The Northern Virginia
CFS/FMS
Support Group

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.

GAO Report On CFS Released

GAO UNDERSCORES PROBLEMS IN RESEARCH PROGRAMS

Senator Harry Reid (D-Nev.) today released the findings of a year-long General Accounting Office (GAO) study of the CDC and NIH research programs for CFS. The report validates allegations from The CFIDS Association and patient community that research has been set back considerably. It confirms the damage done by the CDC's misallocation of CFS funds, and further charges that the CDC and NIH have failed to coordinate research efforts.

REPORT FINDINGS

The limited scope of the investigation and lack of recommended corrective measures in the final report is disappointing. However, despite its limitations, the report provides documentation of the numerous deficiencies in the federal government's response to CFS, and is a valuable tool in justifying requests for future action by Congress and federal agencies. The report documents:

• A declining CFS research program at the National Institutes of Health since 1996, including diminishing expenditures and staff

• Lack of effective communication between NIH and CDC about CFS activities

• CDC's misspending of CFS research funds, which has impeded progress in research on CFS

• Department of Health and Human Services' ineffective leadership of the CFS Coordinating Committee
  
  

ADVOCATE RESPONSE

The satisfactory elements of the NIH and CDC CFS programs reported by GAO were largely the result of advocates' work with Congress to stimulate and direct an improved response to CFS. Advocates visiting Capitol Hill tomorrow for The CFIDS Association of America's ninth annual Lobby Day will be asking federal representatives to:

• Maintain strong report language in FY '01 Labor/HHS Appropriations Bills

• Direct increased funding for CFS research by NIH, along with a proactive plan to stimulate extramural research in this field following the October 25, 2000 State of the Science meeting

• Monitor additional agency audits being performed by GAO, the Inspector General and outside accounting firms

• Direct the Secretary of Health to actively participate in the CFS Coordinating Committee, and to appoint a non-federal chairman of the committee, consistent with other DHHS advisory committees
  
  

FOR MORE INFORMATION
A more detailed analysis of report content will be published in the summer [2000] issue of The CFIDS Chronicle, due out in mid-August.

Vicki C. Walker
Research & Public Policy Project Manager

K. Kimberly Kenney
President & CEO

The CFIDS Association of America
PO Box 220398, Charlotte, NC 28222-0398
Fax: 704/365-9755
Resource line: 704/365-2343
On the web: www.cfids.org

How to Get the GAO CFS Report

The full text of the GAO CFS report is available online at Roger Burns' CFS-NEWS website: http://www.cfs-news.org/gao-2000.htm .

It is available in Adobe Acrobat format from the GAO website: http://www.gao.gov/new.items/he00098.pdf .

You can also order a single copy from the GAO for free. Just request report number GAO/HEHS-00-98 (June 2000) on Chronic Fatigue Syndrome. Just submit your request by phone (202) 512-6000, TDD (202) 512-2537, fax (202) 512-6061, or mail at U.S. General Accounting Office, P.O. Box 37050, Washington, DC 20013.

CFIDS Lobby Days 2000 - Elly's Report

Lobby days went very well. : ) There was 1 Virginian from our support group (me) and 4 Marylanders (Toni, Joan, Diane, and Cheri). We were joined by folks from other parts of those states and TX, CA, NV, NY, NJ, NC (including my Mom!), MA, PA and more. Around 60 folks did 80+ appointments. I especially enjoyed the visit to my representative (Tom Davis') office as we found out how strong he is on health care from his aide Hana Brilliant. He was the only Republican rep to vote for the patient bill of rights!!! Hooray.

The first timers were anxious that they wouldn't remember the facts and figures, but in the end it was putting a face to the disease that mattered. Almost every aide we met (it's rare to meet the actual member of Congress) knew someone who had CFS, a sorority sister, a friend or relative.

According to the CFIDS Association it was the best and easiest lobby day ever with the help of the GAO report and time of year (after appropriations bill). Tom Sheridan and Mary Beth Buchholz from the Sheridan group and all those at the CFIDS Association did a great job to prepare us and congress for our visit. I can't say enough good things about all of them. I try really hard to understand much of the stuff that goes on in the background and I am sure I can't quite fathom all they do for us.

One disturbing, disappointing really, thing we learned were the low numbers of people who are members of the CFIDS Association by state. Here is an excerpt from a chart we received. The first column is the number of calls The CFIDS Association received since Jan 1, 1998 on the general phone number. The second number is current members calls current members:

• VA 1060  297
• DC     51   42
• MD  683  226
• NC 1586  381
• PA  2539 573
• And for comparison CA 5473 1664
  

Our group has 400 people on our mailing list. Maybe only a third belong to the national group. Please, join or rejoin the CFIDS Association so you can be counted. Encourage your friends. Even if you don't read The CFIDS Chronicle - donate it to your doctor's office or the group and we will share it with others. Hardship memberships available with proof of financial difficulty. We use these numbers on lobby day. Be a part!!!

Advocacy is important work that good democracy requires (letter writing, lobbying and more). If those that came before us weren't interested, we with CFS would all be in a lot worse shape. Let's contribute to the next generation with our efforts in the now and near future. - Elly

8 Past Year Events Show Progress in Federal Efforts

Eight events in the past year that indicate progress in federal efforts.
(Source: The CFIDS Association of America's Lobby Days Handouts)

Amen.

H-2-GO

From Elly:
The Brita Fill and Go is on sale at Giant this week for $2 off. Filters are 50 cents off. Prices: $5.99 and 2.99. It only filters chlorine but I find it good for when I am out and about and need to fill up at water fountains and things. I realized long ago that carrying water with me is too heavy and I relapse so this helps me save money by not buying bottled while out and makes the tap water taste and smell better.
----------
From Kathy:
Hi Elly, Just a note about the filtered water bottles. I have found that the INNOVA bottles by IPUR are the best. Now distributed by Rubbermaid, they also filter out bacteria in addition to chlorine and other chemicals, and the filter lasts much longer than Brita. I also think they are less expensive than Brita, were the first to come out with the sports bottle, and are now sueing the "B" company for patent infringement. And they make the water taste great.
----------
From Elly:
Thanks to Saundra V for forwarding this next item to me. As we had a chance to discuss distilled water at length at Last Sat's meeting, this is very timely. Our speaker (more to come about her well received talk and suggestions) recommended either distilled or reverse osmosis filtered water, and avoiding that stored in plastic, especially if it has been in heat such as in a car. Perhaps a good approach is to vary the types of water you drink!
----------
From Saundra:
This is Dr. Mercola's article on risks of drinking distilled water and softdrinks. I would be interested in any comments on this.

Early Death Comes From Drinking Distilled Water

Chi Kung / Qi Gong

Elly: I was contacted and invited to look at a chi kung website and course by River Gibeaut at hometown.aol.com/rivgibeaut/myhomepage [no longer active - 06/06]. I am very impressed by it. There are a few too many references to cure and healed than I like to see only because those are very charged words for us and many of us have been burned by them before. And many of us turn away and stop listening once we hear them. We must recognize that healers must believe in their techniques and keep ourselves open to possibilities without being swept away just on wishful thinking. On this website, I saw letters by people who have CFS and tried it  and some of the exercises to open the energy pathways are described. 2006: River Gibeaut's website seems to be gone, but this 2005 Pittsburgh article mentions him. Socrates Cafes help people to see other viewpoints

NOTE:  I am a supporter of the healing powers of chi kung (also spelled qi gong). Last month I even invested in a $700 massager based on the acoustic emanations of qi gong masters. It has already helped me with leg cramps and a blockage in my back where I have scoliosis. If you are serious about wanting to invest time and WORK in your own healing (not just wait for a magic pill or doctor), learn chi kung. It isn't hard, but it takes commitment. And if you don't feel up doing something like this on your own,  people like River Gibeaut can help. 

Magnets

For those interested in Nikken products (magnets, more) which are sold in a multilevel type business, a conference call is taking place Wed eve. A local person with FMS who has been dramatically helped wrote in to tell us about it. While I detest most marketing systems like this, it is usually best to judge the product, not the passion of the sales people nor the delivery system. All I can personally say is that one of their products made me very ill after short exposure and another I have used daily and successfully for more than two years (the shoe inserts) with noticible help (less knee and lower leg pain). This call sounds like a good way to learn more before you buy. Just don't get swept away and spend your next mortgage payment!!!  - Elly

New CFS, FM related Books

New CFS-related books have been published recently. And several more are coming. See our Bookshelf Pages for 2000 and 1999. Here are some of the highlights:

• Phytotherapy of Chronic Fatigue Syndrome: Evidence-Based and Potentially Useful Botanicals in the Treatment of CFS by Roberto Patarca-Montero. (October 2000)
  

• Adolescence and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
  Journeys With the Dragon by Naida Edgar Brotherston. (September 2000)
  

• Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome
  by Peggy Munson (Editor). (August 2000)
  

• Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses:
  A Complete and Compassionate Guide
  by Katrina Berne, Daniel L. Peterson (July 2000)
  

• CFIDS, Fibromyalgia, and the Virus-Allergy Link: Hidden Viruses, Allergies, and Uncommon Fatigue/Pain Disorders by R. Bruce Duncan. (June 2000)
  

• Casualties of Progress: Personal Histories from the Chemically Sensitive
  by Alison Johnson (Editor). (January 2000)
  

• Fibromyalgia and Chronic Fatigue: Acutherapy and Holistic Approaches
  by Sunny Cooper (January 2000)
  

• Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife
  by Gregg Piburn (Arthritis Foundation, Jan 1999) 
  Lisa Lorden's interview with the author: http://fmaware.org/patient/family/piburn.htm
  

• Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome:
  Insights from Practitioners and Patients by Mari Skelly, et al. (November 1999)
  

• A Parent's Guide to CFIDS: How to Be an Advocate for Your Child With Chronic Fatigue Immune Dysfunction by David S. Bell, et al. (April 1999)
  
  

For more CFS / FM books, See our Books & Videos and Amazon Associate's page or Search our Site for a particular author or topic. See also the NFP's Books & Videos Page, the NFA's Bookstore, CND's CFS/FM book page, and the CSSA Books & Videos Page.

Job Accommodation Network

The Job Accommodation Network (JAN) is a service of the President's Committee on Employment of People with Disabilities (PCEPD). The Job Accommodation Network (JAN) is not a job placement service, but an international (US & Canada) toll-free consulting service that provides information about job accommodations and the employability of people with disabilities. JAN also provides information regarding the Americans with Disabilities Act (ADA) Job Accommodation Network West Virginia University PO Box 6080 Morgantown, WV 26506-6080. 800-526-7234 in the US (Voice or TT), 800-526-2262 in Canada (Voice or TT) Internet: http://www.jan.wvu.edu

Consultants from the Job Accommodation Network have compiled several ideas for accommodating individuals with disabilities. Please note that this information is not all inclusive. For additional information contact us via phone or e-mail. The following is a list of publications describing potential accommodation ideas by disability: Included are:

• Job Accommodations for Chronic Fatigue Syndrome http://www.jan.wvu.edu/media/cfs.html
  
  
• Job Accommodations for Fibromyalgia http://www.jan.wvu.edu/media/Fibro.html
  
  
• Job Accommodations for Multiple Chemical Sensitivity http://www.jan.wvu.edu/media/MCS.html

(Posted on Co-Cure by Michelle Banks, MS, Ed, author of
Educational Rights, Responsibilities and Options for YPWCs and Others)

Two New Members of CFSCC

New members have joined the DHHS Chronic Fatigue Syndrome Coordinating Committee, as announced at the July 12, 2000 special meeting of the CFSCC. They are Jeffrey A. Rabin, J.D., of Chicago, Illinois, and Leonard Jason, Ph.D., of DePaul University, also in Chicago.

Mr. Rabin has represented individuals seeking benefits under the Social Security Act and also serves on the Board of Directors of two chronic fatigue syndrome support organizations in northern Illinois. Dr. Jason recently completed a study on the demographics of CFS, demonstrating a prevalence among ethnic populations that is significantly higher than previous studies had shown.

Attorney Aba Heiman and researcher / physician Nancy Klimas, MD, completed their terms of service in July and were acknowledged for their contributions at the July 12 meeting.

Continuing public members of the committee are
Ms. K. Kimberly Kenney, CFIDS Association of America;
Dr. Anthony Komaroff, Harvard Medical School;
Ms. Janet Montgomery, Consultant, Kailua, Hawaii;
Dr. Peter Rowe, Johns Hopkins University, and
Mr. Jonathan Sterling, New Jersey CFS Association.

Nutritional Booklet

Recovering PWC Carolyn Suter offers her research about a diet she has come up with for optimizing health by alkalinizing the body, avoiding gluten, and using macrobiotic principles. For $8 including shipping, she will send you her book. Send to her at 26 Antoinette Ave, Poughkeepsie NY 12601. I "met" Carolyn on a support group leader conference call in May. She had not yet become a leader but was invited to participate to ask questions of other leaders. She talked about how she feels much better following this program and also says it must be tailored for an individuals sensitivities. That shows some smarts. If anyone orders the book, please tell us about it.  - Elly

Update: Support group meets noon on the first Sat of month. Call 462-5672, area code (845).

Novel: And So It Began by Jy Chiperzak

Elly: I received a mailing from Canada about a new novel called "AND SO IT BEGAN: chronic illness, soul loss. an initiation into the realm of spirit." by Jy Chiperzak. Jy's "fall" to CFS and re-emergence from it 7 years later is the root of the book. It is told within a traditional framework anyone can embrace, a rite of passage to wellness, purpose and the lessions to be learned in the practice of life. "The novel 'And So It Began' is a mythic story of coming to terms with, then passing through, a chronic and debilitating disease: Chronic Fatigue Syndrome. It is a drama of inner darkness, of one alone in pain, depression and cognitive disruption; of life, 'Self' and soul that is stripped away to open the way to rebirth. Embarking on a psycho-spiritual journey that shifts his perceptual framework of reality, Nature, 'the wild', and otherworld beings initiate 'Bran' into the realm of shamans and Spirit, a rekindling of life's fire that is wellness and the awakening to life's purpose." It is by Trafford Publishing, ISBN 1-55212-365-0, 333 pages, paperback. $29.50 US. For signed copies, contact the author directly at jychiperzak AT hotmail. 

October 2000 State of the Science of CFS Conference

Posted on the CFSCC Listserv, 7/24/00: The U.S. Department of Health and Human Services invites you to attend the "Chronic Fatigue Syndrome Coordinating Committee State of the Science Conference" on October 23-24, 2000 at the Key Bridge Marriott, 1401 Lee Highway, Arlington, Virginia. To receive additional information about the Conference, (brochures available in early September), please complete and return the form emailed to group members to IQ Solutions, Inc, Attn: CFSCC State of the Science Conference, by email, by fax to (301) 984-1473 or by regular mail to 11300 Rockville Pike, Suite 901, Rockville, MD 20852. There is no registration fee to attend the conference.

Because October is busy in Washington, DC, a block of single, nonsmoking rooms has been set aside at the Key Bridge Marriott at the special rate of $149 per night (not including tax). To make your reservations, please contact the hotel directly at (800) 228-9290 and reference the CFS meeting. You are responsible for making your own lodging reservations and payment. (Note: Marriott properties are in compliance with the Americans with Disabilities Act.)

SNAP to it for Children With Special Needs

http://www.snapinfo.org/index.html is the URL for an organization called SNAP which helps families who have children with special needs. This might be of interest to families with children with CFS. SNAP contact info is 888-310-9889, email: info@snapinfo.org
"Please contact us if you are a parent who needs someone to help you plot a course through the resources, information and support services that best fit your family’s situation, or if you need medical insurance problem-solving assistance." Thanks to Marsha T. Wallace, MD, for this tip.

CFSCC Website

The website for the DHHS CFS Coordinating Committee is now live at: www4.od.nih.gov/cfs

You will find the agenda of the upcoming state of the science meeting in October as well as
the minutes from the February 8, 2000 meeting of the DHHS CFSCC.

06/06: Now that it is an Advisory Committee, the website is http://www.hhs.gov/advcomcfs

ADA 10th Anniversary

July 26 was the tenth anniversary of the enactment of the Americans with Disabilities Act. Two wonderful websites have appeared in connection with the anniversary:

• disAbility.gov - http://www.disability.gov/ - The Presidential Task Force on Employment of Adults with Disabilities created this site to provide one-stop online access to resources, services, and information available throughout the Federal government.

• iCan - http://www.ican.com aka http://www.icanonline.net - A place where people affected by disabilities can take advantage of the community building power of the Internet. A one-stop resource for information, guidance, conversation and companionship. 877-275-4226

July 2000 Meeting Summary

Member Cheri B took notes from our July speaker presentation on Nutrition. Thanks Cheri! See our Speaker Notes for J. Offutt Page.  Meeting handouts also there, including
Ten Commandments for a Long and Healthy Life.

Recent Study By Drs Bell & Streeten

No Other Illness Like This One: Dr. Bell Finds Dramatic Abnormalities in CFIDS
by Joan S. Livingston, About.com columnist, 7/26/00

"The findings from a new study by Dr. David S. Bell of Lyndonville, NY.
Lyndonville was the site of a major CFIDS cluster epidemic in the 1980s that morphed Bell from a rural pediatrician into a world-renowned CFIDS researcher as he sought to understand what was happening to his patients."

The full article is no longer archived at About.com.  For our CFSupport Yahoo members, we keep a PDF verison in our Files section.

The article refers to the following paper:

The roles of orthostatic hypotension, orthostatic tachycardia, and
subnormal erythrocyte volume in the pathogenesis of the chronic fatigue syndrome.

Am J Med Sci 2000 Jul;320(1):1-8
Streeten DH, Thomas D
Bell DS
Department of Medicine, State University of New York (SUNY) Health Science Center,
Syracuse 13210, USA.

New York Times Articles on FM & IBS

Fibromyalgia: Real Illness, Real Answers
The New York Times, August 1, 2000
PERSONAL HEALTH
By JANE E. BRODY

"Is it a real disease?" is the most frequently asked question about fibromyalgia, an ailment characterized by chronic widespread musculoskeletal pain. The cynical tone that usually accompanies the question suggests that many think this syndrome is all in a person's head, the result, perhaps, of an emotional disorder or an attempt to avoid the demands of work and life. Not so, say experts who have spent years studying this controversial disorder. Yes, some
people with fibromyalgia may be depressed or anxious, but wouldn't you be if you couldn't carry a bag of groceries, walk through a park or tie your shoelaces without considerable pain?"

For the complete article, see:
http://www.nytimes.com/library/national/science/health/080100hth-brody.html

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