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
We were
recently
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.
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
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
Co-host
NJCFSA Fall 2007
Conference
Featuring:
Richard
Podell, MD *
ABOUT THE CONFERENCE
DATE: Sunday, October 7, 2007
TIME: 11:30 am - 4:30 pm
LOCATION:
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
ABOUT THE SPEAKERS
MALCOLM SCHWARTZ, D.O., is
the Section Chief of Pediatric Endocrinology at
Richard
Podell, M.D.,
M.P.H., graduated
from Harvard
Medical School, is Board Certified in Internal Medicine and is a
Clinical
Professor at
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
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,
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
Next Meeting
The next
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 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
Whitney Wood
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?