Vol. III, Issue #20
Bergen CFS Support Group Newsletter
Where did the summer go? Here we are at September again. Our first meeting of the season will be held
on Sunday September 18th from in the
Some of our members have been meeting socially during the summer thanks to the efforts of member Frank Kawa. I am sure that those who attended had a good time. It adds yet another dimension to our support group. Keep up the good work Frank.
The newsletter is published
monthly from August through June. Most of
our members receive it online. This allows
us to reach you without postage expenses. If
you are currently receiving your newsletter by US mail – but have
access to email – please let us know so we can switch you to the email
version which curtails our costs and allows you to access any links
suggested in the articles. Anne can be
reached at the email addresses below or at
We are so fortunate that Anne Gilmartin continues to be our group leader. There is also assistance from several other members. Frank Kawa organizes social outings. Program scheduling and publicity are the work of Nancy Visocki and Judy Machacek. I will continue as Editor of the newsletter. As always, we are interested in any feedback you might wish to offer – including topics you might wish us to consider.
We hope to see familiar and new faces at the meetings The Schedule is included in this mailing.
Most of those with FM know this to be true, but it is nice to see it validated by research. We know it also holds true for CFS – maybe the research will follow.
Fibromyalgia Pain Markedly Impairs Quality of Life
The findings, which appear in the August 15th issue of Arthritis & Rheumatism, are based on an analysis of data from a randomized trial comparing tramadol plus acetaminophen with placebo for relief of fibromyalgia pain.
The HRQOL of the 313 men and women who participated in the study was assessed with the SF-36 and the Fibromyalgia Impact Questionnaire (FIQ) and compared with the HRQOL of a national sample of noninstitutionalized adults and of patients with heart failure.
scales of the SF-36, the fibromyalgia patients scored lower than the
national sample of adults, lead author Dr. Robert M. Bennett, from
Oregon Health and
As anticipated, the degree of fibromyalgia pain was directly related to the HRQOL impairment seen. Moreover, improvement in pain severity with analgesic agents correlated with the improvement in HRQOL. On most SF-36 and FIQ scales, tramadol/acetaminophen-treated patients showed significantly greater improvements than those who received placebo.
"This study provides evidence that reducing pain can reduce the burden of fibromyalgia during a 3-month period," the authors note. Further studies are needed to determine if addressing nonpain symptoms of fibromyalgia can provide additional improvements in HRQOL.
Arthritis Rheum 2005;53:519-527
Just for Fun
You may enjoy reading about Pamela Rice Hahn. She has CFS and is a writer for about.com. She turns difficult moments into humor.
The next scheduled meeting will be on Sunday September 18th
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 Group Leader Anne at firstname.lastname@example.org or email@example.com. Subscription problems: Nancy Visocki at firstname.lastname@example.org. Editor: Pat LaRosa at email@example.com.
C H R O N I C
Flu-like symptoms, fever, immune system dysfunction
Arthritis-like pain, muscle and joint pain, headaches
Tender lymph nodes, sore throat, swollen glands
Impaired memory or concentration, word confusion
Gastrointestinal problems, nausea
Unrefreshing sleep, insomnia
Exercise intolerance, exhaustion after mild activity
S Y N D R O M E
2005 Meeting Schedule
Sept 18th Welcome back from our summer break!! In addition to a meeting discussion, we are pleased to have as a speaker Beth Sorger, who will be running a workshop on "Energy Psychology for Chronic Illness and Pain." Through self-tapping on a series of acupressure points, learn how to release emotional and physical pain, bad habits, phobias and cravings quickly and effectively. Experience the power of simple and effective tools to create immediate and lasting changes.
Oct 16th We
are pleased to welcome Tracey Gold, CMA, from the Institute of
Neurological Care who will be speaking on pain management, which should
prove interesting and informative. We will
also have a discussion and provide information about the various CFS
organizations in the
Nov 20th A general discussion meeting will take place.
Dec 18th Come one, come all and
enjoy our annual
2006 Meeting Schedule
Meetings in 2006 are on: January 15th, February 19th, March 19th, May 21st and June 11th.
Possible topics, speakers and activities include:
· A motivational speaker
· A review of Rx4NJ and other Social Services available to people
· A discussion of our vital role in CFS Awareness Day and Lobby Day
· A group trip to the 2nd Annual CFS Walkathon in Seaside Heights, NJ
Change of Information Form
If you have made any changes in your contact information, please complete the following and return to Anne Gilmartin via:
US Mail Anne Gilmartin
Email Address _______________________________________________
Phone Number _______________________________________________