Vol. III, Issue #21
Bergen CFS Support Group Newsletter
We had a great turnout for our first meeting of the fall season! Many familiar faces and a few new ones enjoyed our guest speaker, Beth Sorger. Beth is a traditionally-trained psychotherapist who uses Energy Psychology with Emotional Freedom Techniques (EFT). In a workshop-like atmosphere, Beth showed us one example of EFT called “Tapping”. A series of acupressure points on hands, face, and chest can be gently “tapped” using ones fingertips. The rhythmic tapping, along with a verbal and emphatic repetition of acknowledgment, and acceptance of the problem, acts on the meridians of the body to release emotional and physical pain. In our session, we tested this technique by holding a piece of candy as a temptation. After tapping, most people could easily turn away from the food-craving. Another example involved identification of a specific source of pain, and some relief was experienced by almost everyone. Beth has worked with individuals with chronic illness including CFS and Fibromyalgia and has found that Tapping, and other types of EFT can be easy to learn, and quickly help to manage problems without medications.
To learn more about this therapy,
check out www.emotionalfreedomtechnique.com. Beth
Sorger practices in
An announcement was made that the Fall
NJCFSA Conference will be held on
Note: Thanks go to Judy Machacek for writing this meeting report in my absence. Pat
For years, many doctors and
others dismissed people with Chronic Fatigue Syndrome as depressed,
lazy, or just plain whiny. Now, a slew of research -- more than 2,000
scientific papers by some counts -- is suggesting that chronic fatigue
is not a psychiatric illness, but a nasty mix of immunological,
neurological, and hormonal abnormalities. Several
types of brain scans, for instance, have found different patterns of
blood flow to certain regions of the brain in patients with chronic
fatigue, and other studies have shown that patients have difficulty in
thinking and processing information, and are unable to do several
mental tasks at once. ''There are
objective brain abnormalities in many patients with CFS that are
consistent with the symptoms patients describe," said Dr. Anthony
Komaroff, a chronic fatigue expert and editor-in-chief of Harvard's
Health Publications, a division of
Chronic fatigue, which has no
known cure, is more than feeling tired all the time. Definitions vary,
but the one the federal government uses says it is characterized by
persistent, unexplained fatigue lasting at least six months, as well as
four of the following: sore throat, tender lymph nodes, muscle pain,
multi-joint pain, headaches, unrefreshing sleep, malaise after
exercise, and impaired memory or concentration. The
syndrome -- which can come on after an acute infection, a head injury,
a major life stress, or from no obvious triggers at all -- now affects
800,000 to 2.5 million Americans, most of them women, said Dr. William
Reeves, chief of CFS research at the federal Centers for Disease
Control and Prevention. But the ailment is
tricky to diagnose because its symptoms overlap with those of other
conditions such as depression, Gulf War Syndrome and fibromyalgia. A
federal study now underway is designed to measure the activity of
thousands of genes in 190 people, some with CFS, some without, to find
a distinctive genetic fingerprint for chronic fatigue.
The goal, said Reeves, is a blood test for chronic fatigue. ''This illness is a nightmare that is
extraordinary," said Dr. David Bell, a specialist in
Jean Harrison, 52, a
former art restorer who lives in
Jean Harrison's perplexing response to exercise is also typical of many chronic fatigue patients, perhaps because in them, exercise triggers the release of fatigue-inducing immune chemicals called cytokines. People with the syndrome sometimes can exercise as hard as healthy people -- they just feel awful for a day or two afterward, Reeves said. ''There is considerable evidence from published studies that in CFS the immune system is overactive," said Komaroff.
Given the complexity of
Chronic Fatigue Syndrome, perhaps it's not surprising that treatments
are piecemeal and not very effective and that some doctors get almost
as discouraged as their patients. ''Very few doctors are willing to
care for CFS patients because it is such a downer," said Dr. Hugh
Calkins, director of electrophysiology at Johns Hopkins Medical
Still, experts point to remedies that may help relieve some of the symptoms. In doses five to 10 times lower than those used for depression, tricyclic antidepressants, like Elavil, can improve sleep, said Komaroff. And cognitive behavior therapy, which teaches people to re-evaluate their negative thoughts and behaviors, does help some people with CFS to use optimally the little energy they have. But mostly, it's a game of patience -- and hope, that the strides in research will translate into better diagnosis and ultimately, better treatments, for chronic fatigue.
Judy Foreman is a freelance columnist who can be contacted at firstname.lastname@example.org.
2005 The New York
While this service is available to a limited group of people, you might be one of those who can benefit from this agency. Please go to the website to learn more. It was brought to this editor’s attention by someone who has used the service and was pleased with the work and the assistance.
The Chore Service helps senior citizens (age 60 and over) and disabled homeowners of all ages remain safe and secure in their homes by performing minor household repairs that they can neither do themselves nor get anyone else to do. Services are provided by Chore’s crew of 21 volunteer handypersons working as teams with paid drivers. There is no charge for Chore’s services, but clients are expected to pay for the parts necessary to complete the repair.
What Chore Can Do For You
Services are provided for senior citizens (age 60 and over) and for people of any age with disabilities. Work is done by volunteer handymen who want to help others. The Chore crew will determine if a particular project is beyond their expertise.
Minor Plumbing - Repair leaking faucets - Repair leaking toilets - Replace washer hoses
Minor Electrical – Replace outlets - Replace light switches and plugs - Replace or repair door bells - Replace light
bulbs - Replace existing light fixture (if appropriate)
Repair or Replace - Door locks, handles, springs and closers - Filters and batteries
Install – smoke alarms - Carbon monoxide alarms - Grab bars in bath area - Internal railings - Air conditioners (also
remove) - Storm windows/screens (also remove)
What Chore Cannot Do For You
is unable to service emergencies.
Chore does not do outdoor work, painting, tiling, door or window replacements, work requiring high ladders, heavy lifting, new wiring or appliance repairs.
Repairs for apartment dwellers are limited to personal items only.
If you need the name of a licensed plumber, electrician or other skilled worker, consult the Yellow Pages.
To Schedule a
The wait for a service call can be more than two weeks.
Please consider attending this conference. It is an opportunity to hear some of the people who work so hard on our behalf. Complete information is available on the website www.njcfsa.org.
FEE: $30 per person (parking is free)
REGISTRATION INFO: (609) 219-0662
– Registration & Exhibits
Introduction & Welcome
CFIDS and Diastolic Cardiomyopathy
Paul Cheney, MD, PhD, Director of The Cheney Clinic in Wilmington, North Carolina and pioneering clinical researcher in field of CFS.
Educating the Child with CFIDS
Shanon McQuown, Special Education Coach and author of recently published book “Harnessing the Wind: Chronic Fatigue Syndrome and My Son.”
Break – Light Refreshments
News Update on CFS and Related Disorders
Susan Levine, MD, FAAP, Board Certified
Internist and Infectious Disease Specialist; CFS Clinician and
Researcher, Private Practice,
Questions and Answers
The following is from "The National Forum" - Spring 1998.
1. The 50-foot crawl (land,
2. The pole's fault
3. The parallel blahs
4. The warm-bath-lon
5. The cookie toss
6. The short fall
7. Synchronized swooning
8. The just plain downhill
9. The disc drop
10. The totally shot put
11. The 10-meter nose-dive
--Anonymous PWC Olympian
At the end of this newsletter is a form that has been forwarded to our group by the NJCFSA (New Jersey Chronic Fatigue Syndrome Association). It is a Good Doctor Recommendation Form. The NJCFSA Trustees are currently updating the outdated lists. If you are fortunate enough to have a caring and understanding physician who works to help you cope with CFS, FM, or MCS (Multiple Chemical Sensitivity), please consider completing the form and submitting it to the address provided. It is further suggested that everyone save a copy of the form for future use. So many people lack compassionate care from a physician who understands the intricacies of these illnesses.
The next scheduled
meeting will be on Sunday October 15th. Our speaker will be Tracey Gold, CMA, from the
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 email@example.com or firstname.lastname@example.org. Subscription problems: Nancy Visocki at email@example.com. Editor: Pat LaRosa at firstname.lastname@example.org.
the best resources, which the NJCFSA provides for patients with CFS
(CFIDS), Fibromyalgia (FM) and Multiple Chemical Sensitivities
patients, is the physician recommendation list. This list of physicians
personally recommended by our members is held by the support group
leaders and by the person who answers calls on our ‘Help line’. Many
patients are very grateful for this information. Our current list is
now out of date. Physicians may have moved, retired or changed the
focus of their practices. New physicians
with expertise in CFS/FM may have recently established practices within
If you can recommend your doctor or more than one doctor, please take a few minutes to fill out the questions in the box and return it to the address given below. We would like to include on our list recommendations of physicians who are specialists in different branches of medicine, such as Rheumatology, whom you personally know are sympathetic to the problems encountered by CFS, FM, or MCS patients and are willing to assist in the medical treatment of these patients.
Please copy this form if you have more than one recommendation.
Physician’s Name: ____________________________________________________
Medical Specialty: __________________________ Board certified: Yes [ ] No [ ]
Office Address: ______________________________________________________
City, State, Zip: ______________________________________________________
Check all that apply to this physician:
return this form to: NJCFSA Inc.
The information in this referral form will be used only to make the Physician referral list for the use of our members. We will obtain the permission of all recommended Physicians before they are put on the list. Patients using the list must make their own inquiries as to whether the recommended Physician takes their insurance or Medicare assignment, or if their HMOs will refer them.