2008 Articles
2008 Articles
15 December 2008
Lyme Disease and the Politics of Public AdvocacyThe recent summary of negotiations between the Infectious Diseases Society of America and the Attorney General of Connecticut Richard Blumenthal suggested that the motivation for the Attorney General's actions was provided by Lyme disease advocates [1]. Groups such as the New Jersey Lyme Disease Association and Connecticut's Time for Lyme have acknowledged their involvement [2], but Blumenthal's long record of legal and political activism on behalf of patients with Lyme disease suggests a significant degree of self-motivation.Read the full correspondence in Clinical Infectious Diseases.
Posted by Relative Risk at 12:13 0 comments Links to this post
Labels: Blumenthal, Lyme disease, Politics
24 November 2008
Lyme Disease: Taking Shots at Shots
Congress is wading into the murky question of whether people with Lyme disease should get long-term antibiotics or whether the drugs harm more than help. That issue, which has been a never-ending source of friction among biomedical researchers between researchers and patient-advocates, will get congressional hearings next year.
Posted by Relative Risk at 09:53 0 comments Links to this post
Labels: diagnostics, Lyme disease, Politics
30 June 2008
Lyme Disease Bacterium Came From Europe Before Ice Age
Researchers at the University of Bath have discovered that a bacterium that causes Lyme disease originated in Europe, rather than in North America as previously thought. More at.....
Posted by Relative Risk at 14:55 0 comments Links to this post
Labels: Lyme disease
24 January 2008
ScienceBlog: The Internet is not the font of all knowledge, despite the plethora of information available at your fingertips.
Researchers from the University of New South Wales (UNSW) in Australia have found that while Internet searches do bring up a variety of useful materials, people pay more attention to information that matches their pre-existing beliefs.
“Even if people read the right material, they are stubborn to changing their views,” said one of the authors, UNSW Professor Enrico Coiera. “This means that providing people with the right information on its own may not be enough.”
The research considered how people use Internet search engines to answer health questions.
“We know that the web is increasingly being used by people to help them make healthcare decisions,” said Professor Coiera. “We know that there can be negative consequences if people find the wrong information, especially as people in some countries can now self-medicate by ordering drugs online. Australians can order complementary medicines online and these can interfere with other medications.”
“Our research shows that, even if search engines do find the ‘right’ information, people may still draw the wrong conclusions – in other words, their conclusions are biased.”
What also matters is where the information appears in the search results and how much time a person spends looking at it, according to the research which has been published in the Journal of the American Medical Informatics Association.
“The first or the last document the user sees has a much greater impact on their decisions,” said Professor Coiera, who is the Director of the Centre for Health Informatics at UNSW.
Dr Annie Lau worked with Professor Coiera to design an interface to help people make sense of the information which they are presented with and to break down these decision biases.
“The new search engine interface we have designed could be a part of any search engine and allows people to organise the information they find, and as a result organise their thoughts better,” said Professor Coiera.
While the research was conducted in the area of health, Professor Coiera said the results – and the technology – are applicable to other fields too.
The research on the interface will be publicly available within a year.
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Just a reminder that information isn’t knowledge and knowledge isn’t wisdom, especially if it comes from the Internet.
Posted by Relative Risk at 21:13 0 comments Links to this post
Labels: Internet
20 January 2008
Today’s Washington Post has a long article about the online delusion called Morgellon’s Disease. (There’s an excerpt below.) Morgellons is in the press these days because enough congressmen were badgered by delusional constituents that they finally asked the CDC to look into the matter. A telecon Q&A with reporters a couple of days ago resulted in numerous weekend articles about Morgellons.
The Post article doesn’t cover any new ground, but it’s description of several middle-aged female Morgellons patients does re-enforce the idea that this an Internet-based form of Delusional Parasitosis.
And, of course, some of the usual suspects associated with quackery and mysterious aliments reappear in the article. Ralph “It must be chronic Lyme” Stricker gets a mention. As does Robert Bransfield, psychiatrist to the Lyme activists, and local lab tech Ahmed Kilani.
It’s hard to know where all this will end. I can’t see the CDC going back to Congress to say, “Hey, your constituents are nuts.” At the same time, they can’t just create a new disease or disease category to satisfy the personal opinions of one small group and their enablers.
Whatever it is -- and most doctors believe it's purely delusional -- Morgellons has become a grass-roots Web phenomenon. Google it, and nearly 162,000 references show up, many of them chock-full of vivid color photographs of what people claim are strange, colorful fibers growing under their skin. Several other sufferers have taken graphic videos of themselves poking with tweezers at what appear to be fiber-entangled lesions and then posted them on YouTube. Long online discussions ramble on about the latest conspiracy theories that cause the disease -- poisonous chemicals produced by the government and spread by jet contrails, so-called chem trails; aliens; artificially intelligent nanotechnology; genetic engineering; or a government bioweapon gone awry. Others debate the latest expensive cure-alls -- antibiotics, antifungal creams, vitamin supplements, liquid silver, food-grade diatomaceous earth, deworming medication meant for cattle.
But look on the official American Academy of Dermatology Web site, and Morgellons isn't there. The skin afflictions starting with M jump from "Molluscum contagiosum" to "Mucocutaneous candidiasis." Ditto on the Infectious Diseases Society of America. A search for Morgellons on the National Institutes of Health site returns "no pages found." There is only one study of Morgellons in a peer-reviewed medical journal, the holy grail for Western medicine.
Jeffrey Meffert, an associate professor of dermatology at the University of Texas in San Antonio and a member of the American Academy of Dermatology, gives presentations to the medical community debunking Morgellons. It's not that people aren't suffering; they are, he says. It's just that he thinks they have something else, such as scabies or an eczema-like skin condition called prurigo nodularis that's little understood and for which there is no good treatment. And the fibers, he says, are easy to explain.
"People with very itchy skin have scabs, which ooze and tend to pick up threads from the environment, from dogs, cats, air filters, car upholstery, carpet," he says. "Any fibers that I have ever been presented with by one of my patients have always been textile fibers."
Posted by Relative Risk at 16:28 0 comments
Labels: Internet, Morgellons