After she received her doctorate in Biology at the University of California – Davis, Caroline Christian spent the next fifteen years struggling with ME/CFS. She did field work in South Africa, began raising a family, and secured a faculty position in Environmental Studies at Sonoma State University. Finally, however, the illness has compelled her to give up her career, as she explains in this post on the Health Rising blog, which is part of the Lives Interrupted Project.
Here is how Professor Christian describes her situation:
I remain hopeful that being a professor is not my last professional act, but the varied and complex nature of my illness means I am no longer able to work, in any capacity, and likely for the foreseeable future (or until effective treatments are developed). I am still the same me, my brain, when working, is still full of curiosity, and I have a strong desire to serve and connect with people. This is especially hard for me because in a better moment, I can almost imagine tackling a project. I pick up an idea, make progress, then crash. It could be two months before I return to it again, if at all. There is a virtual graveyard where many fun and creative ideas and dreams of mine have gone to die. With my brain fog, ideas float around me in slow and random motion, as on a space ship with no gravity. Occasionally I reach for an idea and occasionally I catch one. I am surprisingly OK with this process. But the truth is that even these ideas may never take flight.
Her encounters with the medical establishment will be familiar to anyone who has read my earlier posts on ME/CFS:
ME/CFS is the only disease for which exercise (or any form of exertion) worsens the condition. This runs counter to most medical and popular advice on how to stay healthy. When ME/CFS patients are delayed in getting a proper diagnosis, they run the risk of overdoing it, and in doing so, making their condition far worse.
Much of this happens at the hands of physicians, who insist that exercise is the answer to our fatigue. It is well documented that most exercise harms people with ME/CFS. Sadly, progress in ME/CFS research was largely thwarted for five years by an influential group of British psychiatrists who published a study in the Lancetasserting that exercise and cognitive behavioral therapy were effective treatments for this disease. Subsequent reanalysis of the data revealed serious flaws in the paper, and the U.S. Center for Disease Control and Prevention (CDC) has removed all mention of this study from its website. Too much evidence has mounted for anyone now to refute the fact that ME/CFS is a very serious neuro-immune disease, yet the legacy of this study continues, especially in the United Kingdom.
And here is her very poignant closing paragraph, which tells you much of what you need to know about living with ME/CFS:
My dream one day is to walk into a doctor’s office or the emergency room and have them understand right away what kind of care is needed, as occurs with other major illnesses affecting millions of people worldwide. In the meantime, I will apply what energy I have to recovering and helping make this dream become a reality.
On a more encouraging note, Jane Brody had a column this week in the New York Times in which she dispelled many of the misconceptions about ME/CFS. You can read it here.
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