October 2007  
  
Vol. IV, Issue #44   

          Bergen CFS-FM Support Group Newsletter

 

Meeting Report

Editor’s note: My apologies for a very brief newsletter.  I seem to be running short on time and long on things to do.  The next issue will be lengthier.

 

A large number of members welcomed our speaker, Lesley Allen, Ph.D.  Dr. Allen is a clinical psychologist and an Associate Professor at the UMDNJ (Robert Wood Johnson). She is a principal investigator on several studies, including one on sleep that is in conjunction with the makers of Lunesta.  She has a private practice and encourages the uses of cognitive behavioral therapy as a means to copy with chronic sleep disorders. 

 

A portion of the program was devoted to relaxation exercises.  Members were told how they can lower the rate of respirations which will result in a calming of the body and mind.  There were many questions about medications, but Dr. Allen reminded everyone that as a psychologist, she does not prescribe medications and that these questions should be addressed to physicians.  She stated that there is definitely a place for medication in the treatment of pain and disordered sleep.  Her current study has some of the subjects taking Lunesta to determine its possible benefits to patients.  Dr. Allen encouraged people to consider the possibility of becoming involved with clinical trials.  Those who have questions or might be interested about her trials can contact:

Dr. Lesley Allen

Robert Wood Johnson Medical School

671 Hoes Lane

D-307

Piscataway, NJ 08854

732-235-4412

732-235-3378

Requirements for the Lunesta Study: Participants must be 18-64 years old, have Fibromyalgia or experience widespread pain, and have sleeping difficulties.

 

 

Meeting Site

As we reported last month, Pascack Valley Hospital will close in November.  We are working to ensure that the Bergen CFS-FM meetings continue as scheduled.  We are still working on arrangements for a new location.  We will keep let you know where the December meeting will be held.  Watch for the notice!

 

 

Name

Some of you may have noticed that “CFS” now often appears as “CFS/ME” or “ME/CFS.”  It is widely accepted that the name Chronic Fatigue Syndrome does not reflect what patients really experience.  In many other countries, it is called Myalgic Encephalopathy or Myalgic Encephalomyelitis (ME).  In an effort to unify the world efforts the international communities have chosen refer to this illness as CFS/ME or ME/CFS.  They are the same illness.  There may someday be a name change – hopefully it will be an internationally accepted name

 

 

**** For Fun***

Social Director, Frank Kawa, has set a date

Wednesday November 7th

 Luncheon

at

The Seville Diner

289 Broadway

 Westwood

The group will be there from 1:30 PM until about 3 PM.

Just show up.

If you have any questions or wish to let Frank know you are coming, you can call him at 201-768-4111.  You do not need to contact Frank to attend.

 

Do you know a good doctor?

Perhaps the most frequently asked question by ANY CFS-FM patient has got to be, “Where can I find a good doctor?” 

 

If you know of a doctor that you found to be caring, understanding or compassionate about CFS, please consider letting us know about him/her.  Our parent organization maintains a list of Healthcare Professionals (Physicians, Nurse Practitioners, Physicals Therapists, Psychologists, any in the health field) and it is continuously being updated.  There is also an attorney list. 

 

We really do want to believe that there are more healthcare professionals who are willing and able to care for CFS patients.  The only way we know about them is through referrals by grateful patients.

 

The credentials of each submission will be verified and the doctor, lawyer, etc. will be contacted to see if he/she agrees to be added to the list.

 

For each person you recommend, please include:

·        Your Name and contact information – in case we have a question about the information submitted. What seems very clear when you submit it may need some extra clarification.

 

Please provide the following information for each person you are recommending:

·        Name

·        Address (including County)

·        Phone Number

·        Specialty (Internal Medicine, Rheumatology, Orthopedics, etc.)

·        Comments (any remarks you may wish to make about this person “Treats CFS/FM” “Knowledgeable re: disability” etc.) 

 

T’ai Chi Chih Schedule    

Many of our members have found T’ai Chi Chih to be a very helpful coping mechanism.  It provides gentle, calming movement that can even be performed sitting in a chair, for those unable to stand for any length of time.  For those who are interested, we have included a schedule of classes at one local facility.  If you live in other areas, you could check with your local hospital, adult education or other community programs to see if they have classes.

 T’AI  CHI  CHIHÒ   Joy thru Movement

 

Experience the positive effects of the gentle, graceful movements of

T’ai Chi Chih practice:

 

*Increased energy              *Lack of fatigue

                   *Greater flexibility & balance

*Spinal strength         *Reduced stress

*Control blood pressure      *Improve bone density

       *Improved focus and creativity

 

SEPTEMBER CLASSES at the LUCKOW PAVILION OF VALLEY HOSPITAL

 

Beginner Classes: Tuesday    November 13th – 4:30 & 6:15 PM

                            Thursday - November 15th 9:30 AM

**Intermediate Classes:  Thursday  - November 15th - 4:15 PM

                                          Tuesday    November 13th – 1:00 PM

         (**Must have completed 2 Beginner Classes and know all the movements.)

 

Improve your physical and mental well-being today.

For registration & information call: 201-634-5359

Class size is limited.  Register early.

Classes taught by Dorene Krause, Accredited Instructor

201-444-9712       dorenekr@optonline.net

Visit www.Taichichih.org for other locations.

 

 

 

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Next Meeting

The next meeting will be Sunday November 18th at Pascack Valley Hospital from 2-4 PM.  We hope you will join us for an open meeting.  There is no set agenda – plenty of time for people to interact and ask questions.  Feel free to bring refreshments if you would like to do so.  This is expected to be our final meeting at Pascack Valley Hospital.  Watch for announcements regarding the location of future meetings.

 

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.