Vol. IV, Issue #39
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Meeting
Report
The
meeting date
coincided with the devastating rain that caused so much flooding in
parts of
NJ. We hope you are all safe and that your homes are
intact. Some
of us challenged our limited endurance to shore-up and clean-up, but
are
enjoying spring arrival – albeit a little late. Four team members
managed
to make it to PVH for the meeting because we did not have a contingency
plan
for cancellation. We were grateful that you were all wise enough
to stay
home. In the future, if weather is an issue, please check your
email
before leaving for the meeting. We will try to send a message if
we think
that traveling is not safe. There is also contact info at the end
of the
newsletter.
We
hope you will
mark your calendar for May 20th. Our speaker will be Lesley
Allen,
PhD who is an assistant professor of Psychiatry at the
http://umg.umdnj.edu/public/directory/doctor.asp?doctor=194482767
CFS
Awareness Month
Press
release:
Chronic Fatigue
Syndrome is
a serious and often disabling illness that attacks multiple body
systems
causing cognitive and neurological problems, swollen lymph nodes,
fever, sore
throat, muscle and joint pain, gastrointestinal problems, sleep
disorders,
incapacitating fatigue, post-exertional malaise, dizziness, and many
others. Scientists believe that factors such as exposure to
infectious
agents, environmental toxins, physical trauma and genetics engage in a
complex
interplay to produce the syndrome.
The New Jersey
Chronic
Fatigue Syndrome Association is a non profit organization providing
support for
patients and their families, disseminating reliable information and
promoting
research into the causes, treatments and cure of CFS. The State
of
New Jersey CFS
Association,
Inc.
Information line:
888-835-3677
CFS
Awareness month is s good time to share information about CFS with
family and
friends. Since the CDC/CFIDS Awareness campaign is going on,
please
consider creating your own mini campaign by sending info about CFS to
your
family and friends. You might copy one of the ads that have appeared in
the
magazines or write a letter telling them how much you need and
appreciate their
support. You might want to share that the name grossly
understates the
seriousness of the illness. Invite them to a support group
meeting or a
CFS event in your area. You could also show them a copy of “The
Spoon
Theory.” It can be found at http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php. It also appeared in
a
NJCFSA
Spring Conference
Coverage
of the
spring conference will be included in the fall issue of the NJCFSA
newsletter. The newsletter is sent to members of the
NJCFSA. If you
are not a member you might want to consider joining. Last fall’s
conference will appear in the issue to be distributed this month.
In The News
From
Co-leader,
Judy Machacek:
Reminder
to
anyone with sleep problems!!?? --all of us...
Sleep
and
Cytokines in Chronic Fatigue Syndrome Research Study at UMDNJ and I
think they
pay your expenses and a small fee too.
Call
Jennifer
FitzGibbons
Dr.
Benjamin
Natelson
Dept
of
Neurology and Neurosciences
Pain
and
973-972-4800
If
you have a
friend who is not sick, I think they may need healthy control
volunteers too.
Find
a friend
and travel together. Jennifer is very accommodating.
Judy
FYI
Co-Leader
Judy
Machacek has been doing some research and found this information that
might be
helpful to some of you.
For
legal advice
and general information:
Legal
Services of
Get
help with
your legal problem. For information, publications, forms, and
other sources of help, go to the site www.LSNJLaw.org or call the number
below.
Low-income
New
Jerseyans can get free legal help by phone: call our toll-free hotline
at 1-888-LSNJ-LAW
(1-888-576-5529), Monday through Friday,
http://www.advocacyforpatients.org/ might be another helpful
site.
In The News
The Sydney Morning Herald
SMH.com.au
Victims give
clues to the answers
April
12, 2007
The development of an autopsy
protocol may help unlock some of the mysteries of chronic fatigue
syndrome,
writes Julie Robotham.
UNDER the microscope, it could not have been
clearer. Sophia Mirza's brain and spinal fluid showed indisputable
evidence of
inflammation and cell death. The discovery, by the neurologist Abhijit
Chaudhuri
and a neuropathologist colleague, marked the first time a serious
abnormality
confined to the central nervous system had been identified at the
post-mortem
examination of a patient whose principal diagnosis was chronic fatigue
syndrome.
In turn, that ensured the 32-year-old became the
first person in
In
Chaudhuri, a consultant neurologist from the Essex
Centre for Neurological Sciences, says the protocol is intended to
allow
non-specialist pathologists to collect and preserve samples, which
could then
be examined by a neuropathologist. The move comes amid concern that
brain and
spinal cord tissues which might shed light on the disorder are being
lost
because pathologists do not appreciate their significance.
In Mirza's case, and in another autopsy on a young
British man, "there was no way [their illness] could be explained by a
primary psychiatric condition", Chaudhuri says, referring to a
widespread
assumption that the condition - which typically begins after a viral
illness
and is estimated to affect up to 140,000 Australians - is related to
mental
stress.
Daniel Peterson, an American physician who
specializes in chronic fatigue syndrome, says its name has allowed it
to be
trivialized. "These are very complex patients to understand," he
says. "We've been held back by biases." Peterson, who is
establishing a research centre at the University of Nevada, says he is
most
interested in forms of the condition that arise after recognized
infections,
which seem to trigger immune disturbances.
The specialists' meeting in
Elizabeth Salisbury, a senior staff specialist in
tissue pathology at
"One of the difficulties with a disease like
CFS is [it] is very much an emerging science," says
Colin Neathercoat, a director of the advocacy group
ME/CFS Australia, says the cost of supporting patients with long-term
disability from the syndrome is enormous, and more funding is needed
for
research into its origins and possible treatments.
"We would desperately like to see government
engage in this growing problem and recognize its impact on the
Australian
economy, let alone its impact on sufferers," he says.
http://www.smh.com.au/news/science/victims-give-clues-to-the-answers/2007/04/11/1175971183260.html#
Next
Meeting
The next meeting
will be
Sunday May 20th 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,