August 2005

 Vol. III, Issue #20

Ribbon          Bergen CFS Support Group Newsletter

Meeting Notice

 

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 2-4 PM in the Pascack Valley Hospital meeting room.  It will be a time to reconnect with old friends and hopefully meet some new ones. For those who have not yet been to a meeting, we hope you will consider sharing an afternoon with us.  The meeting room is handicapped accessible including elevator access to that level.  If you are not well enough to attend – be assured that we understand and hope you will soon be feeling better.  If you cannot come to meetings, please feel free to send us a note telling us about yourself.  We would like to get to know you.

 

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 211 Bedford Rd. Dumont, NJ 07628.  If you have changed your email address or anticipate a change, please let us know.

 

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.

 

Pat LaRosa

Editor

 

 

 

 

 

Research

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.

 

Reuters

Fibromyalgia Pain Markedly Impairs Quality of Life


NEW YORK (Reuters Health) Aug 26 - New research indicates that moderate-severe fibromyalgia pain can dramatically impair health-related quality of life (HRQOL). The good news is that effective pain relief can greatly improve HRQOL.

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.

On all 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 Science University in Portland, and colleagues note. In fact, on most scales, they scored lower than heart failure patients as well.

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.

http://chronicfatigue.about.com/b/a/2005_08_28.htm  

 

Next Meeting

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 annielaurie2@optonline.net or annielaurie617@yahoo.com.  Subscription problems: Nancy Visocki at nvisocki@verizon.net. Editor: Pat LaRosa at pat@larosas.net.

  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

 

The Bergen County Chronic Fatigue Syndrome (CFS) Support Group

 

Where:   Downstairs auditorium, Pascack Valley Hospital, Old Hook Road, Westwood, NJ

When:    2:00pm – 4:00 pm    See list of meeting dates, speakers and topics below.

Why:       To discuss how to cope with CFS and its symptoms, and related CFS issues and information

Everyone is welcome!

 

mark date 

Bergen County Chronic Fatigue Syndrome Support Group

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 US, their functions, purposes and differences.  If you were ever confused about which CFS organization does what, come join us!   


Nov   5th  The Chronic Fatigue Syndrome Conference, sponsored by Monmouth Medical Center and the NJ CFS Association is on November 5th, in Eatontown, NJ.

Nov   20th      A general discussion meeting will take place. 

Dec    18th      Come one, come all and enjoy our annual Holiday Party!!

 

              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:

 

Email        annielaurie2@optonline.net

 

or

 

US Mail    Anne Gilmartin

                211 Bedford Road

                Dumont, NJ 07628

 

 

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