My Story: A brief introduction to my history with CFS/M.E. by Mary Schweitzer

On October 24, 1994, I went up to my office at Villanova to grade essay exams. Hours later I "awoke" from what seemed to be a coma - I had no idea how long I had been sitting in the same position, seeming awake, yet not aware of my surroundings. I could not read one word of the bluebook in front of me. It took fifteen minutes of sheer willpower to be able to stand up and use the restroom - let alone to drive home (one hour from Villanova). I was diagnosed with CFS/M.E. - Chronic Fatigue Syndrome (which I later learned is called Myalgic Encephalomyelitis in the UK, Canada, and Australia). From that point on my life would never be the same.

Good MORning, CEEfids by Mary Schweitzer

don't let ANYBODY ever tell you that CFIDS isn't HARD work.

Having to give up work by Mary Schweitzer, 1997

For some it may be a choice whether or not to work, but for me there are no choices left.

I am - was? - an associate professor of history at Villanova University. Johns Hopkins Ph.D. 1984. My dissertation won a prize, and was published by Columbia University press. A husband, two kids, two dogs--I was already very productive publishing, but I knew that my peak years would be in my late forties and fifties, when my children were on their own. I didn't expect this.

What is the "fatigue" like in "Chronic Fatigue Syndrome"? by Mary Schweitzer, 1998

Spacing Out at the Ballpark by Mary Schweitzer, 1997

I get spacey in crowds -- but since I can't drive (my confusion is too strong), I never go anywhere by myself. So ... I just relax and go with it. That is, lots of people pay to get a buzz on; I get one for free. I really need a "keeper" with me, though -- when my family left me early at the All-Star Game preliminaries in July 1996 (they went down to a party downtown that would have been too much for me, and I said I'd just enjoy sitting and watching the stuff at the Vet), if it wasn't for the kindness of strangers, I think I would have left my pocketbook in ten different places.

Why I hate the term "fatigue" by Mary Schweitzer

In the English language "fatigue" means "tired." Drawing it out more, the connation is tired from working.

In the public mind, to say we have "fatigue" sounds like we're tired from working. Well, who isn't these days?

The "fatigue" that we have--I would identify almost seven varieties myself--is not like anything I ever experienced in my other life. But it is incredibly hard to explain that to people.

*O* Sadness, Frustration, and Depression by Mary Schweitzer, 1997

We who are PWCs struggle with three emotions: sadness, frustration, and depression -- they are not the same, and the answer to them is not the same. But when we talk about them, doctors and friends seem to think they are the same.

*O* Essay on R.E.D.D., or RnaseL Enzyme Dysfunction Disease by Mary Schweitzer

We certainly have significant evidence that RNaseL Enzyme Dysfunction Disease (R.E.D.D.) is Chronic Fatigue Syndrome (CFS).

RNaseL Enzyme Dysfuncion is a very serious condition. The patient needs to know as soon as possible whether or not he/she has it, because it means that we cannot defeat viruses the way normal people can. Anything that further weakens the body's ability to fight active viruses is frightingly dangerous for R.E.D.D. patients. Hence the CFS and M.E. patient community, which has warned the medical community for years of the potential danger of haphazardly insisting on pushing patients into exercise, was medically correct in doing so. (Confirmed independently by research conducted at the New Jersey College of Medicine that demonstrated that CDC-Defined CFS patients could not remain in aerobic metabolism for three minutes during mild exertion; they jumped from resting to anaerobic metabolism almost immediately.)

My Ampligen Diaries by Mary Schweitzer

February 4, 1999, I began treatment with an experimental drug called Ampligen. These are my Ampligen Diaries. I expect to be on it a full year, at least, and it will cost my family $40,000 for the drug, the infusions, the doctor's visits, and the testing. I wish there was a way for insurance to pay some of this cost, but this is the only way the FDA will release it right now. I feel very grateful that my family has been able, and willing, to fund this protocol, and I hope it becomes available to others soon.

*O* Problems continue within U.S. government agencies by Mary Schweitzer

Despite efforts by the U.S. Congress to bring federal health agencies in line with the public's concern about CFS/CFIDS, both the NIH and CDC continue to behave as if on-campus interests were all that mattered.

The CDC will not publicize the results of their own Wichita survey, which led to an estimate of 500,000 persons in the United States, because it is still awaiting publication. One presumes they believe it will not have received the imprint of scholarly science until it has been published in a peer-reviewed journal --yet, they continue to ignore research that has already been published in such journals, when it has been conducted off-campus - that is, "outside-the-beltway. The most glaring example can be found in their refusal to publicize the dePaul demographic study, conducted by Leonard Jason et al, which was recently published in the Annales of Internal Medicine. This two-year study concluded that as many as 800,000 Americans may have Chronic Fatigue Syndrome, that it affects all income and ethnic groups equally, and (as in the Wichita study), that 90 percent of Americans had not bee diagnosed.

*O* Stress and Chronic Illness: CFS/M.E. and Fibromyalgia, © 1999 by Mary Schweitzer

What happens to a patient who is severely ill and remains undiagnosed - and therefore untreated - for years and years? First, you lose your job. When you lose your job, you lose your health insurance as well as any chance at private long-term disability payments. Without disability insurance, unless you have a spouse or parents who are willing to support you, one by one all of your assets disappear. Without health insurance, you can no longer see the doctors who specialize in the disease, and are forced to go to emergency rooms or clinics when the situation gets so bad you can't stand it any more. It seems that there is no one in emergency rooms or public clinics who has the slightest idea of what chronic fatigue syndrome is.

What could be more stressful than this?

*O* Continuing Misstatements by CDC to Public, by Mary Schweitzer

CDC spokespersons appear to believe that an apology for "accounting errors" is sufficient to close the books on the behavior of the agency towards the disease Chronic Fatigue Syndrome (CFS) and its victims. Nothing could be further from the truth. There are numerous discrepancies between information that has been provided by CDC at public meetings of the CFSCC (Chronic Fatigue Syndrome Coordinating Committee of the Department of Health and Human Services), and information that has been given Congress, the media, and the nation's Executive. I wish to highlight three major examples to demonstrate the depth of remaining problems within CDC with regard to appropriate attention to a disease CDC has acknowledged to be "a significant health threat to American women [1998]," and "one of the top five priorites for CDC with regard to new and reemerging diseases [1995]."

The True Costs of Public Apathy Towards Chronic Fatigue Syndrome (CFIDS) by Mary Schweitzer

Review of Elaine Showalter's Hystories by Mary Schweitzer

The reader searching for a summary of the literature on the disease syndrome CFS will be quickly disappointed, however. There is none, not in the text, not in the footnotes, not even in an appendix. Quotes were lifted seemingly at random from a few existing trade books on the subject, articles in such sources as "USA Today," "The Independent," "McCall's," and "Newsweek," and a single symposium held in London in May, 1992 (p. 130). The lone exception to this pattern came in frequent references to Showalter's London mentor, psychiatrist Simon Wessely. While including mention of Wessely's publications, however, she omitted all mention of existing published works in scholarly journals disputing Wessely's thesis.

*O* Dealing with a flawed Social Security Disability system: Guilty until proven innocent by Mary Schweitzer

The Social Security Disability Insurance system, which is supposed to protect workers from suddenly losing all sources of income with an unexpected disability, is seriously flawed and becoming more so.

There's a widespread national myth that people are "faking it". I understand that Connecticut spent over a million dollars to unroot all those fakers in their system, and only found 6. Real cost efficient.

You would think those economists who like to argue that it isn't worth the cost to eradicate that least little bit of pollution would also maybe occasionally argue that it isn't worth the cost (both human and bureaucratic) to be so fixated on that last cheater somewhere that (a) the system spends more than it saves by finding them; and (b) real people with real disabilities, and their real families, suffer.

Be that as it may, the system is set up to be ridiculously suspicious, and makes you prove that disability.

WE ARE ASSUMED GUILTY AND MUST PROVE OURSELVES INNOCENT.

CFIDS as a disease "for women" by Mary Schweitzer

One of the major problems with getting attention from the medical establishment for our disease is that it is a "female" disease. Not in the sense that more women get it than men, although 70 percent of victims are female.  Rather, it is a disease that fits the attributes associated with "femaleness" in a gender-dichotomized intellectual framework. Which dooms our disease to disrespect, lack of interest, and even mocking.

Change the Name: Abandon "CFS" and Return to the name "M.E." [presented to the AACFS conference in Boston, October 1998] by Mary Schweitzer

Continuing to ask researchers who have already published papers with the term "CFS" in it is whether they want to change the name is counterproductive and unnecessary: the people of the United States of America, by way of their elected representatives in Congress, have communicated to the DHHS and the CFSCC that they would like the name changed. The obvious reasons include the failure of the CDC to convince the public that CFS is not merely "feeling tired all the time, complaining a lot about it, and latching on to the latest fad by saying that's what you have," (which is the vernacular translation of the words "chronic fatigue syndrome.") Given that 98 percent of patients at the time the name was chosen were female, there is more than a hint of gender bias in the particular choice of a name, and it is not coincidental that patients find it demeaning.

Statement to CFSCC about Ampligen, November 1999 by Mary Schweitzer

I am speaking to you today as a patient with CFS/M.E. who has been taking the experimental drug Ampligen since February 4, 1999. The out-of-pocket cost to my family will be $40,000 for this year alone. But I am grateful I have had this opportunity.

Statement to the CFSCC, 29 April 1998 by Mary Schweitzer

Statement to the CFSCC, 22 October 1997 by Mary Schweitzer

Statement to the CFSCC, 29 May 1997 by Mary Schweitzer

NJCFSA Youth Education Committee Report at CFSAC by Mary Schweitzer

"Parental over-involvement" in childhood CFS by Mary Schweitzer

The whole concept of  parental "overinvolvement" is ahistorical, and stems
mostly from popular Freudian concepts that have become part of our social
culture by way of the popular media.  In particular, after World War II the
popular concept of "momism" (overinvolved mothers) was embedded throughout
western culture in films, popular magazines, and on tv -- stemming less
from hard scientific, medical or sociological research than from
assumptions in the work of popular novelists like James Joyce and Ernest
Hemingway.

Munchausen Syndrome by Proxy by Mary Schweitzer

I was just referred to a New Yorker cover story by Margaret Talbot from
last summer on Munchausen Syndrome by Proxy.  It turns out there is a
reason it is showing up all over the place -- it has suddenly been
re-discovered by psychiatrists.