NIH to double funding for chronic fatigue syndrome, but patient distrust remains

The most anticipated speaker late last month at an international conference devoted to the mysterious malady commonly known as chronic fatigue syndrome (CFS) was not a scientist with a hot new finding—although there was excitement about new research in the air. Rather, it was a National Institutes of Health (NIH) official bearing good news to a community that has long existed on the margins of the biomedical research establishment. Vicky Whittemore, the agency’s CFS point person in Bethesda, Maryland, delivered on a promise that NIH Director Francis Collins made last year by announcing that NIH spending for research on the poorly understood disease should rise to roughly $15 million in 2017, doubling the estimated $7.6 million handed out in 2016.

What’s more, the NIH emissary said to those gathered here, the biomedical agency will in December solicit CFS proposals from outside scientists to establish several collaborative centers for basic and clinical research, and another center to manage their data on the illness. The calls for applications, which will come with dedicated funds from the planned budget increase, are the first of their kind for CFS from the United States’s major medical research funder since 2005. “There is a shifting tide at NIH with regard to ME/CFS,” Whittemore told the conference, incorporating the term that many with the multisystem illness prefer. (ME stands for “myalgic encephalomyelitis,” and the meeting was convened by the International Association for CFS/ME.)

Some scientists working on the disease agree. “The fact that there is a budget for it at all means that the agency is taking it seriously. And it’s not coming only out of Francis Collins’s discretionary fund, but from the individual NIH institutes,” says Ian Lipkin, an immunologist at Columbia University, who serves on the Advisory Committee to the Director, Collins’s key group of external advisers. Lipkin is also a principal investigator, with Columbia psychiatrist Mady Hornig, on a $766,000 grant from NIH’s infectious diseases institute to collect samples from hundreds of patients and controls, looking for biomarkers that could be used to diagnose the disease and searching for clues to its causes.

It has been nearly 3 decades since a group of researchers led by the U.S. Centers for Disease Control and Prevention (CDC) coined the term “chronic fatigue syndrome” after an investigation of two outbreaks in the United States. Typified by exhaustion that commonly worsens with physical, mental, or emotional exertion, the condition is also often characterized by short-term memory and concentration problems and profound fatigue that sleep does not relieve. Sufferers may experience widespread muscle and joint pain, immune system problems, headaches, and many other symptoms. The onset of the disease frequently follows an infectious illness.

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A September protest called Millions Missing displayed shoes belonging to people with chronic fatigue syndrome/myalgic encephalomyelitis. This pair was among scores that lined the sidewalk in front of the Department of Health and Human Services in Washington, D.C.

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A September protest called Millions Missing displayed shoes belonging to people with chronic fatigue syndrome/myalgic encephalomyelitis. This pair was among scores that lined the sidewalk in front of the Department of Health and Human Services in Washington, D.C.

Ever since it was given a name, many researchers and physicians have viewed the malady, which has no Food and Drug Administration–approved treatment and no diagnostic test, as psychosomatic. Then, in 2015, the Institute of Medicine (IOM) dismissed the “misconception” of the disease as psychological in a report informed by a review of more than 9000 articles from 64 years of medical literature. “Remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people affected,” the authors noted. CDC estimates that ME/CFS affects more than 1 million Americans, a majority of them women.

The IOM report “had an unbelievable effect,” because it validated patients’ experiences—”it told them that they weren’t crazy,” says geneticist Ronald Davis, who directs the Genome Technology Center at Stanford University in Palo Alto, California, and was one of the report’s 15 authors. Davis became a passionate advocate for ME/CFS research and shifted his own studies to the topic after his now 33-year-old son fell ill with ME/CFS in 2008; he is now bedridden. “It also did a lot to NIH and the CDC, who had been ignoring this disease.”

Not long after the IOM report was published, NIH issued its own written assessment, concluding that research has neglected many of the biological factors behind ME/CFS and urging more basic science aimed at teasing out the mechanisms of the disease. Collins also announced a “strengthening” of the agency’s ME/CFS effort. He moved oversight of the research out of the agency’s small Office of Research on Women’s Health and into the $1.7 billion National Institute of Neurological Disorders and Stroke (NINDS), and launched an intramural study that began enrolling people late last month. Forty patients who have developed the disease within the last 5 years, after an infection, will be run through a battery of exams at the Clinical Center, the NIH’s research hospital. The assessments, from exercise stress tests to brain magnetic resonance imaging tests, will probe the biological and clinical characteristics of the disease—for which there is not even a broadly agreed-upon definition. For comparison, the study will also include healthy controls and people who have recovered from Lyme disease, which can cause similar symptoms.

The disease remains a beggar when it comes to budget.

SOURCE:http://www.sciencemag.org/news/2016/11/nih-double-funding-chronic-fatigue-syndrome-patient-distrust-remains

Post Author: Tech Review