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The following is what the United States Department of Health and Human Services Centers for Disease Control and Prevention has to say about CFIDS.

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Press Release
For Immediate Release
April 20, 2006 Contact: CDC Media Relations
(404)-639-3286

Genetic and Environmental Factors Impact CFS Patients
People who suffer from chronic fatigue syndrome (CFS) have a genetic make up that affects the body's ability to adapt to change, according to a series of papers released today by the Centers for Disease Control and Prevention (CDC). These papers, which analyze the most detailed and comprehensive clinical study on CFS to date, are published in the April issue of Pharmacogenomics.

Over the past year, CDC scientists have worked with experts in medicine, molecular biology, epidemiology, genomics, mathematics, engineering, and physics to analyze and interpret information gathered from 227 CFS patients. The information was gathered during a study in which volunteers spent two days in a hospital research ward. During this time, they underwent detailed clinical evaluations, measurement of sleep physiology, cognitive function, autonomic nervous system function, and extensive blood evaluations, including an assessment of the activity of 20,000 genes, in an attempt to identify factors that potentially cause or are related to CFS.

"This study demonstrates that the physiology of people with CFS is not able to adapt to the many challenges and stresses encountered throughout life, such as infection, injury and other adverse events during life," said Dr. William C Reeves, who heads CDC's CFS public health research program. "These findings are important because they will help to focus our research efforts to identify diagnostic tools and more effective treatments which ultimately could alleviate a lot of pain and suffering."

The multidisciplinary approach to this study, which has been termed C3 or the CFS Computational Challenge, was developed by the CDC's Dr. Suzanne Vernon, Molecular Epidemiology Team Leader for the CFS Research Laboratory. It is an approach that could lead to advances with other diseases and disorders. "We put together four teams of different experts and challenged them to develop ways to integrate and analyze a wide range of medical data so as to identify those things that could improve the diagnosis, treatment, or understanding of CFS," Dr. Vernon said. "There is a clear biologic basis for CFS, and knowing the molecular damage involved will help us devise effective therapeutic intervention and control strategies."

It's estimated that over one million people in the United States alone are sick with CFS. The condition takes a tremendous personal and social toll - approximately $9 billion a year to the nation and $20,000 per family. It occurs most frequently in women ages 40-60 and can be as disabling as multiple sclerosis and chronic obstructive pulmonary disease.

The CDC is the principal agency in the United States for protecting the health and safety of all Americans. CDC is promoting CFS awareness through a national media and education campaign set to kick off later this spring.

The April issue of Pharmacogenomics, published by Future Medicine, includes 14 research papers, the culmination of C3. The journal Pharmacogenomics is dedicated to the rapid publication of original research on basic pharmacogenomics research and its clinical applications. Published eight times a year, the journal covers the effects of genetic variablity on drug toxicity and efficacy, the characterization of genetic mutations relevant to drug action, and the identification of novel genomic targets for drug development.

For additional information about the CFS Computational Challenge, including a list of participants, visit www.cdc.gov/ncidod/diseases/cfs/meetings/2005_09.htm

For additional information about CFS visit www.cdc.gov/ncidod/diseases/cfs/

For a list of articles in the April issue of Pharmacogenomics visit
www.futuremedicine.com/toc/pgs/7/3

This page last updated April 20, 2006
URL: http://www.cdc.gov/od/oc/media/pressrel/r060420.htm

United States Department of Health and Human Services
Centers for Disease Control and Prevention
Office of Communication
Division of Media Relations

Chronic fatigue is a real illness, gov't says
The long-controversial diagnosis finally gets recognized
By Robert Bazell
Chief science and health correspondent
Updated: 4:37 p.m. PT Nov 2, 2006
NEW YORK - Jennie Spotilla was embarking on a successful career as a lawyer when she was struck down. "It felt like someone took a ton of bricks and just dumped it on my head," Spotilla says. "The worst flu I could possibly imagine." But it has lasted 12 years. She long ago was forced to stop working. "An average day, if it's a good day, I'm able to get up, take a shower, take care of my dog," she says. Doctors could not find a simple cause for her illness. They diagnosed it as chronic fatigue syndrome. That's been a controversial topic in medicine for decades, with some doctors insisting there is no such thing.

But now the top federal public heath agency is declaring that it is real, and that it affects more than 1 million Americans four times as many women as men. "People genuinely are suffering and there are things we can do to genuinely help them," says Dr. Julie Gerberding, who heads the Centers for Disease Control (CDC). "And we need to take this seriously as a real illness for a lot of people." Jennie Spotilla, like many sufferers, often encounters skepticism from doctors and others. "Even strangers who, if I told them I had chronic fatigue syndrome, they would think it was a joke, that I was just being lazy or making it up," she says. The new CDC effort includes Internet tools and public service announcements to teach doctors to better cope with chronic fatigue. And coping can be difficult, because while some symptoms can be treated, there is for now nothing close to a cure.
© 2006 MSNBC Interactive
URL: http://www.msnbc.msn.com/id/15535705/

© 2006 MSNBC.com

2005 - I have been completely disabled by CFIDS in combination with MPS - Myofascial Pain Syndrome now for the past nine years. The diagnoses for the MPS in combination with CFIDS was made by Dr. (deleted), Rheumatologist, Kaiser Permanente, Stockton, CA in July of 1998. These carry the ICD codes of MPS 729.1, and CFIDS 780.71. I have gone through the living hell of having had major surgery followed by six months of chemotherapy for advanced stage three colon cancer but this was a cake walk compared to the hell of CFIDS that I suffer through every day of my life!!!!

Patricia (deleted), Stockton, California

Well, I am understanding my CFIDS a bit better lately. I'm still not able to feel "good" about this twelve year experience with this illness but I am coping with it much better now then in years past. With the unreal exhaustion that is a daily reality I now know and kind of accept that there are trade offs that I am forced to make daily. Some days I skip taking a bath and just sponge off a bit so that I can use that energy to do something else I need or would like to take care of that day. CFIDS for me is pretty much like living with a half full glass of water (emergy) when a full glass is needed to function well. When the glass is empty I am then "down for the count" as they say in the sport of boxing. It still hurts to see life passing me by while I try to recharge the old batteries for another go at some activity. I accept that now, at least much better then in the previous twelve years of living with this illness. Not being able to commit to any activities that require adhearing to a schedule is still my primary heartache right now. It means more then just being side-lined from this game of life but more often people have simply tossed me out of the game entirely and moved on with their own lives. I'm still here. I still have worth. I am a survivor and need to be an active part of this world and to feel that I am valued as a part of our global family. I have been left alone to needlessly suffer with a few unmet needs simply because I am forced to survive with this illness. I am so very thankful for what I have been able to accomplish on my better days. But the better days are just as unpredictable as the days of severe symptoms making it where I am not able to live by any regularly scheduled activities. I am learning to cope with this better now then in the past. My strong faith in God has kept me going.

Patricia

Those of us in Alaska who suffer with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) share a special sense of loss in the recent death of Judith Curren. Her death became the focus of nationwide media attention because Dr. Jack Kevorkian reportedly assisted with her suicide. But it is not the doctor's notoriety that drew us to Judith Curren's story. What hit home for us was the news that Judith was a fellow sufferer of the never-ending pain and debilitation of CFIDS.

CFIDS is a serious and complex illness characterized by incapacitating fatigue, neurological problems which are consistent with an organic brain disorder (often accompanied by brain lesions), severe impairment of the immune system, and many other debilitating symptoms. Many people in the early stages describe CFIDS as the "flu that never went away," complaining of profound fatigue, sore throat, swollen lymph glands, irritable bowel, inability to sleep and concentrate, balance problems, severe muscle pain, headaches, numbness and tingling, intolerance to light, and changes in body temperature. A severe disruption in ability to function.

This disease attacks both adults and children. It often comes without warning, leaving its victims alive, but robbing them of almost everything else. Careers, creativity, education, goals, relationships, energy, income and passion are all swept away in a gray flood of debilitating symptoms. Family relationships and finances are stretched beyond the limit in a struggle to restore the victim's health. And, if all that weren't bad enough, CFIDS victims are often misdiagnosed by the physicians they go to for help!!!

Unfortunately, many doctors persist in the false belief that CFIDS is an emotional rather than a physiological disorder. Yet the Center for Disease Control (CDC) has placed CFIDS on its list of Priority-1 New and Re-emerging Drug Resistant Infectious Diseases. An infectious disease is not an emotional disorder!

Not only are many CFIDS victims misdiagnosed, but their illness is often misunderstood by family and friends. As a result, many suffer needlessly in isolation. The profound tragedy of Judith Curren's case was her years of severe pain and suffering under the physical oppression of CFIDS.

CFIDS is a silent epidemic. The average person has never heard of it. Yet the current rate of infection in the U.S. population is estimated to be 300 cases per 100,000 people. By comparison, the polio outbreak of the 1950s was considered to be a dangerous epidemic with an infection rate of only 20 cases per 100,000! So far there is no cure for CFIDS.

Wake up, Alaska! CFIDS is a real disease attacking real people. And it is no respecter of Alaskans. It is a silent, stalking monster that has victimized hundreds of people right here in our community, and the numbers are growing. You, your child, a friend or a loved one, could be next. Unlike HIV and AIDS, medical science has yet to unravel the mystery of how CFIDS is transmitted. It is time to pull the cloak of silence off this beast. Alaskans should insist that the medical community and government health authorities acknowledge CFIDS as a real physiological illness, and get serious in learning about it and properly diagnosing and treating patients with it.

CFIDS patients and their families in Alaska need to know that they are not alone and that there is help and hope. The CFIDS Network of Alaska is local organization that is getting the word out. The network serves as a clearinghouse for CFIDS related information. In addition the group holds monthly meetings supporting awareness, education and current research. We encourage CFIDS victims and their families to attend. The CFIDS Network of Alaska can be reached by calling: (907) 243-5800 or (907) 344-5396. If all of us work together, we can end the CFIDS nightmare.

© Kathleen Houghton, Director, CFIDS Network of Alaska, 1996 gandk@alaska.net

With CFIDS it is redundant to argue about which comes first: assault to the human organism or psychological response to trauma. Mind, body, neurochemistry and the human spirit are inextricable.

It must be stressed that an individual in crisis, including the trauma of catastrophic illness, may mimic the characteristics of a variety of psychiatric disorders. Once past the crisis phase, especially where basic survival issues are concerned, many "psychological" concerns will dissipate.

When a person with CFIDS (PWC) seeks psychological assistance, she or he must be assessed for potential crisis intervention. Specific issues include: 1) the collapse of a personal denial system which, heretofore, would not accommodate the illness; 2) inaccurate assessment and inappropriate treatment by physicians (may include patronizing or overt emotional abuse); 3) lack of emotional support from family, friends and persons in the workplace; and 4) legitimate fears regarding career, financial depletion and possible loss of health insurance.

The mental health professional must be educated to appreciate the devastation that this illness wreaks. Much of the panic, anxiety and depression are consequent to multiple personal losses and the unreliability of physical and mental capacities.

Children and adolescents with CFIDS suffer the loss of important psychosocial developmental skills and fall behind in their studies. Women and men of all ages ponder whether or not to have children and parents suffer remorse because they cannot adequately meet the needs of their children.

Many losses, such as an intense, fast-track career and strenuous athletic pursuits, may be permanent. Some PWCs previously enjoyed a life full of diverse and varied activities. Some PWCs have a compulsive nature that worked for them in our achievement-oriented society until they collapsed. Most PWCs will have to adjust to a dramatic change in lifestyle, including a downward spiral in finances and a future filled with uncertainty.

Education about and validation of the illness is important to PWCs. Many can address their issues reasonably in the context of therapy and their personal lives once they understand what they are dealing with. Paying close attention to what the body says and respecting its needs are part of the repertoire of skills needed to cope with the illness effectively.

Contrary to popular belief (which insinuates hypochondriasis), PWCs have tended to repress or deny their bodies' limitations until illness resulted in collapse. CFIDS challenges and contradicts much of today's popular ideas about health; CFIDS research will eventuate new medical models that supersede our present bimodal model.

IT CANNOT BE OVERSTATED that the complications of CFIDS may lead to suicide. For some, the pain and suffering is beyond endurance. Physicians may not provide adequate pain control or the PWC may not have financial resources to obtain medication that could modulate the illness symptoms.

Lack of social support systems may be a second major factor in suicide. The PWC may legitimately feel misunderstood and abandoned by society. Love can be the tie that binds us to the living. With lack of love, the soul can shrivel. With lack of dignity and respect the will-to-live may falter. We humans are communal creatures. PWCs may feel least loveable when love and reassurance are needed the most.

A third potential precursor to suicide may be pride. Not all previously capable and independent individuals are able to span the emotional leap to humility and grace required of one dependent upon others for assistance.

Finally, total exhaustion of basic survival resources may precipitate a suicide attempt. "I wouldn't survive on the street" and "I refuse to be a bag lady" are phrases I have repeatedly heard. These comments represent legitimate fears regarding the loss of housing and medical care, which our society has yet to address.

Every PWC is forced to grapple with existential concerns such as mortality, illness, pain and suffering, his or her place in the universe, and the need to make meaning of the human condition. Existential emotions include despair, loneliness, grief, depression and helplessness in the face of the unknown. Some view this illness catastrophe as a force-fed introduction to a more artistic, contemplative and spiritual life. All individuals devastated by CFIDS are challenged to develop what I call "a new way of living."

Like the mythical Phoenix, we are continually consumed in the flame (of our illness) and reborn from the ashes (of our remissions). And like Job 14:7 so aptly states, "There is hope for a tree that has been cut down; it can come back to life and sprout." (Good News Bible: Today's English Version) It is testament to the human spirit that so many courageous PWCs successfully let go of the old and open themselves to a creatively meaningful, alternative lifestyle.

© Jonna Lannert, PhD, 1995

Originally published in Summer 1995 by:
The CFIDS Association of America, Inc.
PO Box 220398
Charlotte, NC 28222-0398
1-800-442-3437

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 dog--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.

I loved my work. As I loved skiing, and long walks, and dancing. But--my beloved research just sits there, in pretty much the state it was nearly two years ago. I have the memory or comprehension problems others have mentioned. I have real trouble reading anything serious and retaining what was on the previous page. Yes, you can take notes, but that also is exhausting. Writing should require nothing except being here at home with access to the computer. I can pull up the UD library holdings and ask my husband to bring me home anything I need for research. But I can't do it. I want to. I try. Can't do it.

I can't drive. I get too confused. My sense of space and distance are bad, and I can't always recall the right sequence to do something as simple as take the seatbelt off and open the car door before trying to exit!

(Oh, example of bad brainfog day trying to read: I can stare at the comics page for a half hour trying to remember which ones I've read and which ones I haven't!)

I have days when it takes too much effort to focus on the printed page. The newspaper feels too heavy to hold. One warning sign is that my eyeballs start to feel like someone is unscrewing them. On those days, I lie in bed sitting up if I can, but sometimes I can't even do that, and I lie on my side, just watching TV or listening to the radio, and drifting.

I went to a professional history seminar last summer (someone drove me and we were very careful about things like stairs or having to walk any distance). I frightened myself because when I would try to take notes while someone was talking (to make a response later), if the person listed, say, three things, I would be writing the first, and I couldn't retain two and three long enough to get them down! That has never happened to me before. Something as simple as giving an introduction--nothing so easy, right? Get a copy of the person's vita, and just talk around the vita. Maybe even tell a few jokes. I couldn't do it. I couldn't remember how to make a sentence around a person's name. I couldn't remember how you "sign off," how you turn to the presenter and let them speak.

And during the three days at a conference in Chicago, where I was very careful to rest in the hotel room for most of the day (I ordered room service and did not go out with everybody else, and I was careful not to stand when I tried to talk), I did okay, disguising a lot of brain fog--but by the time I left, my knees had quit working: I collapsed getting into the limo back to the airport.

When I come back from one of these conferences (I get to go maybe once every three months), the next day is really hard. It's back to invalid prison. But at least there's Internet.

When did I get sick? Sometimes between fall 1989 and fall 1990, I think. Emergency gallbladder surgey fall 1989, giardia (a parasite) spring 1990, mono fall 1990. And then bronchitis, from 4 to 8 months out of the year, from late 1991 through fall 1994.

I have what is called slow onset, which means that at first I was really sick, then went through periods when I would be well enough to work out aerobically a half hour a day, and do nautilus three times a week. To ski. But then I would get sick, and once I got sick, I would stay sick a long time. But I kept going.

I have had problems with bronchitis all my life, but they usually could be contained within a two-week period. That is, I would start out with the uckey cold feeling (scratchy throat etc.), then in a few days it would progress to the Suzanne Pleshette voice and a barking cough. Oddly, when I got the cough, I usually felt better. But I always knew I would be well by Day 10 or so.

Then, starting in 1991-92, I would get the usual cold/bronchitis, but it would not end! It would go on for weeks, and finally, months. The doctors thought it was sinusitis, and I had a deviated septum fixed (boy, that was no fun), but I still got sick. When I had the last bout, my doctor sent me to a lung specialist who said, "No, it's not in your lungs--it's just draining down from your sinuses. You have an infected sinus." So I went to the ENT doc. And he said,"No, it's not sinusitis. That's bronchitis."

Go figure.

But this last time (beginning Labor Day 1994), I got rid of most of the outward symptoms, but I was exhausted. So we began to think walking pneumonia. That lasted into mid-October. I went to a conference in Cincinnati, convinced I had pneumonia. Then, the next weekend, I went to St. Louis with my husband for a conference for him (and I gave a talk at Wash U), and I felt awful, but I was trying to keep cheerful. We even went to a Billy Joel concert. We got back Monday. Tuesday night my dear mother-in-law had a sudden heart attack and died at home. Her neighbors discovered her at midnight and called us. I didn't sleep that night. Hardly slept until the funeral on Friday. Then the next Monday, I had a ton of grading to do. I drove up to Villanova, sat down in my office with a stack of bluebooks to read, and ... I couldn't do it! I couldn't stay on task. I couldn't focus on the words. And then, for the first time, I had what I call the "Pause."

I wanted to stand up and walk to the restroom, and I couldn't. Just sat there thinking that I wanted to stand up.

Same kind of thing happened the next day, with me arriving late to classes but somehow making it through. And the next day. And the next. One day one of my colleagues found me on the floor of my office, crying because I didn't know how I was going to walk to the classroom building and teach three classes in a row. Somehow I made it. I don't know how.

I live an hour away from Villanova. I don't know how I drove home. I do remember crying on the interstate. I used to love to drive, to play tapes--I had a little Prelude that cornered nicely. But now I was crying because I was afraid to change lanes. I would look to see if someone was there, then I couldn't remember.

When I would get home, I would sit down in a chair, and my husband would say, "Let's go out and get something to eat." And I would say, "I can't." And after maybe fifteen minutes or so in the chair, I would manage to leave my coat behind and make it upstairs to bed. And stay there for the rest of the evening, through the next day, until I had to teach again. Bob would bring me something to eat and drink, and I would stare at it a long time before I could pick it up and take a sip. Sometimes chewing took effort!

There was (is) the pain--the golfballs in your throat, the pain at the base of your neck, the pain in your eyes like they're being unscrewed. All the time, headaches, constant aching everywhere, feeling "malaise," they call it. Uchy I call it. But that I could have lived with. The confusion, the weakness--that was something else again.

I always took pride in my lectures, but I couldn't stay coherent. I kept losing my place. I misspoke. A lot. That's not funny if you're taking notes. I got confused when students tried to talk to me after class. I couldn't grade their papers, but a former student heard about what was happening and came back to help me out. The last half of fall semester, 1994, was living hell. For me and probably for the students.

It just reached a point where ... it stopped. I couldn't walk. I couldn't talk. I could not go on. And we went from doctor to doctor, only to be told that there's nothing wrong with me; the tests were normal.

It was a student who came to me and said, "I know what you have." And she was right. I was formally diagnosed at the end of December, 1994. I'm seeing a good doctor, taking meds, but I'm not much improved since October 1994, if any. The family thinks sometimes I'm worse. It's weird--you look at something across the street, and everybody else can go, but you can't. I'm afraid that I have the bad prognosis-- slow onset, and I went on until I totally collapsed. It will be a while before I improve.

All my life, I had kept going. I had immense willpower. So when the doctors said to keep going through the giardia, through the mono, through the bronchitis, I did.

I wonder, would I be as disabled today if they had let me rest earlier? If they had taken my illnesses earlier? If they knew the other signs of slow-onset? (I was alcohol intolerant, losing my balance, my handrwiting was getting awful, light sensitive, noise sensitive...)

I loved my life. My research was just getting noticed; I was getting asked to speak places; it was exciting. I loved to ski. We would go up to Vermont for a weekend of skiing maybe 6 or 8 times a year. In the summer, went walking on the beach, in the mountains. I used to have what my family jokingly called a "mountaineer's lope"--long strides, fast pace. Loved to go walking in cities, old districts. The life of an academic is great--if I was really into a research project, I burned on that project. But if I wasn't? Heck, you can just take off and go to the beach. Or Vermont. My husband and I used to go to professional conferences with each other. I could give a seminar at a local university and get my air fare paid, and then we would free ride on his hotel room and his air fare would be paid for the conference. Or the other way around. The two years before I got sick we had done this and been to Denver, San Francisco, Tucson, Key West, Hilton Head, New Orleans, Chicago--just lots of fun, and basically for free! Or, for the price of giving a seminar about my own research--heck, I'd probably have paid to get to do that. I loved my work.

I wasn't pressured. I was alive. I would give anything to have any part of that life back. And my job was a part of that life. I carried my enthusiasm for history into the classroom. The students could say really interesting things. I had developed a course in American women's history that was my absolute favorite, and had been given the go-ahead to offer it more than once a year, and develop other courses around it. I was so excited about the prospect. I was teaching a course that I could tell had a profound influence on my students and their lives--what a rush!

So. I wonder: if I had been allowed to rest back when I had giardia or mono ; if I had not pushed through the bronchitis; would I have become this severely ill? If there had been respect for my illnesses before, would it have come to this?

And I am fortunate. (No, the long-term disability insurer is still contesting my claim. They want to say it is depression and anxiety, which would then cut off payments after two years. We have to hire a lawyer.)

But I have a caring family, and they are fun to watch. And my husband does have a decent income. For once I think I'm grateful for the gender gap in wages.

But what if I had to support myself with this? What if I had this, and public health or the HMO doctor didn't "believe in" CFIDS? If I had kids, we would be on welfare. If I had no kids, I would be living with my brother or sister or parents. If I had no relatives to take me in, I would be on a sidewalk or in a mental hospital. Or dead.

If I had a physical job like factory work and tried to keep going, I would have killed myself by now because of my clumsiness, falling, confusion. I can't think of a thing I could be paid to do right now, and do well enough that I wouldn't get fired! As it is, I can't do the things I used to do when I was working that kept the home fires going Last fall, I was getting better, and I was so proud that I could drive a few blocks to the Acme, take the electric scooter around and buy groceries, fix dinner, clean up, and put a couple of loads in the laundry and put them away. During the blizzard first week of January, I even baked bread! But.... I can't do that once again. It all quit the second week of January. I have to get family members to leave stuff around that I can eat without cooking. If they don't, well, I eat saltines.

I remember my Mom telling me about men and women in the old days who worked until their "health was broken," she called it. (She grew up in a coalmining town in Harlan Co., KY.) I wonder if they had what I have.

I haven't even begun to touch on the grief of losing the life you loved to this disease. Truthfully, with the help of Internet, and friends met on Internet, I am coping well with the illness. I know I will never ski again. I know I will never be the hot-shot researcher teaching and publishing and doing it all at the same time. But I will be happy if I can write again. (Serious writing, with research and editing.)

And I want to walk on the beach at sunset. And dance.

© Mary Schweitzer, 1996
schweit2@ix.netcom.com

"AIDS is a death sentence. CFS is a life sentence."

It's almost a guarantee that if you don't have a friend or relative with CFS, you don't understand it - not really. And if you do know someone with CFS, there are certain things they desperately need you to know.

The fact is that CFS is a mysterious, scary, and miserable illness with no known cause and no cure. It strikes people of all ages and can turn them into invalids.

It's frightening. It's hard to see your loved one in pain and feeling rotten. PWCs (people with CFS) can be a lot of trouble. But a CFS sufferer's life may depend on your really understanding their illness. You see, suicide is one of the leading causes of death of people with CFS. Partly because of the nightmare quality of the illness itself, and partly because of the misinformation and misunderstanding that are so rampant.

"I got to the point a few years ago when I got tired of trying to explain to folks about the CFS. So I started asking them a couple of simple questions instead:

"Have you heard about MS and what it does to a person? Most folks say yes...

"Do you know what polio is? Atypical Polio? Most older folks say yes...

"Do you know what Alzheimers is? Most folks say yes...

"I say then 'Good... now cross the three and add to it a malfunctioning immune system and you might have some idea of how I feel on my average day.'" - Phyllis Griffiths

What is CFIDS? Much More than Fatigue

1) Clinically evaluated, unexplained, persistent, or relapsing fatigue for at least six months that is: Of new or definite onset; not the result of ongoing exertion; not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities.

2) Four or more of the following concurrent symptoms on a persistent or recurrent basis during six or more consecutive months of illness, none of which may predate the fatigue: Self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities; sore throat; tender cervical or axillary lymph nodes; muscle pain; multi-joint pain without joint swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and postexertional malaise lasting more than 24 hours. Centers for Disease Control, 1994

Besides what's on the official list, many PWCs experience dizziness, ringing ears, eye pain, chemical sensitivities, light and sound sensitivity, gastrointestinal problems, frequent opportunistic infections, seizure disorder, fever, and much more. Often they describe it as feeling like they "have the flu, only it never goes away."

There are three core issues PWCs have to contend with. The first is the fact that their illness is often not taken seriously, even by physicians and other medical professionals. The second is the unpredictability of it, and the third is the isolation and dependency which their condition causes.

Disbelief and Invalidation

"You look fine to me."

People sometimes think PWCs are lazy or depressed, and if they pushed themselves a bit they could do anything the rest of us do. After all, they don't look sick. Fact is, CFS is a medical illness, not a psychiatric one, and all the wishing - or pushing - in the world doesn't help. It is not "all in their heads," as is so often implied.

"Hey, you look good. You must be better."

People think because PWCs are out and about, they must be better. Listen to what one PWC would really have liked to say to an acquaintance who said that to her at a baseball game.

I look OK because I don't do anything. I don't do anything because I'm not better. On the days when I really feel bad I don't go out and you don't see me. If I tried to do anything I would be worse, but then you wouldn't see me because I would be stuck in bed. Thanks for asking, though.

"I get tired, too." or "I've had that, too."

It's mainly people saying, "I've had that, too," which is devastating...as if I hadn't lived for 53 years before getting this, as if I didn't know the difference between what I have now and what I was like before.

The unspoken message here is: So why is it such a big deal with you? You're making a mountain out of a molehill. It couldn't possibly be as bad as you're suggesting. You get tired. So rest more.

PWCs tend to get angry because the term "chronic fatigue," which has many causes and many cures, is often used synonymously with "Chronic Fatigue Syndrome," a very different thing from mere "fatigue." Many feel the very name of their illness is at the root of much of the public's misunderstanding.

"Have you tried....(fill in treatment of choice)?"

People - even fellow PWCs - sometimes suggest any and every alternative medical treatment in existence and manage to imply, often without intending to, that because PWCs aren't taking the drug or mineral or vitamin supplement de jour, that it's their own fault they're sick.

One PWC has essentially lost a friend of twenty-five years because of this issue. The friend just doesn't get it. The last thing a PWC needs is to feel blamed for being ill.

Unpredictability

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. - Mary Schweitzer

I've put a lot of effort into becoming me, and now I'm not. It's rather disconcerting. - Michael Kimmitt

CFS is a very unpredictable illness. Symptoms change over time and one week's major problems may be non-issues by the next month. PWCs often have their hands full just dealing with how they feel and how to cope, leaving them with little reserve to deal with relationship problems.

[It's] the constant shifting of symptoms, the inability to adjust to an illness that changes so often - presenting the PWC with yet another problem. - Eva Shaderowfsky

"Can you be there next Thursday at 8?"

PWCs often can't predict even hours or minutes ahead of time how they'll feel, or if they'll be up for a given event. Sometimes CFS means that things take longer than usual. It's easy to take it personally when PWCs can't be definite about plans or have to say no outright because they know they can't manage the energy expenditure, but remember, can't means "can't," not necessarily "doesn't want to."

"I know you'll be well enough to see me."

Maybe, maybe not. Learn to swallow your pride and take "no" for an answer graciously. Don't assume you'll automatically be an exception.

"How are you feeling?"

PWCs say that people don't know how to respond when you tell them you feel awful. Maybe that's why people sometimes say, "Oh, bummer," and change the subject. PWCs' other alternative is to lie, and say they're fine. One PWC, who has tried and discarded that tactic, says it's simply too isolating. If your PWC friend brings it up or seems to want to talk about it, don't change the subject. Ask about them. Sometimes they won't want to discuss how they feel, though. Follow their lead.

"Well, gee, you don't have to get angry!"

CFS leads to unpredictable emotional ups and downs, too. PWCs sometimes get angry for what seems like no reason. Most PWCs realize how difficult they can be to live with. Avoid trivializing their concerns as "just part of the illness." It's hard to be nice when you're in pain and feeling awful.

"Don't you remember?"

Your mind will be in a constant 'fogged' state, ... and your eyes will have a noticeable 'glazed over/drugged out' look. You will find it most difficult to pay attention, concentrate, or even process the simplest of thoughts. Making change from a dollar may well be beyond your ability now. - Kathleen Houghton

Cognitive problems, what PWCs call brain fog, come and go. Short term memory is sometimes almost nonexistent. Be patient and gentle if they can't remember something that seems patently obvious to you. CFS can lower one's IQ by as much as 40 points. One woman describes how she used to be able to finish the New York Times daily crossword puzzle in ten minutes. Now she sometimes ends up with huge blank spaces, which she can't fill no matter now often she comes back to it.

Tongue only partly in cheek, one PWC says this is how she'd like to respond sometimes:

Warning. Do not taunt the animal. The right side of my head is about to explode. Someone is trying to unscrew both of my eyeballs. I wish I could find out who whopped me in the back of the head with that baseball bat. Everything else just ACHES. If you ask me something I am probably just going to stare at you because I don't remember how to answer a question. Be gentle. Thank you.

Isolation and Dependency

My brain is constantly in a fog and I can't seem to concentrate on typing or reading. I have to do everything twice. I can't sleep. And when I do sleep, I wake up still tired. I am contemplating taking a medical leave of absence from work. I'm slowly fading away. Fading out of the business and social world. Fading out of usefulness. Wondering everyday what I'm going to feel like tomorrow. And constantly wondering where I'll be a year from now. - Anonymous

Perhaps it's because PWCs have to say no to invitations so often, or maybe because friends fear contagion or think PWCs are mentally ill. Maybe the old friends just can't accept the "new" person the PWC has become. For whatever reason, they're no longer "acceptable," and PWCs lose friends in droves. Isolation is a big issue for PWCs, many of whom are housebound.

Call up friends or family with CFS, or visit, or drop them a card in the mail - whatever they're feeling up to - so they know you haven't forgotten them.

"Is this a good time to visit?"

At the same time, too much attention is difficult, too. Neurological changes make mere paying attention exhausting for them. Sometimes PWCs are not even up to long distance phone calls with distant friends and relatives. At times like that, chat via email, and they'll let you know when they are ready to talk.

"Can I catch CFS from you?"

The contagion issue is a difficult one, too, inasmuch as the cause of CFS is not known. A PWC told about how a potential girlfriend dumped him when he told her he had CFS. "That certainly sounds contagious," she said, quickly disappearing. Another PWC's (ex?)friends think she's mentally ill. The consensus is that she's "lost it."

"Can I pick up something for you at the store?"

Dependency is difficult for someone who has been independent. Let PWCs to do what they can, but don't hesitate to offer to help without being asked first - and then follow through. Sometimes it's hard to ask for - or accept - help.

At that time, I didn't even have the strength to cut vegetables, much less go shopping. And our two-hour hikes, well, we hadn't been on a walk of any kind for six weeks. He was doing all the cleaning, everything he usually did plus my share. He fed me, did the laundry, sat with me for hours holding my hand or stroking my hair as I lay on the couch, too exhausted to move. (I'm going to die. I know everyone does. But I'm going to die of this. I know it.) - Eva Shaderowfsky

CFS is a difficult illness. Difficult for the sufferer, of course, but also difficult for those of us who care. Don't be afraid to talk about how the illness impacts your relationship. Ask them what you can do differently, and then do it. Support from family and friends can literally be lifesaving for PWCs who occasionally feel that suicide is the only way out of the nightmare world in which they live. Just "being there" when they need a friend sometimes makes all the difference in the world.

Gentle, loving, sincere hugs are always needed and appreciated. Say, "I love you and I'm here for you anytime you need me." - Sandra Ponce

© Sue Boettcher, suebd@wwcoco.com 1998

My body began falling apart a decade ago, and I had to quit even part-time paid work in 1991. Many joints, muscles and tendons hurt, so I am never comfortable sitting in a "standard" chair. I'm dizzy, and tend to fall over. My body can't tolerate exercise or repetitive motion: a stroll around the block requires an hour's rest while leafing through a magazine puts my hands out of commission for half a day. My brain, thankfully, developed a rapid-forgetting technique so I'm not overwhelmed by chronic pain. Unfortunately, this also means I may forget my topic in mid- sentence. After years of doctors saying it was all in my head, they now call it "fibromyalgia" or "chronic fatigue syndrome."

And so I've been led to change many aspects of my daily life. The first big change was denial, guilt, and self-doubt. I was sure that, if I only developed a more positive mental attitude, I'd get better. Now, I'm realizing this negative perspective results from our society's attitudes. In feminist consciousness-raising groups, I learned that women share guilt, self-blame, and learned helplessness because we share growing up in a society where female is not "normal."

I've come to understand that the American way of health adds to the pain of illness and disability: that "disability" is, like "femininity," a notion compounded of biology and society. Gallons of ink have been used to debate the correct terminology--I call myself "disabled" or "sick." (Euphemisms like "differently abled" or "physically challenged" sugar coat my experience.) But it is not just a word game, because it is hard to put on a filthy, tattered coat when you can hide your shivering.

I denied I was disabled because I did not want to accept the stereotypes that ride along with the label--and who would want to call themselves incompetent, worthless, imprisoned. It seemed easier to pass as "normal," even if that meant never being comfortable with who I was. At the personal level, any change, even a positive one, is hard to accept. Many of the changes associated with disability and chronic illness are no fun at all. In my case, I didn't want to develop a new body image, to feel pain, to relearn certain activities, to modify my pace. All these reluctances add up to a powerful engine of personal denial.

In addition to these interior messages, there are social ones as well. The most basic is: if you're sick, get better or die. If you're disabled or sick, it's your job to "overcome" it. The American individualist ideal is relying on oneself. In the popular imagination, disability and illness are defined as a struggle. Totally invisible in the past, the few media images of disability we now see are the "overachievers"--almost all male. We know that "superwoman" is a convenient myth that keeps so busy juggling work and family, we don't have time to analyze where society can be changed. Disability rights activists speak of the parallel burden of the "supercrip:" rolls in a marathon, dresses like Geena Davis, works 50 hours a week, and never gets nasty when discriminated against. Gracefully accepting changes in one's body is, well, weak.

However, some of us don't have that capacity to live at the edge of our limits. CFS has robbed me of precisely the ability to spring back. Our "be all you can be" society gives greater approval to the walking fool than the rolling sage. My denial made me a walking fool: it prevented my taking advantage of useful tools and services that in fact minimize the functional limitation of disability.

Thanks to years of activist effort, as well as smart politicking by legislators with personal experience of disability, America is becoming easier to use from a wheelchair. I now celebrate July 17, 1993 as my "independence day," because that's when I got my power wheelchair. It makes such a difference in my life! I now have a custom-fit, comfortable place to sit. I can go to restaurants or movie theaters without worrying about what sort of chair I'll find there. Snug and relaxed, I have more energy to bring to daily tasks. The less effort I spend walking, the more energy I have to think. I can again accompany my husband and dog on long walks around the neighborhood. Now I can travel the ten blocks to the bus stop, roll on the lift, and travel independently. I can go back to my favorite place on earth--the library--easily transporting pounds of books in the bag that hangs on back.

Perhaps the most interesting change is how others see me: I have a visible disability, and strangers more easily accept that I may not do things just like they do. Of course, some folks see the wheelchair as confining me, rendering me incapable of speech, independent thought, or any place in society. But my chair no more confines me than my eyeglasses obstruct my vision. I hope and work for the day when everyone who needs this remarkably useful tool can have it.


Jesse Kaysen loves every sort of language and code, from calligraphy to typesetting, ASL to ESL, BASIC to PostScript.
She's a woman-identified feminist who sleeps a lot and rides the bus.
© Jesse Kaysen, jesse_the_k@hotmail.com 1998

I feel a fraud. I look like an average twenty-something, but I can't work, drive or party, and have no formal qualifications... yet. It's as if I'm still in my mid-teens, which is when my life changed radically, slowly coming to a standstill over the course of a year. I was diagnosed with an illness called M.E. The letters stand for myalgic encephalomyelitis (don't try this without a stunt double for your tongue!)...It's also called CFIDS--Chronic Fatigue and Immune Dysfunction Syndrome.

This awful diagnosis meant that I had to leave school at the age of fifteen and be mainly bed-bound for years. Now that sounds melodramatic because I am so much improved, and eleven years later M.E. is just something I live with. And I HAVE improved. I learned how to cope the hard way, now I'd like to help others fast-track..

M.E. is still pretty much a mystery; one filled with controversy and prejudice. Research helps, though. At least we've progressed from, 'it doesn't exist', through, 'it's a "type" of depression', to M.E. being a disease with unique diagnostic criteria recognized by the World Health Organization. It is now the focus of international researchers and medical conferences.

When you've got it, you've got it. Nothing changes if doctors try to sweep you under the carpet, you just become an irritating lump! I didn't understand why my body wasn't functioning effortlessly anymore, why my muscles exhausted so quickly and recharged so badly, like an old battery; why I slept so much, why my head ached constantly, why my guts would go ballistic with nausea and dizziness gatecrashing daily for no apparent reason.

It was frightening, not knowing, especially since none of the doctors could diagnose anything then and I was allergic to all their drugs. I'd never felt lonelier, but I battled on..how could I be ill, why should anyone believe how wretched I was feeling when there was nothing to see?

Of course the ideal is an early diagnosis and immediate convalescence. Not knowing any better, I pushed myself hard when I first got sick to completely disprove the accusation of 'malinger'. In hindsight I SHOULD have been *lazy*! The recommendation of M.E. experts is to rest well in the acute stage of the illness because rest seems to promote a quicker, fuller recovery.

At school I had to leave lessons, miss them entirely, or pass them dozing with my head on my arms - facts and figures whooshed over my head, I couldn't concentrate. A humiliating and maddening problem since I was constantly behind...and in an exam year!

I felt more and more disconnected from people and place. Eventually, I could hardly eat or get out of bed. It was then that my mother found a magazine article about M.E. and the controversy over it. Once I had read the list of baffling symptoms it was like a Damascene conversion. My huge distress vanished with the last full-stop and when my mother asked, "what do you think?" I handed it back, saying, "That's me." Let the world fight it out, I thought, I've got a label; the weirdness took a recognizable form, I wasn't going mad. The relief of knowing helps immensely. I could relax, stop fighting, give myself permission to be ill and therefore get well. Denial, after all, was making me no better.

My friends at school were kind and concerned, but because nothing could be explained to them and there was nothing practical they could do it was easy for them to feel perplexed or embarrassed. It felt to me in my abyss as if I didn't exist at all. I wanted to be hugged. That basic.

Fortunately, teachers and most medics were friends to me. At fourteen years old I considered myself strong and independent, in reality I was vulnerable; I did as I was told because I was lost, so I'm grateful to have rarely been at the mercy of disbelieving professionals.

It became harder to keep contact with old friends as they moved on. Gradually I realized that a major part of friendship was sharing experiences, what we had in common was ever distant and we couldn't fill the gap. Those who visited found it awkward, just coming to sit on the bed, talking to someone who never seemed to get well and had no news. Life races in your late teens, and I couldn't race, so it felt like I was getting left behind. Then, it hurt; now I understand that I'm just taking my time arriving.

The friends who remember to look back and wave may be few but they are the best, and I try to think of any losses as vacancies ready to be filled. I couldn't have invented a more stalwart ally than my mother; and in turn, her friends were friends to me too. I became shy of my own age-group for a while because I felt unworldly, somehow unworthy, and unwilling to show my weaknesses. The biggest boost to my confidence was regaining peers through contact with other young M.E. sufferers, some of whom have become good friends. Solidarity sees you through!! Knowing they were struggling along, grappling with the same burden, there was no need to be lonely or self-pitying - it was time to develop a black sense of humour and make the best of things.

After an official diagnoses I was left to get on with it. I spent most of my day in bed and finally learned that if I balanced rest with activity my symptoms would bother me less. A key discovery. Unfortunately, in year two, M.E. hit my head and affected my concentration, making me forget words and talk hilarious gobbledygook! I also developed a terrific sensitivity to light, requiring the Dracularesque measures of sunglasses and closed curtains....Strange but true! M.E. is like that, it doesn't rest on its laurels; new symptoms mean inventing new coping strategies --whatever it takes, goes.

The years ticked by and it became obvious that I wasn't going to be able to finish school. This was one of the worst adjustments; when I left, it was to go away to hospital, not to end a phase of my life. Usually, school is everything: your social network, your calendar, it sets your targets, and you measure your life by it. You are sure to flounder when that goes, even if it's for a short while.

Eventually I could at least read and pick up some informal studies. It was such a challenge to get anything into my porridge-like brain. My short-term memory was shot and intellectual work physically tired me, so, I paced myself and learned to value anything I could accomplish. Completing small projects or teaching myself new skills (like this voyage into cyberspace, tan-tan-tarraah!!), reassures me that I can achieve, and that my potential isn't terminally kaput!

Penny-pinching with energy means improvement, though it's never fast enough, of course. Hope is crucial, but it's sometimes tough to maintain...I lectured myself through gritted teeth that others had got through set-backs; if they could, I could, and I told myself there was sure to be a high soon.

And here I am, writing this, enjoying some totally inexplicable, surreal but fantastic progress. Moral of the story? Hang in there!

So, has all this affected me for the worse?

I could say, glibly, 'no more than I choose', but there are tender spots, things that make me deeply, deeply sad - chances I have missed out on so far, moments lost to me forever. That's a ubiquitous hazard in life, though, isn't it, and no-one is immune. While M.E. dogged me to adulthood, it also opened my eyes, taught me new values of open-mindedness, empathy, and the ability to stand alone. There have been gifts as well as robberies.

In this boat, or one like it, remember to keep positive images of yourself in your head, and comfort yourself with the thought that, ill or well, everybody has limitations. When something sad, bad, or embarrassing happens, flip the situation right over to see the funny side. If ever your smile muscles give way, smile on the inside instead. Phrase for Today: "work within your limitations, listen to your body", and may The Force be with you!!!