In addition to providing an update on chronic fatigue research, this article in the Wall Street Journal summarizes some interesting points about the larger question of how illnesses are defined and the interplay between that and treatment research. As MCNTalk noted several weeks ago (What’s in a Name? For Illnesses, it’s Fodder for Debate) treatments may vary depending upon a physician’s diagnostic measurements. In a posting earlier this week (Gene Work Yields New Treatment For Lupus) MCNTalk further explored dilemmas raised by a condition’s definition.
Points to ponder:
- The Internet has given patients the ability to organize and rapidly disseminate medical information—and rumors as well. Patient advocacy groups are increasingly powerful, involved in central endeavors such as funding research and collecting samples critical to experiments.
- In the case of chronic fatigue treatment, Stuart Le Grice, head of the National Cancer Institute’s Center of Excellence in HIV/AIDS and cancer virology, is skeptical about XMRV’s role in the disorder. He is sympathetic to patients but he insists that science can’t be rushed. Desperate patients who want immediate answers risk diverting attention from essential research. “There’s a danger of deflecting us from what we really want to do,” Dr. Le Grice says.
- There has never been any consensus on what causes the syndrome. Many doctors believe that there can be different triggers, including viruses and genetic vulnerability. There are still some doctors who believe the condition is psychiatric, a stance many patients believe has discredited them and slowed down efforts to find treatments.
- The clashes between patients and scientists come as science in general becomes more polarized, according to a study published in the Journal of Risk Research last year. Researchers found that when scientists’ conclusions conflict with a community’s cultural values, people don’t accept the scientific consensus. “The phenomenon we are looking at is a cultural war over facts,” says Dan Kahan, director of the Cultural Cognition Project at Yale Law School, who co-authored the study last year.
Very interesting. Thanks for bringing this to light…
In Europe, there is a long history of ill defined disease, such as “ME” and, going way back, railway spine. I have no trouble with patients believing they have some disease. I think we need to draw a line, however, with regard to disability certification. If you look closely, many of the patients undoubtedly are receiving disability payments and other recompense for their disease. Most people can work, and these patients would be best served by finding meaningful work. This is an age old problem. What do we do?