Bergen
CFS Support Group NewsletterApril 2004
Issue
#7
Bergen
CFS Support Group Newsletter
April Meeting
The monthly meeting, held on Sunday April 18th was a lively discussion of the NJCFSA conference held on Saturday 4/17. It was agreed that all the presenters were very informative, especially Susan Vernon, Ph.D. from the CDC. Dr. Vernon is the director of the Molecular Epidemiology Program and has been working on mocroarray analysis of genetic abnormalities in the blood of CFS patients. These studies have proven that there are differences between the “gene expression” in CFS patients as compared to healthy patients. It is unclear if these differences are the “cause” or the “result” of CFS. Because of this discovery, research will continue in this area and it is hoped that within five years there will be a clinical diagnostic tool to use in testing and treatment regimes. Current estimates show that there may be 800,000 cases of CFS with only about 15-20% having been diagnosed. Understanding the symptoms and finding effective treatment for CFS are important goals for doctors, researchers and patients alike.
A detailed explanation
of the process of a Neuropsychology exam was presented by Leo Shea,
Ph.D. of the
K. Kimberly Kenney is
the President and CEO of the CFIDS Association of America which is
located in
In other news, Lon Smith, Jr. is the new President of the NJCFSA, assuming the position Jonathan Sterling had filled when Ted Nielson could no longer continue in that position. (Thanks to Judy Machacek for this comprehensive article).
Judy’s report on the support group meeting
provided an excellent synopsis of the conference, so I will limit my
remarks to a few other notable moments of the day.
With recent news that the CFS name will remain
the same for the time being, NJCFSA President Lon Smith had a
suggestion for people with chronic fatigue syndrome.
He posed that the disease be referred to as “CFS” – much like
“MS”. If the listener asks the meaning of
the initials, the response could start with an explanation including: a
serious debilitating disease – which is sometimes known as Chronic
Fatigue Syndrome and that the name is very misleading.
This allows for an explanation before inaccurate conclusions on
the part of the listener.
Dr. Susan Vernon of the CDC definitely referred
to CFS as a “disease”. Most
of us have heard physicians refuse to give it disease status due to a
lack of known cause. It was very
satisfying to hear her repeated call is a disease.
It was equally encouraging to learn that the CDC is actively
involved in CFS research. Dr. Vernon gave
that agency a “face”- a real person letting us know we are not
forgotten.
Another speaker at the conference was Sinclair Smith, ScD. Who reported on another research project currently in progress - Neuromuscular function in CFS: Possible Influence of Oral Creatine Ingestion. Preliminary results indicate that oral creatine may have some beneficial effects but Dr. Smith stated that the results are not yet conclusive enough to be declared a definite benefit. He cautioned that anyone considering trying creatine should do it under the care and direction of a physician.
Points
to Ponder
The CFIDS Association of America has been
circulating the following request. It is
reprinted here for those of you who might not be receiving their online
newsletters.
Our new Grassroots Action Center is now
"live" at http://www.cfids.org. There you'll find ready-made
messages you can customize, links to your members of Congress (even if
you don't know who they are!), information about candidates for public
office and a directory of local and national press people.
Each week
leading up to May 12, CFIDS Awareness Day, we'll prompt you with new
campaigns designed to raise the profile of CFIDS among lawmakers,
public health officials and the media. Today's Action Alert!
targets members of Congress. Just click on the
When our four-week campaign ends you'll still
have the opportunity to participate in these efforts, however our
notices will not be posted in your monthly CFIDSLink e-newsletter. You
can elect to receive Action Alerts! as they are issued by
signing up for our
Flex your advocate muscle and make sure our
taxes support a cause we all care about deeply - chronic fatigue and
immune dysfunction syndrome.
K. Kimberly (Kenney) McCleary
President & CEO
The CFIDS Association of
CFS Awareness Day is May 12th. Governor McGreevey
has declared May to be Chronic Fatigue Syndrome Awareness
Month. This is the time for each of us
to reach out and educate those around us. The
Proclamation reads as follows.
WHEREAS, Chronic fatigue Syndrome(CFS) is a
debilitating illness often interrupting the education or employment of
patients, complicating their family and social lives, and causing an
accumulation of medical expenses; and
WHEREAS, Chronic Fatigue Syndrome is a complex illness
that affects many different body systems and is characterized by
disabling fatigue, a variety of neurological problems and other
physical dysfunctions often sufficient to qualify severely afflicted
patients for Social Security Disability and/or private long-term
disability insurance benefits; and
WHEREAS, the Center for Disease Control (CDC) has
designated CFS as a “serious public health concern,” which affects
800,000 Americans, and the National Institutes of Health (NIH) continue
to investigate and document frequency and spread of this syndrome; and
WHEREAS, the State of New Jersey is pleased to join the
New Jersey Chronic Fatigue Syndrome Association (NJCFSA, Inc.), a
non-profit corporation promoting programs and support groups throughout
the State, and with all CFS patients who must struggle daily to cope
with the illness and disability, in celebrating a special month devoted
to increasing knowledge and understanding about CFS and in supporting
valuable research in this State into its causes and cure;
NOW, THEREFORE, I, JAMES E. McGREEVEY, Governor of the State of
as
Chronic Fatigue Syndrome Awareness Month
in
Literature Review
|
From Current Opinion in
Rheumatology Effectiveness
of Exercise in Management of Fibromyalgia Posted Susan E.
Gowans; Amy deHueck |
for complete
article go to: http://www.medscape.com/viewarticle/470554?mpid=26737
Purpose of
Review: Exercise
was established as an integral part of the nonpharmacological treatment
of fibromyalgia approximately 20 years ago. Since then many studies
have investigated the effects of exercise-either alone or in
combination with other interventions. This review will discuss the
benefits of exercise alone and provide practical suggestions on how
patients can exercise without causing a long-term exacerbation of their
pain.
Recent Findings: Short-term exercise programs for individuals
with fibromyalgia have consistently improved physical function,
especially physical fitness, and reduced tenderpoint pain. Exercise has
also produced improvements in self-efficacy. These effects can persist
for periods of up to 2 years but may require participants to continue
to exercise. Most exercise studies have examined the effects of
moderately intense aerobic exercise. Only in the past 2 years have
muscle-strengthening programs, in isolation, been evaluated. To be well
tolerated, exercise programs must start at a level just below the
capacity of the participants and then progress slowly. Even with these
precautions, exercise may still produce tolerable, short-term increases
in pain and fatigue that should abate within the first few weeks of
exercising.
Summary: Future studies should investigate the possible benefits
of low-intensity exercise and test strategies that may enhance
long-term compliance with exercise. Individuals with fibromyalgia also
need to be able to access community exercise programs that are
appropriate for them. This may require community instructors to receive
instruction on exercise prescription and progression for individuals
with fibromyalgia.
Next Meeting
The
next meeting is scheduled for
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 annie.laurie2@verizon.net.