October 2006
Vol. IV, Issue #33
Bergen CFS-FM Support Group Newsletter
Meeting
Report
The
Bergen Group
continues to grow. It is wonderful to know that people are
seeking help
and that our meeting postings are being discovered. The October
meeting
featured guest presentations of two alternative therapies for CFS and
FM.
Dorene
Krause is
an accredited Tai Chi Chih instructor. This form of Tai Chi is
particularly gentle and many CFS and FM patients find it very
helpful.
Dorene had the members try several moves to get the feel for this
method of
“movement”. Dorene teaches classes through The Valley
Hospital. The
one hour classes cost $50 for an eight week session. They are
held at the
Luckow Pavilion of
Classes
scheduled at this time:
Beginner – starting Tues. Nov. 14th at
Tues. Nov.
14th
at
Thurs. Nov. 16th
at
Beyond Beginner Thurs. Nov. 16th at
Marianne
Nystedt
is an accredited Healing Touch practitioner. She demonstrated the
non-touch procedure that is said to sweep away the particles that are
interfering in normal body activity. Pairs of members then tried
it on
each other. Marianne can be reached at 201-244-6864.
Those
in
attendance agreed that non-invasive methods, that do not require the
ingestion
of additional meds or supplements might be worth trying.
The
Conference
was a huge success due to the efforts of Judy Machacek and her
committee.
It was wonderful to see so many members of the
CFS Awareness
By
the time this
newsletter is sent, the National Press conference on CFS Awareness will
have
taken place. The following article from www.cfids.org
explains the CFS Advisory Committee and its activities. It has the
potential to
have a major effect on CFS acceptance and research.
CFS
Advisory Committee to Meet
The
Department
of Health and Human Services Chronic Fatigue Syndrome Advisory
Committee
(CFSAC) will meet next on
For more information about the CFSAC visit http://www.cfids.org/advocacy/CFSAC.asp.
The CFIDS Association's meeting reports, dating back to 2003, are
available at http://www.cfids.org/advocacy/meeting-updates.asp.
[Federal
Register:
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr28se06-66]
-----------------------------------------------------------------------
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Meeting of the Chronic Fatigue Syndrome
Advisory Committee
AGENCY: Department of Health and Human Services, Office of the
Secretary, Office of Public Health and Science.
ACTION: Notice.
-----------------------------------------------------------------------
SUMMARY: As stipulated in the Federal Advisory Committee Act, the U.S.
Department of Health and Human Services is hereby giving notice that
the Chronic Fatigue Syndrome
Advisory Committee (CFSAC) will hold a
meeting. The meeting is open to the public.
DATES: The meeting will be held on Monday and
2006
ADDRESSES: Department of Health and Human Services; Room 800
FOR FURTHER INFORMATION CONTACT: CDR John Eckert; Acting Executive
Secretary, Chronic Fatigue Syndrome
Advisory Committee; Department of
Health and Human Services; 200 Independence
Avenue, SW., Room 716G; Washington, DC 20201; (202) 690-7694.
SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002
to advise, consult with, and make recommendations to the Secretary
through the Assistant Secretary for Health, on a broad range of topics
including (1) The current state of knowledge and research about the
epidemiology and risk factors relating to chronic fatigue
syndrome, and
identifying potential opportunities in these areas; (2) current and
proposed diagnosis and treatment methods for chronic fatigue
syndrome;
and (3) development and implementation of programs to inform the
public, health care professionals, and the biomedical, academic, and
research communities about chronic fatigue
syndrome
advances.
The agenda for this meeting is being developed and
will be
posed on
the CFSAC Web site, http://www.hhs.gov/advcomcfs,
when it is finalized.
Public attendance at the meeting is limited to space
available.
Individuals must provide a photo ID for entry into the meeting.
Individuals who plan to attend and need special assistance, such as
sign language interpretation or other reasonable accommodations, should
notify the designated contact person. Members of the public will have
the opportunity to provide comments at the meeting. Pre-registration is
required for public comment by
wishes to participate in the public comment session should call the
telephone number listed in the contact information to register. Public
comment will be limited to five minutes per speaker. Any member of the
public who wishes to have printed material distributed to CFSAC members
should submit materials to the Acting Executive Secretary, CFSAC, whose
contact information is listed above prior to the close of business
Dated:
CDR John J. Eckert,
Acting Executive Secretary, Chronic Fatigue
Syndrome
Advisory
Committee.
[FR Doc. E6-15924 Filed
BILLING CODE 4150-42-P
Coping
This
article was printed in the November 2005 issue of this
newsletter. We
have many new members who might benefit from it, so it is being
repeated.
I am sure many of us need refreshers on coping.
http://www.lieye.com/articles/energy%20saving/living_with_cfids.shtml
LIVING WITH CHRONIC FATIGUE IMMUNE DYSFUNCTION
SYNDROME
by
While the holidays place a burden on virtually everyone, those with
chronic
illness often pay a higher price when additional stress enters their
lives. We
with chronic illness and low energy may experience frustration, anger,
sadness
and disappointment, especially as we remember past holidays when we
were well.
Here are some additional suggestions for those with chronic
illness to
help them cope with and enjoy their holidays:
GIFT GIVING:
·
Plan
early to avoid a "time crunch" that could easily send you back to bed.
·
To
avoid the crowds, if you are a "crafts" person, try making gifts for
your loved ones, such as a personalized ornament or decorative picture
frame.
·
If
you like to bake, you might find a simple cookie or brownie recipe.
Wrapping a
batch in decorative colored plastic wrap and ribbons could make a
beautiful
gift.
·
You
might try your hand at making greeting cards using a computer program,
an
Internet site, or just using good old colored construction paper and
markers.
·
Send
cards through a site online.
PARTICIPATE IN
·
Having
company come to your home may ease the stress of having to go out to a
party or
having to drive long distances to see relatives. You can be in the
comfort of
your own home and be able to sit or lie down if need be.
·
If
there is a party that is particularly important for you to attend, try
to get
as much rest as possible beforehand.
·
Pace
yourself throughout the days prior to the party so that you conserve
your
energy in order to be able to be a part of the festivities.
·
If
you have food sensitivities, check with the host before the party about
what
foods will be served. Offer to bring a dish that you know you can enjoy.
·
If
you have pet allergies, be sure to ask the hosts in advance if they
have any
pets.
·
If
you think you may become ill, go anyway for a short time. (If you start
to feel
ill while at a party, you can leave early.)
·
If
you find that the noise, crowds, or lights bother you, ask the host
where you
may be able to sit or lie down that is out of the way, quiet, and
private in
order to recuperate.
·
Bring
with you all of the things that you might need to help you feel well
while you
are there. (These might include certain medications, supplements,
clothing for
warmth, a water bottle, and the like.)
LESS STRENUOUS, LESS STRESSFUL ALTERNATIVE ACTIVITIES:
·
Go
out to eat with a few friends or family members and exchange gifts in a
restaurant. This will eliminate the planning, hosting, and cleaning up,
as well
as the long drive, crowds, and the need to stay for an extended period
of time
at someone else's house.
·
Take
a drive, or have someone else drive you through neighborhoods
exhibiting
colorful holiday lights and displays.
·
You
can also note when your favorite holiday television shows are on and
invite a
few friends or family members over to join you for a casual viewing
session.
·
If
that still seems like too much, you can curl up with a warm blanket and
a mug
of hot tea, and watch on your own.)
·
Play
some holiday music to add cheer to your season.
·
Due
to the unpredictable nature of chronic illness, flexibility is key
here. Stay
creative with options. If one thing doesn't work out, try to have a
back-up
plan. For example, If you feel too ill to attend the big family party
on a
given day, you could possibly arrange a time to call and speak with
your loved
ones on the phone.
Overall, try to accept where you are now, that you can't do what you
used to
do, or all that you may want to do. Not only will it make your holidays
less
stressful and more manageable, but will make the events and activities
you engage
in more meaningful. Happy and Healthy Holidays!!
For Your
Information
1)
One of our
members wishes to share information about a site she has found.
She
writes “The administrator who
runs a
cfids message board (www.cfs-info.com)
has asked me to invite others from the group to join the board.
We are a
small but friendly group who all share cfids in common, and have made
great
friends on these boards. This would of course be an adjunct to
our
group.” [As an organization, the Bergen Support Group does not
necessarily endorse it, but offers it as a sharing from a fellow
member.]
2) It has also
come to our
attention that November is Gluten Awareness Month. People with
CFS often
have overlapping symptoms as described in the following article from www.cfids.org.
GASTROINTESTINAL
PROBLEMS AND CHRONIC FATIGUE SYNDROME
Many
persons with chronic fatigue and immune dysfunction syndrome (CFIDS)
report
gastrointestinal problems, including nausea, abdominal cramping,
constipation,
diarrhea and/or alternating constipation and diarrhea. When these
symptoms are
present concurrently, they meet the diagnostic criteria for irritable
bowel
syndrome (IBS).
IBS
is not
an inflammatory disease, such as ulcerative colitis, and therefore does
not
produce serious, long-term effects. It is, however, a painful disorder
that can
limit activities when symptoms are severe. The cause of IBS is unknown,
but is
thought to be triggered by food sensitivities and/or stress. A first
line of
treatment consists of diet modification after determining
problem-causing
foods.
Problem
foods can often be determined by following an elimination diet. An elimination, or
challenge
diet, is used to identify foods and food additives that may be causing
symptoms. When symptoms subside for at least 48 hours, then foods can
be
reintroduced into the diet slowly, one at a time every several days, to
observe
for reappearance of symptoms. The diet begins by eliminating numerous
foods,
including (but not limited to):
- dairy
products
- gluten
(this includes foods containing wheat, oats, rye, barley and other
grains)
- red meats, lunch meat,
hot dogs other processed meats
- alcohol
- caffeine
- citrus fruits and
drinks, other fruit drinks, strawberries and dried fruit
- chocolate
- MSG, food colors and dyes
Multiple treatment
options for
IBS are available and include several types of medications:
antidiarrheals,
antispasmodics, fiber supplements, acid suppressors, antidepressants
and a
relatively new medication (Zelnorm) for people with chronic
constipation as
their primary bowel symptom. Stress management, either alone in
combined with
SSRI antidepressants, has been shown to be helpful for a number of
people. Alternative
therapies, such as yoga, tai chi or acupuncture, have been reported
to
relieve symptoms for some persons.
Weight loss can be a
side effect
of any gastrointestinal (GI) disorder, as the person avoids eating to
decrease
GI symptoms. When the diet is severely restricted, without attention to
nutritional needs, the person can become malnourished. Large meals
often
make symptoms worse and for that reason eating several small meals
throughout
the day can be helpful. A conversation with one's primary health care
provider
is important to help control symptoms. And a visit with a registered
dietitian
to learn how to meet nutritional needs and manage symptoms can be
beneficial.
Weight gain is reported
as an
unfavorable outcome of CFIDS for a significant number of people with
the
illness. This appears, in most cases, to be the result of decreased
activity
rather than increased calorie intake and it may be accelerated by
changes in
metabolism and brain chemistry brought on by the illness. Other factors
have
been implicated, such as thyroid dysfunction and medication side
effects.
Antidepressants and steroids are particularly problematic. Researchers
have
begun looking into physical exercise and its effect on CFIDS.
Finding
ways to comfortably increase activity within the capabilities of the
person
with CFIDS is a challenge for the individual, as well as care
providers. A
consult with a rehabilitation specialist, such as a physical or
occupational
therapist, may provide a highly personalized activity plan that is
achievable
and improves function.
Dietary supplements
that are
intended for weight loss or weight gain have been known to cause GI
symptoms in
some people, particularly diarrhea. These need to be taken with care to
prevent
a worsening of symptoms. And many other nutritional supplements,
purchased
over-the-counter, may come with fantastic claims for symptom relief or
a cure,
but may not be well studied or tested and need to be taken with
caution. It is
also wise that a person consult their physician, pharmacist
or dietitian
before consuming these products.
Gastrointestinal
symptoms
are frequently reported in children with CFIDS, and may
signal the onset of the illness. Parents will want to be alert for
other
symptoms that may indicate a diagnosis
of CFIDS.
Next Meeting
The next
scheduled meeting
will be on Sunday, November 19th. Many of our members
have
asked for information on the disability process which can be extremely
challenging. While not everyone is currently seeking disability,
it could
be useful information for all of us. The remainder of the meeting
will be
devoted to open discussion. We look forward to seeing you.
As
always, spouses and friends are welcome.
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: Pat LaRosa at pat@larosas.net,
Nancy Visocki at ngv.njcfsa@verizon.net, Judy Machacek at judymachek@msn.com
or Frank Kawa at 201-768-4111