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Chronic Fatigue Syndrome the Topic of New Campaign November 3rd, 2006 @ 3:49pm Dr. Kim Mulvihill Reporting KSL TV 5, NBC Salt Lake City View This Story in Real Player When
you're exhausted your
body aches, you can't concentrate, you just want to sit down. But what
if you get plenty of rest and still can't snap out of it for days,
weeks, even years?
It's called chronic fatigue syndrome and the government believes a million Americans have it. They're rolling out a new public awareness campaign to convince skeptics the disease is real. There are many doctors who don't believe in chronic fatigue syndrome -- they tell patients it's all in their heads. That's one reason the CDC is trying to get the word out that there is scientific evidence this condition really does exist. Fourteen years ago Elly caught a cold that changed her life. Elly Brosius, Chronic Fatigue Patient: "I went to work and I'd end up lying on the floor." She had no energy. She tried eating right and exercise but nothing helped. Elly Brosius: "You find out that rest isn't helping and every day you wake up you're more exhausted than you were the day before." Eventually diagnosed with chronic fatigue syndrome, she's been on disability ever since. Since it's hard to diagnose, many patients are told it's all in their heads. Dr. James Baraniuk, Chronic Pain & Fatigue Center: "The doctor doesn't understand it. As a result, he says, 'You're crazy. You're nuts. Get out of here.'" The CDC estimates 80 percent of those with chronic fatigue syndrome may not know they have it. A new public awareness campaign aims to educate patients and doctors. Dr. Julie Gerberding, Director, Centers for Disease Control: "We are committed to improving awareness that this is a real illness." Besides doctors, Dr. James Baraniuk says some of the biggest skeptics are drug companies who are reluctant to fund research. Dr. James Baraniuk: "You tell them about chronic fatigue sydrome and their eyes just roll over and they just walk away, 'cause, 'Oh yeah, here's another flaky doctor with these flaky people." But the evidence is growing. Studies have linked chronic fatigue syndrome to brain abnormalities and immune system deficiencies. Elly Brosius and thousands of others hope research will help them discover why they've felt so tired for so long. The average chronic fatigue patient is a woman in her 40s or 50s. Female patients outnumber men four to one. A large CDC study found this condition costs the US nine billion dollars a year in lost wages. Read this Story at KSL.com It aired on NBC in the Washington DC area, but it was not posted to their website. Story also appears at Chronic Fatigue: Is It All In Your Head? NBC KCBD TV, Lubbock TX - 11/03/06 With photo of Elly, Photo of a Brain Image. Chronic Fatigue Syndrome NBC Newschannel 6 KPVI, Oregon - 11/03/06 Chronic
fatigue syndrome - a lot more than being tired
Loudoun Times-Mirror July 12, 2006 By:
Shannon Sollinger
Times-Mirror Staff Writer Elly Brosius was a working physicist when it started. Myra Hays was training for her first mini-triathlon and working full time in human resources. Mahsa Mehryar was finishing her degree in psychology at George Mason University, ready to start work on her master's. Today, they are virtually housebound. They are three of the millions of Americans - perhaps 4 million, according to new data - who cope daily with a devastating disease that has robbed them of the ability to go to work, to raise children, to enjoy friends. Sometimes just to get out of bed. They have chronic fatigue syndrome. It's not "yuppie flu," and chances are it is not going away. It struck Hays, of Leesburg, in 1988. Mehryar, who lives in Cascades, was on a pre-graduation trip to Florida with classmates in 1998 when a bad cold and swollen lymph glands sent her to the hospital Mehryar spent nearly two years in bed. Food allergies prevented her from eating nearly everything - on one screen of 100 foods, she was allergic to 80. "I had no idea what was happening," Mehryar said. "I just felt horrible. I started having all the symptoms - food allergies, concentration problems, bad fatigue, I couldn't get out of bed." She went to a different doctor for each symptom. One diagnosed her as depressed. "I knew I wasn't depressed. In depression, you want not to live any more. I wanted to go back to work, I wanted to fulfill my goals." She still hopes to start that master's program, she said. For now, she takes an online course so she can pace herself, not use up too much energy at any one time. For Brosius, who lives in Sully Station in Centreville, it started with a cold in 1992. She'd had a bad bout of mononucleosis the year before. But this time, she didn't get better. She got tired. She couldn't sleep. She forgot things (not career enhancing for a physicist). Her odyssey is a familiar one to CFS researchers and sufferers. A year or more without a diagnosis. Denial. Anger. "I'm a scientist," Brosius said. "I was going to fix it, read everything, figure it out." CFS also causes "cognitive dysfunction." More often than not, she couldn't remember what she had just read. If she had the strength to leave the house, she started attending the monthly meetings of the Northern Virginia Chronic Fatigue Syndrome and Fibromyalgia Support Group. By 1993, she stepped into a leadership role. In consultation with Jonathan Gilbert, a practitioner of Traditional Chinese Medicine, she set up a new group that focuses not on the latest research and on finding doctors who will treat the disease (or at least admit it exists), but on strategies that have been successful in coping with CFS day to day, month to month. Year to year. This July is the one-year anniversary of EGG - Elly's Gratitude Group - and it met in Leesburg in June. "It was something I saw on 'Oprah.' Write down five things every day you are grateful for. Do it for three months, she said, and your life will be changed." Some days, said Brosius, she was so tired she couldn't think of a single thing to be grateful for. So she wrote down, "This day is over." Gradually, she said, it started to work. Like a martial arts student, she learned to work with energy, not fight it. "Frustration, anger and grief were using more of my energy that I realized," she wrote when she formed EGG. "Writing grateful statements loosened the grip draining emotions had on me. ... My symptoms were still present, but handling life became easier." Contact the reporter at ssollinger@timespapers.com Read Article at the Loudoun Times Mirror. Post a Comment. Visit the EGG Web Page Chronic fatigue syndrome - One Woman's Journey Loudoun Times-Mirror July 12, 2006 By:
Shannon Sollinger
Times-Mirror Staff Writer Myra Hays was 30, living and working in St. Petersburg, Fla., in training for a mini-triathlon. She'd had a severe sinus infection a month before but was in good health. Enter chronic fatigue syndrome. She shepherded a group of young people from her church into the bus for the trip home after a week on the Appalachian Trail followed by some white-water rafting. "All of a sudden, I had this overwhelming feeling that I didn't have control of the bus. I couldn't drive the bus, watch the other cars on the road, watch the signs. I was extremely tired and everything became very confusing for me." She thought she had the flu, that she could go to a doctor who would give her a diagnosis and a pill and "it would be over with. It wasn't over with." She lives in Leesburg today, 18 years later, has married and can occasionally help out with the family business. She walks for exercise but usually forgets how long she's been out there. Chronic fatigue syndrome is a "very inadequate" name for her condition, Hays said. She prefers to add "and immune system dysfunction." She gets tired, and has frequent migraine headaches, but "for me, cognition is worse than the other symptoms." She remembers walking into the new Giant east of Leesburg. To most people, the layout is familiar. A few little changes. To Hays, the "little" differences were overwhelming. "I just started to cry. I went home. I didn't buy anything." She moved her car one day to make room for recycling on the sidewalk. She went back inside. She forgot the car around corner, key in, still running. It took her years, Hays said, but she has moved past the denial, the search for a cure. "I started seeing myself as a person who might have this for the rest of my life. I had to stop being so angry about it." Just the facts What is CFS? Chronic exhaustion that lasts at least six months, accompanied by at least four of these symptoms: Substantial impairment of short-term memory and concentration Sore throat, tender lymph nodes, muscle pain, joint pain with no redness or swelling Headaches of a new type, severity or pattern Unrefreshing sleep Post-exertional malaise lasting more than 24 hours Many sufferers exhibit orthostatic intolerance either low blood volume or reduced blood flow that makes standing or sitting upright hazardous or impossible. What causes it? No one knows. Many CFS patients describe "flu-like" symptoms. Recent research suggests that a viral or bacterial infection, or psychological stress, activates the body's immune system, which does not shut down. Normal fatigue can be "cured" by rest and exercise. CFS victims frequently cannot rest, and exercise makes the condition worse. How is it diagnosed? Tests can exclude other conditions with overlapping symptoms lupus, Rocky Mountain Spotted Fever, Lyme disease but cannot pinpoint CFS. Dr. David Bell, of Londonville, N.Y., argues that the "central and most disabling symptom of CFS is not fatigue but the symptom of orthostatic intolerance." Who gets CFS? Anybody. CFS strikes four times more women than it does men, which suggests a genetic component. Recent research suggests that some people have a genetic predisposition to the disease, which is kicked off by infection or environmental insult. Research at DePaul University estimates that as many as 800,000 people in the U.S. have CFS, and that up to 90 percent of those have not been diagnosed. Fewer than 10 percent recover. Where to learn more: Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America includes more than 1,500 pages of information and research, including the process of applying for Social Security disability, on its Web site, www.cfids.org . CFS Research makes available medical articles to patients, researchers and doctors at www.cfsresearch.org . The Northern Virginia CFS/FMS (Fibromyalgia) Support Group meets the third Saturday of every month at the Mason Governmental Center in Annandale, 2-4 p.m. No stairs, easy parking, please don't wear perfume. www.cfsnova.com . EGG (Elly's Gratitude Group) alternates monthly meetings in the D.C. metro area with conference calls. The next conference call is July 29, and the Aug. 29 meeting is at the IKEA restaurant in Woodbridge. The September meeting will be at the Gilbert Clinic in Bethesda, Md., Sept. 21 World Gratitude Day. Www.cfsnova.com/egg.html . Elly Brosius also hosts a dysautonomia support group [now by phone] the second Tuesday of every month. Call her at 703-968-9818. The Centers for Disease Control and Prevention in Atlanta, Ga., www.cdc/gov/cfs . Eastern medicine gains ground in region By DREW
BUSH Journal staff writer For most residents of Northern Virginia and Maryland, the idea of Eastern medicine may be akin to Buddhist monks sitting on wind-swept mountains, tending to bubbling cauldrons and nameless, ancient powders. But for a growing number of Washington-area residents, Eastern medicine has grown in its significance, credibility and ability to combine with established Western medical ideals. "The art, as well as the science, is really phenomenal especially for promoting healing of people who have chronic diseases," said Dr. Sharon Montes, of Silver Spring, an assistant professor at the University of Maryland in Baltimore. Montes was trained in Western medicine at a trauma center in a Texas hospital but has since moved to work in the university's clinic that strives to combine Western and Eastern techniques. "I really think, especially given the costs of healthcare in the United States, and the increasing frequency of chronic degenerative diseases, that there is a place [for the two medicines] side-by-side." One of the practitioners of Chinese Herbal Medicine she works with is Jonathan Gilbert, from Britain. Gilbert recently opened [...] Oak Lane Practice in the region; [July 2011 location is The Gilbert Clinic, Air Rights Center - Suite 760 East Tower, 7315 Wisconsin Ave, Bethesda MD]. For Montes, as well as her patients, Gilbert's practice represents a synthesis of two medical approaches that gives them an alternative treatment to diseases from which their doctors might not have been able to provide relief. "I had Chronic Fatigue Syndrome and I was pretty crippled from it," said Deborah Stokes, of Alexandria, who previously had practiced limited alternative medicine on her own. "I was exhausted and I had tried every drug, every type of treatment and nothing had given me my old energy back. But for six months I've been symptom free - I even sent [Gilbert] a Christmas card thanking him for the best gift I've ever had." While sipping on some coffee at Caribou Coffee in Burke, Gilbert explained how he became involved in Eastern medicine after serving in Britain's Royal Air Force as a navigator. "As a child I practiced martial arts from an early age and through that learned a form of Shiatsu, which is a form of Japanese acupuncture," Gilbert said. In subsequent years - as Gilbert searched for work that would involve a "mind and body" protocol - he graduated from the London Academy of Oriental Medicine in 1995. He then studied under Professor Truong Thin at The Traditional Medical Institute of Saigon, Vietnam, for seven months. He explained that he holds a masters degree in Oriental medicine in America, but not a Ph.D. because the United States hasn't established criteria for Ph.D.'s in alternative medicine yet. Besides, he said, in England people trust in each other's word. "The ability to write formulas for a patient individually is a complex formula, or a complex solution, that requires a lot of years of training and fortunately enough I received that training. But it's still not a particularly common practice, and I think that's a great shame because it is the root of Chinese medicine. If we like, it is the body of Chinese medicine." Gilbert noted that there are 3,372 different herbs used as ingredients and nearly 1,500 formulas. While Western medicine focuses on scientifically examining a patient's problem and working from there, Chinese Herbal Medicine takes into account a patient's history, lifestyle, diet and other factors, he said. "For many doctors, this means that Eastern medicine may actually be better at treating comprehensive or lifestyle-type diseases, " Montes said. Each herb in a formula plays a different role; some work on the symptoms, some decrease side effects and some transport the medicine to the place in the body where it's needed. "As a scientist I may never know exactly how the [herbs] are working," Montes said, but treatments like acupuncture do have scientific explanations that researchers are beginning to ucover. Part of the reason that Americans do not take Eastern medicine seriously, Gilbert said, is that there are so many practices set up by people who do not have a serious education in the field. "It's very precise, it's not amateur night. You're talking about millions of people practicing this medicine over 2,000 years." He suggests contacting the National Certification Commission for Acupuncture and Oriental Medicine to find out which practitioners have licenses. Since the government doesn't require certification for some forms of Eastern medicine, many practitioners get by without being certified. And for most treatments, two months may pass before patients begin to feel the effects. But when they do, many patients describe it as a big change. "After taking the herbs for 30 days I could see significant change," Noel Weller, of Alexandria, said of her adrenal burn-out syndrome. "As to whether [Chinese herbs] were a cure, I couldn't tell you," said Gerry Hanlon, of Baltimore. Hanlon suffered from Crohn's Disease, which kept him from being able to digest food well and left him feeling week. His doctors had him on a regime that would entail taking 3,000 pills a year for the rest of his life. "I've sure become a convert," Hanlon added after noting he was originally skeptical of Eastern medicine. "All I know is that it's working for me." To
contact Jonathan Gilbert.... Copyright - The Journal Newspapers. Publication date: 12/26/2003 [The Journal Newspapers is no more. This article was removed from its website in 2006.] Finally, getting his zzz's After coping with a sleep disorder, a Woodbridge man gets help from TV Richmond Times-Dispatch September 1, 2006 BY JOSH EISERIKE MEDIA GENERAL NEWS SERVICE
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