TOUCHED BY LYME: Tick-borne illnesses in Finland
Guest blogger C.M. Rubin interviews two European scientists about the prevalence of Lyme disease and other tick-borne infections in Finland.
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LYMEPOLICYWONK: LDo Lyme Impact and Cost Survey
I want to extend my thanks to the nearly 4,000 people who have already responded to the new LDo survey and urge those who have not responded yet to do so. The survey will close May 5th. To take the survey, go to LymeDisease.org and click the “Take Patient Survey” button.
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NEWS: LymeDisease.org's top advocate named to PCORI panel
Lorraine Johnson will represent patient viewpoint to scientific research funders
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NEWS: Yolanda Foster's heart-wrenching speech at Time for Lyme GALA
The “Real Housewife” star said “My brain was no longer able to pull information to form sentences. My memory was blank.”
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TOUCHED BY LYME: Dr. Jones goes to CT Supreme Court on March 14
The court will examine the question of “burden of proof” in actions by the medical board.
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NEWS: Evidence mounts that Morgellons is infectious, not "delusional"
Morgellons, a painful condition which can cause fiber-like growths on the skin, is sometimes associated with Lyme disease.
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LYMEPOLICYWONK: Dr. Fallon’s Suggestions for Future Guidelines.
A recent article by Dr. Fallon and colleagues reviews the findings of the four clinical trials and accurately lays out the state of the science in chronic Lyme research. This is important because future research needs and policy decisions are determined by the state of the science. If there is definitive science that tells us whether treatment for chronic Lyme works, there is no need for additional science and guidelines may justifiably take a hard line on treatment options. Otherwise, we are dealing with science in the making, more studies are needed, and treatment guidelines should be more flexible.
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LYMEPOLICYWONK: New York Times blew this Lyme story big time
The New York Times article “New Infection, Not Relapse, Brings Back Lyme Symptoms, Study Says” published on November 14 sounds like it is about a study about the cause of chronic Lyme disease. But it’s not. None of the patients in this small sample (17) had chronic Lyme disease. Nor was this a study about the persistent cognitive impairment, pain, and fatigue symptoms of chronic Lyme that force 25% of chronic Lyme patients onto disability. The study looked at people diagnosed with an EM rash, promptly treated, and restored to health, who over a 10year period, developed another EM rash and required treatment. Hardly, surprising in an endemic area, like New York and certainly not “big news.” Also not disputed is that most (not all, but most) patients diagnosed on EM can be successfully treated. But a study of patients with EM or recurring EM is not a study of patients with chronic Lyme disease. And you cannot compare apples to oranges in a study like this. Patients were justifiably outraged when the NY Times said the study challenged the notion the Lyme disease can become a chronic illness.
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TOUCHED BY LYME: Another Blow to those with Chronic Fatigue Syndrome
Guest blogger Toni Bernhard takes issue with how doctors officially describe Chronic Fatigue Syndrome.
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Thanksgiving in the Lyme world, 2012
Along with new and continuing challenges for the Lyme community, there is also much to be grateful for. Here’s our Thanksgiving gratitude list.
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