London Lyme Disease Protest at Department of Health Tomorrow 13 May, 2015
Lymeblog News May 12. 2015 Lexington, KY USA By Mac McDonald, MA, CCE Editor Lymeblog News
LONDON – On May 13th 2015 Lyme disease
patients will rally outside the Department of Health, Richmond House
in Whitehall, London, to coincide with similar protests taking place
around the world.
UK demonstrators claim that the Department of Health are neglecting
patients because they ignore the science of Lyme borreliosis.
They claim that the infection, which can be caught from the bite of a tick can cause serious, chronic disease and that the tests relied upon by the NHS miss many cases. As a result, patients are forced to pay for private tests and treatment or risk developing severe and chronic illness.
Imagine if going walking, camping or fishing carried the risk of ‘catching’ Multiple Sclerosis, M.E., Parkinson’s, Arthritis, Syphilis, Alzheimer’s, Heart Failure.
Lyme disease, caused by the bite of a tiny tick, can have symptoms similar to any of those conditions.
The protesters claim that the infection, which can be caught from the bite of a
tick can cause serious, chronic disease and that the tests relied
upon by the NHS miss many cases. As a result, patients are forced to
pay for private tests and treatment or risk developing severe and
Protesters say that many thousands of cases have already been missed
by the NHS. This is due to widespread ...
"Get Better" A handmade movie about living with Lyme disease
Lymeblog News May 2, 2015 Lexington, KY USA By Mac McDonald, BA, MA, CCE Editor Lymeblog News
This full length, handmade, movie "Get Better" (2012, 101 minutes), is loosely based on the life experience of Emily Reach White and her father's fight with late-stage Lyme disease. The movie was the winner of the "People's Grit" Audience Favorite Indie Grits Festival 2013.
Half of the writing/directing team is Emily Reach White who watched in silence and shame as her dad struggled with Chronic Lyme Disease for over ten years. After his death in 2007, when his heart just stopped while on a trip to Disney World ("sometime between the Light Parade but before eating Mickey Mouse Pancakes), she began to question: What makes some diseases more culturally visible, and more culturally acceptable, than others? In this TEDx talk, she explains that not all diseases are created equal.
Watch her 17 minute TEDx Talk about why she made the movie and why people stigmatize diseases they fear and don't understand.
Invisible Illness and Incommunicable Diseases: Emily Reach White at TEDxGreenville
Lymeblog Movie Review of GET BETTER
"Get Better" is the story of a young teacher name Ellie Alexander (Marisa Viola) who struggles with work, relationships and caring for her father who has a disease that is stigmatized because most people don't understand it.
The movie has some excellent portrayals of people in the life of a person with late stage, neurological, Lyme disease.
The star performance is by Robert Linder as Roy Alexander, Ellie's father. Linder brings a realism and truth the part that I hope helps others see what life is like inside the mind of a person with tertiary (third and final stage) Lyme disease.
Mayday 2015 Lyme Advocates to IDSA: Focus on Care Instead of Attacks
Lymeblog News My 1. 2015 Lexington, KY USA By Mac McDonald, BA, MA, CCE Editor Lymeblog News
WASHINGTON, DC Friday, May 01, 2015 –For the second day, Lyme patients and supporters from around the U.S. gathered in Arlington, VA, at the Infectious Diseases Society of America (IDSA) headquarters, to call attention to the epidemic of chronic Lyme disease and to ask the question: Why does IDSA continue to fight with and vilify patients instead of producing guidelines that would enable those who are chronically ill to receive medically necessary treatment.
The most recent incident came from IDSA spokesman and Johns Hopkins physician Paul G. Auwaerter, MD, who says patients with chronic Lyme symptoms dabble in conspiracy theories.
"Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease.
The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease."
Kenneth Liegner, MD
“When you don’t understand something,” Dr. Auwaerter said in an interview with the Allentown Morning Call, “you try to insert a framework that makes sense to you.”
Auwaerter and other IDSA researchers claim that there is no evidence for the existence of chronic Lyme.
Kenneth Liegner, MD, who specializes in internal medicine, critical care, Lyme disease and related illnesses, suggests that IDSA has neglected to consider a large body of peer-reviewed evidence that chronic Lyme exists. Liegner practices in Pawling, NY, near the epicenter of the Lyme epidemic. In a September 2010 letter to the Institute of Medicine, Liegner said:
“Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease…The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease.”
In 2006, Connecticut Attorney General Richard Blumenthal, now a U.S. Senator (D-CT), launched an investigation of IDSA, based on allegations of abuses of ...
"Act Up for M.E." Demonstration In Washington, DC April 28, 2015
Lymeblog News April 27. 2015 Lexington, KY USA By Mac McDonald, BA, MA, CCE Editor Lymeblog News
"HHS has neglected these patients for the past three decades by withholding proper funding and excluding education about the disease in the curriculum of U.S."
WASHINGTON, DC – Myalgic encephalomyelitis (ME) is a debilitating, neuroimmune disease affecting an estimated one million men, women and children in the U.S. It has been described as the “Hidden Plague,” “Polio-like” and a “non HIV/AIDS” disease. Most Americans have never heard of it. Why? ME lacks prominence because the government hasn't taken this disease seriously. In the 1980s, the government renamed the disease the trivializing and belittling name "chronic fatigue syndrome." Federal research funding has been at the bottom of the barrel for decades.
Tuesday, April 28, 2015
10:00 am to 11:00 am
Washington, DC in front of the Capitol
A march will take place with students filling in for some of these very ill patients who cannot attend themselves. Wearing photos of real patients and carrying their biographies, students will represent patients too ill to come to DC to march on the Mall. We refuse to let them be invisible any longer. The “voice of the patient” will be heard through the students.
The marchers will circle the Capitol grounds on the pedestrian walkway route starting at ...
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