I recently attended a conference in Orlando, FL and for some reason decided it would be a good idea to drive from Chapel Hill, NC (mistake). As a postdoc, I have the luxury of a (small) travel budget that I can use. I have made this drive several times (as some of you may know, I am a University of Florida alum – go gators!) but this time seemed unusually grueling. During moments of driving despair on I-95 when you can’t do work (even though your email is continuously blowing up) I turn to one of my favorite podcasts – NPR’s TED Radio Hour. I decided to listen to an episode titled “Getting Better” – where the fabulous host, Guy Raz, interviewed four TED speakers about how we view disease, how we diagnosis and how we get better. This episode was particularly salient to me given my area of research and working for many years in a health care environment, but what I liked most about it was the fact that it challenged commonly accepted perceptions of disease and diagnosis. Health care providers sometimes fall prey to stereotypes about people with certain characteristics and who belong to particular demographic groups.
“When my doctor diagnosed me with conversion disorder, he was invoking a lineage of ideas about women’s bodies that are over 2,500 years old. The Roman physician Galen thought that hysteria was caused by sexual deprivation in particularly passionate women. The Greeks thought that the uterus would literally dry up and wander around the body in search of moisture, pressing on internal organs – yes (laughter) – causing symptoms from extreme emotions to dizziness then paralysis.
These ideas went largely unchanged for several millennia, until the 1880s when neurologists tried to modernize the theory of hysteria. Sigmund Freud developed a theory that the unconscious mind could produce physical symptoms when dealing with memories or emotions too painful for the conscious mind to handle. It converted these emotions into physical symptoms. This meant that men can now get hysteria. But of course, women were still the most susceptible.
Why has this idea had such staying power? I do think it has to do with sexism. But I also think that, fundamentally, doctors want to help. They want to know the answer. And this category allows doctors to treat what would otherwise be untreatable, to explain illnesses that have no explanation. The problem is that this can cause real harm.”
It’s estimated that about 15 to 30 million people around the world have this disease. In the U.S., where I’m from, it’s about 1 million people. That makes it roughly twice as common as multiple sclerosis.
Patients can live for decades with the physical function of someone with congestive heart failure. Twenty-five percent of us are homebound or bedridden and 75 to 85 percent of us can’t even work part time. How could a disease this common and this devastating have been forgotten by medicine? All around the world, ME is one of the least-funded diseases. So in the U.S., we spend each year roughly $2,500 per AIDS patient, $250 per MS patient and just $5 per year per ME patient.
I think one of the most annoying things a patients can do
http://www.npr.org/programs/ted-radio-hour/514121462/getting-better?showDate=2017-02-10
