Dysautonomia in DC
MD Bay Area CFS/OI Support
Our NoVA CFS/FM/OI Meetings
Group Contacts
Snail Mail Newsletters
Checking Board Certification
Resources
Disabled Parking with an Invisable Illnesss
Cooking Safely
What is CFS/CFIDS? What is FM/FMS?
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.
Dysautonomia in DC
In May's newsletter we mentioned the rare opportunity to attend the National
Dysautonomia Research Foundation (NDRF) Conference, which will be held July 18 through July 20 at
the Omni Shoreham in downtown Washington, D.C.
Don't miss this chance to participate in a national health
event. Call 651-267-0525 or visit http://www.ndrf.org/Seminars.htm
for information on how to attend. Tapes of the conference
will be available for purchase. Check http://www.ndrf.org/Reference.htm for the videos.
MD Bay Area CFS/OI Support
Toni Marshall (410) 647-7578 leads the Maryland Bay Area
Chronic
Fatigue Syndrome (CFS)/Dysautonomia Support Group and takes phone calls
for that area. [No longer meets; phone calls welcome.] For more
info, contact Toni Marshall by clicking on "Email Us" on any page or
calling her.
Our NoVA CFS/FM/OI Meetings
See Meetings for most recent
meeting location, directions, and guidelines. At the time of this
newsletter and these speakers, the group met at INOVA Fairfax Hospital,
Falls Church, VA.
Please refrain from
wearing scented products to any meetings. Bring pillows, foot rests, mats,
something to drink, etc., for your comfort.
Group Contacts
Elly Brosius: (703) 968-9818; Toni Marshall: (410) 647-7578; Learn About Us. Email Us.
Snail Mail Newsletters
If you would like to receive a paper copy of the
newsletter by mail, please send a donation and your name, address, and phone to Margherita....
Updated 06/06: This service currently not offered.
Checking Board Certification
The American Board of Medical Specialties (ABMS) is the umbrella
organization for the medical specialty boards in the United
States. This FREE service can help you check out your
physician's credentials, by telling you whether your doctor is board
certified or not. For information, call the American Board of
Medical Specialties Certification Hotline at 1-866-275-2267 = (866) ASK-ABMS.
The information is online at http://www.abms.org .
Resources
Healthtouch Online: This
resource bring together valuable information from trusted sources on
topics such as mediations, health, diseases, supplements, and natural
medicine. Visit http://www.healthtouch.com
. Health Touch's CFS Page, FM, magnesium, & potassium pages.
For Organic Cotton Balls and Swabs, Bleach free Tampons, cotton bedding, etc., a few sites...
From The CFIDS
Chronicle:
- Caring Centers, a national nonprofit organization of volunteer
therapists, provides free massages, therapeutic touch, Reiki sessions,
and more. Has centers currently in California, Florida, Pennsylvania, Tennessee, Texas, Virginia, Washington. Visit http://www.caringcenter.org, e-mail caringcenter@caringcenter.org, call 901-756-1915.
Closest one for Northern VA
Caring Center of Falls Church
Healthy By Intention, 100 N. Washington St STE 307, Falls Church VA 22046
Meeting Times: Thursday 7:30pm to 9:30pm
Center Coordinator: Jodi N. Email: fccaringcenter@aol.com
For more information about services at Healthy By Intention, visit: healthybyintention.com, 703-534-1321, or Email: newhealth1@aol.com
- The book
Recovering from Chronic Fatigue
Syndrome: A Guide to Self-Empowerment
by William Collinge,
Ph. D., M.P.H., can be viewed for free at http://www.healthy.net/collinge
.
Privilege and Prejudice: Disabled Parking with an Invisable Illnesss
By Lisa Lorden
[From an article in the April 17, 2002 issue of National
Fibromyalgia Association online newsletter. Visit http://www.fmaware.org
for more information about fibromyalgia and chronic illness or to
register for this online publication.]
I was struggling with excruciating fatigue. I needed to go to
the bank and
I dragged myself on this one errand, knowing that as soon as I
finished, I
could return home and lie down. I pulled my car into the
parking space
closest to the building, between those blue lines that indicate parking
for
the disabled or handicapped.
As I got out of the car, a woman approached me. "I hope you
feel good about
parking there," she said sarcastically. I was caught off
guard, and
responded dumbly, "What?" "I hope you're happy, " she said, "taking a
space
that's for the handicapped." My heart was beating
furiously. "I do have a
permit," I stammered. "Well, " she said, disdain all over her
face, "you
look like you can walk fine to me--you're about as handicapped as I am!"
I was stunned. I stood there mute, horrified, but unable to
even defend
myself. It wasn't until she walked away that the tears began
to roll down
my face. I started to think about all the things I could have
said--should
have said--how I might have made her understand. Instead, I
felt
ashamed--that my disability is not apparent.
I now know that this happens to lots of people. I've heard
many stories
like mine about people with invisible disabilities who are accosted by
"do-gooders" intent on protecting the rights of those for whom the
parking
spaces are reserved.
For many with fibromyalgia (FM) or other invisible illnesses, that blue
permit allows us to live our lives more "normally" by helping us
complete
seemingly easy tasks--like grocery shopping or a stop at the dry
cleaners.
Says one writer who calls herself the Invisible Disabilities Advocate:
"these spaces do not make life easy, they make it possible."
Errands like these may seem trivial to some, but they are precious and
essential to those of us who struggle with illness and disability on a
daily
basis.
We must stop feeling guilty about our limitations, in order to do what
we
need to do to live the fullest lives we possibly can. If you
feel you need
a disabled parking permit, your doctor can usually help you with this;
or
contact the vehicle licensing agency in your state to find out how to
apply.
Visit the NFA's Patient Information Index
at http://www.fmaware.org/patients.htm
for information on disability, coping strategies, overlapping conditions, and more.
Cooking Safely
From Prevention Magazine
[Due to immune dysfunction some CFS patients, it can be
important to handle food properly.]
A kitchen thermometer is one of your most important weapons against the
food-borne illnesses that strike more than 6 million people a year.
Always consider raw foods of animal origin as potentially carrying
harmful
bacteria," says Michael P. Doyle, Ph.D., director of the University of
Georgia's Center for Food Safety and Quality Enhancement.
Your medium-rare steak is done at an internal temperature of 145 F, but
heat
that chicken or turkey to 180 F.
Here are some important food-handling tips:
* After you've cooked your chicken, don't put it back on the same plate
you
used to brig it to the oven. Juices from raw chicken could
contaminate the
cooked food with salmonella or campylobacter bacteria, the main
culprits in
food-borne illness. Use separate utensils, plates and dishes
for raw and
cooked food, and wash them between uses.
* Use disposable paper towels instead of a kitchen sponge or rag, where
salmonella or other bacteria can grow and spread.
* If you want rare beef, eat a steak, not a hamburger. E coli
may affect
the surface of a steak (where cooking will kill it), but it won't
penetrate
the interior. In a burger, contamination can reach the
center. The USDA
says ground beef must be cooked to 160 F-hot enough to kill E. coli.
* You don't have to overcook pork to be safe. Many people
cling to outdated
fears about the parasite that causes trichinosis, but farming practices
are
safer now and don't expose livestock to the parasite. Pork is
safe at an
internal temperature of 160 F, even if it still looks pink.
* If you like raw seafood, get to know your fish merchant and
restaurateur.
The risks from raw oysters drop if they come from unpolluted
waters. Sushi
or uncooked marinated seafood may be flash-frozen to kill parasites.
Cooking will kill live contaminants.
What is CFS/CFIDS? What is FM/FMS?
See our What are CFS/FM? Page. The short version:
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, contact The CFIDS Association of
America or call 1-704-365-2343 for a free
information packet.
Fibromyalgia syndrome (FMS or FM) is a complex, chronic
condition which involves widespread pain and fatigue, as well as a
variety of other symptoms. The name fibromyalgia comes from "fibro"
meaning fibrous tissues (such as tendons and ligaments), "my" meaning
muscles, and "algia" meaning pain. Unlike arthritis, fibromyalgia does
not cause pain or swelling in the joints themselves; rather, pain is
described in the soft tissues located around joints, skin, and organs
throughout the body. Because fibromyalgia produces few symptoms that
are outwardly noticeable, it has been nicknamed "the invisible
disability" or the "irritable everything" syndrome. For more info: National Fibromyalgia Partnership, 866-725-4404.
Updated 06/06.
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