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September/October 2002

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! group at .

As a member of our CFSupport Yahoo group, you would be able to browse and search our archives, use our Calendar of local and national groups, download files, use our rideshare database as well as receive current updates of interest regarding CFS/M.E., fibromyalgia, and related illnesses. We keep the number of emails to less than one per day on average.

Dysautonomia Video Now Available

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 ( 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 Group Meeting

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
    John T. Cox, Doctor of Clinical Hypnotherapy (DCH), (703) 435-6002
  • November 16:  Gratitude meeting
  • December 21:  General discussion

    Meetings moved to Mason Center in Annandale, VA, April 2005
    See Other Groups Page for more opportunities to go to meetings.


Elly Brosius:  (703) 968-9818

Toni Marshall: (410) 647-7578

PAPER Newsletter Editor

Margherita   (Thanks to Margherita for working on Newsletters!)

(Updated 04/06.)


"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 ourselves strong. 
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 better.'']

The National Fibromyalgia Partnership, Inc.

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) (Web site) (E-mail)

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  (Updated 04/06.)

Deciding to File a Disability Claim

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 disability article Web site: .

In the "Should You File. . ." article, Davis writes of two common errors:

  • 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:

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 suffering.
  • 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.

Phone: 1-800-533-3231


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 activity. 

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 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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Updated February 25, 2007