilms. This video was taken at the 2013 San Diego Lymewalk.
