1. Provide the title of your story or series and the names of the journalists involved.
"Dubious Diagnosis" by Patricia Callahan and Trine Tsouderos
2. List date(s) this work was published or aired.
Dec. 8, 2010
3. Provide a brief synopsis of the story or stories, including any significant findings.
There's no strong scientific evidence that chronic Lyme disease exists. Yet doctors are treating it with drugs that put patients and the public at risk. While Lyme disease is real, some doctors tell patients with symptoms as common as fatigue, eye twitching and pain that they have a chronic version of Lyme. These doctors then prescribe months, even years, of intravenous antibiotics, sometimes two or three or four at a time. Such treatment is dangerous and has killed some patients. Moreover, these drugs can cost tens of thousands of dollars a month and are not covered by insurance when used for this purpose, forcing some desperate patients to cash in retirement accounts and mortgage their homes to pay for treatment that four clinical trials have shown to be risky and ineffective for their conditions. Our investigation exposed how some promoters of the chronic Lyme plague are criminals, and luminaries in this world have been disciplined by medical boards for harming patients. Yet the chronic Lyme movement has gained such traction with the public that advocates have raised millions of dollars to fight the condition and have succeeded in getting laws passed to shield chronic Lyme doctors from the actions of medical boards.
4. Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
In addition to scrutinizing many medical journal articles, we made requests for public records, which revealed important details about the doctors and treatments we were investigating. This involved sifting through thousands of pages of documents. For instance, in explaining why she was unable to promptly turn over patient records in a civil suit, a Kansas City Lyme doctor revealed in a deposition that her office had been raided by FBI agents who seized hundreds of patient charts. Some of the key documents we reviewed included: * state and federal civil and criminal court records * bankruptcy court records * sworn depositions * medical board records and transcripts of sworn testimony at board hearings * published scientific studies * medical guidelines
5. Explain types of human sources used.
physicians, researchers, patients, patient advocates, attorneys, politicians, law enforcement officials, state medical board staff
6. Results (if any).
The stories drew more than 500 comments from readers, many of whom thanked us for standing up for science. Some said that after reading the stories they were going to advise their relatives to avoid long-term antibiotic therapy for chronic Lyme disease and seek help from other doctors for their medical problems. These stories made it clear to readers how risky it is to entrust their health to doctors who ignore the scientific evidence and profit from the desperate. One retired infectious disease specialist wrote, "Your article describes the courageous, the victims, the villains, and the uninformed. & If patients and consumers read your article carefully, and see between the lines, you will have done a service for those not only with 'Chronic Lyme Disease' but others who suffer from ill-defined and vague symptoms which have not been diagnosed."
7. Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
There were no corrections or clarifications. A coalition of chronic Lyme groups declared that we should be "hung at high noon after a trial by a jury of suffering Lyme disease patients" for questioning their diagnosis and treatment. They either did not care about or did not trust the results of randomized, double-blind, placebo-controlled trials, which showed the treatment that they promote was potentially dangerous and no more effective than a placebo. Our editors rejected their demands for false balance.
8. Advice to other journalists planning a similar story or project.
Research your topic thoroughly so that you can write with authority. But don't fall into the trap of false balance where you give equal weight to sides promoting shaky science, especially when it comes to people's health. When you write a story that exposes junk science or dubious cures, prepare for a backlash. Many people have invested their hopes, their money and their health in dubious medicine, and they see any contradiction of their views as a threat. One message board posted Trine's home address along with a message urging upset patients to "drop by and let her know what you think!" Another sent her a death threat and referenced photos of her children. (I was spared this only because I have a common name.)