List date(s) this work was published or aired.
9/17/2011; 3/12/2011; 3/5/2011
Provide a brief synopsis of the story or stories, including any significant findings.
When researchers in late 2009 reported a possible link between chronic fatigue syndrome and the retrovirus known as XMRV, it opened a pandora’s box of issues. Scientists and public health officials raced to understand the findings and determine what, if any, threat the virus posed to the public. For many patients, it seemed like the dawn of a new era– at last they might have proof that chronic fatigue syndrome is a biological condition and not all in their heads as some critics have contended. But all along, many in the scientific community expressed doubts about the virus’s importance. Through the evocative, richly detailed stories of people embroiled in the controversy, Amy Dockser Marcus has chronicled the flurry of scientific activity and emotion that the findings unleashed and the rising awareness of this puzzling disorder. Her March piece “The Puzzle of Chronic Fatigue” brings us the story of a community and a doctor hoping for resolution in the mystery that has plagued them for decades– what made the children of Lyndonville sick? In “War on a Mystery Disease,” she explores the emotional clash that can occur between patients and scientists when the measured pace of research doesn’t meet the expectations of an anxious public. And in her touching September piece, “Wave of New Disabilities,” she reveals a very real and growing tension: How far can schools reasonably go to accommodate the growing range of “hidden” conditions like chronic fatigue syndrome that are devastating to a child but are difficult for educators to understand or even believe?
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
All three pieces required using different types of documents and Internet resources. In “The Puzzle of Chronic Fatigue,” Amy needed to review the history of a 20-year-plus mystery. She needed to track down people who had been children during the initial outbreak and now were adults living in different communities, a task made easier with the Internet. She also used the Internet to find the team of scientists who once worked at the CDC and were brought in to investigate the initial outbreak. Dr. Bell supplied her with many published papers and unpublished documents related to his investigation over the years. In “War on a Mystery Disease”, the Internet was a vital resource in order for Amy to follow online patient chat groups. Many CFS patients are so ill that they are unable to leave their homes and online chat groups, blogs and websites allowed her to track patients’ reactions to the scientists and to the scientific controversy. Finally, in “Wave of New Disabilities,” documents were crucial in reconstructing the conflict between the student’s family and the school. The school was reluctant at first to participate in the story, citing privacy concerns. The family, on the other hand, provided copies of all emails between themselves and school administrators and teachers, all of Christina’s school and medical records, and all the files provided to a lawyer that they consulted.
Explain types of human sources used.
CFS is a misunderstood or poorly understood disease and human sources are vital to letting readers get a fuller picture of the condition. In all three stories, access to scientists, patients, and researchers was vital to telling the stories. Amy spent time in Lyndonville, interviewing doctors, nurses, parents and now grown children affected by the outbreak. She found people who were living in the town at the time who helped her understand what it was like to live through the outbreak. The scientists in War on A Mystery Disease gave her access to their labs and let her listen in on a meeting where they discussed their experiments and their thoughts on how to move the research forward. She also attended NIH meetings in order to see first-hand the clash between scientists and patients. In “Wave of New Disabilities,” Amy had to go to Christina’s house to spend time with her since she is too ill to go out very often. Meeting Christina’s family and seeing her in her home environment was essential to understanding her serious physical limitations. Amy also got to visit her school and meet the administrator in charge of her case in person. All three stories were reported and written over an extended period of time, and so developing relationships with all the parties and engaging their trust was vital to the reporting.
Results:
NA
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.
No
Advice to other journalists planning a similar story or project.
Writing about CFS has been one of the most challenging reporting assignments I have undertaken. It is essential in working on such stories that reporters understand the culture of the patients and the history of the disease. Before I started work on the pieces, I read up on the history of CFS, which enabled me to better understand why the patients were so mistrustful of any sort of medical or scientific authority and their deep-seated suspicions. Their suspicions about anyone who disagreed with their point-of-view extended to reporters who included both sides. I received hundreds of emails from patients, many of which accused me or my editors of being on one side of the debate or the other. I became the subject of on-line chats and discussions, and people went on-line to try to find out personal information about me, and to use this information to determine why or why not I chose to write about certain topics. I worked hard to constantly develop new sources so that I did not have to rely on one or two so-called “experts” who might not be representative of what the majority of patients or scientists might be thinking