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February 2001

Speaker 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
Wonderful Websites
Save Energy with Grocery Delivery
Report on Gennero Fatigue Lecture
Water Filtration Product
Fibromyalgia News
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 .

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/M.E., fibromyalgia, and related illnesses. We keep the number of emails to less than one per day on average.

This 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, The HeartMath 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 Makoul. 
Prior Speaker Section for Makoul with more links including the tissue mineral analysis test he uses and an article about it and Fibromyalgia.

Information about Recent Speakers

Social Security Disability Attorney 
Mitch Lambros (800) 562-0044
Myths about Applying for Social Security

From the Weston A Price Foundation:
Geoffrey Morell  (202) 237-8763   &  Sally Fallon   (202) 333-HEAL 

Quarterly Journal
Wise Traditions in Food, Farming, and the Healing Arts
Sally is also the author of 
Nourishing Traditions:

The Cookbook that Challenges Politically Correct Nutrition and the Diet Dictocrats
Our Page of Notes about their visit.

Sometimes more silence is useful.

      - Dali Lama

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 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:

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 . It is not a chat. We send only about 25 msgs/month.

2001 Lobby Dates Announced

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 or visit Lobby Day Page at

Happy News

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

Our CFSupport page on What is CFS/FMS?

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: 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

Added 05/06: 

A Draft of Recommendations of the Name Change Workgroup to be presented to DHHS CFS Advisory Committee can be found:

The NCW Group's submission is in the minutes of the Dec 2003 CFSAC meeting:

Reporting Serious Side Effects

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: For 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.

Folk Medicine: Respiratory Infections

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?

  1. 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.
  2. Arrange for free photocopying, video tape copying, and fax service.
  3. 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.
  4. Donate postage stamps.  (Yes!!! -elly)
  5. Provide help with word processing, typing, laminating or computer graphics to make signs, announcements, newsletters, correspondence, regular press releases, etc.
  6. Offer transportation in advance for those wanting to attend meetings you know you'll be attending. (Use our ride share database!)
  7. Be a gopher for volunteers to turn to when they are unable to perform their duties because of illness.
  8. Be a phone friend for other family members.
  9. Donate gas coupons as a surprise reward for volunteers.
  10. 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.
  11. 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 Self-Help Group."

Whenever 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.

       -Dalai Lama

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 appeal.

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 Mini-Trampolines

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 bar.   (800) 856-4863

Nontoxic Pest Control

"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.           --Cheri

Wonderful Websites

Robin: I would share with you a site I just found which looks like a winner. National Parent Network on Disabilities (NPND) (05/06: inactive).

Susan J sent us this. You can track anything your congress folks say on the floor for free via email alerts. (It’s your congress–Learn to laugh <-great motto)

The National Women’s Health Info Center tr provides info on health related topics and also referrals. Free. .   (800) 994-9662

Save Energy with Grocery Delivery!!!

Giant grocery store delivers in Fairfax Co. and NW Washington DC via 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 groceries.

Peapod packages delivers non-perishable items anywhere in 48 states UPS for $8. Good deal! Send the gifts of toilet paper, canned chicken, and pickles!

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 ( ).

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 is .


Links updated 05/06

New Water Filter by Nikken

From Member Heather ( ) 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 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 needed instantly.

Fibromyalgia News

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, 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:

I. Jon Russell, MD PhD, an FM researcher and clinical practitioner from Univ. of TX, will speak to FMAGW on Sunday afternoon March 25, 2001. 

Updated 05/06.

Mobile Screenings

Lifeline 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. 

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Updated February 25, 2007