Selections from our EMAILS and NEWSLETTERS
Resources and Offers
Support Group Meetings; Speakers
NDRF 2002 Conference in DC
Traveling? Keep Moving for Your Blood
What Is CFS/CFIDS?
Welcome to CFSupport Group News! To receive all of our emails and newsletters, please join our email list and Yahoo!
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As a member of our CFSupport Yahoo group, you would be able to browse
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files, use our rideshare database as well as receive current updates of
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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.)
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)
Aug 17: ELISA/ACT testing, Carrie Zipper & Tory Trocki,
Sep 21: Vision therapy with optometrist Dr. Dennis 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."
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
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
- A dull ache, heaviness, and pressure in the lower
- 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
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
For a free information packet about CFS/CFIDS, contact the CFIDS Association of
America at 1-704-365-2343, or email firstname.lastname@example.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.