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Support Group

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Selections from Emails, Meetings, and More

<––Prior Newsletter      September 2006    Next Newsletter ––>
Upcoming Nova Speakers/Meetings
CFS/FM Media Coverage
A few recent CFSupport Emails
Sky dive for a FM support group!
Member Artists
Our Newest & Most Updated Web Pages
Energy Saving Tips, aka Saving a Trip
Oct Townsend Letter: FM, CFS, MCS, Testing & Treatment
Elly's Gratitude Group News


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

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.


Remedy Find [was] a great website, very popular [in 2006], and was founded by person with CFIDS, Brett Hodges. Brett has had kind things to say about our group! Thanks, Brett.

Remedy Find helped people by collating patient reports and rankings and displaying patient comments about various treatments tried. People thoughtfully entered their experiences for others to learn from.

People rated how they felt about medications, supplements, herbs, acupuncture, air purifiers, support groups, and much more. It [took] some patience to set up an account and learn how to interact with the website.

Update: Remedyfind was purchased by Revolution Health and the links have been changed. The website is no longer easy to use, it is slow, and has a significant drug emphasis. They did keep some of the old ratings and allow for more. Toni's  testimony can be found here. 10/07
Updated 11/09

Nova CFS/FMS SG Upcoming Speakers/Meetings

Meetings are the 3rd Saturday of every month, 2 - 4 pm
Large Conference Room
Mason Governmental Center
6507 Columbia Pike, Annandale, VA 22003

Oct 21, 2006 Janine Blackman
Integrative Medicine & how to talk to your doctor about it.
Nov 18, 2006 Discussion Possible guest - not confirmed.
Dec 16, 2006 Discussion Possible guest - not confirmed.
The first 3 meetings of 2007 will be in the
The Main Community Room of Mason Center:
Jan 20, 2007 Chuck Fuller
Long Term Disability Benefits
Mr. Fuller is at the firm McChesney & Dale
Feb 17, 2007
Mar 17, 2007 Anita Bains,

Jonathan Gilbert,
Herbal Brews & Evolving Views:
Reuniting the Body & Mind in FM, CFS & ME

Special Events/Special Locations, Details TBD

Rivka Solomon, PWC and author visits area with
That Takes Ovaries! Bold Acts and the Brazen Women Who Commit Them.
Reading / open mike event for women's empowerment.
The book has a chapter by Jane Colby who made the British Medical Establishment recant their dismissal of ME research. Her study of 333,000 children showed ME is an epidemic.
In the acknowledgments, Rivka notes it can take BIG ovaries to live with CFIDS.
Read 3 excerpts of the book (2 have laugh out loud elements) at

Lecture and book signing.   
Fred Friedberg, PhD. PWC and author of
Fibromyalgia & Chronic Fatigue Syndrome:
7 Proven Steps to Less Pain and More Energy
April 5, 2007
Davis Library
6400 Democracy Blvd., Bethesda, MD
Time: 1:30 - 3 PM
Updated 12/8/06

Keep up to date by using our Events page.

CFS/FM Media Coverage

Chronic fatigue syndrome - a lot more than being tired
Shannon Sollinger, Loudoun Times Mirror, July 11, 2006. Leesburg, VA. Page A1.
Front Page with photo of Elly! Features Elly, Mahsa, Myra, and Elly's Gratitude Group (EGG)
See the added comments by our members Toni, Elly, and Lolly, too, and post your own.

Chronic Fatigue Syndrome -- One Woman's Journey
Shannon Sollinger, Loudoun Times Mirror, July 11, 2006. Leesburg, VA. Page A11.
Photo of Myra! Courageous discussion of cognitive symptoms. Features Myra and a section with group contact information & more called "Just the Facts."
See Toni's comments after the article, too, and post your own.

"Wake-Up Call"
Hopeful new research shows that chronic fatigue syndrome may have a genetic basis.
by Nancy G. Klimas, M.D.
Health, Summer 2006, Ms. Magazine

Fibromyalgia was featured on Radio July 2
Thomas Roselle, DC focused on Fibromyalgia in his show "Total Health Concepts" which airs Sundays on AM 570, WTNT radio, at 11:am in the Washington DC area. Total Health Concepts has information on chiropractic, acupuncture, nutrition and other cutting edge aspects of complimentary medicine. They host questions live and advise how to help yourself without drugs, surgery, and the effects of medical intervention. While shows are not archived, Total Health Concepts is streamed "live" and available on the internet.  Scroll to "listen live" and tune in at Dr. Tom Roselle is a Fairfax, VA, practitioner and favorite of some members.  Roselle Alternative Care (703) 698-7117.

"You think you're tired?"
Mary A. Fischer
O, The Oprah Magazine
September 2006 (no link)

"What Kind of People Feel Too Much?
New studies on chronic fatigue and markers of sensitivity that may correlate to psychic experiences."
Betsy Robinson
Spirituality & Health, Sept/Oct 2006
Updates & Observations Section
Temporary link to show issue cover and table of contents only:
Features our August 2005 speaker, Michael Jawer.

See our In the Media page for more CFS/ME, FM, OI, Lyme, IBS in the news. Especially look for news starting Nov 3 when the rescheduled Press Confererce of the CFS Awareness Campaign begins. Story at Immune Support.

A few recent CFSupport Emails

NoVA CFS/FMS Meeting Summary July 2005, by Toni

Self Esteem and Disabiltiy

Dr. Cheney, PFO's (openings in the heart), & CFS

IACFS Newsletter: Special Fall 2006 Issue; Distributed to CFSupport with permission

Sky dive benefits FM support group!

I was tickled to know about this. I wrote my encouragement to Jon and the support group. What fun - what a leap! It is great to read how support groups can help people through the tough spots, and to see this level of creativity and commitment as way to say thanks! - Elly

From Newspaper, Aug 11, 2006

Going to great heights to say 'thank-you'

JUMPING 13,000 ft strapped to the back of a paratrooper is quite a long way to go to say thank you. But that is what Jonathan Bowles is doing for a support group which pulled him through the darkest days of his life and helped get him back on his feet. The 46-year-old was diagnosed with condition fibromyalgia – which causes extreme pain in muscles, tendons and ligaments –two-and-a-half years ago after years of being in constant pain. Some days he was so ill with the condition he said he felt as if he had been 'beaten with a baseball bat'. But Jonathan, from ..., Chichester, joined the Fibromyalgia Support Group for Surrey and Sussex and has never looked back. He said: 'The support group has been fantastic. They have helped me so much. Because fibromyalgia affects mostly women I thought I'd walked into a women's institute when I first joined, but they were brilliant.
Once diagnosed, his wife ... used her skills as a Reiki master to give him intense treatment which helped get him back on his feet and back to work.

He now wants to raise £5,000 through the jump this weekend in Wiltshire to put towards keeping the group going. He added: 'I went through a very black patch for about seven months and they really helped me through it.'

If you would like to sponsor Jonathan you can e-mail him.

From Newspaper, Aug 24, 2006

Sky dive that beat the pain barrier
A brave lorry driver who suffers from a condition that makes it painful to move his limbs has jumped 13,000 ft to raise £5,000.

Jon Bowles, 46, from Chichester, suffers from fibromyalgia and was determined to raise money for his local support group. He said the group pulled him through dark days after he was diagnosed with the condition which causes extreme pain in muscles, tendons and ligaments. After 10 months of preparation, Mr Bowles jumped with the Army Parachute Association at Netheravon, Wiltshire. He was joined by Groupie – the support group teddy bear mascot. After the jump, Mr Bowles said: 'I'm still a bit stiff around my neck and right shoulder but it was worth it. Wow! What an experience.'

Josephine Fisher, chairwoman of the Fibromyalgia Support Group for Surrey and Sussex, said: 'For Jon, who suffers with fibromyalgia, to undertake this tandem skydive was a personal triumph over his condition.' Mr Bowles, of Caspian Close, left sponsorship forms every time he made a delivery and many of the group's 400 members canvassed friends to help raise cash – with money pouring in from as far way as Belfast.

To make a donation to the group, [email] Ms Fisher.

For more photos of the August 19, 2006, sky dive, see support group website's
By Jeanne Hambleton

Member Artists

Empowering Heart Rhythm Quilt

CFSupport member Eileen has shared her quilts with us at meetings. Creating them is her meditation, and she finds and shares meaning as she sees. The Hypertrophic Cardiomyopathy Association (HCMA) has posted a picture on their home page [ ] of her "Empowering Heart Rhythm" quilt she presented to HCMA last June.  With the photo is an a thank you and the description written by Eileen and read at the meeting when the quilt was presented to the HCMA President.

Profile of Photographer, Member Wendy Albrecht
Photographer and artist strives to leave 'a wake of positivism' wherever she goes
Read whole story at Pentaluma Argus Courier
Published: Wednesday, Oct 18, 2006

Occupation: In addition to being an artist and photographer, Albrecht’s occupation is “Doing the best I can to leave a wake of positivism wherever I go. Help contribute to leaving every situation just a bit better than I found it.”

What got you interested in photography? “Imagine such an energy that it literally compels you to stop whatever you are doing or wherever you are rushing to and revel in its beauty. You then realize with a gasp at how happy you are just to be alive to witness something so exquisite. I enjoy photographing subjects that provide evidence that something can really affect a person — mind, body, and soul. Lately, I’ve expanded my art to mixed media including acrylic paint.”

Albrecht has also had her photographs published in five books.

How did you decide to pursue art? “I live in constant pain and fatigue from a syndrome called fibromyalgia. When my symptoms permit, I do art therapy to help distract me. My symptoms have worsened.   

Turning point in your life? “Even though I was diagnosed with fibromyalgia in 1997, I continued a type A life: working full-time, going to school full-time, living a loving life with my husband, doing activities with friends — just like many other people today. However, in 2003, my condition became so dire that it cost me my job. I never dreamed I’d be disabled.”

Your advice to others? “Live your bliss. I feel that life is way too short to not do what you enjoy — something that’s for your highest soul growth and that of others. And strive for balance in all areas of your life, especially for what you can control of your health — your health can become the limiting factor to every area of your life.”

Personal philosophy? “After my husband died, a wise health care provider suggested I live ‘Five Senses Bliss.’ I continue to find new ways to define that every day.”

Greatest challenge in life? “Every moment of every day walking some fine line that someone has drawn of doing enough activity in a day so that I don’t cause my body to freeze up or hurt more than it does, but not doing too much that I cause new or even more pain and fatigue.”


Our Newest & Most Updated Web Pages

Q&A, Our Way

Books by subject - high speed internet access recommended
Books from 2006

Events - Global

Gallery of our Photos - high speed internet access recommended
Gallery of Art  - high speed internet access recommended

Resources sections on symptom checklists, CAM, & other newsletters added.

About Us page expanded.
Toni's Opening Remarks to kNOw More CFS Seminar

Elly's Gratitude Group

EGG Member Letters
View A Guestbook of Gratitude (AGOG)
Sign A Guestbook of Gratitude (AGOG)

Energy Saving Tips, aka Saving a Trip

Pets - I started using Vetcentric in August and I found it helpful to save trips to the vet and pharmacy. Its a comprehensive veterinary pharmacy that ships to all 50 states. Working with your veterinarian, VetCentric can deliver nearly any prescription medication, flea and tick preventive, or customized compounded medication directly to you. I'll avoid using them in the hottest weather, since the medicines may overheat, but they have been friendly, efficiently with email reminders, responsive on the telephone, and offer discounts when sign up for automatic renewel. I have added Vetcentric to our Pet page. - Elly


Buy stamps online at or write online and let the Post Office print and mail your letters and cards to loved ones, friends and family members. NetPost® Print & Mail Services helps you stay connected with greeting cards, gift cards, postcards and letters. 

Can't stand long enough to pick out a greeting card? I learned to reduce symptoms and save money by ordering cards at Current. Having trouble sending cards at all? Save even more energy and money by not sending cards and not feeling bad about it. If you could do it, you would.  Its okay. -Elly

The Townsend Letter, “The Examiner of Alternative Medicine,” October 2006 Issue

Fibromyalgia, Chronic Fatigue Syndrome, Multiple Chemical Sensitivity,
Testing and Treatment

Full Table of Contents and Ordering Information (single issues $8). (360) 385-6021

The cover of this issue with Cinderella in her party clothes draped asleep over a pumpkin is a beautiful awareness poster. For the the large picture of the striking, attention grabbing cover, "Fibromyaglia: Too Tired to Go to the Ball," go to

Most relevant online sections:

Letter from the Publisher (see 2nd part)
Jonathan Collin, MD

("Clearly, when the fibromyalgia support groups and societies complain that there is no cure for fibromyalgia and that the only treatments are antidepressant drugs and experimental pharmaceuticals, they give short shrift to what we have to offer."

Thank goodness we are not one of the groups he is complaining about! - Elly)

Recent Progress in Clinical Applications and Research in Fibromyalgia
Robert W. Bradford, Professor of Medicine, D. Sc. NMD, and
Henry W. Allen, Director of Clinical Biochemistry, BRI
Overview of fibromyalgia symptoms and causes, a consideration of the role infectious microorganisms play in the illness, and a clinical outcomes study. 12 pages.

An Elimination Diet for Fibromyalgia
by Chuck Bates, PhD
In a follow-up to his article detailing an intensive elimination diet, Dr. Chuck Bates returns to offer further consideration of the diet’s value in treating fibromyalgia. He also presents a straightforward look at the success of this and other fibromyalgia treatments for patients in varying circumstances.
Online Publication only: The Elimination Diet for FM, Step by Step (22 pages, 224KB .pdf)

Fibromyalgia & Classical Homeopathy
Polycarbonate Plastic Bottles & Bisphenol A
Systematic Reviews & Evidence-Based Medicine
Genes & Chemical Sensitivity
Chemical Intolerance & Addiction
Treatment Ratings for Multiple Chemical Sensitivity
Magnetic Resonance Imaging Evidence of Fibromyalgia
Marshall Protocol for Sarcoidosis
Vitamin D Recommendations

Antidepressant Web Resources
Call to Action: Doctors to Help Prevent Environmental Pollution

From The August / September 2006 Townsend Letter
Pain Free 1-2-3! Neuropathic Pain
by Jacob Teitelbaum MD 

The EGG Dish

Elly's Gratitude Group (EGG) is a mind, body & soul discussion group for people with CFS, ME, FM, & OI. Members help each other practice appreciation to accelerate healing.

"EGGing Each Other On - Incitement to Insight" was published as the second story of the Member's Forum in the Pain Connection Summer / Fall 2006 Newsletter. Its Elly's story, written with Toni's help and encouragement, thus the byline, Elly Brosius with Toni Marshall.

The next 2 EGG meetings are:
November 1, 2006
5-6 PM EST
Conference Call Call (218) 936-6666; Usual code: 33669933
Press 2 to enter/create and existing conference,
then the code, then the # key.
December 4, 2006
4-7 PM EST
In Person
Conference room of
The Gilbert Clinic
11300 Rockville Pike, #1205; N Bethesda MD 
(301) 230-2530
Dinner afterward at White Flint Mall at
The Cheesecake Factory across street ~7:30 PM.

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Updated May 11, 2011