<>                                                                                                                                                                        April 2007

                                                                                                                         Vol. IV, Issue #39

<>Ribbon
Bergen CFS-FM Support Group Newsletter

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 University of Medicine and Dentistry at Robert Wood Johnson Medical School in New Brunswick.  Dr. Allen is also a principle investigator in the research department.  She will be speaking about sleep in Fibromyalgia.  Since sleep is a major issue in both CFS and FM, we encourage you to consider attending.  The following is a link to more information about Dr. Allen.

http://umg.umdnj.edu/public/directory/doctor.asp?doctor=194482767 

 

CFS Awareness Month

Press release: May 1, 2007 -   Richard J. Codey, Acting Governor of New Jersey, issued a State Proclamation declaring May, 2007 as Chronic Fatigue Syndrome Awareness Month.  Acting Governor Codey joins the New Jersey Chronic Fatigue Syndrome Association (NJCFSA) in recognizing Chronic Fatigue Syndrome (CFS) as a debilitating illness which affects over one million American men, women and children.  The Governor’s Proclamation devotes a special month to increasing knowledge and understanding of CFS.

 

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 and the NJCFSA jointly promote the month of May to increasing awareness of Chronic Fatigue Syndrome for the purpose of assisting patients whose educational, professional, and family lives have been disrupted by the illness.

New Jersey CFS Association, Inc.

PO Box 477

Florham Park, New Jersey 07932

Information line:

888-835-3677

www.njcfsa.org

njcfsa@njcfsa.org

 

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 Bergen CFS-FM newsletter some time ago and in the NJCFSA Newsletter last year.

 

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 Fatigue Study Center

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 New Jersey

 

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, 8:00 a.m. to 5:30 p.m.

 

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 Britain to have the syndrome - also known as myalgic encephalomyelitis - recorded as the cause of her death.

 

In Adelaide last month, Chaudhuri and specialists from all over the world took the first steps towards developing an autopsy protocol that would allow samples to be consistently collected and analyzed from the bodies of people who die, like Mirza, after a long battle with the syndrome. These would form the basis of an international tissue bank in an attempt to shed light on what goes wrong in the baffling condition, which often strikes young and previously healthy individuals. It could help "establish the condition as a valid neurological problem", Chaudhuri says, and might lead to treatments.

 

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 Adelaide was organized by Christine Hunter, via the Alison Hunter Memorial Foundation, which Hunter formed after the death a decade ago of her teenage daughter, who had chronic fatigue syndrome. As the protocol is formalized, the group will seek endorsement from experts around the world, she says, to accelerate its acceptance by the wider medical community.

 

Elizabeth Salisbury, a senior staff specialist in tissue pathology at Royal North Shore Hospital, says formal guidelines would encourage those conducting autopsies to retain appropriate tissues for later genetic, antibody or biochemical testing.

 

"One of the difficulties with a disease like CFS is [it] is very much an emerging science," says Salisbury, who is not involved in the protocol's development. "We don't necessarily understand all the pathological changes that account for the signs and symptoms."

Salisbury says families of patients who die after having chronic fatigue syndrome or other complex, elusive disorders usually support tissue removal. "They really do want the answers," she 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 Pascack Valley Hospital from 2-4 PM.  Our speaker will be Lesley Allen, Ph.D.   There is more information about Dr. Allen in the opening paragraph on page 1 of this newsletter.  We hope you will be able to attend.  There will also be time for open questions and sharing.

 

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.