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Diagnosis and Treatment of Chronic Fatigue Syndrome - second edition
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Chronic Fatigue Syndrome
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Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses: The Comprehensive Guide
- Used Book in Good Condition
Chronic Fatigue Syndrome: More Than Just Being Fatigued
Chronic Fatigue Syndrome (CFS), or Myalgic Encephalopathy (ME) is a complex and debilitating chronic illness that affects the brain and body. The misunderstanding of CFS/ME is often more difficult for patients to deal with than the illness itself.
A tenured professor from Ohio. A high powered Bay Area attorney. A journalist from Georgia. An Australian mother of five.
At first glance it may appear these four individuals have little, if anything, in common.
However, each one has had their life touched by Chronic Fatigue Syndrome (CFS), or Myalgic Encephalopathy (ME). CFS/ME is a complex and debilitating chronic illness that affects the brain and multiple body systems.
According to the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, the disorder affects at least one million Americans and millions more suffer worldwide. As the above illustrates, the illness doesn't discriminate based on locale, age, race, ethnicity or socioeconomic status.
Once called the "Yuppie Flu" and discredited by many medical professionals, CFS/ME is now widely recognized as a legitimate disease. The Centers for Disease Control (CDC) have released a "CFS/ME Toolkit" pushing physicians to consider CFS/ME in symptomatic patients when no other physical or psychiatric explanations can be found.
Despite this, the illness is often still misunderstood.
"People don't understand ME/CFS because it is their sense that fatigue is experienced by everybody -- 100% of people get it from overexerting themselves or from a self-correcting flu. In their experience fatigue doesn't last. The Regular Joe says, 'Gee, I get chronic fatigue, too, working two jobs and being on the go all the time.' They don't understand that ME/CFS is actually a lot more than just fatigue; there are memory problems and other serious symptoms," said Leonard Jason, PhD, a Clinical Psychology Professor at De Paul University in Chicago, IL, during a recent telephone interview. "One out of four people will say they feel fatigued, but ME/CFS encompasses a lot more than that."
Jason knows firsthand how difficult it is to struggle with the illness. In 1989 he came down with mononucleosis, but never fully recovered. Instead, he became more and more incapacitated with severe fatigue, pain in the muscles and joints, problems with memory and concentration, headaches, unrefreshing sleep, sore throat, tender lymph nodes, and a myriad of other symptoms.
It became so bad that Jason could no longer work as a professor. "I held on as long as I could, but ended up having to stay home," he said.
After two years of being homebound, Jason was able to return to De Paul University part-time in 1991. "I was fortunate that I was able to come back very slowly, taking it one step at a time. Some days I could only work one hour. I was allowed this because I was a tenured professor, very successful, bringing in lots of money through grants. Most people don't get this opportunity. It was a privilege to come in and be accommodated and be able to build myself back up."
Jeannette Burmeister, an attorney admitted to practice in Germany and California, wasn't so fortunate. Once a practicing attorney in an international firm in San Francisco, her career was cut short due to the disease in 2020.
"From one day to the next, my life came to a screeching halt. I went on a medical leave at first and then on disability," she explained during an interview.
Gone were the late nights in the city, dancing until dawn, and the frequent trips traveling abroad with her husband. Burmeister found herself barely able to get out of bed in the morning and unable to function as she once had.
Tasks that used to be simple suddenly became extraordinarily difficult.
"I read somewhere that it's like an old battery that takes a very long time to get charged, never does get fully charged, and gets drained very easily. That pretty much hits the nail on the head." she said. "Every task, both physical and mental, no matter how small, feels like a triathlon."
For Ryan Prior, CFS/ME's toll took away from some of the most important years in his life. The Georgia teenager went from being the captain of his high school cross county team, student council president and an Adanced Placement scholar to being confined to his house and taught by teachers at home.
He missed his Prom, Friday night football games, and other important teenage activities. At his lowest point, he even contemplated his very existance.
"Essentially it was a feeling that I was dying and I had to reassess why I even bothered living in the first place," he said while being interviewed. "For people with CFS/MEâ€¦.you have to re-discover your reason for living."
Darcy Shedden, a mother of five from Australia, experienced CFS/ME from a different perspective. She watched as her youngest child, 14-year-old David, became so ill he could no longer compete on his high school swim or soccer team.
However, it wasn't the physical aspects of CFS/ME that was hardest for Shedden and her son to deal with.
"The worse thing about our experience was the disbelief by many medical people that he was ill. Mostly it was put down to a personality disorder of his, or bad parenting on my part," she said during an e-mail interview.
It is not uncommon for CFS/ME to be misdiagnosed. Because there's no lab test or biomarker for CFS /ME, and fatigue and other symptoms of CFS/ME are common to many illnesses, doctors often have difficulty diagnosing the disorder.
In addition, CFS/ME has a pattern of remission and relapse and symptoms vary from person to person in type, number, and severity. Some days ME/CFS patients feel almost "normal" and have the energy to tackle numerous things, while other days they are completely wiped out.
"People look okay so others say, 'They look fine, what is the problem,'" said Jason. "The people don't realize that the person slept the last three days and now has the energy to go out for one day."
Shedden agreed. "People have a hard time acknowledging CFS because there is no definitive cause, no standard set of symptoms, no obvious visible manifestation, for example, no blood, broken limbs etc, and there are periods of "wellness" where the sufferer is able to function almost normally. Many doctors feel it is depression , but as one parent said to me... 'He wasn't depressed in the beginning but after years of the illness, he probably is now."
Shedden's son was fortunate that his mom listened to him and would not give up until they had some answers. "After I basically made the diagnosis, it was then a question of finding a solution. Luckily for my son, we were able to do that and he, for all intents and purposes, is now over the illness," she said.
Although her son now holds down a full-time job, plays sport and socializes normally, he does so at his own pace.
Burmeister, like David Shedden, has learned that she needs to listen her body and limit her activities according to her energy level. "The fact that I am able to do a certain thing in the moment doesn't mean that I can always do it or that I will not pay for it the next day or that doing it doesn't require me to rest for the remainder of the day or ahead of time," she said.
Prior also found that he had to pace himself in order to function. By listening to his body and resting when necessary, Prior was able to graduate from the University of Georgia with a double major in international affairs, write for Newsweek and USA Today, and become the founder of the Georgia Political Review.
Like many former and current CFS/ME patients, Prior now hopes to help others who are battling the disorder. "You have to turn lemons into lemonade," he said. "That's the way the universe works. When one door closes, another one opens."
Prior, along with his filmmaker girlfriend Nicole Castillo, have raised over $17,000.00 to film The Blue Ribbon, a documentary exposing the hidden story of ME/CFS that features interviews with top researchers, doctors, and activists. He hopes the film will lead to $50,000 in funding to create "an eight-week summer fellowship program" for medical students, between their first and second years, to study with recognized experts in CFS/ME.
Filming for the movie will start on July 19 through July 28 on the West Coast, while East Coast footage will be shot in August or September. Prior hopes to release the film in May 2020, during CFS/ME awareness month.
Jason is now leading the ME/CFS Research Center at De Paul University. His team is doing research on the prevalence and epidemiology of the disease. He is also working on case definition, diagnostics, how to stay within your body's energy envelope so your body has a better chance of recovery; how cells differ, and has done recent work with brain protein differences in CFS and Multiple Sclerosis (MS) patients.
Shedden wrote a book titled My Teenage Son had Chronic Fatigue Syndrome, which was published earlier this year. She hopes it will help others who have children or loved ones suffering from the illness.
And although Burmeister is actively fighting ME/CFS, she too wants to help others when she recovers.
"One of my being-healthy-again fantasies is to start a law practice representing private disability claimants in their pursuit of the benefits they are entitled to," she said.
Jason offers the following advice to those who are currently suffering from ME/CFS.
"I would tell people with ME/CFS to first find a trusted physician sympathetic to their symptoms, who will learn more about the illness. Try to minimize contact with people who do not understand ME/CFS. Surround yourself with people you will get support from. If they don't understand your illness, educate them," he said. "You have to be your own advocate."