The Northern Virginia
CFS/FMS
Support Group

Selections from our EMAILS and NEWSLETTERS

May 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.

Dr. Sarah Myhill's CFS Info Online Free

Sarah Myhill, MD, a medical adviser to Action for ME, wrote a book "Diagnosing and Treating Chronic Fatigue Syndrome." This book of factsheets, in its 14th edition, was produced by Dr. Myhill for her ME/CFS patients. While it was online, now you can find info from Dr Myhill's web page of CFS articles and/or Action for ME's CFS/ME Fact Sheets & Publications Page.

More News: Member Laura Hillenbrand

"Winner's Circle" , a feature article on  Laura Hillenbrand and how Seabiscuit's best-selling author lives with chronic fatigue syndrome, is included in the most recent US Weekly (issue #325-326, with Renée Zellweger on the cover). The article is by Phoebe Hoban. Archives only stay online for a couple of months. See: http://www.usmagazine.com.

Laura was on ESPN's chat room at 2pm on Friday, May 4, the eve of the Kentucky Derby. You can view the full transcript at: http://espn.go.com/horse/s/2001/0504/1191394.html .

Also on May 4, Laura was interviewed by Terence Smith on the PBS NewsHour with Lim Lehrer. The transcript and video are available online at:
http://www.pbs.org/newshour/conversation/jan-june01/seabiscuit_05-04.html

On May 18, Laura was also DC's WJLA-TV, ABC, on the 5:00 news Working Woman segment with Kathleeen Matthews.

Thank you again to Laura for all that you are doing - in the course of your success as an author - to give eloquent voice to all of our struggles with CFS!

MVPS/D E-Mail List

The Northern Virginia MVPS/D (mitral valve prolapse syndrome/ OI /dysautonomia) support group's email list was wiped out. For meeting reminders, related announcements, articles about MVPS and orthostatice intolerance, email us. Thanks! 

Update 06/06: Sign up at http://health.groups.yahoo.com/group/MVPS-D_OI_nova or see the new MVPS/D & OI Support Group page. To email that group, write owner of the list.

Summary of April Meeting  by Toni Marshall

New members and folks who've been home from meetings a long while enlivened the conversation.  Discussion about NADH, support hose, thyroid medication, and heparin to treat hypercoagulation (for those of us who've tested positively through HEMEX Labs, and one who's had strokes).

Gratitude was expressed by some for our support group as a life-saver, offering validation one is not crazy, offering knowledgeable doctor recommendations, offering discussions such as this one about symptoms and helpful protocols. Suicide, and the dangers of symptoms like fainting, losing control and falling, cognitive difficulties causing driving errors due to the neurological problems of CFIDS were discussed.

Thanks, everyone, for your participation, providing material for a memorable meeting.

To read Toni's meeting summary in full, please join our email list and Yahoo! group at http://groups.yahoo.com/group/CFSupport . As a member, you will be able to browse our archives. Toni's meeting summary is message #403.

Support Hose

Thanks to member Connie for this resource and personal reference for support hose:

I recently ordered 3 pairs of Jobst support socks from a mail order source called Healthy Legs - We Support the World's Greatest Legs! I was very pleased with the price and the service. The company's phone, which has a variety of support socks and stockings, is 888-495-0105.

Health Seminars

Thanks to member Connie for information about free health seminars in the area:

Robert Johnson, DMD, director of the Natural Horizons Wellness Center, and Eve Stahl of the Garden of Eve Wellness Center discuss how to treat health problems in a non-pharmaceutical fashion during two free seminars this month at Reston Regional Library, 11925 Bowman Towne Drive.

"Why We Get Sick and How to Stay Healthy" - Thursday, May 17, from 7 to 9 p.m.

"Recover from Any Illness: Cutting-Edge Evaluation and Treatment the Natural Way" - Thursday, May 24, from 7 to 9 p.m.

The seminars are also being offered in Great Falls and Vienna, per their website
http://www.naturalhorizonswellness.com/free_seminars.htm

For reservations, call 703-246-9355.

Dr. Gennaro (who gave the talk on CFS earlier this year at Fresh Fields, Herndon) is also associated with the Natural Horizons Wellness Center.

Revised CFIDS Assn Website

The CFIDS Association of America now has a completely revised and truly wonderful website at http://www.cfids.org/ . There are so many great new resources there - including archives of recent years of articles from the CFIDS Chronicle and CFS Research Review. It's all at www.cfids.org. It's another demonstration of the tremendous work being done by the CFIDS Association for all of us! View their website free. Join to get added benefits. (704) 365-2343.

Member Tonette to be Wash Post May 27

A piece written by member Tonette Hartmann about living with a chronic illness is being published in the Washington Post on Sunday, May 27, 2001. It will appear in the Style Section as part of their "Life is Short" series and our next newsletter. From Tonette:

My basic message is that, despite any challenge, we can have happy, fulfilling lives.

I "convinced" the Editor that a good portion of his readers are disabled, ill, or experiencing some type of crisis in their lives, and could possibly benefit from my story.  So, if anyone DOES have a positive response and the "spirit moves you", an e-mail or letter to the Post would be greatly appreciated.  It could help them realize that we DO exist, we DO buy newspapers, and would probably prefer the one which gives us recognition and validity.

I sincerely hope people get something positive from my story.  I'd appreciate any feedback (Click Email Us and ask for Tonette's email address).  Thank you all so much for your support.

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