SELECTIONS From
Our
EMAILS
and NEWSLETTERS
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
Virgina Allows Subtraction of Disability Income
Member Laura Hillenbrand Update
Honor Your Emotions
Quipu Advocacy Project
(Links and Stories Updated May 2006)
INTRODUCTION
Welcome to CFSupport Group News! To receive all of our emails and newsletters, 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
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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.
MARCH SPEAKER
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: TedOBrien@aol.com, 301-655-1600, and http://www.bethesdaacupuncture.com/
NATIONAL
DYSAUTONOMIA RESEARCH FOUNDATION (NDRF)
CONFERENCE IN DC
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
ANNUAL CONFERENCE
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 westonaprice@msn.org
; or see the Foundation
website .
MITRAL VALVE
PROLAPSE SYNDROME / DYSAUTONOMIA (MVPS/D)
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.
2001 LIST OF MOST
HELPFUL STUFF FOR MVPS/D
MVPS/D BOOKS
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.
MVPS/D SOCIETIES AND
RESOURCES
National Dysautonomia Research Foundation - NDRF
421 West Fourth Street, Suite 9
Red Wing, MN 55066-2555
Phone: 651-267-0525
www.ndrf.org
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
www.mvprolapse.com
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)
www.mitralvalveprolapse.com
Florida Institute For Cardiovascular Care
Mitral Valve Prolapse Syndrome Center
3702 Washington St, Hollywood, FL 33313
Phone: 954-967-6550
www.mitral.com
"INCLINED TO RECLINE" Published
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!
5HTP and L-Glutamine: HELPFUL SUPPLEMENTS
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.
SUBTRACTION FOR
DISABILITY INCOME ON VIRGINIA STATE TAXES
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
MEMBER
LAURA HILLENBRAND UPDATE
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
"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.
QUIPU FORGET ME
KNOTS ADVOCACY PROJECT 2002 by CHARGE, Inc.
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.
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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.
Elly
Centreville, VA, USA
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