Vol. IV, Issue #43
Bergen CFS-FM Support Group Newsletter
What a great turn-out at the September meeting...old friends and new friends sharing something in common. To those of you, who were not in attendance, you are still very much a part of the group. Our speaker was from Legal Services of New Jersey. This agency “coordinates the statewide network of nonprofit Legal Service programs that provide free legal assistance in civil cases to low-income NJ residents.” Information can be found at their website www.lsnjlaw.org. The LSNJ-Law Hotline is 1-888-LSNJ-Law (1-888-567-5529) and is open from 8AM to 5:30 PM Monday through Friday. If you have questions, do not hesitate to contact them. If you are out-of-state, you might find that your state has a similar program. It is not the same as Legal Aid. These are fully certified attorneys who choose to practice through this program.
Some of you
read in the Record that
contacted by a young woman in
One last reminder about the upcoming conference.
The widely recognized speakers are expected to be extremely informative. The registration information is included in this newsletter.
Correction – The Volume number on the August issue was listed as “V” instead of “IV.” The Issue number was correct.
In the News
This article from the Journal of Clinical Pathology was also in the CFIDS of American news release.
Chronic fatigue syndrome linked to stomach virus
[Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach Online First J Clin Pathol 2007; doi: 10.1136/jcp.2007.050054]
Chronic fatigue syndrome, also known as ME (myalgic encephalitis), is linked to a stomach virus, suggests research published ahead of print in Journal of Clinical Pathology.
The researchers base their findings on 165 patients with ME, all of whom were subjected to endoscopy because of longstanding gut complaints. Endoscopy involves the threading of a long tube with a camera on the tip through the gullet into the stomach.
Specimens of stomach tissue were also taken to search for viral proteins and compared with specimens taken from healthy people and patients with other gut diseases none of whom had been diagnosed with ME. Patients with ME often have intermittent or persistent gut problems, including indigestion and irritable bowel syndrome. And viral infections, such as Epstein Barr virus (glandular fever), cytomegalovirus, and parvovirus, among others, produce many of the symptoms associated with chronic fatigue syndrome.
Enteroviruses, which infect the bowel, cause severe but short lasting respiratory and gut infections.
There are more than 70 different types, and they head for the central nervous system, heart and muscles. Most of the biopsy specimens from patients with gut problems showed evidence of mild long term inflammation, although few were infected with Helicobacter pylori, a common bacterial infection associated with inflammation. But more than 80% of the specimens from the ME patients tested positive for enteroviral particles compared with only seven of the 34 specimens from healthy people.
In a significant proportion of patients, the initial infection had occurred many years earlier. Click here to view the paper in full: http://press.psprings.co.uk/jcp/september/cp50054.pdf
Just For Fun
Social Director, Frank
Kawa, has set
a date (Wednesday September 26th) for a luncheon at The
This might be a good time for those who are seeking to share a ride to the conference to coordinate with other members.
A brochure can be downloaded at www.njcfsa.org.
Jersey Chronic Fatigue Syndrome Association
NJCFSA Fall 2007 Conference
Podell, MD *
ABOUT THE CONFERENCE
DATE: Sunday, October 7, 2007
TIME: 11:30 am - 4:30 pm
ADMISSION: Register by September 23: $35 Register on conference day: $45
NJCFSA HelpLine: 888-835-3677
Registration includes buffet lunch, program handouts, and free parking. For health considerations, this conference is fragrance-free, smoke-free and pet-free.
Directions to the
Sheraton: Garden State
Parkway to exit 105, Route 36 East to
Route 35 South to Industrial Way East. The Sheraton is 5 minutes from
ABOUT THE SPEAKERS
MALCOLM SCHWARTZ, D.O., is
the Section Chief of Pediatric Endocrinology at
Medical School, is Board Certified in Internal Medicine and is a
F.A.C.P., is a Board
Infectious Disease and Allergy & Immunology Specialist, with a
interest in CFS and FM. Dr. Levine has published many research papers
peer-reviewed journals; she was a contributing author to A Consensus
the Primary Care and Management of Chronic Fatigue Syndrome. She served
Name Change Workgroup, reporting to the Federal Government committee
Dr. Levine collaborates with scientists from multi-disciplinary fields
national and international research studies; she presented her findings
at the IACFS
Dharam V. Ablashi, D.V.M., M.S., Dip. Bact., worked at the National Cancer Center (NCI) at the National Institutes of Health (NIH) for 22 years as a Research Microbiologist, Head of DNA Viruses Section and Coordinator of DNA Viruses. He is internationally known for his work on Human and Primate Herpesviruses. In 1986, he co-discovered Human Herpesvirus-6 (HHV-6). He has contributed numerous articles and co-authored two books on HHV-6. Dr. Ablashi is co-founder of the Epstein-Barr Virus Association, and the American Association for Chronic Fatigue Syndrome - where he was President from 2003 to 2004. He was Director of Herpesvirus Programs at Advanced Biotechnologies, Inc. He has served as a consultant and advisor to many organizations, including the United Nations, WHO and NASA. Dr. Ablashi is an Adjunct Professor at Georgetown University School of Medicine, and Scientific Director of the HHV-6 Foundation.
Please fill out and detach this form /
copy form for additional attendees
Accommodations at the Sheraton:
To reserve a room at a discounted rate of $135 per night at the Sheraton Eatontown Hotel, please call 732-542-6500 by September 7, and refer to the NJCFSA Fall 2007 Conference.
Other hotels in the area:
Red Roof Inn, Tinton Falls 732-389-4646
Days Inn, Wall
NJCFSA is a non-profit organization that supports patients and their families with the following: HelpLine, website, physician and attorney referrals, current medical information, newsletter, support groups, lending library, medical conferences, fundraisers, funding for CFS research, high school student & medical school student scholarships, public education, publicity and media coverage, public policy and advocacy.
Please support the activities of NJCFSA by becoming a member
for an annual $25!
Conference registration: $35 $ ________
NJCFSA membership: $25 $ ________
Please make check payable to: NJCFSA, Inc. Your returned check will be your receipt.
Mail check and this form to:
NJCFSA Fall 2007 Conference
meeting will be
Sunday October 21st at
This newsletter is intended for CFS patients in the area of this support group. The purpose is to share information and support. If you have questions about meetings please contact: Pat LaRosa at firstname.lastname@example.org, Nancy Visocki at email@example.com, Judy Machacek at firstname.lastname@example.org or Frank Kawa at 201-768-4111.
My name is Whitney
Wood. I am a senior at
Please respond and return this survey as soon as you are able. I greatly appreciate your participation.
Have you been diagnosed with fibromyalgia by a doctor? If yes, at what age?
Mark an X next to any of the following symptoms that you suffer:
Irritable bowel syndrome
Numbness or tingling in hands or feet (paresthesia)
Dry eyes, skin, and mouth
Painful menstrual periods
At what age did you begin to notice symptoms of fibromyalgia?
Approximately how many hours of sleep do you get each night? Do you awake well rested?
Do any of your relatives have fibromyalgia? If so, please specify their age and relationship.
Do you still have a period?
If no, why (menopause, surgery, etc.), and at what age did it stop?
If yes, do you experience more pain before, during or after periods?
Have you had a hysterectomy? If yes, at what age?
If yes, did you have one or both of your ovaries removed?
Are you currently taking hormone replacement therapy, or have you taken it in the past? If so, what type?
Have you had difficulty becoming pregnant? If yes, why?
If able to become pregnant, were you able to maintain the pregnancy?
If no, how far along was the pregnancy lost, and what was the explanation for the loss?
Do you have purple or white stretch marks?
Number of pregnancies:
Number of live births:
Number of miscarriages or spontaneous abortions:
Have you been diagnosed with any of the following other conditions? If yes, at what age?
Cancer of the uterus or ovary
Is there anything else you believe may be relevant that you would like to share?