OSLERSWEB.COM
I am the sole author and copyright holder of the book Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. It is my intellectual property and is not in the public domain. Plagiarism has been equally a problem. For those who are unsure of what constitutes plagiarism, here is a link. If you wish to quote from Osler's Web, you are free to do so but only if you first seek and receive permission from me, author and copyright holder. There are three levels of quotation I will generally approve: A sentence or phrase, as for a book review; A short quote for a blog, meaning no more than a short paragraph (50 words or less); A short quote for a published work, such as a book or an article, again, no more than a brief paragraph (250 words or less). Again, please seek permission by sending a letter to this website. I have almost universally allowed those who make a formal request to me to quote from the book to do so. After recieving my permission: 1) The quoted material must appear in quotations 2) the name of the book cited 3) the author's name (Hillary Johnson) cited; 4) the page on which the quote appears in the actual book cited. To seek such permission to quote from Osler's Web, please send your request to this website by going to the letters page, which may be found in the headers. For a more in-depth discussion of plagiarism and copyright infringement as it relates to Osler's Web, please see the text below: It is both unethical and a civil law violation to misappropriate the intelletual property of Osler’s Web without first requesting permission from the author and sole copyright holder, Hillary Johnson. Should permission be granted, citation of the source must be complete and accurate. The solutions to this very serious problem begins with alerting any potential plagiarists of Osler’s Web that they are, in addition to committing the unethical act of plagiarism, infringing on a copyright, which I am taking the time to do now. Anyone who is guilty of plagiarism and or copyright infringement as a first step needs to correct the problem immediately. If the material is not removed, the publisher, ISP provider, or other purveyor of the material will be notified of the copyright infringement. ISP providers are responsible for requesting that the material be removed and and/or removing it with or without the permission of the offender. If the material is not removed after I or my representatives make such a request, additional legal remedies will be taken against the offender. Osler's Web is a major historical work, but it is not the Encyclopedia Britannica or a dictionary, nor is it in the public domain. It is now, and since its publication in 1996, always has been available in full to anyone who wants to read it in its complete and unabridged format, however. I am the sole copyright holder. No doubt for some, the horror of the plight in which many CFS sufferers find themselves, and the relief that the historical facts contained in my book has provided to so many, has justified the informal manner in which my work has been, on ocassion, infringed upon and plagiarized. But there is no possible justification for engaging in unlawful, unethical acts that help no one and gratuitously cause harm. There is much left to do in the community effort that will be necessary to bring all the facts of this terrible chapter in public health management to a just and humanitarian resolution. Anyone now choosing to report on the lives of those who made themselves stalwarts and heroes in this fight, yet are doing so by any means necessary and in shameful ways, should reconsider the profound human tragedy which is still being played out and stop seeking their own advantage. I have always given my permission to people who wish to to quote from Osler’s Web, if they A) seek and obtain my permission, and B) if they put the material in quotations and cite the name of the book, it’s author, the page on which the quote appears. All the same applies, of course, to paraphrasing of the language in Osler's Web. To seek permission, please send a letter to this website. If any further clarity on issues of plagiarism or copyright infringement is required, please see the following Wikipedia entry on Plagiarism and copyright infringement. Hillary Johnson April 2, 2012 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.
|
|
