Vol. V, Issue #53
Bergen ME/CFS-FM Support Group Newsletter
We hope you all had a refreshing summer. With September now here, plans are underway for the coming meetings. Meetings will again be held every third Sunday from 2-4 PM (September through May, and the second Sunday in June). Meetings are held at The YWCA/YMCA of Ridgewood, 112 Oak Street, Ridgewood, NJ. Everyone is welcome! The schedule for the remainder of 2008 can be found at the end of this newsletter.
Remember to notify us of any changes to your email address. If you wish to be removed from our mailing list, let us know.
For our readers who receive this newsletter in the US mail, we are asking for $5.00 to cover the cost of postage for the 2008-2009 season. If you cannot afford this, please contact us and request a waiver. If you now have access to email, we would like to add you to the email list to help curtail our expenses…and to ensure that you receive all our mailings.
NJCFSA 2008 Conference
NEW RESEARCH AND PERSPECTIVES IN CHRONIC FATIGUE SYNDROME (ME/CFS)
Sunday, October 26, 2008 co-sponsored by Monmouth Medical Center
Sheraton Eatontown Hotel Conference Center Eatontown, New Jersey
11:30 –1:00 pm Registration, exhibits and buffet lunch
1:00 – 1:15 pm Introduction & Welcome: Warren M. Walkow, MD, Dept. of Med., Monmouth Medical Center
1:15 – 2:00 pm John Chia, MD - The Role of Enteroviruses in CFS
2:00 – 2:45 pm Pat Fennell, MSW, LCSWR - CFS, Quality of Life, and the Chronic Illness Era
2:45 – 3:00 pm Coffee, tea & beverage break
3:00 – 3:15 pm Presentation of Awards
3:15 – 4:00 pm Susan Levine, MD, FACP New Infectious Causes of CFS and Methods of Detection
4:00 – 4:30 pm Question and Answer Panel Session:
John KS Chia, MD, is the founder of EVMED Research and also an assistant clinical professor at UCLA school of Medicine. As a well rounded physician, he is a dedicated researcher and an infectious disease specialist in Torrance, California. His most recent discovery that 82% of Chronic Fatigue Syndrome patients in his study had enterovirus capsid proteins within their stomachs was published in the Journal of
Clinical Pathology and announced in an international press release. He also is actively investigating effective treatment strategies to help these debilitated patients.
Patricia Fennell, MSW, LCSWR, is a researcher and clinician specializing in chronic illness, trauma, forensics and hospice care. Her organization, Albany Health Management Associates, treats and examines global health care concerns through clinical care, consulting, and professional education utilizing the Fennell Four Phase Treatment (FFPT™) approach. Her publications include Managing Chronic Illness: The Four Phase Treatment Approach and The Chronic Illness Workbook.
Susan M. Levine, M.D., F.A.C.P., is a Board Certified, Infectious Disease and Allergy & Immunology Specialist, with a primary interest in CFS and FM. Dr. Levine has published many research papers in peer‐reviewed journals; she was a contributing author to A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome. She served on the Name Change Workgroup, reporting to the Federal Government committee for CFS. Dr. Levine collaborates with scientists from multidisciplinary fields in national and international
ADMISSION: Register by October 12: $35 Register on conference day: $45
NJCFSA Information Hot Line: 888‐835‐3677
Registration includes buffet lunch, program handouts, and free parking. For health considerations, this conference is fragrance‐free,
smoke‐free and pet‐free.
Please make check payable to:
Your returned check will be your receipt.
Mail check and this form to:
NJCFSA Fall 2008 Conference
P.O. Box 477
Florham Park, NJ 07932
NJCFSA FALL 2008 CONFERENCE
Please fill out and detach this form /copy form for additional attendees
In the News – ME/CFS
Why ME/CFS? A perfect name isn't necessary, but a respectable name is essential
by Karen Lee
A perfect name isn’t necessary, but a respectable name is essential. Since early February 2007 when the CFS Name Change Advisory Board announced its decision to call for changing CFS to ME/CFS (and later, when they finally decided the 'ME' should stand for either myalgic encephalopathy or myalgic encephalomyelitis), there has been a flurry of comments, both pro and con. Acknowledging that there is no perfect name, in my opinion they made the best possible choice. Although I was not at the board meeting, I’d like to offer what I think was the rationale behind the selection of ME/CFS.
Why Change the Name?
The first question to consider is why do most of us want a name change? It’s because the name ‘chronic fatigue syndrome’ trivializes a serious illness by naming it for one of its symptoms, namely fatigue - a symptom most people experience at some time in their lives. Since CFS it is not a medical-sounding name, family members, friends, and even doctors tend not to take it seriously.
While we all want the best name possible, we have to be realistic. If we hold out for a name that adequately incorporates every facet and variation of the illness, we will be waiting many more years for an acceptable option. On the other hand, if we agree on a name that is not demeaning yet has a reasonable chance of being adopted, we can move on and focus our efforts on raising awareness and increasing research.
Some people from countries outside the U.S. have expressed confusion and disappointment at the choice of ME because that is what’s already being used in their country. (It should be noted that the Name Change Campaign was aimed at the United States, which perhaps should have been made clearer in the beginning.) The fact that ME is used around the world is precisely why it is a good choice. ME has been referenced in medical literature since 1956 and is still widely used in most of the world today. The history behind ME and its worldwide use will improve the likelihood of its acceptance by healthcare professionals.
Why Not a More Accurate Name?
A few patients have expressed concern that the term ME doesn’t address specific aspects of the disorder, such as immune system dysfunction. As research progresses, it is becoming apparent there are a number of subgroups under the larger umbrella of ME/CFS. Until the etiology of all of these variations is determined, it is impossible to come up with a name that would accurately define all facets of the illness.
The fact is many diseases have been named before their etiology was known. Malaria actually means ‘bad air’ and got its name because it was originally thought the disease was caused by breathing swamp gasses. And cancer literally means ‘crab.’ It is thought the name probably came from the appearance of the cut surface of a malignant tumor. So, it’s not essential for the name of an illness to describe it in detail. What is important is that the illness be taken seriously. A medical-sounding name like myalgic encephalopathy or myalgic encephalomyelitis has a better chance of being taken seriously than chronic fatigue syndrome, which just sounds like you’re tired.
A perfect name isn’t necessary but a respectable name is essential. Another important fact to know as we advocate for a name change is that there is precedent for changing a demeaning disease name to something more acceptable and respectful. Multiple sclerosis was originally known as hysterical paralysis; gay-related immune deficiency was changed to AIDS (acquired immune deficiency syndrome); Mongolian idiot syndrome became Down syndrome; and leprosy was renamed Hansen’s disease.
Why Keep CFS?
Given that CFS is such a trivializing, demeaning name, you may be asking why it is being kept as part of the new name. The main reason is for transitional purposes. CFS is listed in the ICD-9-CM codes. (ICD-9-CM stands for International Classification of Diseases, Ninth Revision, Clinical Modification.) This is the official system used to assign codes to diagnoses and procedures in the United States and is based on the World Health Organization’s classifications. One of the reasons for leaving CFS as part of the new name is that the same ICD-9-CM code can still be used.
Changing the name completely and suddenly dropping the name recognized in the ICD-9-CM codes could potentially cause patients serious problems with insurance and disability claims. Changes to the code do not come easily and usually take many years, but hopefully as ME/CFS gains acceptance, the code can be revised and the CFS can finally be dropped. In the meantime, using the combined form of ME/CFS will make for a smoother transition and less confusion than might be caused by a newly created name.
The Choice is Ours
A complete transition from CFS to ME will take time - probably several years. But the sooner we start, the sooner we’ll reach our goal. We are making definite progress. In years past, the name change efforts have been largely patient-driven. While many doctors and even some bureaucrats acknowledged the inadequacy of the name, most were unwilling to make a change. Now a group of top experts in the field have come together, agreed the time is right, and called for the name change.
Now it’s up to us. We can choose to hang on to our idealism and wait for the perfect name, or we can get behind the name that has been recommended and has a reasonable chance of being adopted. The more united we are as patients, the more seriously we will be taken. Change is difficult for most people, but if we work together and persist, change will come.
* Karen Lee Richards is the Expert Patient, specializing in Fibromyalgia and Chronic Fatigue Syndrome, for HealthCentral's ChronicPainConnection (http://www.chronicpainconnection.com). Karen is co-founder with Lynne Matallana of the National Fibromyalgia Association (NFA) and was its vice-president for eight years. From 2002 through 2005 she was Executive Editor of Fibromyalgia AWARE, the first magazine devoted to Fibromyalgia and other invisible illnesses. See "Karen Lee Richards - Making a difference in the lives of those living with Fibromyalgia and Chronic Fatigue Syndrome."
In the News
Lost in a System Where Doctors Don't Want to Listen
By Benjamin H. Natelson
Sunday, August 3, 2008
I'd like to tell you about one of my patients. She's the kind of patient that I enjoy seeing but that many doctors go out of their way to avoid. This means that she's also the kind of patient I worry about most -- a patient who in the near future may be stranded without proper care as fewer and fewer doctors, constrained by time and the economics of our health care system, are willing to perform the fundamental task of diagnosing difficult or unclear medical problems.
My patient is a 37-year-old woman, a mother of two teenagers, with a busy career. She was in perfect health until July 2007, when, overnight, she came down with what her doctor said was a case of flu. This "flu," however, wouldn't go away. Her doctor assured her that she'd get better, but three months after her first visit to him, she was back in his office, still feeling ill. The doctor did a thorough medical evaluation, told her that he couldn't find anything wrong and again assured her that she'd eventually recover. A few months later, she was back again. This time, as she described it to me, the doctor sort of shrugged his shoulders and told her that maybe her problem was all in her head.
As you might imagine, the patient was put off by her doctor's dismissal, which set her off on a gyre of doctor-shopping. Over the next six months, she saw eight physicians, as well as a chiropractor and a homeopath, without getting a diagnosis or any real help. Finally, she did an Internet search and found me, a specialist in medically unexplained illness. All her tests were normal, but I listened to her and was ultimately able to make a diagnosis of chronic fatigue syndrome. We then launched into the treatment of her symptom-based illness, a slow process that unfortunately doesn't end in a cure but often leads to improvement.
The fact that this woman couldn't find a doctor to help her until she found me says a lot about where the U.S. health care system is heading. The economics of modern medicine have converted the doctor from Ben Casey to a factory worker on a conveyor belt, and those economic forces are driving more and more physicians toward specialties where they can spend less time with patients and earn more money.
Learning how to make a diagnosis is a critical part of medical education. It requires the doctor to listen to the patient describe the illness and then put it in a personal health framework by asking about other symptoms, previous medical problems (extending to the patient's family) and elements of the patient's life story. Doctors usually schedule an hour for these initial consultations, then 30 minutes for follow-up appointments.
Half an hour of a doctor's time is normally plenty for a straightforward health problem and more than enough for a cold with a runny nose or a cough with no fever. But what happens when your symptoms don't add up to a clear-cut diagnosis? Studies have shown that in more than 50 percent of cases, patient complaints don't have any diagnosable medical cause that can be determined by careful laboratory testing. Pain, fatigue, dizziness and trouble sleeping are among the most common symptoms, and doctors have problems with these because they don't point to any particular diagnosis.
When that happens, the diagnostic algorithm learned in medical school breaks down. The doctor's not sure what's wrong with the patient, and if he has a busy office, he won't have time to think through the patient's complaints to arrive at a coherent diagnosis. Very often, when all the tests are normal and time has run out, the doctor will conclude a visit, as my patient's initial physician did, by saying: "There's nothing really wrong with you. I'm sure you'll feel better in a few days -- or weeks."
Even doctors with time often prefer dealing with straightforward medical problems. I have a friend who's an allergist in private practice. When I asked him whether he'd be willing to work with some of my patients, he quickly said no. Why, he said, would he want to tackle difficult cases like that when he can take someone suffering from severe allergies and make them better in a day?
Doctors are being lured away from primary care by economic factors as well. Eighty percent of medical students have to borrow money for medical school. The expected median debt of this year's graduating class is about $120,000 for state medical schools and $150,000 for private, according to the American Association of Medical Colleges. At the same time, medical students face a candy store of career choices, all with widely varying earning (and debt-reduction) potential.
I, for instance, am a medical school professor with a practice devoted to patients with medically unexplained symptoms such as fatigue and pain. My patients often have complex medical histories and feel they're at the end of their rope. If a patient has Medicare coverage for disability caused by an illness, Medicare will reimburse me $196 for each hour of interaction with that patient. After expenses and other charges, I'll keep $86, a very good hourly salary.
But consider the neuroradiologist, who specializes in interpreting brain MRIs. Just a few years ago, it would take a radiologist a long time to organize and view many sheets of a patient's X-ray films, but today, thanks to computerization, the well-trained neuroradiologist can assess dozens of images of the brain in just a few minutes. He or she can probably read a patient's images and dictate a report in about 15 minutes. At my previous institution, the hourly reimbursement from Medicare was $492, and the doctor's take-home totaled $216, a substantially better salary than mine.
Physicians in a procedure-driven specialty such as neuroradiology -- and there are many others, such as cardiology and anesthesiology -- always earn more than patient-centric doctors. American medical students are aware of this as they make their career choices. And fewer and fewer are choosing patient-oriented medicine: In 1996, American graduates filled 76 percent of residency training slots in family medicine, while in 2002, they filled only 48 percent. We see similar shifts in general internal medicine. The remaining positions are filled by foreign-born and foreign-trained medical school graduates. They pass the same qualifying tests for licensure as American graduates, but cultural diversity and varying communication skills may affect their approach to patients and their ability to hear subtleties in their patients' stories.
Society has come up with a partial solution to the growing gap in primary care providers: "physician extenders." These master's level health-care professionals are trained to deal with commonly occurring, easy-to-diagnose problems: a flu, hay fever, a splinter, even severe chest pain. Usually, however, they haven't had enough training to give them the know-how to sort through a complex medical history to arrive at a diagnosis that isn't immediately evident. When they're stuck, they have to call the physician, and by then, the 30-minute visit is very often over. The patient is left hanging and disappointed -- on his or her own to figure out what to do next. The inevitable result: patients falling between the cracks of classical medicine.
There's one silver lining in this situation: the increasing number of women choosing medicine as a profession. Approximately 50 percent of most medical schools' entering classes today are women. This trend may work to offset a major patient complaint -- that doctors don't spend enough time listening to them. Research studies show that women in general and women physicians in particular are better listeners than men. Since the turn toward more women in medicine is relatively recent, I'm not sure which path the young female doctor will choose, but I can say anecdotally that quite a few of my own female students seem to be choosing primary care -- either family or internal medicine. I hope that in the next few years, their presence may help offset the dearth of U.S.-trained doctors in primary care.
Meanwhile, what are patients with an elusive diagnosis to do? If they're fortunate enough to live near a medical school, they can search the doctor list for generalists. Physicians in academic centers are encouraged to see patients as part of their duties, and they often have more time than their colleagues in the community. More important, patients can help themselves by knowing more about their bodies, how they work and what can go wrong with them.
But finally, patients will have to understand that finding a doctor who has the time to listen, diagnose correctly and then know how to treat them is going to get harder and harder. Reversing the trend away from patient-oriented and toward procedure-oriented medicine will require attention by legislators as well as medical educators. Reducing the debt of newly minted doctors who choose primary care might be one way of doing this. Cutting back on both the number of postgraduate training positions in procedural medicine and the salary paid such trainees, while raising the salaries of those in primary care, could be another.
None of this will happen, though, unless patients make their voices heard. Otherwise, they may just find themselves on their own the next time puzzling symptoms arise.
Benjamin H. Natelson is director of the Pain and Fatigue Study Center at Beth Israel Medical Center in Manhattan and author of "Your Symptoms Are Real: What to Do When Your Doctor Says Nothing Is Wrong."
© 2008 The Washington Post Company
In the Journals
Arthritis Rheum 2008;59:961-967.
Sleep Problems Exacerbate Symptoms of Fibromyalgia Syndrome
By Michelle Rizzo
NEW YORK (Reuters Health) Jul 31 - Results of a study published in the July 15th issue of Arthritis and Rheumatism suggest that patients with fibromyalgia syndrome (FMS), a chronic musculoskeletal pain disorder, have a high prevalence of sleep disturbances, and these problems play an important role in exacerbating their symptoms.
Dr. Silvia M. Bigatti, of Indiana University-Purdue University in Indianapolis and colleagues analyzed sleep, pain, depression, and physical functioning in 600 patients FMS patients. All patients completed a baseline assessment; 492 completed another assessment one year later.
"Problem sleeper" criteria were met by 96% of the patients at baseline and 94.7% at 1 year. In path analyses to assess the impact of baseline findings on 1-year values, the investigators found that none of the baseline variables predicted sleep. Baseline sleep predicted 1-year pain, baseline pain predicted 1-year physical functioning, and baseline physical functioning predicted 1-year depression.
"Past research in fibromyalgia syndrome had found a number of symptoms that are prevalent, including pain, reduced ability to perform everyday tasks, sleep problems, and depression," Dr. Bigatti said in an interview with Reuters Health.
"It has not been clear up to now whether one of these symptoms caused the others, because they are all identified at the same time and they are all related," she explained. "There are many practitioners that believe that it may be depression that causes fibromyalgia symptoms, which impacts how patients are treated in clinics. Our study shows that in fact depression is at the end of a cascade of symptoms, that begin with sleep problems."
"Our findings indicate that (this population) may benefit greatly from treatments, both medical and behavioral, geared toward improving sleep," Dr. Bigatti continued.
"Better sleep medications have been developed recently that may help this group particularly," she said. "Behavioral clinicians can teach these patients good sleep hygiene techniques that may work with the medication to improve sleep."
The researcher concluded that, "based on our findings, improving sleep will improve pain, functioning, and depression."
© 2008 Reuters
The next meeting will be Sunday September 21st from 2-4 PM at the Ridgewood YMCA. See schedule below.
This newsletter is intended for CFS & FM patients in the area of this support group. The purpose is to share information and support. If you have questions about meetings please contact: Pat LaRosa at firstname.lastname@example.org, Nancy Visocki at email@example.com, Judy Machacek at firstname.lastname@example.org or Frank Kawa at 201-768-4111.
Bergen County CFS/FM Support Group Meeting Schedule
September 21st: Our speaker will be Matt Fellner, a licensed acupuncturist from the Acupuncture & Wholistic Health Center, who will speak on acupuncture’s effectiveness in treating fatigue and pain, the most common symptoms of CFS and FM. He will also discuss how acupuncture can help you reduce stress, gain greater vitality and feel more energized.
October 19th: Open group discussion on Coping Techniques
November 16th: Our speaker will be Christine Clifton, a Personal and Life Coach. Christine is a professional woman who left the corporate world when she acquired Fibromyalgia and Chronic Fatigue Syndrome. She now coaches individuals and offers support group advice about issues relating to chronic illness. Her presentation will focus on communicating with others, finding new sources of energy and happiness within yourself for a new direction in life, and coping with the challenges of isolation and rejection by friends and family.
December 21st: Along with our meeting, we will have a holiday party! Everyone is welcome to bring their favorite dish to share, if you are able!
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