May 10-11th in over 20 countries there will be a protest for people with Lyme & tick-borne diseases. The problem is the Infectious Disease Society of America (IDSA) is has major conflicts of interests including patenting the organism that causes Lyme disease. They have set up the diagnostic and treatment guidelines. Patients around the world are not being diagnosed and those that have been diagnosed are being refused treatment because health care insurance providers do not want to pay. Millions are effected. Lives are ruined. We do not want to have to do this protest again. Insights welcome.
Gary P. Wormser, Raymond J. Dattwyler, Eugene D. Shaprio, John J. Halperin, Allen C. Steere, Mark S. Klempner, Peter J. Krause, Johan S. Bakken, Franc Strle, Gerold Stanek, Linda Bockenstedt, Durland Fish, J. Stephen Dumler & Robert B. Nadelman are the IDSA writers/members of the guidelines for treatment for Lyme and tick-borne infections.
This hardly seems a sensible way to settle scientific questions. Companies hoping to develop useful products *should* fund research concerning those products. Well trained physicians and scientists *should* be involved in those studies. So saying that there are ties between drug makers and academics is not evidence of corruption, but of the way things probably need to be. A robust, well funded academic community is probably the best check against corrupt research. The funding for that community is going to come largely from the people with the money --the drug development companies. So yes, there is a risk of cheating for a buck. But there are ways to minimize that risk.
Is this about the belief that such a thing as chronic Lyme disease exists? (The majority opinion is that it does not.) http://en.wikipedia.org/wiki/Lyme_disease#.22Chronic_Lyme_disease.22_and_post-Lyme_syndrome http://www.cdc.gov/MMWR/preview/mmwrhtml/mm5405a6.htm
Australia has had a large number of Lyme disease cases go unreported to authorities until this past year. I knew several individuals who had it - what a horror, you should see the scars. It was the awareness and concern of individuals that brought about official reporting. The individuals I knew who had Lyme dissease eventually recovered, but it took years. Their healing was slowed and pain needlessly extended by doctors not wanting to report it or acknowledge it so not providing correct medical handling. http://www.mayoclinic.com/health/lyme-disease/DS00116/DSECTION=treatments-and-drugs Governments are afraid of causing national scares when only small areas are affected. Real estate companies don't like their prime areas reported as tick-infested and disease risky. So reports are stalled, questioned, squelched. It took years for certain risky areas in Australia to be reported. Avalon, NSW, folks. Three cases I saw firsthand of people with recurring circular Lyme disease scars from head to toe and they each had to persist for over a year before a doctor treated them properly. Shameful. Everyone has a right to know the health risks related to any area they live in or where they might have an interest in purchasing property.
In Australia, there does seem to be a definite disconnect between the government, who are going by one study to say that there is no lyme disease in Australia, and groups who say that's rubbish. http://www0.health.nsw.gov.au/factsheets/infectious/lyme_disease.html http://www.lymedisease.org.au/ http://www.lymedisease.org.au/wp-co...ralian-patient-experience-in-2012-22nov12.pdf http://www.lymedisease.org.au/about-lyme-disease/myths-surrounding-lyme-disease-in-australia/ As well, there seems to be extreme delay in treatment for people who may have contracted lyme disease outside Australia. (Which is nasty if left untreated for years.)
^^ Great refs and summary of the situation here, DeathHampster. The dinky-die Aussies I've spoken to have seen enough Lyme Disease in their lives that they're just shaking their heads in disbelief over that gov claim. The protest tables set up at malls on the weekends around Sydney have been 3-deep with people signing up to support the Lyme Disease awareness & protest.
I didn't look at it in any depth, and can't say who's correct. From a quick "sniff test", the lyme disease people certainly don't give off the crazy smell that the anti-vaxxers do, for example.
No, they don't. Not here, anyway. They just want the cases that have been reported by individuals and treated by doctors to be reported by the government. They don't want a national scare, they want better medical care and a focus on the areas where Lyme Disease was found so that it doesn't spread. The key folks all know someone who had or has Lyme disease. Sounds sane to me.
