More recommended authors: Dr Ramsay MD and Dr Richardson MD, Professor Hooper, Dr. Cheney M.D, Dr Lerner M.D., Dr Bell MD, Margaret Williams and Eileen Marshall, Gurli Bagnall, Lajla Mark, Greg and Linda Crowhurst, Stephen Ralph, Hillary Johnson, Peggy Munsen, LK Woodruff, Jill McLaughlin, Maryann Spurgin and the Countess of Mar, Mary Schweitzer, Cesar Quintero, John Anderson, Kevin Short, John Sayer and Steven Du Pre and Lois Ventura and /On this site

M.E. groups: The Committee for Justice and Recognition of M.E., RiME, The 25% M.E. Group, M.E. Research UK (MERGE) and IiME.

Read Research and Articles sorted by Topic

On this page: Articles and other writings by Hillary Johnson, Peggy Munsen, LK Woodruff, Jill McLaughlin, Maryann Spurgin PhD. and the Countess of Mar.

Articles of increased importance are highlighted in green: *O*

*O* An interview with Hillary Johnson

Is [M.E. equivalent] CFS contagious? There is ample evidence for contagion. Over the last decade, scores of cluster outbreaks of CFS have been reported to the Centers for Disease Control from all over the country. A "cluster" is a sudden outbreak among a group of people who are connected to one another by place of work or residence. These include an outbreak among children in a small, upstate New York town called Lyndonville, an outbreak in a Nevada desert town called Yerington, and an outbreak among policemen in Spokane, Washington. In a 1992 research paper on the Nevada outbreak, Harvard researchers pointed out that there was enough evidence to "suggest the possibility of an infectious agent transmissible by casual contact."

*O* Back to the future by Hillary Johnson

But back to the research referred to on January 10. According to the CAA report, Wm. Reeves says his group has made the discovery that "chronic fatigue syndrome" patients "were far more impaired" than patients with "other conditions such as pulmonary disease, multiple sclerosis and osteoarthritis." CAA/CDC doesn’t enumerate any of the other conditions, but my point is: Isn’t this news at least fifteen years old? Haven’t other groups, composed of far more knowledgeable scientists with no history of contempt for "CFS" patients or stealing the money targeted for "CFS" research, come up with these same findings? Why is the CDC simply reproducing their results, rather than moving forward with biological research into the disease?

One answer might be that they are not competent to do biological research, which many would argue is the case. Certainly, in the cases in which they have tried, CDC scientists have been unable to replicate biological findings made by numerous other groups in the US and elsewhere.

Another reason, which seems equally viable, is that they are still trying to prove to themselves that what they renamed "chronic fatigue syndrome" in 1987-1988 is actually a distinct disease, and that patients are not lying about what has happened to them. In other words, two decades after they were notified of the outbreak in Nevada, CDC employees are still trying to convince themselves that this disease is worth their own or anyone else’s time.

*O* A few more thoughts on advocacy by Hillary Johnson, January 2004

In my book, with the help of a CDC insider, I documented the theft of millions of dollars, tagged by the U.S. Congress for ME/cfs research, by a cabal of scientists at the U.S. government’s Centers for Disease Control. That was the headline provoking news in my book, I suppose. Certainly, from a journalistic perspective, it was the news that should have attracted a general interest audience to the book. Citizens don’t like to hear about individuals in government stealing millions of taxpayer dollars and—the polite word—misappropriating—those dollars for purposes other than what those dollars were intended for. For such an event to occur within an American "health" agency seemed even more scandalous. Even my fellow journalists, the most jaded among them, were incredulous that a health-oriented agency would engage in skulduggery. The FBI? Yes! The CIA? Yes! The Pentagon? Yes! The little CDC in Atlanta, Georgia? You’ve got to be kidding!

I wrote this book, Osler’s Web, with a great deal of optimism that this sensational news would alter the landscape of the politics of ME a little bit, maybe even a lot. Mostly, although the book itself got strong to excellent reviews, what happened was that my contention that ME was a pandemic disease that had been discredited and swept under the rug by federal health agencies was attacked in places like Newsweek and USA Today. Their proof? They had none; the authors merely insisted it was an incredible scenario; such things couldn’t possibly happen in a free nation with a big federal health research program in place.

My fond hopes burgeoned however when, one month after Osler’s was published, a New York-based Congressman convened a meeting in his Washington office with me and top-level administrators of the Government Accounting Office, the U.S. Congress’s independent investigative arm. The congressman asked me to outline for the GAO administrators the claims of taxpayer theft in Osler’s Web. I did so.

In time, the GAO did pursue an investigation based on the material presented in Osler’s, although there was a curious delay of about two years. The investigative arm of the U.S. Department of Health and Human Services (which controls the CDC) investigated, too. Both investigations confirmed what I had reported in Osler’s—these thefts did occur. (Incidentally, in my opinion, any money spent by CDC on this disease continues to be thievery, since the CDC remains utterly corrupt: the same incompetent scientists from the 1980s are still in charge of the disease, and they continue to publish lie after lie about ME and, in tandem, undercut the work of legitimate scientists who do publish scientific studies about ME by either defaming such studies or ignoring them.)

First identified in the 1980s By Hillary Johnson

I would like to comment on the post by Margaret Williams regarding the American Centers for Disease Control published claim on April 25 that "CFS" was "First identified in the 1980s…" Margaret Williams has indeed caught the UK psychiatric lobby in a trap of its own making by applying the CDC’s logic. But I’m moved to add to Ms. William’s comments an historical perspective in the form of a few comments about the CDC’s troubled, even rancorous, activities in the creation of the false paradigm "chronic fatigue syndrome."

Buy a second-hand copy of Hillary Johnson's groundbreaking book Oslers Web

*HIGHLY RECOMMENDED*

'Stricken: Voices from the Hidden Epidemic of CFIDS’ edited by Peggy Munsen

Dismissed by the media as the "Yuppie Flu," Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) turned out to be neither a faddish disease of the wealthy nor a passing trend, but rather a growing worldwide epidemic of devastating proportions.

In the voices of a South African journalist, a former marathon runner, a young girl, a cancer patient neglected by the system because of disdain for her chronic illness, a theologian relearning the art of spiritual empathy, and many others - the people who share their courageous stories in the anthology Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome defy cultural stereotypes and explore the complex social and political dynamics of this hidden epidemic.

Stricken confronts fascinating CFIDS issues such as the Kevorkian suicides of CFIDS patients, accusations against parents of CFIDS children of Munchausen Syndrome by Proxy, Gulf War Syndrome, the role of storytelling in a memory-impaired patient movement, and the feasibility of mass activism in a disabled population.

With perspectives from Pulitzer-prize nominated writer Susan Griffin, bestselling health writer Gary Null, beloved feminist activist Joan Nestle, and award-winning poet and essayist Floyd Skloot, Stricken is an eloquent testament to the heroism, defiance, and diversity of the Chronic Fatigue Syndrome community.

*HIGHLY RECOMMENDED*

*O* 2001, Question your own prejudices about chronic illness. Do you believe people with chronic illness are weak, have given up, have bad Karma, or just need "spiritual growth?" Ask yourselves what fears these ideas serve to assuage, and imagine ways to bridge the "us" and "them" separation that keeps disabled people in substandard care. When the New Age, or Yoga Journal, or Oprah's website, portrays CFIDS patients as people who are spiritually bankrupt, is this any different than Attorney General John Ashcroft stating that people are disabled because of God's will?

*O* 2002 Many people are stunned that I have stayed so sick for so long, mistakenly believing that CFIDS is a mild, short-term condition. Some of this confusion is due to the fact that many articles on CFIDS, and particularly many articles and books in the field of alternative medicine, use "Chronic Fatigue" and "Chronic Fatigue Syndrome" interchangeably. Even WebMD now knows that these are not the same thing -- stating, "most people who have chronic fatigue do not have the disease chronic fatigue syndrome. There are many health problems that can cause fatigue. CFS can be diagnosed only after a thorough evaluation has ruled out other possible causes of chronic fatigue." People with idiopathic chronic fatigue might spontaneously recover, but those with CFIDS generally don't. A study in 1999 found that only 4 percent of severe CFIDS patients ever fully recover (Hill, Nancy et al. "Natural History of Severe Chronic Fatigue Syndrome." Archives of Physical Medicine and Rehabilitation, 80, September 1999). Even the CDC, which used to publish optimistic, poorly designed studies on recovery, now estimates the recovery rate of CFIDS to be less than 12%, according to the CFIDS Association of America. This could change, with viable treatments, but still NOT A SINGLE DRUG has been approved by the FDA for CFIDS. Having CFIDS is very much, medically, like living in a third-world country.

*O* and 2003. Dr. Paul Cheney explained how the bodies of CFIDS patients are choosing between lower energy and life, or higher energy and death. On a physiological level, CFIDS patients live in a near-death suspension, making patients feel much like they are dying, not tired.

Commentary on Prevalence CFS in Georgia LK Woodruff

Dr. Wm Reeves needs to be removed immediately from his position! LK Woodruff

More articles by LK Woodruff:

NCF 2004 Awareness day message by Jill McLaughlin

And truth of the matter it is, it is "fatigue" that has caused the psychiatric overlay and wasted a disproportionate amount of our meager funds studying the efficacy of psychotherapy rather than trying to find viable treatments.

The fatigue model has failed and should not be accepted as a name or the basis for studying the illness. How much insight into the cause or pathophysiology of any illness would be gained by comparing it to any other condition which also shared one symptom.

Advertising fatigue or studying it or analyzing it by fatigue scales or holding fatigue conferences or setting up fatigue clinics is not going to help those with underlying neurological illnesses.

Advocacy Issues Update by Jill McLaughlin

History is replete with the tragedies of diseases awaiting proper recognition. There is considerable alignment among interested parties that the "chronic fatigue" aspect is not conducive to forwarding the mission of "distinct" public recognition, understanding and effectively treating this condition. The term 'CFS' (chronic fatigue syndrome) is used interchangeably with "chronic fatigue" (CF) and "chronic fatigue syndromes" (i.e. any syndrome that causes "chronic fatigue") in many papers, publications and the media. The symptom of fatigue obscures descriptions of the illness and the undue focus on fatigue has caused significant amounts of scarce research money to be wasted on studying one symptom rather than the illness itself.

The perceptions or misperceptions originate directly from the fatigue label, since many practitioners believe that the typical patient with "chronic fatigue" is suffering from a primary psychiatric disorder (Manu et al. 1988).

*O* ME is not fatigue by Maryann Spurgin Ph.D. M.E. is not a fatigue state, and fatigue is not a defining symptom of M.E. We do not support use of the word "fatigue" either to name this illness or to describe this illness. Patients and patient groups who want to "change the name" must first take responsibility accurately to describe the symptomatology. This is a disease wherein extending beyond a certain threshold of activity leads to symptoms, which can be described in specific, accurate terminology without reference to broad or demeaning terminology such as "fatigue" or "poor stamina.” M.E. is a disease, and patients are sick, with often excruciating symptoms that can be clearly articulated. The defining characteristic of M.E. is that patients relapse with physical exertion and develop disease progression with continued physical exertion. Hence, the defining characteristic is exercise intolerance, post-exertional muscle weakness, generalized weakness, faintness, and pain; and post-exertional relapsing of symptoms. In some cases symptoms remit with rest, and in other cases they do not. In fact, recent research on a prominent subset of the illness showed that postural stress and exercise exacerbated cardiac insufficiency in this disease. If a patient improves with exercise, that patient does not have M.E. and may have some illness other than M.E. (for example, arthritis, depression, osteoporosis, and a number of medical conditions do improve with exercise). Maryann Spurgin, Ph.D.,reviews the 2003 ME/CFS clinical case definition In sharp contrast to the 1994 CDC Fukuda criteria, which makes "fatigue" a compulsory symptom but downplays and makes optional post-exertional sickness and other cardinal symptoms, the Canadian clinical case definition specifically selects patients who worsen with exercise. The clinical definition makes it very clear and compulsory that in order to meet the diagnostic criteria, the patient must become symptomatically ill after exercise, and must also have neurological, neurocognitive, neuroendocrine, dysautonomic (for example, orthostatic intolerance), and immune manifestations. That is, worsening with exercise, and many symptoms other than fatigue, must be present for a patient to meet the diagnostic criteria. This case definition will go a long way to help distinguish ME/CFS patients from chronic fatigue patients, depressed patients, patients with PTSD, somatization, fibromyalgia, and other diseases with which ME/CFS has been confused, including those that improve with exercise. The Canadian definition specifically states that patients "become worse after exercise rather than better." This counters the view being put forward by persons such as Wessely and Chalder, who hold that the disease is an unexplained interpretation disorder and behavioral problem leading to deconditioning for which CBT and GET are effective treatments. The new case definition, much of which is backed by research and hard science, is a strong counterstatement to the view held by these psychologists and psychiatrists. Maryann Spurgin, Ph.D., reviews I Remember Me New Age "Science" or Pseudoscience: A Review of Mark Demitrack's and Susan Abbey's Chronic Fatigue Syndrome: An Integrative Approach to Evaluation and Treatment, by Maryann Spurgin, Ph.D. Chronic Fatigue Syndrome May Be An Infectious Cardiomyopathy Of Single Or Multiple Viral Etiology by Maryann Spurgin, Ph.D. The most acutely perceptive and pioneering work on CFS these days is happening in a quiet corner of the country, out of the CFS limelight. The work is being conducted by A. Martin Lerner, M.D., an infectious-disease specialist at Wayne State University, along with his colleagues in cardiology. The basic thesis of their well-documented research is that CFS is an infectious cardiomyopathy of single or multiple viral etiology -- a cardiomyopathy that in many cases is progressive and degenerative. According to the theory, CFS results when an initial infection with a virus, or a reactivation of a latent virus -- for example, EBV or CMV -- attacks cardiac tissue, producing exercise intolerance, the hallmark of CFS. The human cardiac myofiber becomes the site of persistent viral infection. The infection flares up when the infected person physically exerts him or herself. In a normal subject, an ejection fraction will rise during exercise. They note that a stationary or falling ejection fraction is abnormal. Their work cites studies showing that declining ejection fractions are not seen in normal persons leading a sedentary life. Deconditioning and a sedentary lifestyle in normal subjects are not causes of decreasing or falling left ventricular ejection fractions. On the contrary, these cardiac abnormalities are likely virally induced: in some of the CMV patients, ejection fractions reverted to normal after anti-viral therapy with ganciclovir. The Cardiac Insufficiency Hypothesis by Maryann Spurgin, Ph.D. "Chronic Obfuscation": A Review in The Nation of Hillary Johnson's OSLER'S WEB: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, by Maryann Spurgin, Ph.D. Chronic Fatigue Syndrome" (C.F.S.) is a name that reveals just how tenuous the connection between words and their referents can be. It is difficult to imagine clinical severity after hearing a name that denotes tiredness. In Osler's Web, Hillary Johnson provides a well-documented account of the politics behind that prejudicial choice of a name. Written in the style of Randy Shilts's AIDS epic, And the Band Played On (and edited by that volume's editor, Michael Denneny), Johnson's book is a thorough medical and political history of this decades-old (and variously named) syndrome during the epidemic years of 1984-1994. Beginning with Jessop's experience, it reports on vast cluster outbreaks of C.F.S. in the eighties. But the most provocative portion of Johnson's discussion concerns the federal research establishment's attempt to manufacture a mental disorder out of a physical symptomatology. In meticulous detail, Johnson shows how bias in the choice of patients, value-laden selection of C.F.S.-related data and prejudicial allocation of research funds permitted government researchers to conclude that C.F.S. was a psychiatric condition, or rather, something more akin to a behavioral problem. If Johnson is correct, then the government's conclusion is a classic illustration of the Thomas Szasz thesis: The concept of mental illness is often a political tool with which society dismisses its inconvenient members.

Is the Minister happy to rely on such manipulation of the scientific evidence as appears in the report? Does he endorse management recommendations for patients with ME who do not have psychiatric illness that have been extrapolated from findings of studies on patients with a psychiatric diagnosis?

FOR UK PARLIAMENTARY INQUIRY INTO ME/CFS

In 1999, the Countess of Mar, a stalwart campaigner for the UK ME community, obtained the Opinion of a Leading Queen’s Counsel in the House of Lords; the eminent QC’s Opinion stated:

"On the document you have sent me there is an overwhelming case for the setting up of an immediate independent investigation as to whether the nature, cause and treatment of ME as considered by the Wessely School is acceptable or consistent with good and safe medical practice. There is substantial doubt as to whether such could be the case. A formal request should be made to set up such an enquiry at which interested parties could be represented by Counsel".

Consideration of Some Issues Relating To The Published Views of Psychiatrists of The "Wessely School" in relation to their belief about the nature, cause and treatment of myalgic encephalomyelitis (ME)

It may be timely to quote from recent comments made by the Countess of Mar: 113 "I continue to pursue various avenues in the House of Lords. Gulf veterans, sheep dip victims and ME sufferers seem to take up much of my time. I continue to be concerned about the appalling way in which the Government treats these individuals and will not let go until they are treated as they should be".

INFORMATION ON MYALGIC ENCEPHALOMYELITIS (ME) FOR THE USE OF THE MEDICAL RESEARCH COUNCIL (MRC) AND THE NATIONAL INSTITUTE FOR CLINICAL EXCELLENCE (NICE) Margaret Williams, 25^th June 2004

This ambivalence of classification in the CMO’s report and the MRC report was further exploited in 2000 by the deliberate inclusion of CFS/ME as a mental disorder in the Guide to Mental Health in Primary Care produced by the UK WHO Collaborating Centre at the Institute of Psychiatry where Professor Simon Wessely works.

It is not permitted under WHO rules to move a condition from one chapter of the ICD to another; moreover the WHO does not classify diseases by practice specialities: they are placed within a chapter according to pathophysiology. It fell to the Countess of Mar to obtain a retraction in the form of a letter dated 11^th February 2004 from the Health Minister, Lord Warner, who confirmed that "the WHO, the WHO Collaborating Centre and the Department of Health have now agreed a position on the classification of CFS/ME. The UK accepts ICD-10 (and) the Department accepts that it might have been clearer to say that chronic fatigue syndrome is indexed to the neurology chapter and fatigues states to the mental health chapter".