The Northern Virginia
CFS/FMS
Support Group

Selections from our EMAILS and NEWSLETTERS

May 2002

INTRODUCTION

Welcome to CFSupport Group News! To receive all of our emails and newsletters, 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/M.E., fibromyalgia, and related illnesses. We keep the number of emails to less than one per day on average.

Resources And Offers

• Healthfinder - your guide to reliable health information. This resource, http://www.healthfinder.gov, provides information on a wide variety of health topics, directing you to medical journals, clearinghouses, databases, hot lines, medical research, support groups, organizations, and libraries.
  
  
• Medline. Offers health information, library services, research programs, hot topics, and general information. Visit http://www.nlm.nih.gov.
  
  
• FindArticles.com. A vast archive of published articles free. Continuously updated, it contains articles dating back to 1998 from more than 300 magazines and journals. (05/06: deactivated link. Looks like the site still exists, but only contains advertising.)
  
  
• HealthAnswers.com has a comprehensive pharmaceutical database, extensive medical encyclopedia, and leading health news stories. (05/06: deactivated link. Appears to be a different company which is selling training modules.)
  
  

Group Contacts

Elly Brosius: (703) 968-9818  and  Toni Marshall: (410) 647-7578

Margherita DiCenzo Harrington: Newsletter Editor

When and Where to Attend a CFS/FMS Support Group Meeting; Speakers

We meet the 3rd Saturday of each month between 2 and 4 p.m. in Room 5 of the Education Conference Center (ECC) Building of Fairfax Hospital. Use  blue entrance from Gallows Rd. 
(Note: Group stopped meeting at this location April 2005. See Meetings.)

May’s HeartMath topic is postponed. Here’s a tentative schedule for future meetings:
Jun 15:  Caregivers meeting
Jul 20:   Social Security Disability w/ attorney Mitch Lambos, (800) 562-0044
Aug 17: ELISA/ACT testing, Carrie Zipper & Tory Trocki, (410) 268-8085
Sep 21: Vision therapy with optometrist Dr. Dennis Cantwell, (703) 941-3937
                        (Dr. Cantwell did not eventually speak to group.)

National Dysautonomia Research Foundation 2002 Conference

The conference will be held at the Omni Shoreham in Northwest Washington, DC. It runs July 18 through July 20. Session topics include CFS, POTS (Postural orthostatic Tachycardia Syndrome), Neurally Mediated Syncope,  Orthostatic Intolerance (OI), Conditions, Diagnosis and Treatment, Exercise and Non Pharmacological Management, Neurotransmitters, Autonomic Testing, Genetics, Coping, Disability, and Networking. Doctors speaking include David Goldstein of NIH, Philip Low of Mayo Clinic, David Robertson of Vanderbilt Univesity's autonomic nervous system research lab, Cecil Coughlan of the University of Alabama, and Blair Grubb of the Medical College of Ohio. The attendance fee includes some meals and a dinner. Rest time has been allocated between sessions. For more information, call 651-267-0525 or visit http://www.ndrf.org/Seminars.htm.

Added 05/06: The Conference Video Set is available at http://www.ndrf.org/Reference.htm along with The NDRF Patient Handbook.

"Any idiot can face a crisis — It's this day to day living that wears you out."
     Anton Chekhov

Traveling? Keep Moving for Your Blood

The blood of some chronic fatigue syndrome patients has been found to be hypercoagulable, or prone to abnormal thickness/stickiness. People with CFS/CFIDS (PWCs) are often immobile for long periods of time and have poor circulation. PWCs might benefit from the following article. While most PWCs do not develop clots, they seem to have slow moving blood. Give your blood some help! 

From a 2001 issue of Prevention magazine about travelers and circulatory problems.

Air travelers drew attention dangerous blood clots, but anyone who is inactive for hours (including those sitting glued to a computer) can face similar risks.

"Even though the condition has been nicknamed "coach class cramping," the problem is mainly caused by being immobile for long periods of time, not by the amount of space allocated for each passenger," says David M. Capuzzi, M.D., Ph.D., director of Thomas Jefferson University Hospital's Cardiovascular Disease Prevention Center in Philadelphia.

"Under normal circumstances, many of these passengers might not otherwise form blood clots," says Dr. Capuzzi. But cramped inaction may invite clotting, "especially in those passengers who may be at high risk-even during tips as short as three to four hours." 

For anyone who sits or stands for long times with no movement, the blood flowing through their veins can be slow, says James Wong, M.D., a vascular surgeon at Johns Hopkins Bayview Medical Center in Baltimore. Regardless of whether you're driving or flying, it's especially important to walk around about every two to three hours. [Note from the CFS/FMS Support Group: For CFIDS sufferers, moving every 10-15 minutes is recommended.]

Your risk of clots may rise with a family history of stroke, heart disease, high blood pressure, cancer, smoking, diabetes, diseased veins, abnormal blood clotting or faulty valves. Pregnancy and diuretics also raise risks. "Get up and walk around," suggest Dr. Capuzzi. If you can't leave your seat, try heel raises, toe lifts or flexing your feet-any kind of movement can help. "If you are prescribed support stockings, don't forget to wear them on a long trip. Otherwise don't wear constrictive clothes," says Dr. Capuzzi. "And continue to take your prescription blood thinners." [Sounds just like Elly's and Toni's tips for Orthostatic Intolerance: move a little but often, support hose, keep hydrated!] 

Watch for these signs:

• Swelling, cramping or numbness in your feet or lower legs
• A dull ache, heaviness, and pressure in the lower legs.
• Tight muscles, especially in the ankles and calves.

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 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 a free information packet about CFS/CFIDS, contact the CFIDS Association of America at 1-704-365-2343, or email info@cfids.org. Also, visit http://www.cfids.org and our What's CFS and FM? page.

To forgive is to set the prisoner free, and then discover the prisoner was you.