LYMEPOLICYWONK: Don’t waste public money on research that doesn’t help patients
For the past 10 years, Lyme patients have watched research funding be squandered on projects that have not improved their quality of life. I thought I would share with you my responses to these...
View ArticleLYMEPOLICYWONK: The bogus grassroots of the American Lyme Disease Foundation
Welcome to the world of astroturf organizations-false grass roots organizations where names are intended to sound alike and offer no hint of special interests behind them. Until its recent demise, the...
View ArticleLYMEPOLICYWONK: Patient-Powered Research and Lyme Disease
Traditionally, research has been researcher centered rather than patient centered. Researcher-centered research pursues questions and curiosities of researchers that may have little or no relevance to...
View ArticleLYMEPOLICYWONK: LymeDisease.org Endorses New ILADS Lyme Disease Guidelines
The Centers for Diseases Control estimates that more than 300,000 people contract Lyme disease each year. People with Lyme frequently experience long delays in obtaining an initial diagnosis, have poor...
View ArticleLYMEPOLICYWONK: Whose interests is the FDA protecting? Not Lyme patients,...
Because LDTs include the Lyme tests manufactured by IGeneX and Advanced Laboratory Services that many patients rely on for accurate diagnosis. The FDA’s announcement came on the heels of a July 2014...
View ArticleLYMEPOLICYWONK: Lyme disease testing—the CDC, LabCorp and stories that don’t...
Over the years, Lyme advocacy organizations have raised concerns to the CDC that doctors were relying on the CDC surveillance case definition to diagnose Lyme disease and, consequently, were missing...
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LYMEPOLICYWONK: Ticks Transmit a World of Disease and Co-infections Into the...
In the study, researchers collected local ticks and allowed them to feed on laboratory rats that had been bred in captivity and were free of disease. Afterward, they examined the ticks and the rats for...
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LYMEPOLICYWONK: Persistence Personified in Lyme Disease–Those Pesky Human Cases
By relying only on these flawed tests, doctors may believe the patient has been cured. However, this is not always the case. Researchers conducting extensive tissue biopsies of animals, a technique...
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LYMEPOLICYWONK: Two-Tiered Lab Testing for Lyme Disease—No Better Than a Coin...
Tests can be helpful not only to diagnose a disease, but also to manage an illness. A good test can help a doctor assess the severity of disease, estimate the patient’s prognosis, monitor the course of...
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LYMEPOLICYWONK: FDA Proposed Regulation of Lyme Tests? Take the Survey!
The current FDA approved tests for Lyme disease are notoriously insensitive and have been shown to miss more than 50% of Lyme disease cases. Currently, the FDA has approved 84 Lyme tests, which are...
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LYMEPOLICYWONK: LymeDisease.org responds to Slate’s “Lyme-Illiterate” article
LDo Letter to the Editor of Slate December 12, 2014 Julia Turner Editor in Chief juliaturneratslate@gmail.com Re: Lyme Illiterate by Brian Palmer LymeDisease.org is appalled at the recent Slate...
View ArticleLYMEPOLICYWONK: Two Standards of Care Revisited: Should Lyme Patients Have A...
Over 10 years ago, I wrote a piece called Two Standards of Care that explained the different approaches to treating Lyme disease, why the controversy exists, and what patients want. A lot has changed....
View ArticleThe FDA and Lyme Disease Testing—FDA is Listening, but Does it Matter?
The agency wants to require FDA authorization for laboratory developed tests which are currently overseen by CLIA (Clinical Laboratory Improvement Amendments) and CMS (Centers for Medicare &...
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LYMEPOLICYWONK: The IDSA chooses a token patient for its new guidelines...
Theoretically, medicine holds the interests of the patient paramount. However, sometimes the people developing guidelines have a different goal in mind, placing commercial or professional interests...
View ArticleLYMEPOLICYWONK: IDSA Guidelines Revision Process–Cause for alarm?
Unless the IDSA’s process has integrity, this will turn out badly for Lyme patients. And the IDSA’s process already appears to lack integrity. Why do I say this? Because, if the right people are not...
View ArticleLYMEPOLICYWONK: IDSA Guidelines Survey
We will present these in our formal comment submission to the IDSA on April 9th and to help promote patient interests in Lyme disease legislation and healthcare policymaking. Today patients struggle...
View ArticleLYMEPOLICYWONK: LymeDisease.org and Lyme Disease Association file comments...
On March 9, 2015, the Infectious Diseases Society of America announced that it will update its Lyme disease guidelines. The IDSA provided a 30-day window for the public to comment on its guideline...
View ArticleLYMEPOLICYWONK: Deadline extended; you can still comment on IDSA
LymeDisease.org and the national Lyme Disease Association filed comments on behalf of 67 Lyme advocacy groups. Here are our conclusions: The current Plan fails to provide the type of process integrity...
View ArticleLymePolicyWonk: IDSA Lyme disease survey results out! What’s important to...
I encourage you to read the survey results and let me know your thoughts. We included a link to them in our initial post to the IDSA, which we made in conjunction with the LDA and 67 other patient...
View ArticleLYMEPOLICYWONK: I add my thoughts to AEON Lyme disease discussion; you can too!
If you want to join in, just post your comments here. Part of my contribution to the discussion is below. Lyme disease: Who’s right, who’s wrong, and who decides. In Dr. Elizabeth Maloney’s view...
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