Vol. IV, Issue #39<>>
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.
hope you will
mark your calendar for May 20th. Our speaker will be Lesley
PhD who is an assistant professor of Psychiatry at the
CFS Awareness Month
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
Fatigue Syndrome Association is a non profit organization providing
patients and their families, disseminating reliable information and
research into the causes, treatments and cure of CFS. The State
New Jersey CFS Association, Inc.
Awareness month is s good time to share information about CFS with
friends. Since the CDC/CFIDS Awareness campaign is going on,
consider creating your own mini campaign by sending info about CFS to
family and friends. You might copy one of the ads that have appeared in
magazines or write a letter telling them how much you need and
support. You might want to share that the name grossly
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
Theory.” It can be found at http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php. It also appeared in
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
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.
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:
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
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
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.
The next meeting
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