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The Strange Case of NIH and an Elusive Disease

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Reprinted with the kind permission of Llewellyn King and the White House Chronicle.

By Llewellyn King

The federal government has a mostly open dialogue with those it serves and those who serve it. This happens pretty well across government agencies, from the Pentagon to the Department of Transportation to the Department of Agriculture.

So it is troubling that the National Institutes of Health, an arm of the Department of Health and Human Services, appears to have no communication with a critical but ignored patient cohort: those suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, and often referred to only as ME/CFS. NIH does not appear to hear the cries of the petitioners at its door; it seems to be interested only in classifying and defining the disease.

According to the Centers for Disease Control, ME/CFS afflicts 1 million people in the United States, and 17 million people around the world. While those numbers of victims are disputed, their suffering is not; they are ill in a terrible way.

ME/CFS takes healthy — often athletic — people and casts them into a shadow world of physical incapacity, mental fog, loneliness and relentless dependence on others. The suffering is measured in years and decades. Suicide is common.

It is a disease of the immune system, but what triggers it is unknown. Physicians who treat ME/CFS have told me that they would rather have cancer than this disease. One epidemiologist said, “With cancer, you are cured or you die. ME/CFS just goes on and on. You live the life of a zombie.”

From a physician devoted to treating and researching ME/CFS, this is not only a terrible admission, but also a de facto indictment of the national effort to find a cure, or even a therapy, for alleviating the suffering.

One of the problems affecting ME/CFS treatment is diagnosis. There are no biological labels, known as markers, that enable doctors to easily identify ME/CFS; it cannot be picked up in a blood tests or a urine sample. It is a ghostly manifestation, and doctors fall back on what is known as wastebasket diagnosis. In its simplest form, this means testing for a lot of diseases and if it does not turn out to be one of them, it could be ME/CFS.

But one case definition has satisfied the ME/CFS community in recent years, and it is endorsed by specialists in the field. Established in 2001, it is called the Canadian Consensus Criteria.

Yet, incomprehensibly, the NIH is spending some of the paltry $6 million devoted to ME/CFS, on a study to come up with a new case definition for the disease; something that no one wants and which could do real harm.

To do this work, the NIH selected the Institute of Medicine (IOM), which has no expertise in ME/CFS and which had drawn opprobrium with its clumsy attempt to do a case definition of Gulf War Syndrome.

The NIH, which has failed to explain itself in plain English, has ignited incandescent rage in the patient community and from patient advocates. In a unique outpouring of objection, 50 of the world’s top doctors and clinicians wrote to Secretary of Health and Human Services Kathleen Sibelius, pleading with her not to muddy the waters and to stay with the definition which is working well. The NIH went ahead with the IOM contract.

So lacking is government support, moral as well as financial, that the research community, including dedicated physicians such as Andreas Kogelnik of Mountain View, Calif., Daniel Peterson of Incline Village, Nev., and Derek Enlander of New York City, feel they have to raise funds privately to continue their work. Even celebrity virus hunter Ian Lipkin of Columbia University has abandoned hope of getting his seminal work funded by the NIH and has joined the researchers who have had to hold out begging bowls to the public to do their research.

Judging by social media, the entire patient community is in a state of metaphorical war with the NIH.

There is a cry from and on behalf of the pitiable sick for action, sympathy and even courtesy from the bureaucrats in Bethesda, where the NIH is headquartered. The Hippocratic Oath says, “first do no harm.” When people are in pain and despair, inaction is palpable harm.

A congressional hearing is needed to investigate decision-making in the NIH, find out about its budget request to the Office of Management and Budget, and to demand that it listen to those who suffer and those who are trying to help them.

Llewellyn King is executive producer and host of “White House Chronicle” on PBS. He is the creator and co-host of ME/CFS Alert on YouTube. His e-mail is lking@kingpublishing.com.

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5 thoughts on “The Strange Case of NIH and an Elusive Disease”

  1. nmoore says:

    I was diagnosed with Chronic Fatigue Syndrome by an Infectious Disease physician in 1993, also neurally mediated hypotension in 1994 at Johns Hopkins. After losing my twenty seven year teaching career I finally got the correct diagnoses of Lyme, Babesia and Bartonella. The ELISA and Western Blot tests that my regular physician performed came up negative with the tests through IgeneX and Fry Labs coming up with these diagnoses one month later. It is obvious that it was Lyme along with the co-infections from 1993. The worst thing is these diagnoses were not discovered until 2008 as I was misdiagnosed for fifteen years. I saw multiple physicians over that fifteen years from Cardiologists, Neurologists, Pulmonologists, etc. and all missed the correct diagnoses.

    1. janecenzura@gmail.com says:

      In Jan. 2014, a Member of Federal Govt. has place Question # 244, suffers must email their MP’s, how underfunded research, education, proper health care, no productivity of suffers which means no taxes, pay out of disability benefits, poor care from family GPs’ to the point of malpractice, Emergency Drs’ don’t know anything about ME. I could continue my rant but … see DR. Eleanor Stein web site for ideas on wording letters to MP.

    2. began says:

      Can you share doctors (& their lcation) who diagnosed nmoore’s Lyme?

    3. richcarson says:

      Hi NMore, may I ask if getting a correct diagnosis led to effective treatment and improved symptoms?

    4. harrysmom says:

      Are you normal now? Did treatment for these newly diagnosed infections rid you of all symptoms associated with Chronic Fatigue Syndrome?

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