OSLERSWEB.COM
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HILLARY JOHNSON, AUTHOR OF OSLER'S WEB, welcomes you--patients, doctors, scientists and all who are interested in matters of bio-politics and medical ethics--to OslersWeb.com, a site dedicated to the pandemic disease that for a quarter century has been called "chronic fatigue syndrome." The original scientific name for this disease was myalgic encephalomyelitis, or M.E., a name that is gradually being restored. Believed to afflict more than 17 million children and adults worldwide, M.E. has received little or no biomedical research funding from federal health agencies in the U.S., the United Kingdom and other developed countries. I believe the two-decades-long refusal of government agencies to investigate this disease, prevent its spread and ensure scientifically-based care for patients constituted medical fraud, violated the civil rights of sufferers and jeopardized the health of present and future generations. Neglect of this public health crisis by governments has been morally indefensible
BACKGROUND
Osler's Web is a "must read" for anyone curious about the evolution of a world-wide epidemic of disease that continues to spread unabated. This so-far incurable and disabling malady renders its victims vulnerable to myriad complications over a period of years and decades, including lymphoma, leukemia and other cancers, heart disease and stroke, and sub-acute and acute encephalitis. The most seriously afflicted patients must be tube fed and remain bed-bound, unable to tolerate light or sound, for years. Life expectancy is reduced by an estimated twenty-five years. The disease has a long history of discrete outbreaks going back to at least the early 1930s, but in the 1980s, concurrent with the AIDS epidemic, it began to spread exponentially. Today, an estimated 17 million are ill. The epidemiology suggests apparent transmission within families and among close contacts. Since the late 1980s, four groups of investigators have found evidence for a new or novel retrovirus in patients, findings the U.S. Centers for Disease Control have dismissed. Nevertheless, Canada, Australia, New Zealand, the United Kingdom and the United States have recently declared that patients may no longer be blood donors. Retroviruses establish permanent infections in both humans and animals that cannot be reversed or cured, once acquired. M.E. has suffered a bleak history in the annals of medicine; likely, no other disease except perhaps leprosy has been so reviled or misunderstood, resulting in extreme hostility toward sufferers on the part of the medical establishment and the general public. Ground Zero for the most malicious treatment of patients with M.E. has been the United Kingdom, where patients have been forcibly removed from their homes and placed in psychiatric hospitals--in some cases, resulting in their deaths. Osler's Web revealed that the Centers for Disease Control devised a systematic program beginning in 1987 of stealing millions of dollars from a Congressionally mandated research program and that high-ranking CDC officials repeatedly lied to Congress about their progress in the disease in order to obtain additional funds for what constituted a slush fund. Employees who complained about the ethics of this unofficial theft faced intimidation by top executives at the agency. After being alerted to the charges against the CDC in Osler's Web, New York Congressman Jerrold Nadler requested that the Secretary of Health follow up with investigation. Resulting investigations by both the General Accounting Office and the Inspector General of the Department of Health and Human Services corroborated the allegations in Osler's Web. A new accounting system was instituted at the Centers for Disease Control. Nonetheless, the disease continued to languish at that agency with virtually no research into its pathophysiology or epidemiology. In 2006, the CDC held a national press conference to announce that the disease was caused by a genetic pre-disposition to be unable to handle stress combined with a history of child sexual molestation, a theory starkly at odds with the then nearly 5,000 scientific papers already published on the disease. CFS has fared no better at the National Institutes of Health. The logical institute to investigate the disease, the National Institute for Allergy and Infectious Diseases (NIAID), has failed to fund most extramural grant requests to study the disease. In spite of its apparent infectious nature and the extraordinary numbers of people afflicted there is no disease on which the NIH spends less in its extramural grant prgram. In the autumn of 2009, scientific collaborators published in Science magazine evidence of infection by an apparent new family of human retroviruses in a majority of M.E. patients. The report incicted an unprecedented spate of interest in the disease among both the lay press and in science labs around the world. Although this controversial finding remains in limbo, increasingly, "venture philanthropists" in the U.S. are emerging to support academic research undertaken independently of the government. Billions of dollars in scientific patents and drug development are at stake as, a quarter century after the epidemic began, the scientific world begins to take note of a disease governments around the world have claimed was psychoneurosis. In October of 2011, Bjorn Guldvog, the deputy director general of the Norwegian Directorate of Health, made the public comment, "I think that we have not cared for people with M.E. to a great extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that." The comment was taken as an apology by sufferers in Norway, and patients in the U.S, the U.K., and elsewhere have followed with requests for apologies from their governments. 
On May 19th, 2011, Hillary Johnson and Dr. Ian Gibson presented transatlantic views of the influence of politics on research, media and healthcare at the pre-conference banquet at Invest in ME's 6th International Conference in London. Twenty nations were represented at this conference on May 20th. To order a reasonably priced DVD of the entire conference, "The Way Forward: A Case for Clinical Trials," please visit Invest in ME's conference website.
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