n observed substantial healing and said he had never seen anything like it. Since then, my son has experienced rapid weight gain and is doing well.
"It was just so unbelievable to me that nobody was addressing the problem," continues Meyer. "So I began, out of frustration, calling the Department of Agriculture in Florida. I got referred up the line, and I kept getting closed doors, passing the buck, getting bounced from FDA [Food and Drug Administration] to USDA to the Center for Veterinary Medicine. And I never came up with a good answer. There was just no concern whether people are being infected every day. When I heard that this was something that for 15 years could have been dealt with, it seemed too unbelievable to be true."
A situation that seemed unbelievable to Meyer is, in fact, not without precedent. Stomach ulcers had long been thought to be caused by excess stomach acid. In the 1983, an Australian researcher named Barry Marshall proposed that ulcers were caused by a bacterium known as Helicobacter pylori. The theory and Marshall were ridiculed until it was slowly but surely proven true over the next decade. This situation is now cited quite often by researchers who suspect Mp causes or contributes to Crohn's.
But as difficult as it was to convince the medical establishment that a bacterium, not stress, causes ulcers, it was not nearly as controversial as suggesting that contaminated milk might possibly contribute to a debilitating gastrointestinal disease, especially when that disease is thought by a vast majority of the medical community to be an immunological malfunction.
"Once I realized how big this was, I was reluctant to really decide how committed I wanted to be with this," Meyer says. "We had the drugs for my son, I could have stopped there. But I realized, for whatever reason, this dropped into my lap, and I had to have the courage to do what needed to be done. ...A researcher at CDC [Centers for Disease Control] said to me, and I don't want to use his name, 'What I suggest to you, Ms. Meyer, is that you form a grassroots organization and get politically proactive.'"
So she and Kennedy began communicating via e-mail, and Meyer met two other people, Cheryl Miller and Stephen Merkel -- both of whom came upon Kennedy's Web site while researching Crohn's in hopes of providing answers to their loved ones affected by the disease. Together, the four of them formed PARA, or the Paratuberculosis Awareness and Research Association, in October 1997 and launched their own Web site.
"Before, in order to conduct a grassroots effort without the Internet, it would have been impossible," says Meyer. "Through the power of the Internet, we think we're responsible for bringing the researchers together. Before this, hardly any of them were in contact. Now they're communicating."
In addition to linking researchers from all corners of the globe -- including Australia, Ireland, Great Britain and in the United States, Florida, Texas and Massachusetts -- PARA also embarked on a major lobbying effort, questioning the FDA about milk safety and the USDA about efforts to control Johne's disease, and calling for Congressional hearings and legislation. They attended U.S. Animal Health Association meetings, sparring with the head of National Milk Producers Federation. In a word, they have been dogged.
The FDA -- despite four studies that conclude Mp survives the pasteurization process -- insists that milk is safe, relying on the two studies that show Mp does not survive. In a letter dated Feb. 9, 1998, Joseph Smucker, the FDA's milk safety team leader wrote, "After a review of the available literature on this subject, it is the position of FDA that the latest research shows conclusively that commercial pasteurization does indeed eliminate this hazard" (emphasis added).
In another letter to PARA, the FDA writes, "The available information suggests that only low levels of M. paratuberculosis can be expected to be found in raw milk and, because the organism is very slow growing, only low levels can be expected in milk when it is subjec