The Northern Virginia
CFS/FMS
Support Group

Selections from our EMAILS and NEWSLETTERS

June 2001

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 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.

Guide to Relaxation Techniques

A variety of methods, ranging from martial arts to meditation to yoga, can help us improve our "relaxation skills." About.com's guide to Stress Management provides some common methods you can learn to increase your ability to relax. Decide if one is right for you!

See: http://stress.about.com/

Updated 05/06. Be careful with any deep or controlled breathing methods if you also have orthostatic intolerance. For some, changing breathing can bring on symptoms.

Resources for Friends and Family

Since CFS/FMS are "invisible" illnesses (sufferers don't look sick), they can be very difficult for loved ones to understand. Check out this selection of resources for those whose loved ones suffer from CFS/FMS, with tips for coping and providing support. It's all at:

http://chronicfatigue.about.com/od/familyfriends/

Link updated 05/06.

Member Tonette Hartmann In Wash Post

LIFE IS SHORT | Autobiography as Haiku
Washington Post
Sunday, May 27, 2001; Page F01

CFS Humor

"You Know You Have CFS When..." Funny one-liners that many of us can relate to.
http://www.geocities.com/cfsdays/uhavecfs.htm

Also, Bill Jackson's funny cartoons and one-liners are available at his CFSdays store:
http://www.geocities.com/cfsdays/cfsstore.htm

Synthroid Warning By FDA

Abbott may have to remove Synthroid from market - WSJ

NEW YORK, June 1 (Reuters) - The Food and Drug Administration has told Abbott Laboratories (NYSE:ABT - news) that its thyroid medicine Synthroid has a "history of problems'' and cannot be recognized as "safe and effective,'' the Wall Street Journal reported in its online edition on Friday.

http://www.forbes.com/2001/06/01/0601ns.html

Lotronex Update

Los Angeles Times
Wednesday, May 30, 2001

FDA Moving to Revive Deadly Drug

Health: Agency director works with manufacturer to bring back Lotronex despite fatalities.

By DAVID WILLMAN, LA Times Staff Writer

WASHINGTON-- Senior Food and Drug Administration officials are planning how to bring back to market a pill for a common bowel disorder despite new evidence that the risk of a life-threatening complication is far higher than thought when the drug was withdrawn in November, government documents show....

Gluten Intolerance

Many of us have gluten intolerance symptoms!  Though we feel it so difficult to consider giving up wheat etc, it is possible to do and worth it for many. Here's a little information about it that came my way today. Toni and I are gluten intolerant, and Dr. Cheney among many other good CFS doctors feel CFS patients could benefit from removing wheat and other gluten sources from diet for a time.  -elly

WHEAT, GLUTEN AND RHEUMATOID ARTHRITIS

In the journal Clin Exp Rheumatol. 2001 Mar-Apr;19(2):201-3, investigators described the case of a patient with a two-year history of adult dermatomyositis. This is a relatively rare form of rheumatoid arthritis that has many skin symptoms. The patient had malabsorption and had celiac disease. Their observation raises the question of an association between this condition and celiac disease.

Dr. Mercola COMMENT: People with rheumatoid arthritis, as well as other autoimmune diseases like lupus, are known for their horrible digestion, stemming from a condition known as hypochlorhydria--low stomach acid. In some cases, the affected person may have achlorhydria--no stomach acid. When this condition is present, protein molecules cannot be broken down adequately and minerals cannot be properly absorbed. This leads to nutritional deficiencies, as well as increased allergic responses from the immune system. When chronic, the immune system simply gets confused and begins attacking the body it is supposed to protect. Gluten allergy is also a common food sensitivity and celiac disease is a feature in many autoimmune diseases, as well as some forms of schizophrenia.

The solutions? Use digestive enzymes and HCL supplements with every meal, especially if autoimmune conditions run in your family. Avoid wheat, oats, barley, rye,  "sweet" rice, and some varieties of corn if you have trouble digesting them. Otheor at least 7 hours before cooking to help "pre-digest" them and break down the phytates in the bran of the grain. Phytates inhibit mineral absorption.

"How do I acidify the water?" Easy. Simply add 1-2 tbsp of raw cider vinegar, lemon juice, or live yogurt to your water and grain and let sit at room temperature for at least 7 hours.

Article sends people to http://www.mercola.com for more info.
More celiac articles and Mercola comments can be found at
http://www.essense-of-life.com/info/tceliacdisease.htm

Alternatives To Push and Crash

From Bruce Campbell, CFIDS/Fibromyalgia Self-Help:

This week's article in the series "Keys to Coping and Recovery" discusses an alternative to "push and crash." Pacing offers a way to lead a more stable and predictable life.

For the full article, see:
http://home.flash.net/~brucepa/ten_keys.htm

New Lyme Disease Studies

From The News England Journal of Medicine:

Because of their potential importance in the treatment of Lyme disease, these articles are being published early (on June 12, 2001). The articles are now available the Web site (http://content.nejm.org/) and will appear in the July 12, 2001, issue:

• Prophylaxis with Single-Dose Doxycycline for the Prevention
  of Lyme Disease after an Ixodes scapularis Tick Bite
       Robert B. Nadelman and Others
• Two Controlled Trials of Antibiotic Treatment in Patients
  with Persistent Symptoms and a History of Lyme Disease
       Mark S. Klempner and Others
• Medical Progress: Lyme Disease
       Allen C. Steere
• Editorial: Doxycycline for Tick Bites -- Not for Everyone
       Eugene D. Shapiro

Introducing Fibromyalgia Aware Magazine

From Lisa Lorden, About.com CFS/FMS Website:

As the About.com Guide to Chronic Fatigue Syndrome and Fibromyalgia for the last nearly three years, I have been fortunate to have the opportunity to reach people all across the Internet.  Now I have been invited to be involved in the creation of the first-ever trade magazine on Fibromyalgia! I was honored when the president and founder of the National Fibromyalgia Awareness Campaign--a non-profit organization committed to educating patients, doctors, and the public about Fibromyalgia--asked me to work on this important and much-needed project.

What is Fibromyalgia Aware?

This print publication will be a full-color, 68-page magazine of the highest caliber and will be distributed on a quarterly basis by subscription, to NFAC members, and eventually in selected stores across the country.  It will cover the latest news in research and treatment information, as well as articles to help you manage your illness and live well despite this debilitating condition.  A renowned Medical Advisory Board will oversee the quality and accuracy of the editorial content, and an Advertising Standards Committee will ensure the integrity of the publication and the advertisers which help support our work.

When will Fibromyalgia Aware be available?

The premiere issue is tentatively scheduled for release in late October, 2001.  

We hope you'll join us in this exciting undertaking by expressing your interest! We welcome your comments and feedback.

About the National Fibromyalgia Awareness Campaign
The National Fibromyalgia Awareness Campaign (NFAC) is a non-profit
[501(c)(3)] organization whose mission is to develop and execute programs
dedicated to improving the quality of life for people with fibromyalgia by
increasing the awareness of the public, media, government and medical
communities.  Founded in 1997 by Lynne Matallana and co-directed by Karen
Lee Richards, the NFAC is an all-volunteer organization dedicated to efforts
on behalf of people with FM, which will provide hope for a better future.

For more information about Fibromyalgia Aware: http://www.fmaware.org

After three years at About.com, it's time for me to move on. I've made the decision to leave About to pursue other endeavors, so July 1st will be my last day as the CFS/FMS Guide. I want to express my heartfelt thanks for your support of this site, and for the many ways you've touched my life. 

Lisa Lorden Leaves About.com

http://forums.about.com/ab-chronicfatig/messages?lgnF=y&msg=5424.1

Wow. Where do I start?
After three years at About.com, it's time for me to move on. I've made the "bittersweet" decision to leave About to pursue other endeavors, so July 1st will be my last day as the CFS/FMS Guide. I have been given some wonderful opportunities elsewhere in the FM/CFS community, and I will be able to continue my writing and advocacy work in a new venue.

You can read more about my plans for the future at my personal site at http://lisalorden.com and find out how to stay in touch. Some of you have been with me from the beginning, since the old MiningCo. days when our forum began with it's very first message. Others I have only just met, but it has been my privilege to connect with all of you. I tend to get mushy and reminiscent with good-byes, so bear with me while I try to put words to what is in my heart.

When I got sick and was forced to give up my job and many of the things I valued in my life, it was devastating; I know many of you have experienced these losses and more. But with all I lost - my health, my career, and even my identity - I never imagined that it would lead me to an opportunity as important and meaningful as my work has been with you and this website. I set out to teach others what I knew, but I learned even more from you. I wanted to reach out to patients and let them know they are not alone, but I have been touched by more kind souls than I knew possible. I wanted to contribute, but I received even more in return. I have been inspired by your strength, and comforted by your kindness. I have been touched by your generosity, and humbled by you courage. This group of people, this community, moves me and amazes me in some way each and every day, and I have to tell you I am proud to say I am one of you.

This is not "good-bye," but rather "til we meet again," along the path we all travel with this dreaded disease. Know that I'll still be here, on the other side of the computer screen, like you--searching for answers--and sharing what I've learned... and anxiously awaiting the day that there is a cure. Then together we can "look back" on this and smile...remembering how we have been there for each other, and marveling at how much we've learned and how strong we've become.

With much love and heartfelt appreciation,
Lisa

(Thanks, Lisa, for that you have done - and will continue to be doing - to promote education and awareness for CFS and FMS!)

Body Toxic: An Environmental Memoir

New York Times Book Review
June 24, 2001

"Body Toxic: An Environmental Memoir"
By Susanne Antonetta

"This is the story of a body," Susanne Antonetta tells us
near the end of what reviewer Michael Pollan, author most
recently of "The Botany of Desire," calls "her arresting
memoir" of a New Jersey girlhood lived in the shadows of the
20th century's most sinister molecules: the DDT, tritium,
chlordane, benzene and plutonium that are now part of the
American landscape. Antonetta, the author of three
collections of poetry, spent her childhood summers in a
bungalow on Barnegat Bay in southern Ocean County, one of
the relatively low-income "sacrifice communities" where the
toxic wastes of postwar civilization have pooled.

Antonetta's "considerable achievement" here is "to devise a
literary voice for the people who live in such places, for
the bodies that have been 'charged and reformed by the
landscape' of pollution." In Pollan's estimation, "What
Antonetta has written is something new -- a postpsychological
memoir. For her it is chemistry, more than childhood trauma,
that embodies the power of the past to shape the self."

Pollan says "the journalist in me bridled occasionally at
the easy commerce between biological fact and literary
conceit" that marks the author's approach to the events of
her own life. "This is very much a poet's book, gravitating
toward the striking image and away from the linear narrative
-- which by its nature might have forced the author to try
to deal more explicitly with cause and effect than she does.
By the end of this dark, disturbing book, you realize
Antonetta has posed a challenge to our prevailing notions of
science and journalism and even literary narrative."
http://www.nytimes.com/books/01/06/24/reviews/010624.24pollant.html?0622bk

First Chapter: "Body Toxic"
http://www.nytimes.com/books/first/a/24antonetta.html?0622bk

Looking Good But Not Feeling Fine

Saturday June 23 12:31 PM EDT
Looking Good But Not Feeling Fine
By E'Louise Ondash
HealthScoutNews Reporter

SATURDAY, June 23 (HealthScoutNews) -- Sherry M. is not surprised by the
occasional disgusted glance she gets after pulling her car into a handicapped
parking place. After all, she looks perfectly healthy.

<...>

Millions of Americans have what some call "invisible disabilities" or "hidden
illnesses." They look well, but they deal with serious physical problems --
everything from post-polio syndrome, lupus and hepatitis to diabetes, Crohn's
disease and irritable bowel syndrome.

Still others contend with so-called "elusive illnesses" like chronic fatigue
syndrome, fibromyalgia and chronic pain. Medical experts say these are
particularly difficult to live with because many people -- both doctors and
the public alike -- aren't convinced that all elusive illnesses are true illnesses.

"These people endure not only the suspicions of friends, family and
co-workers, but their own self-inflicted doubts about whether their
condition is real," says Carol Sveilich, a former university counselor
who gave up her job because of Crohn's disease and fibromyalgia.

"Sometimes they wish that they actually appeared disabled so that
people would take their illness and limitations seriously," Sveilich says.
"Others try to appear normal and healthy so they blend in, but this
impacts their symptoms, stamina and pain."

Research: Autologous Lymph Node Cell Transplant in CFS

Clinical and Immunologic Effects of Autologous Lymph Node Cell Transplant in
Chronic Fatigue Syndrome

Journal: Journal of Chronic Fatigue Syndrome, Vol. 8(1) 2001, pp. 39-55

Authors: Nancy G. Klimas, MD; Roberto Patarca-Montero, MD, PhD; Kevin
Maher, PhD; Mack Smith, RN, ARNP; Oliver Bathe, MD; Mary Ann Fletcher, PhD

This work was supported, in part, by a grant from the CFIDS Association of America,
by NIH Center Grant 1UD1-AI 45940-02, and funds from Neoprobe Corp. & Ciratech Corp.

ABSTRACT.
An open labeled, phase 1, safety and feasibility study using lymph node extraction, ex vivo lymph node cell expansion, followed by autologous cell reinfusion was evaluated as a potential immunomodulatory treatment strategy in patients with chronic fatigue syndrome (CFS). The experimental therapy utilized the cells of the lymph node, activated and grown in culture with defined media, interleukin-2 (IL-2) and anti-CD3 to activate and enhance cellular immunological functions. This procedure was designed to change the cytokine pattern of the lymph node lymphocytes to favor expression of T -helper (Th)1.-type over Th2-type cytokines. The mixed population of ex vivo immune-enhanced cells were reinfused into the donor, who was carefully monitored for adverse events and possible clinical benefit. There were no adverse events. There were significant improvements in clinical status in association with a significant decrease in Th2-type cytokine production.

INTRODUCTION
Previous research from this laboratory and others indicates that people who have Chronic Fatigue Syndrome (CFS) frequently have two interrelated problems with immune function: (a) immune activation, as demonstrated by elevated numbers and proportions of T lymphocytes expressing surface markers of activation (CD26, CD38), as well as elevated circulating levels of cytokines (1-3); and (b) poor cellular function, with low natural killer cell cytotoxicity (NKCC) and poor lymphocyte response to mitogens in culture (1,2,4,5).

The decreased NKCC and lymphoproliferative activities and increased allergic and autoimmune manifestations in CFS support the hypothesis that the immune system of affected individuals is biased towards a T helper(Th)2-type, or humoral immunity-oriented cytokine pattern (6). The factors that could lead to a Th2-type shift among CFS patients are unknown, although stress, infection or exposure to vaccines have been shown to lead to long-term, non-specific shifts in cytokine balance (7,8). Therapeutic regimens that induce a systemic Th1-type bias are being tested and include poly(1)-poly (C12U) (9) and bacterial vaccines (Staphylococcus and Mycobacterium vaccae) [see international published patents number WO-09829133 by Goeteborg University Science Invest AB (Carl-Gerhard Gottfries and Bjoern Regland) and number WO-09826790 by Stanford Rook Limited (Graham Rook, John Stanford and Alimuddin Zumla)].

The present study describes a therapeutic intervention aimed to induce a more favorable cytokine expression pattern though the use of ex vivo lymphocyte manipulation with interleukin (IL)-2 and anti-CD3 followed by adoptive cell transplant. IL-2 is a Th1-type cytokine and a Th1-response inducer. Both IL-2 and anti-CD3 help activate T cells. The lymph node cells cultured under conditions designed to favor a Th1-type pattern are then reinfused into the donor who is monitored for adverse events and potential clinical benefit.

[Article copies available for a fee from 
The Haworth Document Delivery Service: 1-800-342-9678
getinfo@haworthpressinc.com 
http://www.HaworthPress.com ]

Books Recently Added to our Online Library

Disability and Chronic Fatigue Syndrome: Clinical, Legal and Patient Perspectives
by Nancy G. Klimas (Intro), Roberto Patarca (Editor)
Paperback - 116 pages (March 1998)
Haworth; ISBN: 0789005018
http://www.amazon.com/exec/obidos/ASIN/0789005018/cfsupport

Living With M.E. - Chronic Post-Viral Fatigue Syndrome
by Dr. Charles Shepherd
Paperback - 400 pages (February 1999)
Trafalgar Square; ISBN: 0091816793
http://www.amazon.com/exec/obidos/ASIN/0091816793/cfsupport

Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
Journeys with the Dragon
by Naida Edgar Brotherston
Paperback - 186 pages (December 2000)
Haworth Medical Pr; ISBN: 0789012081
http://www.amazon.com/exec/obidos/ASIN/0789012081/cfsupport

Evening Light
by Floyd Skloot
Paperback - 64 pages (February 1, 2001)
Story Line Press; ISBN: 1586540009
http://www.amazon.com/exec/obidos/ASIN/1586540009/cfsupport

Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition)
by Devin J. Starlanyl, Mary Ellen Copeland
Paperback - 432 pages 2nd ed (June 2001)
New Harbinger Pubns; ISBN: 1572242388
http://www.amazon.com/exec/obidos/ASIN/1572242388/cfsupport

For more, see our group library and bookstore at:
http://www.geocities.com/cfsnova/bookstore.html

Final Word

An Epitaph:
Harry Edsel Smith
Born 1913 - Died 1942
Looked up the elevator shaft to see if the car was on the way down. It was.

(from Things to Ponder On:
http://homepages.rootsweb.com/~cpalmer/ponder.htm#epitaphs)

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