From Our EMAILS and NEWSLETTERS
New DYNA 2002 Dysautonomia Video
Where and When to Attend a CFS/FMS Support Group Meeting
National FM Partnership
AACFS to be in Chantilly VA
*Deciding to File for Disability*
Coping Skills for Chronic Pain (ACPA)
What is CFS/CFIDS?
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Welcome to CFSupport Group News! To receive all
of our emails and newsletters, please join our email list and Yahoo!
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files, use our rideshare database as well as receive current updates of
CFS/M.E., fibromyalgia, and related illnesses. We keep the number of emails to
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Dysautonomia Video Now
The 2002 Youth Network Social Lecture by Dr. Blair Grubb is
now available for purchase.
This is a very informative session on dysautonomia that
the average person will be able to understand. It will be helpful to
families, school systems, and medical personnel who are interested in
learning more about dysautonomia. It is well worth the cost
and we highly recommend that each Youth Network Family order at least
one. You may actually wish to order one for your pediatrician as well.
The cost is $25, which includes postage and
handling. Mail your check or money order directly to the
address below. Be sure to include your full mailing address,
phone number, and the number of video's you wish to order and the year of the video.
Mail your order to:
Full Zoom Productions
5650 West Central Avenue, Suite E
Toledo, OH 43615
Check with Dysautonomia Youth Network (DYNAkids.org)
for articles, DVDs, Videos, and Summer Chill Events for Young People
with POTS- Postural Tachycardia Syndrome, NMH- Neurally Mediated
Hypotension, and other dysautonomias.
When and Where To Attend a CFS/FMS Support
We meet the third Saturday of each month between 2 and 4
p.m. in Room 5 of the Education Conference Center Building of Fairfax
Hospital. Use the blue entrance from Gallows Road.
Look for the small building on the left behind the gazebo.
Park in the employee parking lot.
Here's a tentative schedule for future meetings:
- October 19: Mind-body harmony
T. Cox, Doctor of Clinical Hypnotherapy (DCH), (703) 435-6002
- November 16: Gratitude meeting
- December 21: General discussion
Elly Brosius: (703) 968-9818
Toni Marshall: (410) 647-7578
PAPER Newsletter Editor
Margherita (Thanks to Margherita for working on Newsletters!)
"Everyone stumbles over the truth from time to
time, but most people pick themselves up and hurry off as though
nothing ever happened".
- Sir Winston Churchill
"We either make ourselves miserable, or we make
The amount of work is the same."
- Carlos Castaneda
Six Chix, by Margaret Shulock
May 15, 2002
"The Pressure To Be Perfect Is Hard To Shake."
[Two angels are talking while standing on a cloud. One
of the angels says to the other: "Maybe it's crazy, but I still have
the feeling that, if I just tried a little bit harder, I could be
The National Fibromyalgia
The National Fibromyalgia Partnership, Inc. (NFP)
provides a free-of-charge brochure that defines fibromyalgia and its
symptoms. To receive this pocket-sized brochure, send a
self-addressed stamped envelope (business-sized) to the NFP:
National Fibromyalgia Partnership, Inc.
P.O. Box 160
Linden, VA 22642-0160
1-866-725-4404 (toll-free phone)
1-866-666-2727 (toll-free fax)
AACFS at the Westfield
Marriott in Chantilly
The American Association for Chronic Fatigue Syndrome
(AACFS) 6th International Research and Clinical Conference will take
place in the DC area! It is scheduled to be at the Westfield Marriott
in Chantilly, VA, on January 31 - February 2, 2003.
For more information, see http://www.aacfs.org/p/155.html. (Updated 04/06.)
Deciding to File a
Those of us with CFS and fibromyalgia often work beyond
our limits before we apply for disability. Many times, we
have already gathered sufficient medical documentation about our
illnesses before we make the decision to apply. So why do we
put off filing for disability when we know it's probably the best
course of action?
Attorney Scott Davis addresses many of the common
questions and fears about making this important decision. His
article, "Chronic Fatigue Syndrome and Fibromyalgia Patients: Should
You File a Disability Claim?," provides some helpful advice.
You can read the complete article (as well as numerous other disability
articles) at the ImmuneSupport.com disability article Web site: http://www.immunesupport.com/disability/articles.cfm?cat=disability
In the "Should You File. . ." article, Davis writes of two common
- Mistake #1: Not filing a claim because of
your own denial. Many people do not file a disability claim
because often they are in denial about their inability to work. We
don't want to believe we can't work; it's not fashionable in this
country. Thus, most people hope for years they will get better and
delay or forget to file a disability claim.
- Mistake #2: Not filing a claim because "I
don't want to live off the system." . . . The sooner you get over the
"living off the system" frame of mind, the sooner you will be in a
position to file your disability claim and make a smart financial
decision that is in your and your family's best interest.
Davis advises, "At the very latest, file your SSA
disability claim within 18 months of becoming disabled." He
also says, "I generally recommend waiting a minimum of 5 months to file
a claim to allow sufficient time for you and the doctors to see how
your condition progresses while not working."
Here's a final quote from Scott Davis:
"Remember to never quit and keep fighting for the benefits you deserve!"
Coping Skills for
Managing Chronic Pain
The following recommendations are from the American
Chronic Pain Association (ACPA). For more information, visit
their Web site: http://www.theacpa.org
Coping skills are techniques that can be helpful in managing pain. ACPA
groups build on these coping skills:
- We do not dwell on physical symptoms of pain.
- We focus on abilities, not disabilities.
- We recognize and talk freely about our feelings about
pain and its control over our lives. We do not make judgments. Group
discussions are confidential.
- We use relaxation exercises to help ease the tension
that increases pain and redirect attention away from our pain and
- We demonstrate mild stretching exercises and
encourage you to do them daily, if your doctor approves.
- We set realistic goals and evaluate them weekly. This
helps members to see that their desires can be achieved, one step at a
time. We recognize our basic rights, including the right to make
mistakes, the right to say no, and the right to ask questions.
WHAT IS CFS/CFIDS?
Chronic Fatigue Syndrome (CFS)—also known as
Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)—is
defined as a debilitating and complex disorder characterized by
profound fatigue, pain and cognitive problems not improved by bed rest.
These symptoms may be worsened by physical and mental
Persons with CFS function at a substantially lower level of activity
than they were capable of before the onset of the illness. Recent
studies estimate more than 800,000 Americans are suffering with
CFS. For more information about CFS/CFIDS, contact the CFIDS Association of
America at http://www.cfids.org
or call 1-704-365-2343 for a free information packet and see our page about What's CFS/ME/FMS? (Updated 11/06).
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