Friday, March 6, 2015

SEID on Dr. Oz

Granted, Oz's audience is mostly female, but he's giving the wrong impression by repeatedly stressing that this is a disease that affects "millions of women" -- not "men and women".  Oz spent a scant 10 minutes on the topic, when we know it warrants a full hour (and then some).
Dr. Jennifer Caudell, who I'd not heard of before this week, got the name wrong, calling it Systemic Exertion Intolerance Disorder, when we've finally gotten IOM to upgrade us to a disease, but did stress "it's real, it is not fake, it is not made up."
Now we have criteria for diagnosing it.  (Actually, we've had diagnostic criteria for decades.....)  There are 5 questions to ask, and if you say Yes to 4 of them, you have SEID:
-- profound unexplained fatigue for 6 months
-- simple things exhaust you, like climbing one flight of stairs
-- unrefreshing sleep
-- brain fog
-- standing makes you worse
Rose, a patient, "nobody believed me", they thought she was crazy, and eventually she also thought she was just crazy, the doctors only wanted to give her anti-anxiety meds.  "Now I feel validated."
Researcher Dr. Ian Lipkin noted they've been at it since 1997, and most patients are not diagnosed for several years.  They're looking for biomarkers, unequivocal proof of ME/CFS/SEID (he used all three names), insight into why people are sick, and have come up with the idea of infections triggering something in the immune system.  Cytokines make you feel ill.  His group is looking in the blood, the mouth, the lower gastrointestinal tract for viruses.
Oz said what we've known all along, "women are often ignored".
Caudell explained that stress and anxiety comes with the condition (a result, not a cause, of being so sick and not believed).  She treats her patients with pacing -- a Not To Do List -- telling them to slow down and only select the three top things to do each day, not worry about the rest.  The best you can do is to manage the symptoms.
No, this was not even close to the best show Oz could have done on the subject.  Still, it could have been worse.
We should thank him for discussing SEID, while simultaneously telling him what could have been done better.

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