Nielk
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http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome
An estimated 1 million Americans are debilitated by the condition, which isn’t well understood by the medical community. Advocates and patients argue this is in part due to a continued stigma caused by its unserious-sounding name.
Excerpt:
An estimated 1 million Americans are debilitated by the condition, which isn’t well understood by the medical community. Advocates and patients argue this is in part due to a continued stigma caused by its unserious-sounding name.
Excerpt:
So when the Institute of Medicine announced provisional members of the panel last month, many patients were angry that more than half of the members — whatever their accomplishments in their own fields — were not known to have any professional expertise in ME/CFS. Many clinicians and researchers with experience in the field have already endorsed a set of diagnostic criteria that they say should be used as the starting point for any new case definition.
“I can’t imagine any other field where this would be happening,” said Burmeister, who grew up in East Germany, moved to the U.S. in 1999, and became a citizen in 2012. “You wouldn’t have rocket scientists come up with guidelines for heart surgery. To have a majority of nonexperts on the committee — of course this is crazy.”
A broad or imprecise definition of the illness could have a ripple effect. Patients like Burmeister fear that flawed results will undermine research into organic causes and lead to treatments more appropriate for depression and other psychiatric conditions than for their illness.
For diseases with reliable tests for biomarkers that indicate the presence of an infection or other abnormal physiological phenomenon, a positive result might be all that is needed for an accurate case definition. But for conditions identified through symptoms, like Gulf War Illness and ME/CFS, creating a case definition that includes those with the illness while excluding those without it is far more difficult, especially if some of the symptoms are non-specific and subjective.