Patient reports aren’t anecdotal—they’re valuable data

(Press-News.org) “My body is all used up, and I have no will left to live.” Those are the first words of a new essay written by Cold Spring Harbor Laboratory Associate Professor Tobias Janowitz. They’re the words of his late mother during the final days of her life. “A perceptive woman who survived a childhood shaped by war, malnutrition, and displacement, she was not given to complaint. Her words reflected insight and recognition, not resignation,” Janowitz writes.

In a new essay published in the journal Neuron, Janowitz dives into our current understanding of a condition called cachexia. Known as a wasting syndrome, the condition typically occurs during the late stages of disease. It’s now recognized as a leading cause of death among cancer patients. Recent research from Janowitz and collaborators has revealed that cachexia affects a link between the brain and the immune system, which may reduce motivation. That could help explain why many patients with the disease may start to feel “all used up.”

Janowitz’s essay not only points to new potential therapeutic strategies for cancer cachexia and other diseases. It calls for closer collaboration between cancer researchers and neuroscientists. Moreover, it makes an impassioned plea to all scientists to listen to patients carefully. It challenges them to consider patient-reported symptoms not as anecdotal evidence, but rather as invaluable data points that may help us better understand how diseases like cancer affect the connections between the brain and the body.

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