The Northern Virginia
CFS/FMS
Support Group

 
SELECTIONS from our EMAILS and NEWSLETTERS

July 2001

Introduction

Welcome to a CFSupport Newsletter! Please visit Group Newsletter Directory, Home, or About Us for more information.  To receive our emails and news items, please join our email list and Yahoo! Group at http://groups.yahoo.com/group/CFSupport. 

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/CFIDS (chronic fatigue syndrome), FM (fibromyalgia), ME (myalgic encephalomyelitis), OI (orthostatice intolerance), and more. We keep the number of emails to less than one per day on average.

What is CFS/CFIDS?

Chronic Fatigue Syndrome (CFS) 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 CFIDS/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 with CFS. Sign up for the CFIDS Chronicle from the CFIDS Association of America, cfids.org or call 704-365-2343.

Health Insurance Battles

-    Today, getting sick can lead to two battles: one with the illness and another with the insurance paperwork and HMO bureaucracy.  A survey by the Kaiser Family Foundation and "Consumer Reports" found that 50% of Americans have had a problem with their health insurance in the last year.

-    Help is available. First, ask if your hospital has a patient advocate who can help with insurance claims and other questions. For complicated cases, the Patient Advocate Foundation (PAF)  offers tips on how to appeal an insurance decision, plus free printed material.  Download it at www.patientadvocate.org

-    PAF's small staff of caseworkers also offers free help in a health crisis.  In 1999, they resolved nearly 30,000 cases without going to court. Write:  PAF, 753 Thimble Shoals Blvd., Suite B, Newport News, VA 23661; Or, send e-mail to help@patientadvocate.org .

(Source: Parade Magazine. Email address updated 06/06.)

Article Archives: "Fibromyalgia: Real Illness, Real Answers" - NY Times

Archive, Oldies but Goodies: The New York Times has published an article on FMS. "Fibromyalgia: Real Illness, Real Answers"  (8/01) can be viewed on line. You need to register for the NYTimes on line for free to have access. It's another password to remember - sorry.)
www.nytimes.com/library/national/science/health/080100hth-brody.html

A Thought

 "No matter what happens with this illness, I think it is possible to carve out a dignified and productive life from it." --Laura Hillenbrand, author of the best-selling book Seabiscuit

Teitelbaum Book and Study

The best-selling book "From Fatigued to Fantastic" author and clinician Jacob Teitelbaum M.D. has been updated and will be released in paperback Aug. 5th 2001. Dr. Teitelbaum's randomized, double-blind, placebo-controlled study was just published in the Journal of Chronic Fatigue Syndrome. His approach analyzes each patient to see which of many different factors contributed to their illness, including disordered sleep, infections, subclinical hormonal deficiencies, nutritional deficiencies and NMH. Dr. Teitelbaum's website is Endfatigue.com.

Walk For Awareness

Walk for Awareness Planned for May 2002:  Mrs. Tracy Loeffler today announced the formation of a new group, Invisible No More-FMS-CFIDS-MPS (INMFCM). "The goal is to call attention to the 'invisible disabilities' like Fibromyalgia Syndrome, Chronic Fatigue and Immune Dysfunction Myofascial Pain Syndrome, and Multiple Chemical Sensitivity." The Walk for Awareness is scheduled for May 11, 2002 in Washington, DC and will precede an outdoor meeting near the Capitol Building. (Source: website www.cfs.inform.dk )

Tracy Loeffler's website: http://www.geocities.com/tlloeffler/FibroFight.html

Peripheral Vasular Disease (PVD)

PVD, caused by blocked blood-flow in the arteries of the legs, is an early warning of a stroke or heart attack.  A simple 10 minute exam can determine if you're at risk. Symptoms include difficulty walking and pain, swelling, numbness and skin discoloration in the leg. For a free brochure, visit www.legsforlife.org on the web, or call toll free:  1-877-357-2847.
(Above is from Parade Magazine in the Washington Post. People with CFS/FM/OI often have circulatory problems that manifest as achy legs. That is not PVD but it can be hard to tell the difference if you are at risk for it.)

Our Meetings

When and Where We Meet: The group meets the 3rd Saturday of every month in Room 5 of the Education Conference Center Bldg of Fairfax Hospital, between 2 and 4 pm. Please use Blue entrance from Gallows Road. It is a small building on the left behind gazebo. Park on the right in the employee parking.

06/06 update: Group meets same days/time, but at the Mason Governmental Center, 6507 Columbia Pike, Annandale, VA 22003. See Meetings, Events, and Speakers or call
Elly, (703) 968-9818 or Toni, (410) 647-7578.

Coping with the Stress of Chronic Illness

Coping with the Stress of Chronic Illness
by Gretchen Malik, Suite101.com

Stress is a part of everyone's life whether they have a chronic illness or not.  Stress happens when changes we are not in control of occur.  Having a chronic illness only intensifies the situation. And knowing that you will never be in control of your illness doesn't mean you have to be overwhelmed by it either.  There is a middle road you can walk on when things get tough. I discovered this road myself several years ago and often find myself returning to it.

1. Accept responsibility.  It's your life.  No on can live it for you. Family and friends may be able to help, but the responsibility must come from you.

2. Be objective.  Take a step back and look at your situation. If you have someone you admire, try and imagine what they would do in your situation and then do it.

3. Know you strengths and weaknesses.  Be honest with yourself.

4. Don't try to cope alone.  If and when the time comes, turn to friends and family for support.

5. Be positive.  The answer you are looking for may not be apparent or easy, but keeping an upbeat frame of mind will make anything easier to deal with.

6. Be realistic.  You are not "superwoman" (or superman).  There will be things you can and things you can't do.

7. Realize that you cannot always be in control.  The only way to cope is to withdraw from the problem, relax, and deal with it at a later time.

8. Relax.  Things that give you pleasure are the nourishment you need to get you through difficult times.

9. Be flexible. Be willing to try something new if what you've been doing no longer works.

10. Take one step at a time.  Approach each problem a step at a time.  Start small, and then progress.

11. Learn to laugh. Having a sense of humor brings relief and often a new perspective.

12. Always reward yourself.  Living with a chronic illness can be hard.  You deserve a reward.

From website www.healingwell.com library:

Clinical Trials

Acurian, a company from Pennsylvania, will get its information about clinical trials and new therapies to millions more people through an agreement with Yahoo! Inc., one of the country's most visited Web sites. Acurian will supply lists of clinical trials that are enrolling patients and information on emerging medical therapies for a new Clinical Trials Center on the Yahoo! Health page under the agreement being announced Monday.

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