September 2007  

                                                                                              Vol. IV, Issue #43  

          Bergen CFS-FM Support Group Newsletter

Meeting Report

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 may have read in the Record that Pascack Valley Hospital can no longer afford to stay open and will close in November.  We are working to ensure that the Bergen CFS-FM meetings continue as scheduled – if not there, we will make arrangements for an alternate location.  We will keep you apprised of any changes.  Please watch for updates.

 

We were recently contacted by a young woman in Indiana who is doing a paper on Fibromyalgia.  She is a senior in a very academically focused high school.  A note from her and her questionnaire can be found at the end of this newsletter for those who might be willing to participate.  

 

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.

JOURNAL OF CLINICAL PATHOLOGY
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 Seville Diner 289 Broadway in Westwood.  The group will be there from 1:30 PM until about 3 PM.  Just show up.  If you have any questions or wish to let Frank know you are coming, you can call him at 201-768-4111.  You do not need to contact Frank to attend.

This might be a good time for those who are seeking to share a ride to the conference to coordinate with other members.     

 

NJCFSA Conference    

 A brochure can be downloaded at www.njcfsa.org.  

                      

New Jersey Chronic Fatigue Syndrome Association and Monmouth Medical Center

Co-host

NJCFSA Fall 2007 Conference

Featuring:

Richard Podell, MD    *  Dharam Ablashi, MD  *  Susan Levine, MD  *  Malcolm Schwartz, MD, (Moderator)

ABOUT THE CONFERENCE

DATE: Sunday, October 7, 2007

TIME: 11:30 am - 4:30 pm

LOCATION: Sheraton Eatontown Hotel Conference Center Eatontown, New Jersey

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 the Garden State Parkway exit.

ABOUT THE SPEAKERS

MALCOLM SCHWARTZ, D.O., is the Section Chief of Pediatric Endocrinology at Monmouth Medical Center. He is Board Certified in Pediatrics and Pediatric Endocrinology, and is Assistant Clinical Professor of Pediatrics at Drexel University College of Medicine. He served as President of the North Jersey Pediatric Society, and received the Distinguished Service Award from the American College of Osteopathic Pediatricians. In 2006, Dr. Schwartz received the Merck Excellence in Care Award from the American Osteopathic Foundation.

Richard Podell, M.D., M.P.H., graduated from Harvard Medical School, is Board Certified in Internal Medicine and is a Clinical Professor at Robert Wood Johnson Medical School. Since the 1980's, he has specialized in CFS and FM, and was a principal investigator of the Ampligen Study. He has authored articles and books on CFS, FM and other illnesses, and contributed to A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome. Dr. Podell is in private practice in Springfield and Somerset, New Jersey.

Susan M. Levine, M.D., F.A.C.P., is a Board Certified, Infectious Disease and Allergy & Immunology Specialist, with a primary interest in CFS and FM. Dr. Levine has published many research papers in peer-reviewed journals; she was a contributing author to A Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome. She served on the Name Change Workgroup, reporting to the Federal Government committee for CFS. Dr. Levine collaborates with scientists from multi-disciplinary fields in national and international research studies; she presented her findings at the IACFS conference in Florida in January 2007.

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.

REGISTRATION FORM

Please fill out and detach this form /

copy form for additional attendees

______________________________________________________

Name

______________________________________________________

Address

______________________________________________________

City/State/Zip

______________________________________________________

Daytime phone

 

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:

Holiday Inn, Tinton Falls 800-HOLIDAY

Red Roof Inn, Tinton Falls 732-389-4646

Days Inn, Wall Township 800-325-2525
 

ABOUT NJCFSA
_______________________________________

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 $ ________

(Optional)

TOTAL $________

Please make check payable to: NJCFSA, Inc. Your returned check will be your receipt.

Mail check and this form to:

NJCFSA Fall 2007 Conference

P.O. Box 477

Florham Park, NJ 07932

 

Next Meeting

The next meeting will be Sunday October 21st at Pascack Valley Hospital from 2-4 PM.  We hope you will join us to hear our speaker, Dr. Lesley Allen.  While her specialty is Fibromyalgia, she is expected to address disordered sleep.

 

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 pat@larosas.net, Nancy Visocki at ngv.njcfsa@verizon.net, Judy Machacek at judymachek@msn.com or Frank Kawa at 201-768-4111.

 

 


Fibromyalgia Survey

My name is Whitney Wood. I am a senior at Signature School in Evansville, IN.  I am currently gathering research for a project as part of the International Baccalaureate program.  I am doing research on fibromyalgia in women, and part of that research requires a survey of fibromyalgia sufferers.  I have attached a survey, and I would greatly appreciate it if you would send it to the members of your group with fibromyalgia.   Please fill it out electronically and email it back at whitneywood13@gmail.com, or print it out and mail your response to the following address:

 

Whitney Wood

6088 Pfafflin Lake Blvd.

Newburgh, IN 47630

 

 

Please respond and return this survey as soon as you are able. I greatly appreciate your participation.

First Name:

 

Age:

 

Race:

 

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:

 

 

Widespread pain

Fatigue

Sleep disturbance

Irritable bowel syndrome

Headaches

Facial pain

Heightened sensitivity

Depression

Numbness or tingling in hands or feet (paresthesia)

Difficulty concentrating

Mood changes

Chest pain

Dry eyes, skin, and mouth

Painful menstrual periods

Abnormal bleeding

Dizziness

Anxiety

                             

 

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?

 

Hyperplasia

Uterine leiomyomas

Uterine fibroids

Endometriosis

Cancer of the uterus or ovary

 

Is there anything else you believe may be relevant that you would like to share?