[in case you were wondering why some scientists are being driven to lie to the public]
Autism treatment: Science hijacked to support alternative therapies Researchers' fears about misuse of their work come true [from the Chicago TRIBUNE] Dr. Carlos Pardo was trying to head off trouble. The Johns Hopkins neurologist and his colleagues had autopsied the brains of people with autism who died in accidents and found evidence of neuroinflammation. This rare look inside the autistic brain had the potential to increase understanding of the mysterious disorder. It also, he knew, could inspire doctors aiming to help children recover from autism to develop new experimental treatments -- even though the research was so preliminary the scientists did not know whether the inflammation was good or bad, or even how it might relate to autism. So when Pardo and his colleagues published their paper in the Annals of Neurology in 2005, they added an online primer that clearly explained their findings in layman's terms and sternly warned doctors not to use them to develop treatments. "We were concerned that the study would raise a lot of controversy and be misused," Pardo said. "We were right." Over and over, doctors in the autism recovery movement have used the paper to justify experimental treatments aimed at reducing neuroinflammation. Citing Pardo's research, doctors have treated children with a blood product typically reserved for people with severe immune system disorders like the one known as "bubble boy" disease. They have used it to justify sealing children with autism in pressurized bags and submarine-like metal chambers. Other children have been given a drug used to treat extremely rare genetic disorders. The causes of most cases of autism are unknown. Scientists say they do not know what has gone wrong in the brains of children with autism. There are no cures. Most physicians recommend intensive behavioral therapy and, if asked, warn parents away from experimental treatments. Even so, studies have found that up to three-quarters of families with children who have autism try at least some alternative therapies. Physicians and others in the movement -- many affiliated with the organization Defeat Autism Now! -- say their treatment protocols rest on a foundation of solid science. But the Tribune found otherwise after speaking with dozens of scientists and physicians and reviewing thousands of pages of research and court testimony. Pardo's study is just one example. In May, the Tribune reported on another questionable use of research. A geneticist and his son who promoted treating children who have autism with a testosterone inhibitor had based their protocol, in part, on the work of Simon Baron-Cohen [Sacha's cousin], a psychopathologist at England's University of Cambridge who has explored the role of the hormone in autism. Yet Baron-Cohen told the Tribune that the idea of using the drug this way "fills me with horror." Pardo said that since his paper came out he has received many questions about unproven autism treatments. He is particularly haunted by inquiries regarding powerful immunosuppressant drugs usually used on organ transplant patients, calling the idea "completely wrong." Said the researcher: "People are abusing science for the treatment of autism." 'Unlikely to be beneficial' In 2007, a Florida physician named Dr. Dan Rossignol wrote a pre-authorization letter for multiple cycles of intravenous immunoglobulin, a blood product approved to treat children with HIV or people with severe immune disorders. But his patient was a child with autism. Rossignol, a family doctor not board-certified in immunology, is a star in the world of alternative autism treatments and trains physicians at Defeat Autism Now! seminars. In his letter, obtained by the Tribune, Rossignol justified the unorthodox treatment in part by writing that "a recent study out of Johns Hopkins has shown that children with autism have evidence of neuroinflammation on autopsy and (cerebral spinal fluid) evaluations." It was Pardo's study. Rossignol did not mention that Pardo's team had written in its online primer, using capital letters for emphasis, that intravenous immunoglobulin "WOULD NOT HAVE a significant effect" on what they saw in the brains of people with autism. "THERE IS NO indication for using anti-inflammatory medications in patients with autism," the team wrote. This article is extremely long. To read it in its entirety, please go to: http://www.chicagotribune.com/health/chi-autism-science-nov23,0,240420.story -- Jim Devine / "Segui il tuo corso, e lascia dir le genti." (Go your own way and let people talk.) -- Karl, paraphrasing Dante. _______________________________________________ pen-l mailing list [email protected] https://lists.csuchico.edu/mailman/listinfo/pen-l
