From Alice: This is a misunderstood disease if ever there was one, surfacing in large numbers during the early 1980's, many people's quality of life has been ruined by the endless and severe fatigue, exacerbated by exertion. The NIH spends only $1 per patient in research on CFS.
From SLATE: The alienation of the patient community only arose because of the mishandling of CFS by the public agencies. The best way to avoid this kind of fiasco would be for researchers and public health officials to follow their obligation to protect public health, be faithful to the science from the beginning, and fund and pursue the many promising avenues for research on CFS that have recently emerged.
Remarkably, despite the minimal funding, such avenues have emerged. Researchers are making progress toward developing a test that could definitively determine who has the disease and who doesn’t—by using either proteins in spinal fluid or alterations in gene expression after exercise. Such “biomarkers” for CFS would show whether CFS is a single disease or a cluster of related ones. An experimental drug treatment has been remarkably effective and has provided evidence that CFS is an autoimmune disease, opening a whole new area of treatment possibilities. These scientists aren’t selling testing kits or making dramatic statements about their devotion to their patients. They’re just doing their jobs. And they need a lot more government support in getting them done.
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