I Will Not Wait; I Will Educate: Comment to the CFSAC

I made this comment to the Chronic Fatigue Syndrome Advisory Committee, which gives recommendations to the Department of Health and Human Services, on January 13, 2017:

My name is Darla Nagel, and I feel like a 70-year-old who body slammed a brick wall. Seven years ago, I was a healthy 19-year-old college student with two part-time jobs. Overnight, my case of myalgic encephalomyelitis (ME) began.

Because I am one of the fortunate few with an effective ME specialist caring for me, the concern I’m focusing on today is the lack of quality medical education of ME. This illness affects 1 million Americans, according to a conservative estimate, and maybe millions more who haven’t been diagnosed. That makes the low number of trained specialists and the refusal of any medical specialty to take responsibility for caring for ME patients alarming. We need a higher priority and at least $100 million more in annual funding from the top. This would cause more health care educators to learn about this disease.

Last year, I asked several professors and deans of high-ranking medical schools what they teach about ME, and they said practically nothing is taught. Also, I reviewed over 80 medical textbooks and found not many devoted more than one sentence to ME. Those that listed treatments overemphasized cognitive behavioral therapy and graded exercise therapy, but quality science has shown their potential to harm patients. Whatever happened to “first do no harm,” and why would someone believe a psychological therapy can cure a physical illness?

Today’s medical school students can’t diagnose and treat ME patients. They aren’t taught the various sets of diagnostic criteria. They aren’t taught about beneficial treatments. They aren’t given funding to study ME. It’s no surprise that virtually no students are interested in specializing in ME in their research or clinical practice. If today’s few ME specialists retire with no one to replace them, any progress patients have experienced will be reversed.

I will not sit and wait for that to happen. I will not wait patiently for the CDC to remove cognitive behavioral therapy and graded exercise therapy from its webpages about ME. I will not wait patiently for ME’s inclusion on board certification exams. I will act because we can’t wait any longer.

I am not a malingerer. I want to be well, to work full-time, and to be useful to my country. If money talks, consider this logic: If I could work full-time, the American government would get more tax money from me. Multiply that by 1 million patients, and there would be that much more funding available for government programs. The income could even surpass the amount of money that needs to be given to ME education and research.

I thank the Advisory Committee for letting me speak. The time for the Department of Health and Human Services to listen and act was decades ago, so I say this directly to that department: don’t wait any longer. Thank you.

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Darla Nagel is an editor and writing tutor who has an invisible chronic illness. She wants to help other patients and enlighten health care professionals about our experiences. If you’d like to be alerted whenever she writes a new post, sign up by e-mailing [email protected].