Bergen CFS Support Group Newsletter
The March meeting saw the return of Ken Andes, who continued our pursuit of complementary therapies. Ken told the group that Tai Chi and herbs appear to be more beneficial than Acupuncture for people with CFS/FM. He explained that herbal therapy is individualized for each person. After basic information about Tai Chi, the group was led through a sample session. Ken Andes has found that five basic moves practiced on a regular basis can improve both balance and stamina in many people. It is hard to believe that these low impact slow rhythmic movements can translate into increased energy as well as serenity.
Editor’s Note: While Tai Chi is soothing and relaxing, it does create an energy boost. Since many of us already have a problem in the area of sleep, some people might find it better to avoid doing them just before going to bed.
The following information is presented for those of you who might not have received the conference flyer. If you have never gone to a conference, you are encouraged to consider attending. Just to be in a room with numerous people with CFS, as well as many understanding healthcare providers is exciting. The organizers try to make accommodations to keep stress to a minimum. Bring a friend who is healthy. He/she can drop you at the door before they park the car. By attending with you, your companion will learn about your disease and what is being done in the medical community.
13th ANNUAL NJCFSA CONFERENCE in cooperation with Robert Wood Johnson University Hospital Community Education Department
Chronic Fatigue Syndrome Update on Research and Care
DATE: Saturday April 17, 2004
SITE: Schwartzman Courtyard, Robert Wood Johnson University Hospital
New Brunswick, New Jersey
TIME: 11:00 AM to 4:15 PM
FEE: Patient/Family: $30 per person, call (732) 418-8110
Health Care Professional: $45 per person, check payable to UMDNJ-CCOE, PO Box 1709, Newark, NJ 0701-1709 or fax it to (973)- 972-7128
Health Care Professionals Call: (732) 235-7430
Patients/Family Members Call: (732) 418-8110
Registration / Light Refreshments / Exhibits
12:00 pm Welcome & Introduction
Moderator: Karen W. R. Lin, MD, MS
Assistant Professor of Family Medicine
UMDNJ-Robert Wood Johnson Medical School
New Brunswick, NJ
12:15 Unraveling the Causes of CFS in the Post-Genomic Era
Suzanne D. Veron, PhD
1:00 The Role of Neuropsycholgy in CFS
Leo J. Shea, III, PhD
1:45 Award Presentation/Break
2:15 Advancing our Understanding of CFS Through
Education, Public Policy, and Research
K. Kimberly Kenney
3:00 Neuromuscular Function in CFS: Possible Influence of
Oral Creatine Ingestion
Sinclair A. Smith, ScD
4:45 Questions & Answers
About the Presenters…
K. Kimberly Kenney is President & CEO of The CFIDS Association of America in Charlotte, NC. For 13 years, Ms. Kenney has managed the Association’s educational, public policy, and research programs, which seek to bring an end to CFIDS and the suffering it causes. She played a key role in restoring CFS research funds by the Centers for Disease Control to the CFS research program. She also worked closely with the Social Security Administration to issue a ruling identifying CFS as a potentially disabling condition, making it easier for disabled CFS patients to gain access to federal disability benefits.
Leo J. Shea, III, PhD is Clinical
of Rehabilitation Medicine at New York University School of Medicine
staff psychologist at the Rusk Institute of Rehabilitation Medicine.
is President of Neuropsychological Evaluation and Treatment Services,
which provides diagnostic, training, & rehabilitation treatment
the fields of CFS, Lyme disease, forensic head injury, post-traumatic
and executive life. In addition to holding multiple Master’s Degrees in
counseling psychology, Hispanic pastoral ministry, and
clinical psychology, Dr. Shea received his doctorate from Miami Institute of Psychology with dual specialties in clinical psychology and clinical neuropsychology.
Sinclair A. Smith, ScD is an Assistant Professor at Temple University in Philadelphia, PA, and the Director of the Neuromuscular Function Laboratory in the Department of Occupational Therapy. Dr. Smith received a Doctor of Science from Boston University. During 2001-03 Dr. Smith studied whether CFS is associated with reduced blood flow capacity and determining if reductions in blood flow are associated with reductions in skeletal muscle metabolic capacity in CFS. In 2003-04 he was awarded a pilot grant by the Pennsylvania Department of Health as the principal investigator to study the effects of oral creatine ingestion on neuromuscular function and symptom severity in persons with CFS and controls. He is currently working on a similar multi-year NIH grant to study creatine ingestion in persons with CFS.
Suzanne D. Vernon, PhD directs the Molecular Epidemiology Program (MEP) in the Viral Exanthems and Herpes Virus Branch at the Centers for Disease Control and Prevention in Atlanta, Georgia. Under Dr. Vernon’s leadership, the MEP objectives are to characterize CFS at a systems biology level by using genomics, proteomics, physiology and population based epidemiology. Dr. Vernon’s ultimate goal for the MEP is biomarker discovery, development of a
diagnostic assay, and understanding of the pathogenesis of CFS.
This article is a few years old but offers a view of a compassionate physician. It is from the site: http://www.anapsid.org/cnd/diagnosis/frustrations.html
Frustrations of a Physician Treating Chronic Fatigue Syndrome
Patricia M. Salvato MD, The Houston CFIDS Herald, March 1996
This year I enter my 11th year of practice. Some call me an HIV specialist while others call me a Chronic Fatigue Syndrome specialist. Although these two groups of patients make up a large majority of my practice, I also have a very active Internal Medicine practice including over 100 nursing home patients. I consider myself a specialist in Internal Medicine. Perhaps no other training would have prepared me more for my future as a practitioner in Chronic Fatigue Syndrome than my Internal Medicine training.
The practice of medicine is an art which is far more than the application of scientific principles to a particular biological model. Its focus is on the patient whose welfare is the continuing purpose. That purpose of medicine is self-evident in theory, but more difficult to sustain under the pressures of medical practice. This is no more true than in the field of CFS which for years has been both ignored and ridiculed by a large part of the medical community.
I was asked to write about the frustration in treating patients with CFS. Many superficial hassles immediately comes to mind--lists of endless symptoms; pages of questions without answers; disability letters and repeat disability letters and repeat disability letters; medical necessity letters to insurance companies; applications for disabled parking permits; letters to families, schools, employer, court, attorneys, and other doctors explaining the physical limitations of patients with CFS. As I think on a deeper level, however, the main frustration seems to center around my feelings in treating the disease rather than the increased work load of endless paperwork and extended office visits. Perhaps the thing that comes to mind most is that as a physician I was taught that to be a "good doctor" was to "cure" disease. The patient comes to the doctor with a medical problem such as a sort throat, you give them an antibiotic, and two days later they are well. In my medical training, little time was devoted to managing the day-to-day care of a relapsing and remitting disease, where no cure was in sight and where patients did not get better over time but also did not die. Yes, I was exposed on many occasions to the dying cancer patient and in more recent years to the dying AIDS patient, but very rarely to the patient forced to live with a chronic debilitating disease that is poorly understood by the medical profession, family, the community, and even the patient's themselves.
In the first five to six years of dealing with CFS patients, I often left the office for the day feeling like a failure. Maybe one out of thirty patients actually would say they felt better. I didn't really get it that they didn't have to feel better for us to have a good physician/patient relationship. What I did learn was that the patients wanted to be listened to, so that their fear and concerns could be fully expressed and the burden shared. They wanted me to be interested in them as fellow human beings in a compassionate but non-judgmental fashion. They expected professional competence incorporating the best in medical science and technology. They wanted to be reasonably informed as to the probable cause of their concerns and what the future was likely to hold. They wanted not to be abandoned. They did not expect to be cured, only I had expected to cure them. There is a certain mystery here, and it is an aspect of medicine that has been forgotten by too many physicians. Sir William Osler used to teach that if a physician made himself/herself available as a source of hope and strength to the patient, even with an incurable illness, without the use of medicine or fancy technology, these acts of professional skills alone could turn the tide. I believe these things, even though I do not understand them.
Chronic Fatigue Syndrome has been the focus of increasing national and medical attention over the past decade. A growing number of research investigators are seeking to unravel the interrelationship of the psychologic, immunologic, neurologic, and endocrinologic abnormalities associated with this debilitating disorder. Considerable misinformation still exists regarding the appropriate evaluation and management of the patient. CFS has lead to a necessary new paradigm in take doctor/patient relationship, one in which related information and knowledge have become recognized as critically important tools of healing. The nature of this disease and the fact that no single treatment provides a cure--brings doctor, patient, and loved ones into near constant discussion of a bewildering array of therapies. There is no FDA-approved treatment for CFS. However, there are a variety of both symptomatic medication as well as holistic approaches which have empowered people living with a CFS to take charge of their health. The physician must rely on his/her knowledge and judgment in assessing the risks versus benefits of treatment for each individual patient. One of the greatest lessons I have learned in treating CFS has been the realization that well-informed patients simply make better partners in health-care, and, when knowledge is shared, everyone benefits; there is an unbelievable amount of healing in just the sharing of new knowledge.
Chronic Fatigue Syndrome presents a major public health problem for the 1990s, affecting more than a million people around the world. CFS can strike suddenly and linger for years, threatening personal relationships and careers. And devastating a person's life. Still, a large proportion of the medical community refuses to recognize the suffering it can cause. Patients with this disease cope not only with the illness itself but with the high medical bills, insufficient insurance coverage, and a tragic lack of emotional support often from physicians, caregivers, and even loved ones. Social security disability payments are hard to obtain and the fear of their unknown future looms daily.
Another source of frustration in treating CFS patients has come from my relationships with my peer-physicians over the past 11 years. The first 5-6 years were the most difficult, with the last five years a definite trend toward at least receiving recognition of the disease by many physicians. I have found that the best way to "educate" a disbelieving physician about the disease is to actually send them a CFS patient for evaluation of a specific problem, such as gastrointestinal, cardiac, or neurologic. More often than not, the response that I get is "you know, that patient is really sick." I am still amazed when they are so surprised. My own experiences with CFS have convinced me beyond doubt that it is an organic medical illness. I have seen an array of patients from all different walks of life, including housewives, blue-collar workers, athletes, physicians, nurses, educators, accountants, and lawyers. In general, these people had been productive, on-the-go people, cut down in the prime of their lives.
This year has been the most rewarding in CFS, especially in view of the CDC's new role in the recognition of this disease and attempts at dispelling the popular belief that CFS is a benign, self-limited disease that affects only whites with high incomes. Dr. William Reeves, head of the infectious diseases section of the Centers for Disease Control, has reported that only 12% of the patients with this disease ever fully recover. CDC officials have recently added CFS to the list of Priority 1 - New and Emerging Infectious Diseases [listing]. An NIH conference sponsored for physicians treating this disease was held this past year, the purpose of which was to identify outcome measures to be sued in the evaluation of clinical trials. Based on rigorous discussion of outcome measures, clinical studies are now being initiated in this devastating disease. Now more than ever, physicians and scientists are absorbed in scientific efforts to understand the etiology, epidemiology, and pathology of CFS, a complex, multi-system illness. For the physician or researcher willing to tackle this exasperating illness, the payoff is the opportunity to unravel an unsolvable medical mystery and thus preserve the passion of medicine.
I'd like to close by saying that my CFS patients have been a continued source of encouragement to my in my practice. I receive many letters and cards of appreciation from my patients. This past Christmas, I received a book from one of my CFS patients entitled When You Wish Upon A Star. The marker was placed in by a saying by O. S. Marden, which, in my mind, goes to the essence of being a physician treating this disease:
"There is no medicine like hope, no incentive so great, and no tonic so powerful, as expectation of something tomorrow."
My expectation of something tomorrow is a better understanding of the cause of this debilitating disease and the possibility of a treatment capable of returning patients to their lives and their dignity.
Humor is a vital part of good health. Sometimes we need to take a break and laugh. Those of you who have had sleep studies will appreciate this slightly distorted view of the event. For those who have not had the experience, please laugh along with us and know this is just one person’s look-back-and-laugh. It is from the following site. http://www.tertius.net.au/foothold/humour/sleep_study.html
I'd get more sleep if I could work nights. -- Thorfinn
Written by Angela Ingram, May 2003.
For anyone about to have sleep studies done I recommend this "dry run" to get you in the mood:
1. Dig out your just recently put away [Christmas] tree lights.
2. Either superglue or tape them to yourself (preferably both since that would be more realistic) not forgetting to stick some under your chin, a few on your scalp and a couple over your eyes.
3. Find a new clothes peg and insert your right index finger until you are just on the verge of wincing and clip it onto one of the leads from the lights.
4. Next take two bum bags (or fanny packs which my Canadian husband is now realizing he CANT say) fill them with small marbles and wrap one around your stomach and the other just below your breasts. Likewise attach those to the [Christmas] light leads as well.
5. Find that old yoga mat, wrap it in a tarp and place on the kitchen table - simulating the depth and height of the "bed" and find that threadbare cotton blanket you now use as a drop sheet.
6. Turn your air-conditioned on to subarctic and if you don't have aircon, just open up all the doors and windows so you feel like you are outside.
7. Wear "what you would normally wear to bed". So since I normally don't wear anything - find the most concealing, constrictive pair of crinkly, twist around you pajamas you have, remembering to drag all the leads up from your legs, out through your waist band, up over your chest and out the neck hole.
8. Now sit and act "normal" for as many hours as you need to feel ready for sleep.
9. Give up on trying to feel normal and get onto the "bed" far earlier than you would ever dream of sleeping (hah that was a funny) and get someone to tape the loose ends of the leads to a point which gives you enough room to turn over ONCE and only in one direction.
10. Remember they want you to feel comfortable, relaxed and secure so you have a typical night's sleep. \
Points to Ponder
try to take one day at a time,
but sometimes several days attack me at once.
The next meeting is scheduled for Sunday April, 2004 at 2 PM at Pascack Valley Hospital. It will be an open sharing session and Anne will review the previous day’s conference. We hope you will be there.
This newsletter is intended for CFS patients in the area of this support group. The purpose is to share information and support. If you have questions about meetings please contact Group Leader Anne at firstname.lastname@example.org.