Provide names of other journalists involved.
None
List date(s) this work was published or aired.
23-Nov-11
Provide a brief synopsis of the story or stories, including any significant findings.
An examination of the Centers for Disease Control’s failed research program on chronic fatigue syndrome, with a major focus on the agency’s flawed case definition, harmful epidemiologic approach, and financial mismanagement. Non-CDC researchers, patients, and advocacy organizations have long criticized the CDC’s chronic fatigue syndrome research program for multiple failings. Yet news organizations have given the agency a free ride on this issue–largely because the illness remains so poorly understood. If this kind of dereliction were occurring in other program areas, it would likely have been exposed long ago. The story’s findings: The agency has focused major resources on investigating purported psychiatric and trauma-reltated factors using flawed research methodologies while largely dismissing the idea that infectious agents are likely involved. As a result, progress on finding answers has been off-track for years.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
The Chronic Fatigue Syndrome Advisory Committee minutes and other documents were very useful. Same with GAO and Inspector General reports of the CDC’s chronic fatigue syndrome program.
Explain types of human sources used.
Interviews with many clinicians, researchers and ill patients.
Results:
Not applicable.
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.
Look at the minutes and other documents from federal advisory committees–very revealing. Understand the importance of an accurate case definition in any disease investigation.