The Northern Virginia
CFS/FMS
Support Group

Selections from our EMAILS and NEWSLETTERS

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Introduction

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 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 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.

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 from CFS.

From www.cfids.org (704) 365-2343 for free info packet. See also: What are CFS and FM?

November 2000 Meeting Speakers & Notes

Speakers from The Weston A. Price Foundation:

Geoffrey Morell, Treasurer of The Weston A. Price Foundation
Hands of Light (Energy) Spiritual Healer and Naturopath, Washington DC (202) 237-8763

Sally Fallon, founder of the Weston A. Price Foundation and author of Nourishing Traditions: The Cookbook that Challenges Politically Correct Nutrition and the Diet Dictocrats. Washington DC, (202) 333-HEAL, www.westonaprice.org.

Meeting Notes:

We created a special Weston A Price Speakers Page instead of including it all here.

One thing discussed was the book Nourishing Traditions which has insightful and scientific information on carbos, fats, proteins, vitamins, minerals, food allergies, spices, enzymes and more with references and sources for locating products. Is a great resource!

The recipes call for fresh unprocessed foods. Here is a good recipe with high probability of succcess for the chronically ill. It has only 3 ingredients inclunding salt and water! Mail order the nuts and use a faucet filter so as not to have to carry filtered water home from the store to save energy. Why soak your nuts? Nuts contain numerous enzyme inhibitors that can put a strain on digestion. Soaking breaks that down as would the spring rains in nature. I’ve made them myself several times now. Relatively easy, if your kitchen is inusable shape. To me, these nuts yummier than other nuts. Mix in some unsulphured dried fruit if tolerated.

Crispy Walnuts (or whole Almonds)
4 c. raw walnut halves and pieces
2 t. sea salt, filtered water

Soak nuts in salt and water for at least 7 hours in a warm place. (Elly and Toni say rinse first!) Drain. Spread on stainless steal baking pans and place in a warm oven (<150 deg) 12-24 hrs, turning occasionally until dry and crisp. Store in air tight container. Walnuts must be kept in refrigerator. Almonds okay to leave out in sealed jar.

For more information directly from The Weston A Price Foundation for Wise Traditions in Food, Farming and the Healing Arts, follow these links. You may want to join and receive their excellent journal called Wise Traditions.

Weston A. Price Foundation ABC's of Nutrition

Weston A. Price Foundation Dietary Guidelines

Weston A. Price Foundation Dietary Dangers

National Women’s Health Information Center

The National Women’s Health Info Center provides info on health related topics and also referrals. Free. A representative of this group came to the October CFSCC meeting. Their website has a CFS faq's page. (800) 994-9662.  www.4women.gov

Our CFS State of the Science Meeting Report

Roughly 20 of our group members and 3 local doctors came to the Oct 23-24 meeting at the Key Bridge Marriot in Arlington. The best part was that the scientists invited from other fields were very respectful and interested in CFS and CFS patients. Our members got to meet and even dine with experts from all over the country. A few of us got to talk at length with author and neuroscientist, Candace Pert, PhD, who wrote Molecules of Emotion: The Science Behind Mind-Body Medicine. She discovered all body cells make neurotransmitters, not just brain cells. Pert's website. She was not a presenter, but an atteendee.

Elly spent some time yacking over dinner with Lenny Jason, PhD of IL. He is the behaviorist that did the latest and greatest prevalence work to come up with the 800,000 americans with CFS. Dr. Jason has visions of community based CFS housing units to help those who have trouble living independently. View his CFS Research team.

IQ solutions, who did the conference planning, did a great job. Hope, one of their people, even brought in ottomans from home so patients could put their feet up. Toni and I had made a little area in the back with extra chairs for our feet the first day. By the time the second day came, Hope had put a couch there with ottomans. How wonderful.

I was saddened and frustrated to see how many PWCs still try to look normal and sit normally in hard chairs with no head rests, especially when they know they have orthostatic intolerance (OI) and they are listening to a lecture on OI. One person ended up in the ER because her body couldn’t take it. On the other hand, Tom Hennessey was in the back on his back on his foam mat. Way to honor your body, Tom!

Oct 00 CFSCC Committee Meeting Notes

On Oct 25 '00, several of our members attended the CFS Coordinating Committee mtg. There was discussion of the name change (the sub-committee requested money to do their work) and a review of the State of the Science meeting. There was public testimony about insensitive medical care and difficult access to social services. Unfortunately, some speakers did not stay on topic and instead just expressed anger, and opportunity to define definable problems was limited. Other speakers did great.

Since Donna Dean became chair last year, this committee has done better. It will take Ms Dean a bit longer to really shake things up and she asks us to be patient a little while longer. She is with the Office of the Director of NIH, (CFS is no longer at NIAID), and so many branches of NIH are now interested in CFS. 

There was no word on whether Kim Kenney will be continuing on the committee, but election years tend to delay appointments and boy, now we really have a delay!

For those of you who have never been to one of these meetings, they are a challenge to witness and for the body. The committee's existance and invited public testimony is our democracy giving CFS citizens and representatives a voice. You can meet and speak with committee members at breaks and lunch and visit with PWCs who come from around the country. As people who live near DC, we have a special opportunity to attend. Think about it and be grateful to those who have gone before you and begged for changes to social security, accountability from CDC, and a name change. Maybe you will help those coming after you....

A manly Support Hose Testimonial

From member Tom H:

“i tell everybody who will listen that ANYTHING that helps even 1 or 2% is worth doing... and i get about 20 extra minutes of being upright any time i wear those stockings... you still see how often i need to go "upside down" to get the blood back to my head. tell anyone who cares to listen, that i think these support hose, help at least 5% and on some days 10%, as long as you elevate your feet above your head...(like reclining upside down in a barcalounger, or lying on a couch with your feet on a cushion a foot above your head so that the blood can drain back towards your head) if i do this for about 15 minutes before i go out, i can last about an hour.... instead of about 30 minutes with NO stockings and NO letting the blood rush back to my head...”

For good affordable firm and surgical support hose, try AARP pharmacy at (800) 456-2277

(Note: Akers website also tells that lying with her head below her feet has been helpful. The is opposite of the medical advice. The caution about doing this is that when you do get up, it is a big whoosh away from your head which can be difficult to adjust to. But if you try it and it works for you, hooray! Get up slowly. Stop if it doesn't help, makes you  worse, stop.)

Updated 07/06. See our new Support Hose page.

Fibromyalgia News

A long article on fibromyalgia is in the Nov 13, 2000 New Yorker Magazine.
The Cartoon Issue with a black and white cover.

The FMAGW (FM Association of Greater Washington) has a new address: 
140 Zinn Way, Linden, VA 22642-5609. fmagw.org. 
They publish an excellent newsletter called Fibromyalgia Frontiers.


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

Update 07/06: FMAGW changed its name and phone number, too. The July 2006 info is:

Studies

07/06: Old study information removed. Please see our Clinical Trials page for current info.

Happy Thanksgiving!

Be grateful for the body parts that still work, that you can eat on your own, and for life itself!

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