CFSupport

The Northern Virginia
CFS/FMS
Support Group

 
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Selections from our EMAILS and NEWSLETTERS

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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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Updated February 25, 2007