Selections from Emails, Meetings, and More
Toni rates us "10" at
Meeting Summary featuring Dr. Blackman:
Return of Soul to Medicine &
Role of the Physician in Integrative Medicine
Media News (Elly on TV!)
Language CFS Resources
& Most Updated Web Pages
CFS is My
Non-Traditional Ways to Spend a Holiday
Items, Gifts, Cards: Raise Awareness, Funds for CFS, FM
The EGG Dish
CFS Classic - The Alchemy of Illness
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
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
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.
Toni rates us a "10" at RemedyFind
RemedyFind.com is [was -- see "Update" note below] a place to share what works for you, see what works
for others. The website tallys ratings of treatments, support,
products, and more, by illness. Last fall, I heard it was the 16th most
popular internet health site in the world. It was founded by
person with CFIDS (PWC), Brett Hodges. You can describe your experience
with medications, individual supplements, herbs,
acupuncture, air purifiers, support groups, and much more. It takes
some patience to set up an account and learn how to interact with the
website, so give yourself a little time to fiddle. Share with care your
hard earned knowledge. Voting for other people's reviews you find
helpful encourages them to take the time to write more helpful stuff.
"Emotional Support: Support Groups" has a weighted rating of 7.7 out of
10, higher than many other "treatments." Last July, Toni Marshall,
decided to write about our group there, using her perspective as both
an attendee and as a leader. She has been a member of many kinds of
groups and been a leader in other groups, too. She is a past president
of a local NOW chapter. She found our group to be unique and
particularly helpful. Her testimony:
Helped me live & feel
Positive side effects of the
Northern Virginia Chronic Fatigue Syndrome/Fibromyalgia Support Group
Learning gratitude (ex: bad as this is I can still toilet myself); how
to think outside of the box that was my life; that there is life after
disability; that I'm more than my work, my financial or family status,
my shopping habits, my education, or my ability to keep up with the
work of others.
I learned about balancing supplements thanks to Elly Brosius, who
studied college book stores' sales of last year's Nursing Manuals for
clues to relief of her symptoms, benefitting anyone who listens,
stabilizing my own symptoms to a hum while remaining disabled.
Got good advice about applying for Social Security after losing my job.
Learned of doctors, drugs and treatments others with my conditions
Learned to find humor in the ramifications of my conditions
(CFS/FM/OI-POTS & NMH/Reynaud's Syndrome/EDS/Sjogren's) with
suffering similarly, relieved to be understood & believed for a
Introduced to the most successful treatment I've had for 3 life-long
symptoms for which I've long sought treatment, never successfully
treated before. The successful treatment I'm is receiving herbal
treatment from Herbologist Jonathan Gilbert, who sought to speak to
NoVA CFS/FM Support group when I was planning & leading group
meetings (2000-2003), held once a month.
Learning to accept difficult behavior of others who are suffering
similarly, to accept criticism and compliments without apology, while
learning to be less difficult myself.
Remedyfind was purchased by Revolution Health and the links have been
changed. The website is not longer easy to use, its slow, and has
significant drug emphasis. They did keep some of the old ratings and
allow for more. Toni's above testimony can be found here
. (10/07; link updated again 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
Special Events/Special Locations, Details TBD
Rivka Solomon, PWC and author, visits area with
Ovaries! Bold Acts and the Brazen Women Who Commit Them
Reading / open mike event for women's empowerment.
Association Spotlight: Rivka Solomon, PWC
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
Read 3 excerpts of the book (2 have laugh out loud elements) at
Lecture and book signing.
Fred Friedberg, PhD. PWC and author of
& Chronic Fatigue Syndrome:
7 Proven Steps to Less Pain and More Energy
6400 Democracy Blvd., Bethesda, MD
Time: 1:30 - 3 PM
Keep up to date by using our Events
The Return of Soul to Medicine
& The Role of the Physician in Integrative Medicine
The October Meeting Summary Featuring Dr. Blackman is here.
At last month's meeting, Janine Blackman MD/PhD, shared her experience with us. Please see our
new Speaker Page for
which the meeting summary, her background and credentials, and text
versions of the 4 handouts she
brought. Links to PDF versions are available there for the first 3.
Here are links to the text versions and the meeting summary:
Medicine–much more than simply Complementary or Alternative
work as an Integrative Physician
Simple Nutrition Principles
the Integrative Physician
The multi page meeting summary can be found here:
Member Media News
Brosius did her first TV news interview, as part of the CFS Public
Awareness campaign push! It aired nationally Nov 3, 2006 and is on the
internet at the NBC Salt Lake City affiliate, KSL.com. Viewers can post
comments about the story there.
Elly, being on must see CFS TV on NBC, was a big milestone. She'd been
offered TV local interviews before, but always had to turn them down
and find other group members for the reporters to film. The potential
exertion of a TV interview, the trying to look and act presentable, the
stress of having such a large audience was too much and produced
symptoms -- even being asked to be interviewed in the past produced
unbearable symptoms. This time, it went well and she felt relatively
good, handling the pressure-wise. It was still physically a bit
demanding and produced a few symtpoms, especially when they asked her
walk uphill at the Capitol. Elly credits her consistant improvement of
handling stress better to following the custom herbal program for CFS
prescribed by Jonathan Gilbert and particularly following the
mind-body-spirit elements of the program as well.
affiliate which aired
the story Elly was in named the story differently. Two are online, the
first has a longer story and video in Real Player, the second one has a
member and moderator Toni did an extensive telephone
interview with a free lance reporter. We'll let you know when that
piece gets published.
member, Helen, was quoted in a follow up CFS story at News 10NBC,
For more media coverage, see our In
the Media page and the
Awareness for CFS Media page at CFIDS.org
Spanish Language CFS
CFS is known in
Spanish as SFC, El Síndrome de Fatiga Crónica
1) 1st CFS Documentary in Spanish - Trailer now available
2) Telemundo Show about CFS, Friday, 11/24/06
3) CFS in Spanish Miami newspaper, Nov 14, 2006
4) CFSupport's list of links for CFS, FM, in Spanish
1st CFS Documentary in Spanish
Clara Valverde of Dziga Productions inBarcelona, Spain, announced the
release of the 7 minute trailer of the first documentary in Spanish on
CFS, "Amapola y los Aviones". This 55 minute broadcast-quality
documentary produced by Producciones Dziga, will be released mid-2007
and it features the voices of the forgotten people who live with CFS.
More information can be obtained from formacionsalud AT hotmail DOT com
The trailer can be viewed through this link
2) Telemundo Show about CFS
a CFS story
on Friday, November 24, 2006. (Telemundo is channel 88 for Cox in
Fairfax Co.) The news show is titled "AL ROJO VIVO
con Maria Celeste
broadcasted nationally in the US, but it can also be seen worldwide
through cable in Europe, Middle East and the Scandinavian countries
from 5:00 pm to 6:00 pm. The network changed the air date from November
17, 2004, because they felt that the CFS story deserved a better time
slot, to put "this story as a hopeful expression that there are people
concerned about other people with CFS."
Marly Silverman from PANDORA,
a CFS and FMS patient alliance,
was interviewed along with Nancy Klimas, MD, and Rosa
CFS patient. The contact e-mail for the show is
email@example.com. Please send them a note of thanks to
show's producers. The reporter of the CFS story is Marcelo
Urquidi. Please mention his name in your e-mails to TELEMUNDO.
For more from South Florida, check P.A.N.D.O.R.A.'s
What's New page
for the 8th International IACFS Conference for CFS and Related Illness
co-hosted by IACFS and P.A.N.D.O.RA. Jan 10-14, 2007.
Newspaper article about CFS, "Un mal que destruye la vida laboral"
[The illness that destroys your "working life"
(ability to work)]
4) CFSupport links for
CFS and FM information in Spanish
Our list of links
for CFS, FM, in Spanish is found at
Resources Page, En
To look at our entire website, CFSupport, in Spanish, go to our Home
page and click "Espanol" -
one of the links across the bottom.
Our Newest &
Most Updated Web Pages
Our Resources, References and
section doubled with new categories for Recovery
Food & Water, Working While Ill, Coping, Testing and more. It
new color coded by page table index.
For those who wanted to just be able to print the excerpts
of articles by herbologist Jonathan Gilbert instead of the long speaker
page, we have a new PDF page that just has the excerpts. PDF
of Excerpts of Jonathan Gilbert Articles
The About Us
page has new sections for Elly Brosius and Toni Marshall, our
There is a new Art
Gallery, displaying some of our members' talents. Since there
are photos on that page, high speed internet access is recommended.
lawyer, and other professionals list continues
to be updated regularly. We've had some more member recommendations
and 5 practitioners discovered our list an ask to be added.
feel they have something to offer patients with CFS and FM. Four were
added. We try to email a little with the practitioner, check out their
website and make sure CFS and fibromyalgia are mentioned with respect.
Beyond that, we cannot predict how it will go between any patient and
any doctor. For more detail than we feel we can give on the web pages,
please email, call, or attend a meeting.
CFSupport's Amazon Associates
has a new look and new sections: FM Books, CFS Books, Snacks-Dark
Chocolate, Foot Rests, and Portable Seats! Its new and so will be
undergoing more changes. We can only list items there that Amazon
sells, so our favorite brands might not be there. Please also check our
page of Resources-Shopping.
CFS is My
Design your own web page & raise $ for CFS
A new way to advocate about and raise money for CFS research &
education is "My Cause," a brand new online fundraising
innovation. It takes a few clicks of your mouse to get started and you
can build a personal web page to tell your story and engage others in a
cause that's important to you. If you want to add your own pictures, it
may take a little more effort. Your participation may help the CFIDS
Association raise more—and do more—to assist people
chronic fatigue syndrome.
You can set up a page without donating anything yourself. Small amounts
are welcome from you or the people you hope will donate in your name.
It all adds up. To avoid being overwhelmed, set a very low to
reasonable "fundraising goal." It will be more fun to exceed it, than
crumble under an unmet expectation.
For those unable or uncomfortable with online donations, there is a
form for printing and mailing with checks. Your page will get credited
in a week to 10 days.
"My Cause is CFS" pages are on https (secure). I was not able to google
my own page even after a few weeks. You have to tell people its there.
You can be as passive or aggressive with fundraising as suits you.
To get started, visit http://www.mycausecfs.kintera.org
and click "Create your Page." Or start snooping around the
top fundaisers' pages or search for your friends.
To read comments from My Cause participants, and to see examples of
personal web pages, visit http://www.cfids.org/about/mycause-testimonials.asp.
"Fortunate to be
CFIDS Association My Cause fundraiser, I enthusiastically encourage
enrollment! With notes about supporting and honoring our cause,
ourselves and one another, this is an attractive, meaningful, and
convenient way to ask for and make tax deductible donations for the CFS
cause. Making a personalized web page is fun, but a little work at the
beginning - so maybe plan to do it in two sessions. I found it
surprisingly smooth to make changes later. Inviting others to stop by
your page, learn a little about CFS and you, and donate is next, and I
especially appreciate that I choose when and how to solicit, using the
tools given to suit my style. I can send out emails created at My
Cause, send out my own emails with my page's URL, add a link to my page
at another website, or print a form for non-computer users. Please join
me as a CFS is My Cause Fundraiser!"
my personal web page!
-Elly Brosius, Virginia
To learn more about My Cause, visit http://www.cfids.org/support/donations-mycause.asp.
If CFS is not your cause, check out the other ones listed at http://www.kintera.org.
If My Cause doesn't move you in a good way, its okay to just move on.
Questions? Contact The CFIDS Association at firstname.lastname@example.org.
Top 10 Non-Traditional Ways to Spend a Holiday - by
Your family and friends may be as hard working as mine, dreading the
decisions they must make for Holiday Dinner among divorced parents,
in-laws, who may also be divorced, and you, often accommodating as many
groups of family as possible by making more than one stop in one day,
often with only one day off from work.
It's easier to feel grateful for family and friends while alone on a
holiday when I remember making similar difficult decisions in years
past. It's even easier when I find something
non-traditional, to do on a holiday. Try this list:
Top 10 Non-Traditional Ways to
Spend a Holiday
David Letterman's Top 10 List & some Holidays of mine &
Call relatives and friends after dinner on the holiday, rather than
joining them for dinner.
Yep, Norman Rockwell had his day and this is ours;
Breakfast rather than dinner, at a restaurant or a few eggs at home;
Catch up on cable television marathons, like TNT's "The Closer" or
SciFi Channel's "Eureka," etc. Yep, as long as there's food
cable in the house, I enjoy being home in my pajamas! So much
be grateful for: electiricity, cable/satellite/Fiber Optics
service, a VCR tape or DVD and a player, refrigeration, shelter, heat
or air conditioning, vision, hearing or
closed-captioning, wonderful technologies and services by people we're
never gonna meet, etc.;
Eat Out for your Holiday dinner with family or friends. After
people are going to work that hard for such a big and important meal,
nice when they get paid for it;
Make a list of everyone who has touched you in an important way this
year, be it doing something for you, saying something you appreciated,
being there, or more simply, appreciating delivery or repair or other
show up reliably providing for your wants or needs;
Write a thank you to a few of the people on the above list
(Non-Traditional Way #6), whether you mail them to the person or not;
Take photos of your pets or other animals and living things around your
home or apartment - like the bright red cardinal I saw in my apple tree
Be creative: Doodle with paper and pen that're handy, or, draw something
you think you can't, or, scribble and then color the spaces of the
with highlighters, crayons, colored pencils or pens, etc., or, paint
fingerpaints, or, start a collage project by cutting out interesting
magazines to paste into a notebook or onto poster paper, etc., etc.;
Bundle up and soak up some fresh air at a local park. Yep,
one of my
favorite birthdays was celebrated on a sandy beach near home;
And, The #1
Non-Traditional Way to Spend a Holiday (drum roll, please!):
Receive Therapeutic Massage at home. Yes, a member of our
to tell us how pleased she was to arrange for an in-home Massage for
Thanksgiving Day, offered by her massage therapist!
If anyone out there has more ideas for a non-traditional holiday,
we can make a top 20 list, or top 30. Send your
ideas. And thanks.
Wishing you all a fine holiday season.
Holidays can be a time of great joy, they can also
dilemmas for people with CFS/FMS and other invisible illnesses. Here
are some articles that address the stress.
Up to Enjoy the Holidays (4 pages, PDF)
by Don Uslan, MA, MBA, LMHC., of Seattle, WA; FM Netnews
patients in this October 2005 FM Network to remember
their limits and resist the temptation of over-doing it. “The
person with FMS/CFS who, during the rest of the year, could only
function “part-time” without physically crashing is
same person who demands of themselves 12-hour-days for preparing a
Thanksgiving get-together,” says Uslan. “Nothing
changed but the calendar; make your limitations clear and request
Read particularly with your
specific plans for this year in mind.
Provides a wealth of advice for possible situations you may face during
the next two months.
THE HOLIDAYS - Give yourself the G.I.F.T. of a stress-free holiday
by Karen Lee Richards at FMAware.org
Does the thought of
another holiday season fill you with joyful
anticipation or overwhelm you with fear and dread? The average person
considers the holidays at least somewhat stressful. For people with
fibromyalgia, who are already struggling to cope with daily life in
general, the added demands and stresses of the holidays can trigger a
flare of fibromyalgia symptoms. While you may not be able to totally
avoid all stress, you can reduce your stress level significantly by
giving yourself a G.I.F.T.
G - Guilt must go
- Importance rules • F - Family matters
• T -
Hot Tips - Tips for People with CFIDS (PWC's) and Caregivers
'We must allow
ourselves to receive graciously, gratefully, and
unconditionally. The "Oh, you really shouldn't have..." syndrome is
damning to your self-esteem. It's a way of saying, "I'm not really
worth it" and it takes joy away from the giver ("Gee, maybe I really
shouldn't have!). Recognize that the giver chose to offer you this gift
and allow yourself to bask in the feeling of love or appreciation that
the gift represents.'
Bill Gareau and Lisa Burdick, Counselors
'Understand that the PWC may have to limit their holiday activities and
engagements. Help create a "new normal;" challenge old traditions and
start new ones that are manageable, enjoyable and meaningful for you
and the PWC. '
C. Canton, CA
on Call - PUTTING THE "FUN" IN DYSFUNCTIONAL
Martha Beck offers a new approach to surviving family gatherings in O Magazine.
Like it or not, to grandmother's house we go! Some sanity-saving
strategies to pull you through not-so-silent nights and days with the
family, including dysfunctional family bingo!
on Surviving The Holidays at FM Online Volume 5, No 17; 2005
Parent's Corner: Surviving the Holidays While Coping With Illness
Robinson, Lyndonville News, Pediatric Network for CFS, FM & OI
Whether this is your
holiday with a child with CFS or your 5th, a little planning and
attitude readjustment can go a long way to making it an enjoyable time
of year for your whole family. My feelings on holidays are much like my
feelings were about vacations in the July issue. Don't let CFS rob you
of these special days. No matter how ill your child is, you can help
them to make magical memories.
To Cut Down On Holiday Stress With A Simple Holiday Meal
About.com, Stress Management
Tip #6. Get Take-Out. If all of
this sounds too complicated, there’s an even simpler way.
restaurants and even grocery stores are beginning to offer pre-cooked
holiday feasts. All you do is pick up a cooked turkey or ham (which can
be reheated and served when you choose), and several side dishes. This
is a great solution for those who want a traditional meal for their
holiday celebration, but simply don’t have the time or
Holiday Items, Gifts,
Cards which raise Awareness and/or Funds for CFS, FM
Slamdunks CFIDS Items in the
D’Orlando’s Slamdunks helps people with Chronic
News – September 1, 2006 by Liz Jennings. Excerpt:
member] Pam Gobiel is suffering from Chronic Fatigue Syndrome, a
chronic illness she was diagnosed with five years ago. What
Gobiel’s 11-year-old niece Ashley D’Orlando has
create an on-line business that sells witty T-shirts, golf shirts,
mugs, note cards, and leisure apparel and raises awareness about her
aunt’s illness, all the while raising money for Chronic
Syndrome research. So
she has sold $1,500 in merchandise and has had over 1,000 hits on her
site. Ten percent of all proceeds go directly to charity and
rest of the money she has earned she puts into her college
She says she hopes to be a pediatrician some day."
Pam writes us,
I feel very lucky
Ashley as a spokesperson. She's realizes "people listen to me
because I'm a kid, it's not as interesting
if a 40 year-old tries to tell them about their illness".
Unfortunately, she's right... which is why she will keep going as far
as she can to get us the attention we need.
See also: Business Born of Love
in Melrose Free Press, August 10, 2006
More Holiday Cards
More Advocacy Gift Options
Pins, Posters, Bookmarks, Mugs, Totes, Notes, Bumper Stickers,
Swiss Medica donations to NFA with "024"purchase until end of 2006
024 is a
reliever product. We passed around samples of 024 at a meeting and at
the CVS in Chantilly last May. Some members report it helps with pain.
Warning: 024 is very smelly - other members cannot be around it!!!! The
main ingredient is 3.1% Camphor which is a higher percentage than
typical products. It can be used directly on skin over muscle aches or
put in bath water. http://www.024zone.com/fmaware
Until the end of
2006, Swiss Medica will
donate $4 from every order at its online store generated by the "Fibro Support Groups" (we are one of them) to the National
Fibromyalgia Association (NFA, http://www.fmaware.org).
of NFA's mission to improve awareness and bringer greater treatment
options to those suffering from fibromyalgia (FM, FMS).
O24 Fibromyalgia™ uses
patented technology to deliver its all-natural pain relieving
ingredients to provide temporary relief for aches and
pains associated with fibromyalgia. It is made from seven essential oils, and it
has been clinically tested and shown to be an effective and safe pain
reliever - the only
one to earn the coveted NFA's Seal of Approval.
The EGG Dish
Elly's Gratitude Group (EGG)
is a mind, body & soul discussion group for people with CFS,
FM, & OI. Members help each other practice appreciation to
"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.
I understand the November 1st EGG Conference Call was fun and even had
singing. Toni is still singing that song! I had to take my dog to the
vet. A meeting summary
EGG meetings are:
November 29, 2006
6 PM EST
(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
||11300 Rockville Pike, #1205; N
Dinner afterward at White Flint Mall at
The Cheesecake Factory across street ~7:30 PM.
Excerpts of CFS Classic
The Alchemy of
by Kat Duff