ME/CFS Researcher Tells Capitol Hill About ME/CFS!

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Great article on Congressional blog

"The HIll is a top US political website, read by the White House and more lawmakers than any other site -- vital for policy, politics and election campaigns."

by Maureen Hanson - ME/CFS researcher

http://thehill.com/blogs/congress-blog/healthcare/279089-when-the-hoofbeats-are-zebras#

Anyone who binge-watches the TV show Discovery Life: Mystery Diagnosis will soon detect a pattern, one that demonstrates the need for improvements in medical training. A typical show might have a young woman suddenly taken violently ill with an apparent stomach flu. But instead of getting better, she continues feeling nauseated and weak. She has to drop out of college. At home she develops a myriad of symptoms—such as night sweats, sore throat, swollen glands, and difficulty reading and speaking. She visits a doctor, who tells her she has strep throat.

Despite antibiotics, she doesn’t get better, then goes to an internist, who tells her she should see a psychiatrist. This continues on for several more scenes—sometimes several years in the life of the ill person whose story is being told—as one after another wrong diagnosis is made. The mistaken doctors are always played by actors, as no doctor who gave the incorrect diagnosis would like to be identified. Finally a smart doctor figures out what is wrong, and is identified by name and appears on the show. The grateful young woman now has a diagnosis, and sometimes a treatment, often leading to a happy ending.

Such could be a show made to describe Laura Hillenbrand’s journey to a diagnosis of chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis, as described in her vivid, and often shocking, New Yorker article. But while she eventually did receive the correct diagnosis, she didn’t get a happy ending. For there is no effective treatment for most victims of the disease, and she remains ill and rarely able to leave her house. Such could be a show made to describe Laura Hillenbrand’s journey to a diagnosis of chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis, as described in her vivid, and often shocking, New Yorker article. But while she eventually did receive the correct diagnosis, she didn’t get a happy ending. For there is no effective treatment for most victims of the disease, and she remains ill and rarely able to leave her house.
 

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