Selections from Emails, Meetings, and More
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This Month: May 2007May
is almost always the busiest month overall for CFS and FM events
because May 12 is International Awareness Day for CIND: Chronic Immune
and Neurological Disorders which include CFS and FM. Groups collaborate
to make bigger events, more experts and patients appear on TV and
radio, advocacy gets a big push.
Here is a list of what's going on in our area, or involves people from the DC Area. Check events or other sections of this newsletter for details.
Dr. Pocinki on the radio, The Lou Adler Show, May 1 and May 2 (1 minute each)
7 Free Screenings of the documenatry Living with FM in 3 counties:
May 12 - Sat - 10:30 am to 8 pm in Montgomery County, MD
May 12 - Sat - 1-3 PM in Prince William County, VA
May 22 - Tue - 7 PM in Loudoun County, VA
CFIDS Lobby Days on May 14-15 in Washington, DC
CFS Advisory Committee to the Secretary of Health Meeting May 16-17 at DHHS in DC
The Faces of CFS Photo Exhibit at Washintong DC's Union Station, May 21 - June 2
NoVA CFS/FMS Support Group Visit to CFS Photo Exhibit, 1:30 pm, May 31, Thursday
NoVA CFS/FMS Support Group Meeting in Annandale, Fairfax County, Sat. May 19
What is Awareness Day?
1993, Tom Hennessy, the founder of RESCIND, INC. (Repeal Existing
Stereotypes about Chronic Immunological and Neurological Diseases)
designated May 12 as International Awareness Day for Chronic
Immunological and Neurological Diseases (CIND).
was chosen to memorialize the birth date of Florence Nightingale, the
English army nurse who inspired the founding of the International Red
Cross. Nightingale contracted a paralyzing, CIND-like illness in
her mid-thirties and spent the last 50 years of her life virtually
bedridden. Despite her illness, she managed to found the first
ever School of Nursing.
Awareness Day activities take place
worldwide in an effort to increase awareness of chronic illnesses
including fibromyalgia and chronic fatigue syndrome. Awareness Day
seeks to help patients and organizations educate the general public,
healthcare professionals, government officials, and legislative bodies.
Where can I learn more? See Resources - Advocacy and Awareness
Where do I buy items to promote CFS and FM Awareness? See CFS/FMS Items for Sale
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
|May 12, 2007
||Film: Living with FM
||5 screenings: The Gilbert Clinic in N. Bethesda, MD
|May 12, 2007||Film: Living with FM||1 pm showing: Potomac Hospital in Woodbridge, VA|
|May 19, 2007||discussion|
|May 31, 2007||CFS Photo Exhibit||Special Group Visit to Union Station, 1:30 pm|
|June 16, 2007||A meeting with Friends and Family|
|July 15, 2007||discussion|
|Aug 18, 2007||discussion|
|Sept 15, 2007||Mitch Lambros|
|Applying for Social Security Disability Benefits|
||Previously, in 2007:
|Jan 20, 2007
Term Disability Benefits
See PDF Handout about LTD Claims
|Mar 17, 2007
MS, RN, CS-P
Brews & Evolving Views:
Reuniting the Body & Mind in FM, CFS & ME
|April 5, 2007||Fred Friedberg, PhD||With Pain Connection® in Bethesda, MD|
Lifestyle Balance for Less Pain and More Energy
|April 21, 2007||Alan Pocinki, MD||The Cycle of Pain, Fatigue, Poor Sleep & Depression.|
Keep up to date by using our Events
page. Some other group events listed there, too.
(links updated 11/09)
The April 21, 07 speaker was Alan Pocinki, MD, on the Cycle of Pain,
Fatigue, Poor Sleep and Depression. Read about Dr. Pocinki and find
links to the handouts here:
April 5, 07 speaker was Fred Friedberg, PhD, a person with CFS, and a
behavioral psychologist with a Lifestyle Balance Program and book with
7 Steps to Less Pain and More Energy in CFS and FM. Read about this
meeting, Dr. Friedberg, and find excerpts here:
The March 07 speakers were Jonathan Gilbert, NCCAOM and A. Bains, MS, RN, CS-P.
from Gilbert's articles on using Chinese herbs and an integrative
approach including counseling and western medical oversight for CFS and
FM can be found at
Feb 07 - Great discussion. Intimate. 5 attendees.
The January 07 speaker was Chuck Fuller, Long Term Disability and ERISA
attorney. Mr. Fuller gave us a wonderful and helpful handout, "Long
Term Disability Claims: An Overview of the Claims Process and Practical
Considerations." Find it on our site at
ACK! - new floor, mild construction at our meeting facility.
Dec 06 - discussion and pot luck social. Yum!
Nov 06 - discussion.
The October 06 Meeting Summary and Handouts for Janine Blackman, MD,
PhD on Integrative Medicine for Health, for CFS and FM can be found at
September 06 Meeting handouts for Mitch Lambros, Esq, on Applying for
Social Security Disability Benefits, especially if you have CFS and FM
can be found at
To get notices of upcoming meetings, read more commentary about speakers and events, sign up for CFSupport emails.
"Putting chronic fatigue syndrome's myths to bed."
May issue of the ACP Observer, a publication of the American College of
Physicians, covers CFS in a lengthy article by Jessica Berthold.
In addition to interviews with CFS experts Dr. Lucinda Bateman and Dr.
Anthony Komaroff, Berthold provides facts and statements from thought
leaders affirming the "realities" of CFS. ACP Observer reaches 50,000
internal medicine physicians with its print publication and thousands
of others through its web site.
The article can be viewed and printed at http://www.acponline.org/journals/news/may07/fatigue.htm
“Investment in Research Saves Lives & Money” - #23: CFS
the week of May 7, Research!America will distribute a two-sided flier
about CFS to Capitol Hill, health agency leaders, public health
officials, research academics, governors, state legislators and media
professionals. The flier will also be used in the Association’s
Lobby Day information packets, Research!America’s outreach
packets, and is available on both organizations’ websites. You
can download it at http://www.cfids.org/advocacy/researchamerica.pdf or http://www.researchamerica.org/publications/RA-CFS_f.pdf
DC Internist Alan Pocinki was interviewed for two CFS "Medical Minute" shows for Lou Adler's Medical Journal on WOR710.com
May 1: http://podcast.wor710.com/wor/439186.mp3
May 2: http://podcast.wor710.com/wor/439187.mp3
For more media coverage, see our In
the Media page and the
Awareness for CFS Media page at CFIDS.org
Riding Grace: A Triumph of the Soul
by Alissa Lukara
(Paperback - Dec 2006)
author's no-holds-barred 12-year quest to reclaim her life from a
debilitating, presumably incurable illness, Chronic Fatigue Syndrome
(CFS), and the trauma of childhood sexual abuse.
Event Alert: June 14 Coast to Coast Teleconference with Lukara and Brosius
Author's site: LifeChallenges.org
Media Headline & Story: A tale of abuse and recovery Feb 2006
Adaptation/Excerpt at Womanlinks.com: "The Power of Embracing All Life"
my life fully-the "be-er" and the "do-er"-also allowed me to reclaim my
creative writing voice, which had been silenced early on by the fear
and shame surrounding the abuse. And the first book I was called by my
very soul to write was the journey of healing my body by healing the
impact of sexual abuse on my life, how I had transcended it and
reclaimed the fullness of my life. Twelve hours after I made the
commitment to write that book, in a workshop led by two healers, I had
a spontaneous healing of the CFS and the wounds of abuse. I said yes to
my life-surrendered to what was, to my creative path and purpose-and I
had a healing. I've been healthy ever since."
CFSupport member Jenny's review of Riding Grace:
just finished her book. I couldn't put it down, which is unusual for
me!...Mostly because reading can make me so tired ;)..but I was
enthralled and moved through out. It is rare to read a book of
someone's CFS soul journey because so many of us are in the
journey...and it doesn't occur to us that anyone else would be
interested in 'our' story. Well, that and we are usually too damn tired
and cognitively impaired to write! I thrive when exposed to people's
stories... particularly one's I can relate to on the deepest of levels
and steep in the inspiration and altered perspective they bring.
hooked me from the start, knowing she experienced healing on several
levels (physical-spiritual-emotional) and simply is 'one of us'. I have
since gained a renewed sense of self... reading through her story
helped me give voice to parts of me and mine that hadn't yet been heard
and encouraged me to continue the journey by intuitively seeking more
creative means and trusting this process despite past trials and
perceived failures. I have not been a child of incest... but I have of
trauma and profound loss.
This book simply brought me a greater
freedom to be in this life with this condition and dig a bit deeper
trusting my soul to carry me through... because I do see the light... I
may not be clear how long it will take to arrive, what that arrival
will be...but I see it and it's divine!"
Fibromyalgia: The Complete Guide from Medical Experts and Patients
by Sharon Ostalecki, PhD
Paperback - Jun 2007
Publisher's Site with Book Photo Patient 002
Author's organization: H.O.P.E. = Helping Our Pain and Exhaustion, Inc.
Books's site, with reviews and excerpts
From Chapter 10: "Moreover, in chronic pain the sympathetic
nervous system is often in a heightened state of arousal. What is the
sympathetic nervous system? It's a massive network of nerves throughout
the brain, spinal cord, and body that causes the familiar
"fight-or-flight" response, in which the body is almost instantly
prepared for a dangerous emergency. Heart-rate increases, breathing
rate increases, blood pressure rises, emotions flare, adrenalin flows.
Needless to stay, it's unhealthy to be in this aroused state more or
less permanently. It leads to high blood pressure, irritable bowel
symptoms, anxiety and despair."
Paperback- Apr 2007
Fiction. Author has CFS.
Three authors delve into the practice of medicine and how we can make it better while getting better OregonLive.com, OR - Apr 22, 2007
His [Person with CFS, Floyd Skloot] fourth novel, "Patient 002," departs from
what we have come to expect. While he does not altogether
abandon his literary roots, Skloot grounds "Patient
002" in stylistically popular formats -- a page-turner
that is at once love story, caper and medical thriller that
takes novelistic aim and fires on pharmaceutical companies. ...
While this novel takes aim at our
health care system, it is certainly not cynical. If
"Patient 002" does one thing, it brings home that
wellness is our responsibility, particularly if our
expectations of miracles are met with medical, financial and
Holly A Harvey
Paperback- Feb 2007, UK
Fiction - Comedy
heroine is 28 year old Paige, an ME (CFS) sufferer, like the author.
Paige's life revolves around sleep, caffeine and VH-1 while friends are
busy partying - but Holly says she only shares a few of her
protagonist's personality traits.
Holly Harvey's Website
Article: Write on for good karma
My Body of Knowledge: Stories of Illness, Disability, Healing, and Life
Edited by Karen Myers and Felicia Ferlin
Paperback- Feb 2007
collection of essays, poetry, and fiction by those with understanding
of disability and illness. Includes a variety of writing styles and
points of view, with topics ranging from recovery to sexuality to
spirituality. Also included are accounts of loss, anger, and
pain, along with humorous stories—and even fantastical depictions
of alternate lives. Writers with ME/CFS or FM:Kat Duff, Lawrence
Bradby, Madeleine Parish, Floyd Skloot, Merry Speece, and Sharon
FM and Sex Can Be a Pain in the Neck...and back and shoulders
by Kimberley Linstruth-Beckom,
Hardcover - Feb 2007
Download - Feb 2007
Press Release for FM and Sex Can Be A Pain in the Nexk... Book
Excerpt at Author's Website
also need to function in a very inimate and personal matter of
expression, the expression of love to another sexually. This is a very
important, personal, and intimate topic for myself, and I hope to share
a little of my trials and tribulations with my syndrome and how it
affects one's marriage in both a positive and negative way. If you
haven't read my book, The Fibro Hand, that contains great detail at how
I took the hand I was dealt in life, Fibromyalgia, and made it a
winning one, I have included some details of my dealings with the
syndrome on a day to day basis.
Before diagnoses, (which took two years) I was a very tired individual
that could barely stand up to cook a three minute egg let alone engage
in an intimate encounter with my husband. Grinning through the pain
became a normal part of my day and a normal part of my night throughout
my twenties. ... I felt like a helpless child and thought I was whining
too much when I'd as my husband for a backrub before sex... The
fun grew harder when moving into positions was followed be excruciating
pain... Scott and I had a long disscusion that lead him to say to
me, Kim, if it bothers you-- it bothers others. Start the book and let
me know when we can have some fun with the research. (Insert laugh from
husband here.) And so, a book idea was born."
2007 Books by people with CFS/FM about other subjects
Jesus in Love by Kittredge Cherry
new novel about the sexual and spiritual awakening of a queer Christ is
sparking controversy this Easter.... “Jesus in Love”
closely follows the Biblical text and standard Christian doctrine while
speculating on Christ’s erotic inner life. It presents a
gender-blind Jesus who blends masculinity and femininity as he does
humanity and divinity. Enchanted by people’s souls, he barely
notices their gender and ends up falling in love with John, Mary
Magdalene and the multi-gendered Holy Spirit as he teaches and heals
people in first-century Palestine. “Every community presents
Jesus in their own way,” Cherry explains. “There’s
black Jesus, Asian Jesus -- and now queer Jesus to heal the damage
being done by homophobes in Christ’s name.”
Death Pans Out by Ashna Graves
Article by Theresa Hogue in the Covallis Gazette-Times
Critics, readers respond to local author’s novel.
Former GT columnist finds success with mystery set in Eastern Oregon
a bright high desert sun, with the smell of pine and sagebrush and the
quiet that can only be found in solitary places, Wendy Madar found
peace and healing that she had never before known.
later, Madar’s experiences living in an old mining cabin near
Baker City transformed into a mystery novel that is receiving literary
acclaim and has already sold out its first printing.
nom de plume Ashna Graves, the former Gazette-Times reporter and
columnist has written several books featuring heroine Jeneva Leopold.
But “Death Pans Out,” her latest book, has taken the
mystery genre by storm, something that’s surprised Madar to no
Like Jeneva, Madar once sought out the desert sun after
breast cancer and chronic fatigue syndrome changed her world. Her good
friend Allen Throop, who had retired from a job as director of mined
lands reclamation for Oregon, suggested a mining cabin she could rent
for the summer, so she fled a rainy Corvallis summer for the heat of
“The appeal of the setting drew me to
greater exertion,” she said of her months on the desert.
“My body reset itself, somehow, back to a pattern that predated
the illness. Within two weeks, I felt the difference.”
Our Newest &
Most Updated Web Pages
Q&A, Our Way: How to Use this Site
April 2007 Print Newsletter (PDF)
- 2 Pages - Great for putting on the fridge, bringing to your
practitioners' offices so they may learn about the existence of the
group (not everyone knows), and a good thing to shove in your car's
glove box if you may forget the address or schedule.
Flyers/One Page Posters for Events
May 12 ("Living with FM Film Screenings")
May 31 ("Faces of CFS" Photo Exhibit), (will be removed after event)
June 14 ("Riding Grace Coast to Coast")
Most generally updated pages: Events, In the Media, Other Groups, Practitioners
May 12 Awareness Day "Fibromyalgia in Focus" - The Living with FM
National FM Association & Trillusion Media arrange film screenings worldwide
NoVA CFSupport Group, Potomac Hospital, The Gilbert Clinic join in offerings.
To buy the DVD for family members, for yourself, to watch together ($20) visit
the film's website: http://www.livingwithfm.com
Northern VA, Suburban DC/MD area showings include:
WOODBRIDGE, Virginia - Sat May 12, 1 PM
Hylton Education Center, Garden Level of Potomac Hospital,
2300 Opitz Boulevard, Woodbridge, VA 22191
To reserve a seat:
Potomac Hospital's Health Connection, (703) 221-2500,
Potomac Hosptial's Online Class registration (You'll get confirmation via mail)
Brave New Theater's online reservation for Woodbridge (Directions available)
N. BETHESDA, Maryland
The Gilbert Clinic, One Central Plaza, Suite 1205
11300 Rockville Pike, N. Bethesda, Maryland 20852
Park on the Street. After 1 pm, please sign in at the front desk.
Directions call the The Gilbert Clinic, (301) 230-2530, or use the
To reserve a seat, only 12 seats per show:
Brave New Theater's online reservation system:
Saturday, May 12: 10:30 am 12:30 pm 2:30 pm 4:30 pm 6:30 pm
For more information, see our May 12 FM Awareness Day Poster 2007
To find more showings,
Note: The Loudoun (May 22, 7 pm) and Charlottesville (3 showings) Support Groups are also offering free screenings.
More National Happenings
The National FM Partnership (NFP) is having its 15 Year Anniversary. Congrats to them.
My Cause is the The CFIDS Association still wants your help. Set up a fundraising web page. See the November 2006 Newsletter form more information.
CFIDS Lobby Days are here again, May 14-15. Come to DC. Raise awareness, ask for more research. Read about it in "Lobby Day Empowers, Enriches!"
New Group in Loudoun
CFS & FM/Pain Management Support Group
Robertson (703) 327-6478
Web: Meet Up
Second contact: Gary
703-430-9304, Please do not call after 6:30
Next Meeting: Tues, May 22,
2007, 7 PM free screening of Living with FM
Eastern Loudoun (Cascades) Library
Place Potomac Falls, VA 20165
Coping: Friends and Family Resources
Resources for Family and Friends.
people seek brief and/or lengthy materials to share with interested
Friends and Family about CFS and Fibromyalgia. Sometimes it is to save
yourself from having to repeat the same things over and over, sometimes
its because words don't come so easily when you need them. Here are
1) Online Course for Family and Friends of people with CFS and FMS (register by 4/5/07)
2) FM Netnews - 17 page Relationship Supplement Publication- $9
3) CFIDS Association Resources for Family and Friends
4) Living with FM, A DVD For Family Members and those affected by F
5) NoVA CFS/FMS Support Group Meetings
6) Our "For Carers and Caregivers" Resources
1) Course for Family and Friends - Starts June 23
CFIDS & Fibromyalgia Self-Help Program is accepting sign-ups for
the Summer session of their new online course for family members and
friends of people with ME/CFS and/or fibromyalgia. The cost is $25.
course is taught by Bruce Campbell, PhD, the creator of the CFIDS and
Fibromyalgia Self-Help program, assisted by volunteer peer leaders, all
of whom are course graduates and family members of people with CFS or
fibromyalgia. Dr. Campbell is a recovered CFS patient who before
becoming ill worked on self-help programs for chronic illness at the
Stanford University Medical School. For more on his background, see his
[The next class for patients, begins Jun 11, 2007. With
your registration, you receive a copy of the course text, The Patient's
Guide to Chronic Fatigue Syndrome and Fibromyalgia.]
four-week online self-help class is designed for family members and
friends of people with Chronic Fatigue Syndrome or fibromyalgia. (Note:
This is not a course for couples.) Offered for the first time in Fall
2006, the course is based on the recognition that CFS and FM create
uncertainty and stress for family and friends, as well as for patients.
The class offers a comprehensive framework for
understanding CFS and fibromyalgia, and provides strategies class
members can use both to help their loved one and to take care of
themselves. Because the course is conducted as an email discussion
group, you will also learn how other people in similar situations deal
with the issues created by CFS and fibromyalgia.
-Lasts 4 weeks, with classes starting four times a year
-Groups consist of about 15 people each
-Led by health educator and trained peer volunteers
-Taught via list server (email)
-Participate as much as you want
-For family members and friends, not couples
course offers information about ME/CFS and fibromyalgia, as well as
ideas for how class members can both help their loved one and take care
of themselves. Because the course is conducted as an e-mail discussion
group, participants will also learn how other people in similar
situations deal with the issues created by ME/CFS and fibromyalgia.
You can register either online or by mail. The
course text is available online in both conventional and print-friendly
formats. Visit the CFIDS & Fibromyalgia Self-Help Web site to learn more and to register.
2) FM Netnews - 17 page "Relationship Supplement" Publication - $9
your spouse and family question you when you say you are not up for
participating in a physical activity with them? Do you always feel as
though you look much better than you feel? Or, perhaps your partner is
just pretending that your "fibromyalgia phase" will be over within a
few months, and you can both get back to living life as it used to be.
These are just a few of the strained relationship problems that you are
probably facing, given the invisible nature of your symptoms, but there
are ways to resolve them.
A 17-page collection of helpful advice
on the social aspects of fibromyalgia syndrome (FMS). Experts weigh in
on how to keep your personal relationships strong, enjoy intimacy in
spite of pain and fatigue, and help children (or grandchildren) cope
with your fibromyalgia. Improve your emotional well-being by learning
to handle hurtful comments and unwanted advice. Plus, find out how to
help others relate to your condition, improve communication, and keep a
3) CFIDS Association Resources for Family and Friends
Family and Friends Page
Information "For Those Who Care"
On paper Fact Sheet - Free
20 CFIDS Information Cards - $2.50 - business-sized cards explain CFIDS.
4) DVDs for watching with, giving to familiy:
Purchasing for home, attending free screenings of documentary "Living with FM"
filmed by Family Members, to be watched and those affected by FM and
their families. To find worldwide free screenings check the FM Aware Awareness Day Events 2007 web page and Brave New Theaters. Several people have registered in 2's and 3's already for the our film screenings! Thanks!
The CFS DVD "I Remember Me" available at ProHealth ImmuneSupport. FYI, you can use our support group code "SGELLY" to get 30% off one supplement from Immune Support until the end of the year.
Friends and Family are welcomed at NoVA CFS/FMS Support Group Meetings.
Please join us for our June 16, 2007, Meeting with Friends
6) CFSupport's Resources:
Carers and Caregivers Links
Q&A "Can you help me help my spouse with CFS/FM?"
Shopping, Good Food & Water Delivered
can be exhausting... especially if you start out that way. If possible,
invest in keeping your own energy by using home delivery of groceries.
You may even have the energy to make a meal... or eat one! Toni reports
being able to put her groceries away instead of leaving them in the
car. Since she throws out less, there is savings.... unles the stuff
rots in the fridge anyway. Oh well... we keep trying.
Washington Green Grocer
deliver an all-organic box or mixed box of produce weekly, on any
schedule you want or just when you call. They also have dairy and
specials every week. Potential cons - price, and too much
produce for 1 person. Pros - good, fresh food; great folks,
excellent service. (301) 333-3696. Nina orders occasionally.
Safeway grocery delivery
Some organic products available! Visit the site and enter your zip code to check availability.
Toni uses this service.
Giant / Peapod grocery delivery
Some organic products available! Visit the site and enter your zip code to check availability.
Elly uses this service.
For CSA, Community Supported Agriculture, for another way of getting fresh, organic produce, see our Food & Water Resources.
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
The March 29 EGG Summary includes notes about special guest author Alissa Lukara and contributions from 12 CFSupport participants.
EGG meetings are:
April 29, 2007
4:30 PM EDT
(218) 936-6666; Usual code: 33669933
Press 2 to enter/create and existing conference,
then the code, then the # key.
May 29, 2007
8:30 PM EDT
Conference room of
The Gilbert Clinic
|11300 Rockville Pike, #1205; N
Dinner afterward at White Flint Mall at
The Cheesecake Factory across street ~7:30 PM.
Conference room of
The Gilbert Clinic
|11300 Rockville Pike, #1205; N
Bethesda MD |
One More Thing: Review of Living with FM, a documentary
Review by Elly Brosius
On March 21, I watched the film "Living with FM"
with a nutritionist and stress management counselor who has many FM
clients. Well done, we said! It covers a wide variety of experience and
subject matter, keeps your interest to the end. Those living with FM
will definitely relate to one or more of the stories presented. The
people in it are real, and they were given the time to talk in natural
ways. This film is going to be special for those individuals with FM
having trouble reading printed information, or who have never seen the
face of another in a similar situation. Families are particularly
welcomed to watch since it is told from the point of view of a
concerned daughter seeking hope, seeking how to help her mother and the
whole family cope.
As a CFS and FMS support group facilitator, I am
particularly excited for the opportunity for groups to view and discuss
the documentary and what it brings up for viewers about symptoms,
coping techniques, possibilities for recovery, and the courage needed
for those days when just surviving is a monumental triumph. The
professionals in the documentary are particularly good, giving
information and direction about the things we can do for ourselves with
them as our "coaches." Pausing the DVD to talk with my friend whenever
either of us wanted to was a very satisfying way to watch it, but group
discussion afterward is going to be great, too. I am very glad to have
purchased "Living with FM" and to be making the effort to offer
screenings with discussions on May 12 (see above).