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March 2002

Speaker Acupuncturist T. OBrien on Jaffe-Mallor Technique
NDRF Conference in DC
Wise Traditions Conference
Mitral Valve Prolapse Syndrome (MVPS/D) Symptoms
2001 Most Helpful stuff for MVPS/D (and CFS!)
MVPS/D Books
MVPS Societies and Resources
"Inclined to Recline" Published
5HTP and L-Glutamine Supplements
Virginia Allows Subtraction of Disability Income
Member Laura Hillenbrand Update
Honor Your Emotions
Quipu Advocacy Project

(Links and Stories Updated May 2006)


Welcome to CFSupport Group News! To receive all of our emails and newsletters, please join our email list and Yahoo! group at .

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.


Our March speaker is Ted O'Brien, L.Ac. He will give a presentation on acupuncture, nutrition, and the Jaffe-Mallor Technique, a new technique for various pain related disorders.
Articles on the Jaffe-Mallor Technique are online at Jaffe-Mellor Technique website.

Contact info:, 301-655-1600, and


The National Dysautonomia Research Foundation conference will be July 18-20, 2002, held at the Omni Shoreham Hotel, 2500 Calvert Street NW, Washington, DC. Topics include Orthostatic Intolerance Conditions, Syncope, Non Pharmacological Management, Exercise, Neurotransmitters, Autonomic Testing, Genetics, Coping, Disability, and Networking. A new NDRF Patient Handbook, by David S. Goldstein, MD, PhD, and Linda J Smith will be sold.   NRDF website or 651-267-0525.


Wise Traditions 2002, the Third Annual Conference of the Weston A. Price Foundation, will be held April 27-28, 2002. It will be at the Washington Times Arbor Ballroom, 3600 New York Avenue, NE, Washington, DC. Speakers include Mark Purdey, Mike Callicrate, Joel Salatin, Tom Cowan, Julia Ross, Krispin Sullivan, Mary Enig and Sally Fallon.

WAPF: 202-333-HEAL; email ; or see the Foundation website .


MVPS is an imbalance in the autonomic nervous system, a dysautonomia. Common symptoms include abnormally rapid throbbing or fluttering of the heart; a feeling of apprehension, worry, uneasiness or dread that leads to problems in maintaining attention and concentration; chest pain; rapid, irregular and shallow breathing; feeling very tired for no apparent reason; depression; sleep problems; digestive problems; migraines; feeling unsteady; cold hands and feet; difficult standing or sitting still; heat intolerance; alcohol intolerance; feeling too hot or too cold or both; being afraid that you are going crazy.

This item, as well as other items on this page relating to MVPS/D, are from the Northern VA MVPS/Dysautonomia Support Group Newsletter, February 2002. See also our resources on orthostatic intolerance - a broader term that includes the conditions MVPS/D, POTS, & NMH, and the Yahoo Group mvps-d_oi_nova which welcomes long distance members.



Confronting Mitral Valve Prolapse Syndrome, by Lyn Frederickson, MS, RN.

Taking Control: Living with the Mitral Valve Prolapse Syndrome, by Kristine A. Bludau-Scordo, Ph.D, RN. To view an online excerpt, click here.

Natural Therapies for Mitral Valve Prolapse : How Diet and Nutritional Supplements Can Ease the Symptoms of This Common Disorder, by Ronald L. Hoffman. Also see the article in Conscious Choice, May 1996, as well as Dr. Hoffman's website.

Anxiety and Panic Attacks: Their Cause and Cure :The Five-Point Life-Plus Program for Conquering Fear, by Robert Handly.


National Dysautonomia Research Foundation - NDRF
421 West Fourth Street, Suite 9
Red Wing, MN 55066-2555
Phone: 651-267-0525

National MVP Society
P.O. Box 830605 Birmingham, AL 35283-0605 &
The Mitral Valve Prolapse Center of Alabama
880 Montclair Rd, # 370, Birmingham, AL 35213
Phone: 205-592-5765 / 1-800-541-8602
newsletter $15/yr 3/$40

The Society for MVP Syndrome
P.O. Box 431, Itasca, IL 60143-0431
Phone: 630-250-9327 (Mon-Fri 9-5 cst)

Florida Institute For Cardiovascular Care
Mitral Valve Prolapse Syndrome Center
3702 Washington St, Hollywood, FL 33313
Phone: 954-967-6550


The Winter 2002 CFIDS Chronicle, a quarterly publication of the CFIDS Association of America, includes an article by our own Toni Marshall and Elly Brosius, entitled "Inclined to Recline: Our Tips for Managing Orthostatic Intolerance''. Congratulations and thanks to Toni and Elly!


This month, some of our members have reported finding the following supplements helpful with some of their symptoms:

  • L-Glutamine - An amino acid- helpful for irritable Gi, increased energy, & better mood.
  • 5HTP - Helpful for improved sleep and reduced irritability.

They are among the items discussed in Julia Ross' book, The Diet Cure. Julia Ross will be a speaker at the Sunday portion of the Weston A. Price annual conference in DC on April 28 (see our separate newsletter item above).

Remember, everyone's body chemistry is different, and we each respond differently to different supplements. Be sure to discuss with your health care provider.

For additional information on supplements and suggestions on places to purchase online, see our website's Resources page.


From the Virginia Department of Taxation, What's New for doing 2001 taxes:

Subtraction for Disability Income 

Legislation enacted by the 2000 General Assembly replaces the former disability income subtraction, which was based on the income used to compute the federal income tax credit for permanently and totally disabled persons under age 65. Under the new provisions, up to $20,000 of disability income as defined under Internal Revenue Code Section 22 (C ) (2) (B) (iii) can be subtracted when calculating Virginia taxable income. As defined under federal law, the subtraction applies to income received for permanent and total disability. The subtraction is equal to the amount of income received for total or permanent disability, not to exceed $20,000. You may not claim this subtraction if you claim the Age Deduction for Taxpayers Age 62 and Over. Report on Schedule ADJ, Line 5.

Added 05/06: General link for this topic: Disability Income Subraction


The paperback edition of member Laura Hillenbrand's book, Seabiscuit: An American Legend, arrived in the bookstores on March 26, 2002.

Conde Nast, in partnership with Ponds skincare products, has asked Laura to model for a print ad, to run in Glamour, Self, Vanity Fair, and Allure. The ad, which will run full-page in June, carries a small blurb on CFS.

Smithsonian Magazine is doing a comprehensive article on CFS. Laura sat for 3-1/2 hours of interviews for it. The writer of the article is Larry Katzenstein, who is well-versed in the disease and the current research. Katzenstein has written previous articles on CFS for Consumer Reports (1990) and American Health (1992). 

Added 05/6: "Betting on Seabiscuit, Laura Hillenbrand beat the odds to write the hit horse-racing saga while fighting chronic fatigue syndrome, a mysterious disorder starting to reveal its secrets" December 2002 Smithsonian Magazine.

Our thanks and congratulations to Laura!


"Honor Your Emotions" (#9 of 10 Keys to Successful Coping) by Bruce Campbell, PhD, was The CFIDS Support Network (CSN) support group article for March 2002. Campbell offers a quarterly CFIDS/Fibromyalgia Self-Help course for $25 and a helpful website.


Ribbons sent in for the Quipu Forget Me Knots Advocacy Project 2002 have been photographed and placed online. CHARGE, based in NY, stands for Cure Hope Advocacy Research and Global Education, Inc. Several photographs of quiqu's are on site, and Elly's quipu is shown in the first row and her letter about it is published there and here. Toni made one as well, but it is not shown.

Elly's Quipu Story

As part of an advocacy project to show how long people have been sick
with the related syndromes, I tried my hand at making a quipu. I made 4 in all. The first was practice, didn't have much resonance for me, but I liked the 3 colors I picked, two more than the instructions said. One color would be so unlike me. This one had 10 knots and it doesn't feel right. 1 for each year of illness is the rule, but that is fuzzy in syndrome land. 16 years ago I had mono and began to have subtle yet severe (7!) problems. CFS diagnosis came 6 years later. First memorable symptoms of heat intolerance and Ol came in 1977, 25 years ago. That's too far to go back for this project. My other 3 quipus have 16 knots, back to mono. That feels right.

What came to mind as I tied knots means much to me...

In my second quipu, I used the 9 colors/rooms of Feng Shui,
a recent hobby. To me, they represent life aspects (health, fame, career, family, creativity, prosperity, wisdom, helpful people and travel, and relationships) and also the many body systems weaving in and out of the knots. Sometimes being dominant, sometimes hiding deep within so as to be invisible. Just like symptoms and strengths come and go
and attitudes and how we are doing, too.

I like that the knots are spaced unevenly even though
I tried to do them consistently. This is a reflection of how the years passed. Symptoms, life, the feeling of how time was passing all seemed to change for each year. Some years seemed full of promise with new discoveries and treatments and others were coasting plateaus. Some were spent working hard at the illness, some against it, and some ignoring it.

I liked this 9 color quipu enough to make a copy to send
as the one to the project.

I then chose to try a single color one. Yellow - the color of health in
feng shui. With this one I could focus on the notion that good health has always been with me. Most body functions function most of the time. That health is more than the body, it is an attitude. And I could extend this idea to the 9 color one. That all aspects and things you need are there. You just need to tap into them. Sometimes they are buried deep and some time
lets them come out again.

I left long tails on when I had enough ribbon.
I wish there to be years ahead to make more progress.

I also had wonder in focusing on that the year I call onset is also the
year of meeting my mate. The 16 knots show the years of having each other. Struggle and triumph. Give and take. There seems to be balance in my world.

Thank you for this opportunity to think in new ways
and have a physical symbol of the road traveled.

Centreville, VA, USA



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Updated March 13, 2014