Other ME and CFS materials
Below is a description of trying to get reporters to accurately describe their interviews:
Have you ever experienced being misquoted by the media, and even worse, has this ever lead to stigmatizing the very organizations, groups, or individuals you have been working with? I experienced this very situation and my account is below:
One morning, I opened an email and found a message from an activist who said it was with disgust that he read an article stating among other things: “Sleepiness can turn into chronic fatigue syndrome.” Certainly, this phrase and others like it trivializes the very serious illness known as chronic fatigue syndrome. Unfortunately, the reporter in this article had been quoting me, but I had never made these types of statements when I was interviewed.
I immediately emailed my PR contact at DePaul and sought his advice. He responded by mentioning that if I thought the interview and the quotes attributed to me were totally distorted, I might request a clarification. But, he added, if it was only an incidental piece of not quite true information, I might let it slide. His sense was that it was overall a good story and that being so prominently featured in such a major publication was quite a coup, as circulation was about 3.5 million.
Reporters rarely are willing to allow us to read and edit their news stories where we are quoted before they are published. I was not sure whether they might be willing to retract part of a story or insert a correction. I next spoke with my research team members, and they urged me to confront the reporter. I took their advice and sent this note to the reporter:
“Thank you for your interview, and I am sure the piece will be widely read. As I read your recently published article on fatigue for which I was interviewed, one of my statements was used in an erroneous context. Sleep deprivation does not lead to CFS – they are different entities. I believe the statement I made was meant to show the difference between normal fatigue and CFS – it was not meant to imply that sleepiness can turn into CFS. If it is possible to publish a correction for the inaccurate statements, I would be willing to help with the changes.”
The reporter immediately responded, and in his email mentioned he was really disappointed with the changes his editor made, and then indicated that he would be happy to make the corrections. I then thanked him and asked him to remove the statement, “Sleepiness Can Turn Into Chronic Fatigue Syndrome” under the term Prevention News at the top of the article, and requested a set of other changes throughout the article. Finally, I mentioned that I was a community psychologist, and I wondered if that could be inserted in the article.
The next morning, the reporter thanked me for my politeness and patience, and mentioned that the changes would be made within the next few hours. This series of interactions highlights the importance of a supportive team who encouraged me to take a proactive stances, and how sometimes a quick intervention can result in a small win when dealing with the media. It is ironic that our research group is currently collecting data on a study involving how CFS is portrayed in the media.
The revised article is at: (Link)
National Alliance for ME’s description of our DePaul team: (Link)
Puzzling malaise: Unlocking the clues with no definitive diagnosis or treatment, physicians and their patients look to researchers for some answers to chronic fatigue syndrome
By Susan J. Landers, AMNews staff
Christine Petty, MD, a family physician in Rockford, Ill., treated a patient for an illness that lasted six years. During that time, the man, then in his 40s, became so disabled he couldn't leave his home. He took a leave of absence from his job. His wife divorced him. Although his condition ultimately improved, his life was nearly destroyed. Dr. Petty's patient had chronic fatigue syndrome, an illness that is often as devastating as it is puzzling and one for which there are more questions than answers. Estimates of those with the illness have reached 800,000 in this country alone, according to recent research. But pinpointing its exact symptoms can be as perplexing as CFS itself.
Fatigue is a common complaint. But in the case of this patient, Dr. Petty could pick up signs that his difficulties were different. This patient's fatigue was both bone-crushing and unexplained. He also complained for at least six months of a host of other ills: low-grade fever, muscle aches, sore throat and sleep problems. While there is a definition for CFS that was developed in 1994 and used by Dr. Petty in her diagnosis, most researchers and clinicians find it flawed. A new one is in the works. It is expected to be ready by 2003.
There is no definitive way to identify CFS. "It's mainly a diagnosis of exclusion," said Dr. Petty. Physicians must first rule out viral causes and cancer. So blood work and a thorough physical exam and good medical history are the first steps to take, she explained. 800,000 Americans, across all ethnic groups, suffer from chronic fatigue syndrome. The Centers for Disease Control and Prevention recommends a series of about 15 tests physicians can use to screen for CFS. They include a complete blood count, measures of total protein in blood plasma as well as glucose levels. Unusual findings in any of the tests could point to a disorder that a physician may successfully diagnose and treat. However, 90% of CFS patients will test at normal levels, according to the CDC.
Treatment concerns
After ruling out all other diseases, doctors should consider CFS. But, as with the diagnosis of the illness, there is no definitive treatment. For Dr. Petty, treatment included providing a lot of support for her patient. Sometimes antidepressants are prescribed, particularly tricyclics to help patients gain more restful sleep.
Holistic management of patients' lives can also be a central element of care, said Dr. Petty. Eating right, getting adequate rest, moderate exercise, controlling stress and maintaining social ties are important considerations, she notes. Cognitive behavioral therapy in skilled hands may also be included in treatment, according to Anthony Komaroff, MD, professor of medicine at Harvard Medical School. A commonsense clinical approach is best, said William Reeves, MD, principal investigator of CDC's chronic fatigue syndrome program.
Dr. Petty noted that she doesn't do much referring unless it's to a social worker or a massage therapist. "I don't find infectious disease specialists are particularly helpful with the diagnosis," she said. The Dept. of Health and Human Services' newly formed Chronic Fatigue Syndrome Coordinating Committee identified primary care physicians as those most likely to care for patients with chronic illnesses such as CFS. Needless to say, diagnosing and treating a complex case of CFS can consume an inordinate amount of a physician's time, an item in short supply in the current managed care era. CFS also poses a quandary in a medical climate that emphasizes a scientific basis for prevention, diagnosis and treatment.
"While it is pretty clear there are objective, biological things wrong with many patients," said Dr. Komaroff, "the problem is that none has been found to be present in every patient. So we don't yet have the two things that the average doctor and patient are looking for -- a diagnostic test that is sufficiently accurate to be useful and a proven treatment." As a result, patients with the syndrome must often endure the skepticism of family and friends and even some physicians. Patients and their advocacy groups have become vocal defenders of the physiological basis, even if unknown, of CFS. Arthur Barsky, MD, a psychiatrist at Brigham and Women's Hospital in Boston, received a rash of angry letters after he and a colleague published a study suggesting that the responses of physicians and others to the diagnosis of a controversial illness such as CFS could cause patients to exaggerate and maintain their symptoms.
Most letter-writers assumed Dr. Barksy was saying the illness was more a state of mind. But Dr. Barsky wasn't really surprised by the responses to the study published in the June 1999 issue of the Annals of Internal Medicine . "There is a great deal of heat around the status of all these syndromes," he said. "Obviously there are a lot of advocacy groups, and a lot of people feel strongly about whether they are 'real' diseases or not." And attitudes in general also seem to be changing, according to Dr. Komaroff. He said there is much less skepticism among physicians now than there was a decade ago, before research evidence began to roll in.
Nonetheless, treating patients with CFS might not be every physician's cup of tea, noted Dr. Reeves. Patients with CFS are often very articulate, they don't look sick and they have a lot of complaints, he said. Common complaints and symptoms of patients are often cognitive, so a physician may have a patient who just can't stay on track. "These are hard patients to deal with," he said. Physicians also need to be wary that they don't attribute all a patient's complaints to CFS. "Women with CFS can get breast cancer just as well as those without," Dr. Reeves said. If a diagnosis of CFS in adults is controversial, CFS in children is even more so, with many physicians and others questioning whether it exists in children and teens.
David Bell, MD, a pediatrician in Lyndonville, N.Y., is a believer. He was drawn to the issue when a cluster of about 50 cases of CFS occurred in 1985 among children in his rural area of the state, halfway between Buffalo and Rochester. CFS is a diagnosis that physicians often miss in children, he said. And this is a big problem. Dr. Bell goes about diagnosing the illness a bit differently than do many other physicians. "I disagree that you should rule out every other disease and then you're left with CFS," he said. "The pattern of fatigue and activity limitation is a little different from other illnesses that cause fatigue," Dr. Bell said. "Associated symptoms of cognitive problems, muscle and joint pain and sore throat and lymph node pain and sleep disturbances make this a unique illness."
The average age of onset was 11 to 12 among a group of children in a study published by Dr. Bell in the May, 2001, issue of Pediatrics . He reported that 80% of the children made a good recovery. Most took three to four years to recover with nine years being the longest period of recovery. But the remaining 20% of the children are still quite affected, he said. Many children are unable to go to school because of the severity of their illness, he said, and one of the most important aspects of care is to make sure their education is provided for. lthough schools are required by federal law to accommodate these children, physicians must first make a clear diagnosis of CFS, he said.
Researchers gear up
The pursuit of a cause and proper treatment for CFS is heating up with a new emphasis by HHS on research. "We are trying to reinvigorate the field now because there are so many new methods for doing genetic analyses and studying the brain," said Eleanor Hanna, PhD, a senior adviser at NIH's Office of Research on Women's Health, which is coordinating the department wide CFS initiative. A new request for research proposals is scheduled to be released shortly, Dr. Hanna said.
Research needs were mapped out during a State of the Science Conference on CFS held last fall in Arlington, Va. The event was sponsored by several of the NIH institutes and offices as well as the CDC. Participants, including a patient, a community physician and researchers, cited the need for longitudinal studies, studies designed for specific subgroups of patients and on the physiology of pain and sleep disturbances, to name only a few. Researchers are already using imaging technology to measure brain hormones and are examining the functioning of the immune system. "There is considerable evidence already that the immune system is in a state of chronic activation in many patients with CFS," Dr. Komaroff said. The CDC will soon begin a national survey to determine prevalence rates. "We will be particularly interested in ethnic minorities and will be looking at adolescents," Dr. Reeves said.
Recent research findings by Leonard A. Jason, PhD, psychology professor at DePaul University in Chicago, threw into question a long-held belief that CFS is most common among white women. His survey of nearly 29,000 Chicago residents found that the illness occurred across all ethnic groups. "Latinos had rates almost twice as high as Caucasians, and African Americans had rates similar to Caucasians," Dr. Jason said. The search for specific infectious agents that may trigger or perpetuate symptoms of the illness is also ongoing, Dr. Komaroff said. "Although it is still unproven that any infectious agent is the cause of CFS, a number of us think that is a very plausible possibility in many if not all patients." But when the dust finally clears around CFS, few researchers believe a single, infectious agent will be found to explain all the cases, Dr. Komaroff said.
And many believe that a variety of poorly understood syndromes ranging from CFS to Gulf War syndrome to fibromyalgia and multiple chemical sensitivity may turn out to be one and the same illness. Another theory is that CFS will turn out to be similar to cancer or heart disease in which a comprehensive term covers many varieties. "I think what we will eventually find is that there are different pathways and different subtypes, some that have immunological problems and some that have no immunological problems and some with other problems," Dr. Jason said.
THE CFIDS ASSOCIATION OF AMERICA APPLAUDS RESEARCH PRESENTING CLEARER PICTURE OF CHRONIC FATIGUE SYNDROME
Charlotte, NC—In the 1980s, chronic fatigue syndrome (CFS) was portrayed as the “yuppie flu,” a relatively rare condition that affected mostly upper middle class white professionals. Now researchers at DePaul University have shattered that image. A paper to be published in the October 11 issue of Archives of Internal Medicine reports that as many as 800,000 people nationwide may suffer from CFS, twice the number previously estimated by the Centers for Disease Control and Prevention.
And those at greatest risk are not who you would think. The study, which used a random sample of individuals in an ethnically and socioeconomically diverse inner-city community, paints a very different picture of how race, social class and gender may impact an individual’s chances of developing CFS.
“For years, this medical condition has been marginalized and misunderstood,” says Kim Kenney, Executive Director of The Chronic Fatigue and Immune Dysfunction Association of America. “This crucial piece of research presents a new ‘face’ for CFS. The high prevalence coupled with the fact that only 10% of those identified in the study had previously been diagnosed makes this illness a priority for redoubled research and education efforts by government and academic institutions.”
There is no known cure for CFS, which also is called chronic fatigue and immune dysfunction syndrome (CFIDS) and myalgic encephalomyelitis (ME). Symptoms include debilitating fatigue that is not improved by bed rest and may be worsened by physical or mental activity, impairment of short-term memory or concentration, sore throat, tender lymph nodes, muscle and joint pain and headaches. Symptoms must be present for more than six months without any other medical explanation. Individuals with CFS function at a substantially lower level of activity than before onset of the illness, and many are unable to continue holding jobs, attending school or caring for themselves or family members.
The CFIDS Association of America, Inc. is the nation’s leading organization working to conquer chronic fatigue and immune dysfunction syndrome (CFIDS). Since 1987, the Association has invested more than $8.5 million in education, public policy and research programs in its efforts to bring an end to the suffering caused by the condition.
For more information about the study or to receive a copy, call Roxanne Brown Jahi at DePaul University, 312/362-8623. Full text of the study will also be posted on the Archives of Internal Medicine web site at www.archinternmed.com on the morning of 10/11/99.
Message Points for CFS Prevalence Study
CFS is a much bigger public health problem than has previously been estimated. Dr. Jason’s research found that as many as 800,000 people nationwide may suffer from the illness, which is twice as many as previously estimated by the Centers for Disease Control.
The DePaul study also dispels the myth of CFS as the “yuppie flu,” mostly affecting upper class white professionals. Dr. Jason found that the condition is most prevalent among minorities and blue collar workers. Latinos are twice as likely to develop CFS as Caucasians.
The high rate among medically underserved ethnic groups is particularly alarming, given that they are the least well-equipped to seek out diagnosis and treatment. Only 10% of all individuals with CFS in the study had been diagnosed.
Dr. Jason’s research found that women have a very high rate of CFS versus men. Compared to other illness rates in women, CFS is 15 times as prevalent as lung cancer and more than 40 times as prevalent as AIDS. This makes it a major women’s health issue.
These findings point toward the need to make this illness a priority for redoubled research and education efforts by government and academic institutions.
Individuals who want more information on CFS can call the CFIDS Association of America toll-free, 24 hours a day at 1-800-442-3437, or visit the Association’s web site at www.cfids.org.
NEW STUDY FINDS CFIDS/ME COMMON!
The National CFIDS Foundation
By Cheryl Tai
In an article published this October in the Archives of Internal Medicine, a large study by Dr. Leonard A. Jason, et al shows that: ME "is one of the more common health problems,
The numbers of people suffering are about double the estimation of the CDC, ME occurs more in women across ethnic groups, ME is more common among those with lower levels of education and blue collar workers, and The CDC’s prevalence study left out huge numbers of ethnic minorities.
In a huge sampling of 128,673 adults in Chicago, the authors have, with one strong paper, disproved the commonly held belief that ME is found mostly in well-educated, high-income, stressed-out women! Jason, et al buried the government’s propaganda of the illness occurring in low numbers, finding a huge 0.4% in their random community-based sample. The previous and erroneous estimates "have been biased by differential access to health care treatment linked with gender, ethnic identification, and socioeconomic status."
In A Community Based Study of Myalgic Encephalopathy, the first paragraph dramatically states the implications of this underestimated and mainly ignored disease. The estimated annual direct and indirect cost to the community for each person with Myalgic Encephalopathy (ME) has been projected to be $9,436. In addition, the quality of life for individuals with ME has been found to be significantly lower than for other chronic illness groups. Since the functional disability associated with ME results in marked interruption of work and family life, the syndrome carries important implications related to public health and policy.
The previously reported prevalence rates did not adequately evaluate ethnicity and had lower rates by half. In addition, British studies did not use medical examinations as part of their study. Earlier studies done both privately and by federal agencies came up with an under-representation because they were often looking at behavioral aspects that prejudiced the studies. This landmark study was carried out in two phases. The first screened 128,673 adults by telephone in a random way (the closest birthday). In phase two, those who tested positive for ME symptoms were given a structured psychiatric interview, comprehensive examinations, laboratory tests, and a medical history. Two medical review boards approved this carefully completed study. An examination for fibromyalgia was included.
Women afflicted with ME were significantly higher, with 522 females per 100,000 versus only 291 males per 100,000. This study illustrates "a serious women’s health problem. For example, only 12 women per 100,000 have AIDS. Only 26 women per 100,000 have breast cancer. Only 33 women per 100,000 have lung cancer. Other findings that emerged included the information that ME "tends to peak during middle age, was most prevalent in those 40-49 years old, and least prevalent in 18-29 year olds and in those over 60 years old. Patients identified were more commonly found to be unemployed or working part time as well as on disability. The rates for psychiatric diagnoses were in a minority "confirming previous contentions that ME cannot be entirely attributable to psychological factors." A majority of 59.3%, in fact, could not meet a
psychiatric criteria. The "psychiatric comorbidity" was explained by "psychosocial stress resulting from compromised social and financial resources and emotional distress emerging from the experience of physical symptoms and functional impairment."
In previous studies by Dr. Leonard Jason, it was found that Psychosocial Factors Show Little Relationship to Myalgic Encephalopathy Recovery (J Psych & Behav Sci, 1988[12], Comacho and Jason) and that "purely psychiatric interpretations of CFS contradict a growing body of data that point to a pathophysiological cause and phenomenology..." (Psych Times, July 1999, Psychiatric Aspects of Chronic Fatigue Syndrome, Taylor and Jason). Another study found that the type of test influences a psychiatric label (Psychol & Health, 1998, Comparing the DIS With the SCID: Chronic Fatigue Syndrome and Psychiatric Comorbidity, Taylor and Jason.
[Ed. Note: This will probably be news for your Congressmen since the CDC still lists the numbers from the flawed 1987 study that gave 4 to 9 per 100,000 people on their web site as well as in their newly printed booklets from both the NIH and CDC. Dr. David Satcher was told of this at the Spring 1999 CFSCC meeting. It has been five months and nothing has changed, although Dr. Satcher said in response to Tom Hennessey, "There is no excuse for the government to put out incorrect information." Letters to your congressmen about this new information won't hurt. It would help us if the NCF was mentioned as your source of information.] ¯
CFS Attributional Study: New Chronic Fatigue Study Fuels Debate On Name Change; DePaul Professor Says Biological Name Taken More Seriously
What’s in a name? Plenty, when the subject is Chronic Fatigue Syndrome (CFS), according to DePaul University psychology professor Leonard Jason, whose recent study suggests that a name change would result in the much-maligned illness being taken more seriously.
An international debate on the issue weighs whether or not CFS’s weak moniker has hampered efforts to gain recognition and government support. Jason was joined by Sigita Plioplys, M.D., a psychiatry resident affiliated with the University of Illinois at Chicago and a research team from DePaul, which set out to determine if doctors’ perceptions of the disease would change if the name were changed.
The team found that when groups of medical trainees reviewed case studies of CFS patients that featured three different names for the disease, their perceptions did change depending on the name the illness was given. The names used in the study were: CFS, Florence Nightingale Disease (FN), named for the public health nurse who served during the Crimean War and was believed to have suffered from chronic fatigue; and Myalgic Encephalopathy (ME), the medically based term used to describe the condition.
More than 100 Chicago medical students and residents responded to questions pertaining to prognosis, correct diagnosis, illness cause and appropriate treatment.
When asked to assess the likelihood that the patient would improve within two years, 42 percent of the medical trainees assessing the Florence Nightingale name, and a similar 41 percent of trainees evaluating the CFS name responded that it was likely or very likely that the patient would improve. However, only 16 percent of the students and residents who thought the condition was called
Myalgic Encephalopathy felt it was likely or very likely that the patient would improve. This finding suggests that the doctors perceived the ME label as being indicative of a more chronic and debilitating illness as compared to the labels CFS and FN, Jason said.
When asked what factors were most likely responsible for the person’s illness, a greater proportion of medical trainees in the ME group attributed the illness to medical causes (39 percent) as compared with trainees in the FN (30 percent) and CFS (22 percent) groups.
"If you have a more medical-sounding name it does seem to change perceptions of the illness," said Jason. "This study provides a much-needed methodology for helping to change the name, and a way to go about it in a scientific, systematic way."
According to Jason, a more biological-sounding name for CFS will be beneficial because people tend to interact in a more sympathetic way when an illness has a name that communicates medical and scientific legitimacy. Also, the perception that CFS is a trivial illness has negatively affected government funding and support services. Jason indicated that more research and studies are needed to erase this myth.
Jason has conducted numerous studies on the prevalence of CFS and has written a book about the condition.
Other study team members were Renee A. Taylor, a project director affiliated with DePaul’s psychology department; Jennifer Shlaes, a graduate student of psychology at DePaul, and Zuzanna Stepanek, a volunteer research assistant and recent graduate of DePaul’s bachelor’s degree program in psychology.
The study, "Evaluating Attributions for an Illness based upon the Name: Chronic Fatigue Syndrome, Myalgic Encephalopathy and Florence Nightingale Disease," was reported in the July/August 1999 issue of the "Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) Chronicle."
The findings of the study have bolstered Jason’s confidence that CFS will have a new name in the future. "In the next year or two, a new name will come," said Jason. "A consensus is needed on what to change it to, and the scientific community will have to make that decision."
CFS is a chronic condition with symptoms that are severe, but often difficult to detect upon physical examination. They include fatigue, headaches and insomnia. For years the condition went un- or misdiagnosed because physicians weren’t able to differentiate between common fatigue and CFS.
Tired All the Time? We tell you how to rest up to rev up
by Kristyn Kusek
According to a recent National Sleep Foundation poll, one in five Americans says they're so sleepy during the day that it interferes with their activities. Could you use more z's? Lifetime Online spoke with the experts to find out how much sleep is enough, how to get what you need and how to tell if that sleepiness could actually be a sign of illness.
Sleep Sapper: Sloppy Bedtime Habits
Surprise, surprise: The number one reason most of us are exhausted is that we're simply not sleeping enough. How to tell? "If you wake up feeling groggy instead of refreshed, you're not getting enough sleep," says Leonard A. Jason, Ph.D., a chronic fatigue expert at the Center for Community Research at DePaul University in Chicago. While some people can get by on just a few hours, it's best to shoot for at least eight hours a night. To ensure an adequate amount of shut-eye, practice good sleep habits: Go to bed and get up at roughly the same time each day (even on weekends), use your bed for sleeping only (and for sex, of course) and put the kabosh on any noises or lights that could be disturbing your slumber.
Sleep Sapper: A Stimulating Diet
There are six common dietary pitfalls that can affect your energy level throughout the day, according to Cynthia Sass, R.D., of the University of South Florida in Tampa and a spokesperson for the American Dietetic Association (ADA): not drinking enough water (dehydration makes you feel sluggish), eating too little protein (protein keeps organs functioning and energy levels high), eating too few or too many carbohydrates (carbs keep blood sugar levels in check so you feel wide awake throughout the day), relying on caffeine (if you need it to be alert, you're drinking too much — try to limit your intake to approximately one cup of coffee or two diet sodas per day), not timing meals well (waiting too long to refuel results in low blood sugar and energy levels) and not eating a balanced diet (which means you're probably missing out on important vitamins and minerals). Make just a few of these changes, says Sass, and you'll feel more vigorous almost immediately.
Sleep Sapper: Lack of Exercise
Contrary to popular belief, exercise shouldn't make you feel more tired; indeed, working up a sweat is actually energizing. Physical activity conditions your body so that everyday tasks are more effortless. According to Dr. Jason, when researchers asked regular exercisers to take a break from their usual routine, their energy levels actually dropped. For maximum sleep benefits, try to work out at least three times a week for at least 20 minutes a shot. On days when you're especially weary, try some simple stretches, to relax you and get your blood pumping.
Sleep Sapper: Illness
If you're practicing good sleep habits, eating right and getting enough exercise but you still feel drowsy every day, you might have a sleep disorder. In addition to general sleepiness, for instance, chronic fatigue syndrome (CFS) is characterized by short-term memory or concentration loss, sore throat, tender lymph nodes, muscle or joint pain, headaches, and fatigue that lasts longer than 24 hours after exertion. Sleep apnea, a condition that causes irregular breathing patterns during sleep, may result in daytime memory loss and depression. PMS, the blues and mononucleosis can also cause fatigue. The bottom line: If your energy has dipped dramatically or if your sleep patterns are out of whack on a regular basis, see your doctor