SELECTIONS from our EMAILS and NEWSLETTERS
Sam Makoul, HeartMath
Information Recent Speakers
About Our Email System, Websites
Lobby Days to be Jun 20-21
Happy News: Wedding
What is CFS/CFIDS?
Name Change Comments
Reporting Serious Side Effects
Folk Medicine: Respiratory Infections
How can Friends & Family Help Support Groups
Happy News II: LTD secured
Group Order or Mini Trampolines
Non-toxic Pest Control
Save Energy with Grocery Delivery
Report on Gennero Fatigue Lecture
Water Filtration Product
Mobile Health Screenings
Welcome to CFSupport Group News! To receive all
of our emails and newsletters, 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
CFS/M.E., fibromyalgia, and related illnesses. We keep the number of emails to
less than one per day on average.
Month’s Meeting: Sam Makoul and HeathMath
Our topic for this month is HeartMath - synchronizing
your heart & brain for better autonomic responses, for handling
anxiety and stress more easily. HeartMath was featured on
ABC’s 2/7 World News Tonight. For more info, check www.heartmath.com,
Institute, and (added April 2006) our page of notes about HeartMath.
Sam Makoul, is a clinical nutritionist, pastornal counselor and stress
management coach in Herndon, VA. (703) 787-6660 and (703) 904-1677
(metro). Page of notes on Sam
Section for Makoul with more links including the tissue
mineral analysis test he uses and an article about it and Fibromyalgia.
Social Security Disability Attorney
Myths about Applying for
From the Weston
A Price Foundation:
(202) 237-8763 & Sally Fallon
Wise Traditions in
Food, Farming, and the Healing Arts
Sally is also the author of
The Cookbook that
Challenges Politically Correct Nutrition and the Diet Dictocrats
Our Page of Notes about their
more silence is useful.
About Our E-mail
System // Websites
Our group uses a nice free subscription email system
whereby leaders can send out messages to subscribers/members.
It has recently changed sponsors from egroups to yahoogroups, but it
works the same and the group is still called CFSupport.
Group emails are archived at Yahoo so if you want to look up an old
message, it is waiting for you. You don't have to save everything, but
the archives are text only, long ones get cut off sometimes and
attachments get stripped. You can search on key words, which is nice if
you want to read all the emails that have something we said about
magnesium, for example.
To access this free Yahoo account, sign up for a
username and password. It is the same as signing up for Yahoo Mail, but
you don't have to use the mail address. Yahoo mail can be turned off or
allowed to go dormant if you ignore it. Logging at groups.yahoo.com
and looking at your "mygroups" page once in awhile is a good way
to check on other groups you belong to - to see if email
addresses are still correct - in addition to viewing our Yahoo
archives, files, photos and calendar and updating your information. You
may even find other groups you may want to join. You can subscribe and
unsubscribe right there at Yahoo Groups. Our group’s own
main, public CFSupport website is at a different place and does not
require membership at anytime: www.geocities.com/cfsnova.
We use our emails to alert members to newspaper articles and TV pieces
that might be of interest, send out meeting reminders, and more.
Members can write in to the "owners" of the list, aka the group
leaders, if they have a relevant question of broad interest to ask all
the members and we will send it out with that member’s
contact info. Remember, however, the internet is not private!!
The fastest way to join is to send a blank e-mail to CFSupportemail@example.com
. It is not a chat. We send only about 25 msgs/month.
2001 Lobby Dates
The CFIDS Association of America's annual Lobby Days are
June 20-21 in DC. Interested? Send name, address, and e-mail to The
CFIDS Association, Attn: Lobby Day, POB 220398, Charlotte, NC 28222 or
to LobbyDay@cfids.org or visit Lobby Day
Page at CFIDS.org.
PWC members Ward and Jeannie were married 1/28.
It was a beautiful ceremony at their FC, VA home. Jeannie wrote a
beautiful poem. The struggles of living with a chronic illness were
mentioned. We wish them everlasting harmony.
What is CFS/CFIDS?
Chronic Fatigue Syndrome (CFS), is defined as a
debilitating and complex disorder characterized by profound fatigue,
pain and cognitive problems not improved by bed rest. These symptoms
may be worsened by physical or mental activity. Persons with CFIDS/CFS
function at a substantially lower level of activity than they were
capable of before the onset of the illness. Recent studies estimate
more than 800,000 Americans are suffering with CFS. Call The
CFIDS Association of America (704) 365-2343 for a free packet or visit www.cfids.org.
Our CFSupport page on What is
Name Change Comments
The name Chronic Fatigue Syndrome is a sore issue for
many. The possibility of making a name change is being studyed. If you
wish to make comments by e-mail, send them to: firstname.lastname@example.org and
put "Name Change" in the subject line. For those who cannot provide
comments online, statements should be addressed as noted
below. Such communications will be forwarded directly to the
Chair of the Name Change Working Group.
DHHS CFSCC Name Change Working (NCW) Group
c/o Ms. Janice C. Ramsden
National Institutes of Health
1 Center Drive, MSC 0159; Building 1, Room 333; Bethesda, MD 20892-0159
A Draft of Recommendations of the Name Change Workgroup
to be presented to DHHS CFS Advisory Committee can be found: http://www.cfids.org/advocacy/c-act_01242003.asp
The NCW Group's submission is in the minutes of the Dec
2003 CFSAC meeting: http://www.hhs.gov/advcomcfs/dec_meeting_min.html#name_change
MedWatch Reporting by Consumers
MedWatch is the Food and Drug Administration's (FDA) program for
reporting serious reactions, product quality problems and product use
errors with human medical products, such as drugs and medical devices.
The agency counts on you to holler when a drug, product or dietary
supplement causes problems. If you experience an severe adverse effect
- you get a bad headache, you break out in hives, your
stomach turns and stays queasy -- the FDA wants to hear from you
through its FDA Medwatch program, which collects information about side
effects. You can call the Medwatch hotline at 800-FDA-1088 or
log onto the Medwatch Web site at:
information about a medical product, call the FDA's toll-free
information line, 888-INFO-FDA (888-463-6332)
You can also sign up for an e-newsletter
about recalled products and drug safety issues.
Basil in tea form is helpful for respiratory infections.
Steep the dried herb in boiling water, then use one teaspoon herb to
1/2 cup of water. Drink 2 teacup-size cups a day.
How Can Family and
Friends Help with Support Group Activities?
- Commit to do one odd job or donate one hour a year or
15 minutes for every meeting, phone call, etc. that was of benefit to
you or your loved one.
- Arrange for free photocopying, video tape copying,
and fax service.
- Book yourself as the designated meeting room
person: set up and put away chairs and tables, service and
clean up refreshments, post signs in hallways directing people to the
meeting room and take them down later.
- Donate postage stamps. (Yes!!! -elly)
- Provide help with word processing, typing, laminating
or computer graphics to make signs, announcements, newsletters,
correspondence, regular press releases, etc.
- Offer transportation in advance for those wanting to
attend meetings you know you'll be attending. (Use our ride share
- Be a gopher for volunteers to turn to when they are
unable to perform their duties because of illness.
- Be a phone friend for other family members.
- Donate gas coupons as a surprise reward for
- Make a tax-deductible donation in someone's name to a
charitable organization, earmarked for general use, a specific project,
or subscription to a newsletter that provides hope and updated
information to patients with limited financial resources.
- Contribute recommended books to libraries (public and
hospital), medical schools, etc. and receive an income tax deduction.
From Issue 1 of the CSN FOCUS Newsletter, February 1994.
Excerpted from an article by Ruth E. called "Routine Tasks to Run a
you find discomfort, calamities, you should know how to transport it to
positive practices. It would be senseless to not see your own ill deeds
as the factors that harm you.
Happy News II
From Member "C":
In August 2000, I finally received LTD benefits after a two and half
year effort, including back pay! Truthfully, its a bittersweet moment
to get LTD, but considering how much harder this could have been, I am
thrilled. This success was done with the wonderful assistance
of Chuck Fuller, at McChelsney and Dale (from Bill Dale’s
office). I hired him in summer 1999 and this was the first
huge appeal package we mailed to the insurance. He did an
excellent job writing the appeal letter, helped me as I did legwork,
acted with integrity, and returned my phone calls. My
insurance approved my claim in full, only 30 days after we sent in the
FYI, my insurance company, The Guardian, turns out to be one of the few
upstanding and decent disability companies (this is from both my
experiences and those of the many attorneys I’ve talked
with), so if you're thinking about buying disability insurance...
My LTD problems were largely specific to my situation, plus prior
attorney problems. I would not recommend my prior attorney
since his handling of the case could easily have legally ruined it
permanently if Guardian hadn't been a decent company. Just thought
I’d share a success story...!!!
Group Order of
The group is placing an order Tues 2/20/01 for
Cellercisors, a high quality rebounder that has many health benefits
and can be used by beginners to very advanced. We save the $30 shipping
each by ordering together. If order the balance bar at the same time
instead of later you save almost $40. Total price is $265, + $35 for
"Able Termite and Pest Control" owed by Bob Orrence at
301-460-1676 in Montgomery County at 301-577-0702 in PG County uses
less toxic or natural methods.
In order to rid a rental property that was infested with roaches, Able
used a substance derived from some mushroom which is non-toxic for
humans, odorless and is squirted into cracks, not sprayed. It
only required one application, at a third the cost of the regular
companies, and in 90 days the house was completely roach-free
permanently. Didn’t even have had to remove dishes
from cabinets because it wasn't toxic. Also, unlike
traditional methods, the roaches die out of sight instead of scampering
out from the poison into plain view to die.
Robin: I would share with you a site I just found which
looks like a winner. National Parent Network on Disabilities
(NPND) www.npnd.org/Dis-workplace-primer.htm (05/06: inactive).
Susan J sent us this. You can track anything your
congress folks say on the floor for free via email alerts. www.yourcongress.com
(It’s your congress–Learn to laugh <-great
The National Women’s Health Info Center tr provides info on
health related topics and also referrals. Free. www.4women.gov
. (800) 994-9662
Save Energy with
Grocery Delivery!!! Peapod.com
Giant grocery store delivers in Fairfax Co. and NW
Washington DC via Peapod.com.
You shop on your computer, hopefully reclining and saving your
strength. Then for $5 delivery fee if spend more than $75 ($10 if
less), your groceries show up at your door when you specify. Peapod has
good weekly specials and takes manufacturers coupons. Elly actually
saves money as using coupons lying down is much easier. Elly
and Susan and Conner are using the service and love it. It
isn’t perfect, but neither are we. If you choose to try it,
give a friends e-mail address and the friend will get a credit. Now
maybe we’ll be able to cook a little if don’t have
to spend so much energy getting to store and carrying and lifting
Peapod packages delivers non-perishable items anywhere in 48 states UPS
for $8. Good deal! Send the gifts of toilet paper, canned chicken, and
Report on Causes and
Holistics Solutions for Fatigue Lecture by Gennaro
Thanks to Connie A. for her attendance and notes:
I attended Dr. Margaret Gennaro's 2/10 talk on the causes and
holistic solutions for fatigue. It was a very educational
overview of several medical problems associated with fatigue, and she
gave a lot of references for more info, as well as handouts.
Dr. Gennaro is a board-certified physician with 10 years of experience
who practices at the Natural
Horizons Wellness Center at 10640 Main Street in Fairfax, VA.
According to her handout, she "is committed to providing both adults
and children personalized, holistic care for those who wish to
participate in their own health care".
If you are interested in meeting her and hearing her speak, she will be
giving more talks in the future at Fresh Fields in Vienna. (Now called Whole Foods.
Store events for this location and others are listed online.) Call the
store at 703-319-2000 to confirm the dates and times and reserve a
space if you are interested in attending. Upcoming topics are, Emotions
and Health, Hypothyroidism, and Allergies.
Seminar on EFT on 3/18
Margaret Gennaro, MD, will also be giving a seminar on March 18th from
1-4 pm at the NH Wellness Center in Fairfax on the Emotional Freedom
Technique, a simple technique which involves tapping at various
acupuncture points while thinking of an emotional issue. The
emotional issue can then dissipate painlessly and effortlessly, thus
clearing up many phobias, traumas and addictions ( www.emofree.com ).
I found Dr. Gennaro to be an interesting speaker and her talk was very
helpful. Her phone number is 703-246-9355, x105, and her e-mail address
Links updated 05/06
New Water Filter by
From Member Heather ( email@example.com )
who sells Nikken products:
All drinking water contains some contaminants. Almost a
quarter of water districts (40,000 of 170,000) in the U.S. were found
in violations of standards in the last year. About a third of bottled
water contains contaminants. And almost half (47%) of the U.S. won't
drink tap water.
Nikken a world leader in wellness technology, announces a revolutionary
new portable water product -- the PiMag Ionic Filtration Water
Bottle! Now you can have instant supply of clean, fresh water
anywhere you go! Click this link to see a demonstration of the PiMag
Water Bottle http://www.5pillars.com/livlong
go to products and click on the water system. You play the "Flash
Presentation!” The PiMag Water Bottle is currently being used
by international relief agencies, military units in the field and
organized expeditions, anywhere that pure clear water is
NIH Publication NO. 04-5326 has free FM information in a
booklet, to view online, or as a PDF:
Q&A about Fibromyalgia. It was published in 1999 and
was updated June 2004. To have the booklet sent to you call (877)
22-NIAMS or visit order
page, which lists other FM and CFS materials. A large-print
edition is available.
The FMAGW (FM Assoc. of Greater Wash, fmagw.org) has a new
address in Linden, VA. They publish Fibromyalgia Frontiers. Added
later: They also have a new name and website. National Fibromyalgia
Partnership, Inc. (NFP), P.O. Box 160, Linden, VA 22642-0160.
NFP offers membership, products, free literature, online articles and
more. Toll Free: 866-725-4404; Email: firstname.lastname@example.org.
I. Jon Russell, MD PhD, an FM researcher and clinical practitioner from
Univ. of TX, will speak to FMAGW on Sunday afternoon March 25,
Screening of Cleveland OH performs 4 non-invasive tests in
rotating locations around the country. One is a bone density test to
detect osteoporosis for $35. If you have multiple tests done on
one day, there may be a discount. Call (800) 407-4557 to find out when
and where and which by giving your zip code. Some tests require fasting.