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Newsletter: Selections from Emails, Meetings, and More

November 2006

Toni rates us "10" at RemedyFind
Upcoming Nova Speakers/Meetings
October Meeting Summary featuring Dr. Blackman:
The Return of Soul to Medicine  &
The Role of the Physician in Integrative Medicine
Member Media News (Elly on TV!)
Spanish Language CFS Resources
Our Newest & Most Updated Web Pages
CFS is My Cause!
Top 10 Non-Traditional Ways to Spend a Holiday
Holiday Coping
Holiday Items, Gifts, Cards: Raise Awareness, Funds for CFS, FM
The EGG Dish
Excerpts of CFS Classic - The Alchemy of Illness

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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.

Toni rates us a "10" at RemedyFind 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 better
Positive side effects of the
Northern Virginia Chronic Fatigue Syndrome/Fibromyalgia Support Group are:

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 found helpful.

Learned to find humor in the ramifications of my conditions (CFS/FM/OI-POTS & NMH/Reynaud's Syndrome/EDS/Sjogren's) with others suffering similarly, relieved to be understood & believed for a change.

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.

Update: 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

Dec 16, 2006 Discussion  
Possible Holiday Social at a Restaurant
2007   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,

The Gilbert Clinic
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.
CFIDS Association Spotlight: Rivka Solomon, PWC
Biography at JWA
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
Keep up to date by using our Events page.
Updated 12/8/06

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 Dr. Blackman 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:

1. Integrative Medicine–much more than simply Complementary or Alternative Medicine
2. How I work as an Integrative Physician
3. Ten Simple Nutrition Principles & Vitality Foods
4. Role of the Integrative Physician
(links fixed 2/14/07)

The multi page meeting summary can be found here:

Member Media News

CFSupport member and moderatorElly 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, Viewers can post comments about the story there.

For 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.

Each NBC 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 photo:

Chronic Fatigue Syndrome the Topic of New Campaign 
NBC Radio/TV Salt Lake City - 11/3/06.
Video, Photo of Public Service TV Ad.

Chronic Fatigue: Is It All In Your Head?
NBC KCBD TV, Lubbock TX - 11/03/06
Photo of Elly, Photo of Brain Image.

CFSupport member and moderator Toni did an extensive telephone interview with a free lance reporter. We'll let you know when that piece gets published.

CFSupport member, Helen, was quoted in a follow up CFS story at News 10NBC, Rochester

For more media coverage, see our In the Media page and the
Spark! Awareness for CFS Media page at

Spanish Language CFS Resources

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

1) 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

Telemundo broadcast 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" which
is 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 Berrocal, a CFS patient. The contact e-mail for the show is  Please send them a note of thanks to the 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 and 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.

3) Spanish Newspaper article about CFS, "Un mal que destruye la vida laboral"
    [The illness that destroys your "working life" (ability to work)]
Especial para El Nuevo Herald, Nov 14, 2006

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 Espanol Section

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 Links section doubled with new categories for Recovery Stories, Travel, Food & Water, Working While Ill, Coping, Testing and more. It got a 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 co-leaders.

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.

The doctor, 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. They 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 Store 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 Cause - 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 with 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 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 Elly's testimonial:

"Fortunate to be the first 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!"
View my personal web page! 
-Elly Brosius, Virginia

To learn more about My Cause, visit If CFS is not your cause, check out the other ones listed at
If My Cause doesn't move you in a good way, its okay to just move on.

Questions? Contact The CFIDS Association at

Top 10 Non-Traditional Ways to Spend a Holiday - by Toni Marshall

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 satisfying, if non-traditional, to do on a holiday.  Try this list:

Top 10 Non-Traditional Ways to Spend a Holiday

--Inspired by David Letterman's Top 10 List & some Holidays of mine & friends.

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 and cable in the house, I enjoy being home in my pajamas!  So much to 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 all, if
people are going to work that hard for such a big and important meal, it's
nice when they get paid for it;

Make a list of everyone who has touched you in an important way this past
year, be it doing something for you, saying something you appreciated, or just
being there, or more simply, appreciating delivery or repair or other people who
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 this

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 scribbles
with highlighters, crayons, colored pencils or pens, etc., or, paint with
fingerpaints, or, start a collage project by cutting out interesting things from
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 group wrote
to tell us how pleased she was to arrange for an in-home Massage for today,
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.

Holiday Coping

Holidays can be a time of great joy, they can also present frustrating dilemmas for people with CFS/FMS and other invisible illnesses. Here are some articles that address the stress.

Gearing Up to Enjoy the Holidays (4 pages, PDF)
by Don Uslan, MA, MBA, LMHC., of Seattle, WA; FM Netnews

Uslan cautions 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 the same person who demands of themselves 12-hour-days for preparing a Thanksgiving get-together,” says Uslan. “Nothing has changed but the calendar; make your limitations clear and request help.”

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. 

SURVIVING THE HOLIDAYS - Give yourself the G.I.F.T. of a stress-free holiday
by Karen Lee Richards at

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 • I - Importance rules •  F - Family matters • T - Think ahead

Holiday Hot Tips - Tips for People with CFIDS (PWC's) and Caregivers
CFIDSLink 2005

'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


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!

Spotlight on Surviving The Holidays at FM Online Volume 5, No 17; 2005

The Parent's Corner: Surviving the Holidays While Coping With Illness
Robinson, Lyndonville News, Pediatric Network for CFS, FM & OI

Whether this is your first 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.

How To Cut Down On Holiday Stress With A Simple Holiday Meal, Stress Management

Tip #6. Get Take-Out. If all of this sounds too complicated, there’s an even simpler way. Many 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 ability to cook one.

Holiday Items, Gifts, Cards which raise Awareness and/or Funds for CFS, FM

Slamdunks CFIDS Items in the News:

Ashley D’Orlando’s Slamdunks helps people with Chronic Fatigue
Melrose Weekly News – September 1, 2006 by Liz Jennings. Excerpt:

 "[CFSupport 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 done is 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 Fatigue Syndrome research. So far 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 the rest of the money she has earned she puts into her college fund.  She says she hopes to be a pediatrician some day."
Pam writes us,
I feel very lucky to have 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

Lapel Pins, Posters, Bookmarks, Mugs, Totes, Notes, Bumper Stickers, Shirts, etc.

Swiss Medica donations to NFA with "024"purchase until end of 2006

024 is a temporary pain 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.

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,  Part 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, 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.

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 is planned.

EGG meetings are:
November 29, 2006
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
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.

Excerpts of CFS Classic

The Alchemy of Illness
by Kat Duff
April 1994

Illness can limit life or open a path to transformation.

Carrying What We Learn Back Into the World
Excerpt at, founded by PWC Author Alissa Lukara

Alchemy of an Illness at Amazon

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Updated May 11, 2011