Selections from Emails, Meetings, and More
RemedyFind.com
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
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.
RemedyFind
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
MD/PhD |
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
Attorney |
Long Term Disability Benefits
Mr. Fuller is at the firm McChesney & Dale. |
|
Feb 17, 2007 |
|
|
| Mar 17, 2007 |
Anita Bains,
MS, RN, CS-P
Jonathan Gilbert,
NCCAOM |
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
http://www.thattakesovaries.org/htmls/homepage.html
Lecture and book signing.
Fred Friedberg, PhD. PWC and author of
Fibromyalgia & Chronic Fatigue Syndrome:
7 Proven Steps to Less Pain and More Energy
http://www.lifebalance7.com/
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.
http://www.timescommunity.com/site/tab1.cfm?
newsid=16909620&BRD=2553&PAG=461&dept_id=506035&rfi=6
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.
http://www.zwire.com/site/tab1.cfm?newsid=
16909623&BRD=2553&PAG=461&dept_id=506035&rfi=6
"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
http://msmagazine.com/summer2006/wakeupcall.asp
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 http://www.AM570WTNT.com. 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:
http://www.spiritualityhealth.com/NMagazine/current.php
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
http://health.groups.yahoo.com/group/CFSupport/message/1597
Self Esteem and Disabiltiy
http://health.groups.yahoo.com/group/CFSupport/message/1612
Dr. Cheney, PFO's (openings in the heart), & CFS
http://health.groups.yahoo.com/group/CFSupport/message/1619
IACFS Newsletter: Special Fall 2006 Issue; Distributed to CFSupport with permission
http://health.groups.yahoo.com/group/CFSupport/message/1644
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 Portsmouth.co.uk 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 Portsmouth.co.uk 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
THE SKYDIVER & THE ORPHAN TEDDY BEAR
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 [ 4hcm.org/WCMS
] 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
Vetcentric.com - 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
Post
Buy stamps online at USPS.gov 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
http://www.townsendletter.com/Oct2006/Oct2006.htm
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
http://www.townsendletter.com/Oct2006/Oct2006_bigcover.htm
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)
Shorts
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
http://www.townsendletter.com/AugSept2006/painfree0806.htm
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:
Wednesday
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. |
Monday
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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