LLEWELLYN KING: Obama responds on chronic illness
August 18, 2012 11:00 AM

On April 21, 2011, at a town hall meeting in Reno, Nev., local resident Courtney Miller asked President Obama for help. Specifically, she asked the president what the administration was doing to fund research into the debilitating lifelong illness Chronic Fatigue Syndrome, also called Myalgic Encephalomyelitis.

Miller's husband, Robert, is a sufferer.

The president has now responded extensively.

Obama has designated his deputy chief of staff for policy, Nancy-Ann DeParle, as his point person for dealing with the disease and to work with the National Institutes of Health. She has been in contact with Miller by email and phone.

The president has asked DeParle to convey a sense of urgency about CFS and to raise its standing. In a two-page letter to Miller, he said: "I have asked Nancy-Ann to stay in touch with Dr. (Francis) Collins at NIH and Dr. (Howard) Koh at HHS (Health and Human Services) about my interest in their efforts on CFS. And I have asked her to update you from time to time. She reports that you are extremely knowledgeable about developments in the research on CFS, so that I hope you will keep in touch with us as well."

In his letter, Obama said he had asked Collins for a report on NIH funding of CFS research, and he was told that last year the NIH spent $6.1 million on CFS research, which represented a 31 percent increase over the level of spending when he took office.

The CFS community -- an estimated 1 million people with the disease in the United States -- has long felt slighted by government, both by the NIH and the Centers for Disease Control (CDC), and ignored in the media.

The community notes that spending to this point in time has been minimal by Washington standards -- and even by the NIH's own standards. Multiple Sclerosis (MS), a disease with half the sufferers, gets about $100 million in research funding.

CFS sufferers are condemned to lives of pain, debilitating fatigue and sometimes total collapse, resulting in being bedridden for years. Suicide is frequent. Accurate diagnosis is a long and difficult process, involving many tests to eliminate other causes, or what doctors refer to as "wastebasket" analysis.

The politics of disease are like all politics: size matters.

Money is important, media access counts, and it helps to have a celebrity to front your cause. AIDS had Elizabeth Taylor and MS had Jerry Lewis. On all these fronts, CFS comes up short.

Also it does not have a national voice, as cancer, diabetes, heart, lung and many other afflictions do.

The name itself, Chronic Fatigue Syndrome, sticks in the craw of the sufferers. Patient advocates -- a dedicated but scattered band of sufferers and victims' family members, like Courtney Miller -- hate the name. It was conferred on the disease by the CDC, and is the official name in the United States. In the rest of the world it is called by its old name, Myalgic Encephalomyelitis, and the community much prefers that name. Obama used both names in his letter to Miller.

The complaint, which I have heard without exception from patients and their families, is that the name CFS trivializes a terrible disease and brings with it an undeserved stigma: a suggestion that the victims are not really sick, but malingering.

Another deeply felt anger among patients worldwide has been a consistent attempt by psychiatrists to claim the disease as psychosomatic, despite palpable physical debilitation. In fact, it is a disease of the immune system, according to doctors who have made a career of treating it.

Miller told me she was ecstatic about the president's letter and her communication with DeParle. "It is all that I had hoped for," she said.

Obama has some new friends.

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