November 2005

 Vol. III, Issue #23

Ribbon          Bergen CFS Support Group Newsletter

Meeting Report

The meeting was held on November 20th.  The focus was on the various associations that we hear about.  With so many groups it is hard to know what each addresses and why we might want to belong to more than one.  Most groups address both CFS and FM issues.

 

Bergen CFS Support Group.  This is our local group headed by Anne Gilmartin.   Anne provides the members with information and materials for coping with CFS on a daily basis.  This monthly newsletter is a product of this group.  The Bergen group has a site at www.yahoogroups.com.  It is here that Anne sends out notices and articles of interest to enrolled members.   Membership is free.  It should be noted that the Bergen group is the largest, most active support group in the state.

 

NJCFSA (New Jersey Chronic Fatigue Syndrome Association)   It is a not-for-profit, tax exempt organization whose purpose is to support patients, disseminate reliable information, and promote research. It sponsors a wide range of activities, including: support groups, a newsletter, statewide conferences, and a hotline.  The membership fee is $25 a year.  Members receive the NJCFSA newsletter four times yearly.  The NJCFSA also maintains a Library and members can borrow books, videos, audio tapes, and DVDs.  There is a nominal fee for the postage ranging from $2.00 to $4.00.  Many of these materials are available solely at this site – particularly coverage of NJCFSA conferences.  Some members have been involved in national activities such as Lobby day which is held in Washington, DC each spring.  The Bergen Newsletter is also posted on the NJCFSA site – www.njcfsa.org .  Four of our local members are currently on the Board of Trustees of the NJCFSA: Anne Gilmartin - Board Member, Nancy Visocki - Treasurer, Judy Machacek - Secretary, and Pat LaRosa - 2nd Vice President.

 

CFIDS Association of America (Chronic Fatigue and Immune Dysfunction Syndrome) This national organization uses this alternate name for the illness.  Annual dues are $35 and members receive The Chronicle four times yearly as well as two issues of the Research Review.  CFIDS is the largest and most charitable organization dedicated to conquering CFS.  This group has worked hard to promote this illness as serious widespread, including involvement in congressional activities of Advocacy and Lobby Day.  There is a wealth of information at the website www.cfids.org. 

 

People with CFS are encouraged to belong to each of the preceding groups.   Membership demonstrates support to those who speak for us.

 

AACFS (American Association for Chronic Fatigue Syndrome) www.aacfs.org   This is a non-profit organization whose members are primarily physicians and scientists interested in research and patient care.  They also review current treatments.  Membership is expensive and while open to individuals, it is a small portion of the membership.  AACFS appears regularly in literature.  It is a reliable source of information fro CFS and FM.  Noted researcher, Nancy Klimas is the president.

The topic of “Good Doctors” comes up regularly at meetings.  There was a request to reprint the form for submitting doctors for inclusion on the NJCFSA” Good Doctors” list.  The form appears at the end of this newsletter.

 

Request

The NJCFSA, as described above, is our parent organization.  It is composed of volunteers who work for all of us.  The group is always in need of new people to help share the load.  Some of the areas would be seeking advertising (local and corporate), posting events, writing articles for the NJCFSA newsletter, and so much more.  There are many jobs that can be done at home without a large energy output.  If you think you might be interested, please contact Pat at the email address at the end of this newsletter.

 

Resources

As you learned at the meeting there are many organizations that reach out to members of the CFS community.  One other area group is the CF Alliance.  They have asked us to share the following announcement with you.

 

CFS, FM, ME & related illnesses Newsletter Now Available!
The CF-Alliance now offers their FREE quarterly full color international Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Fibromyalgia & their related illnesses newsletter via email (text only). Each newsletter offers health news, coping tips, worldwide resources, book reviews, personal stories & contests!  *If you would like to receive the newsletter in text version via EMAIL, please send your name and email address to:
newscfa@yahoo.com

 

NJCFSA Conference

The conference was a huge success.  Reports on the speakers will appear in an upcoming issue of the NJCFSA Newsletter.  Videos will also be available from the NJCFSA Library in the near future.  They are still in the process of being produced but hopefully it will soon be completed and submitted to the Librarian. 

 

Research Study

We received a message that participants are currently being recruited for a Fibromyalgia study at Robert Wood Johnson in New Brunswick.  It involves the use of journaling as a treatment.  Subjects will be between 18 and 70 years with a diagnosis of Fibromyalgia.  It will involve being available from 11 AM until 5 PM on 6 given dates in 2006.  Lunch and parking will be included.  For more information call 732-235-7026

 

Art Show

Some of you may have received this notice from Anne.  It is being repeated here.

 

My latest work is about Healing and the transforming powers of the creative process.
FROM: Scott Massarsky
The [Teaneck] library has four really nice glass cases for my "Sand Forests", and a good amount of wall space to display my ink paintings "The Healings".  Since my work has been traveling from library to library, I have spent a lot of time in libraries creating and writing.  Sometimes I picked a random book and would write starting with the title, and sometimes I wrote from the perspective of my sculptures as they stood upon book cases. I am excited to announce that at 7:45 during the opening reception.  (Wed. Dec. 7th, from 6:30 - 8:30)  I will be speaking about my art and reciting poetry and prose which came out of this process.  If you have any questions feel free to E-mail me: scott massarsky [scottoise@hotmail.com]
Exhibit:  Dec.1 - Dec. 31
Opening reception:  Dec. 7th from 6:30-8:30
Reading :  during opening reception at 7:45
Teaneck Public Library
840 Teaneck Road, Teaneck, NJ 07666
Tel.: (201) 837-4171, Fax: (201) 837-0410
Sand forest and the Twisting Spine
Dec. 1- Dec. 31 Regular Hours: Mon. through Thurs. 9:00 A.M. to 9:00 P.M.; Fri. 9:00 A.M. to

  6:00 P.M.; Sat. 9:00 A.M. to 5:00 P.M. and Sun. 12:30 to 5:30 P.M

Sculpture, ink paintings (The Healings) and writings by Scott Massarsky
Featuring: Queen Anne Lace, Lavender, Milkweed, purple Cone Flower and the twisting turning

                         Vine Tendril
 

Coping

One of the authors, Beth Sorger, spoke at our September meeting.  She discussed “Tapping” and “Pressure points” to control pain in CFS. This article is from http://www.lieye.com/articles/energy%20saving/living_with_cfids.shtml

 

LIVING WITH CHRONIC FATIGUE IMMUNE DYSFUNCTION SYNDROME

by Shari J. Schindel, Psy.D. and Beth R. Sorger, M.S.W.

While the holidays place a burden on virtually everyone, those with chronic illness often pay a higher price when additional stress enters their lives. We with chronic illness and low energy may experience frustration, anger, sadness and disappointment, especially as we remember past holidays when we were well.  Here are some additional suggestions for those with chronic illness to help them cope with and enjoy their holidays:

GIFT GIVING:

·         Plan early to avoid a "time crunch" that could easily send you back to bed.

·         To avoid the crowds, if you are a "crafts" person, try making gifts for your loved ones, such as a personalized ornament or decorative picture frame.

·         If you like to bake, you might find a simple cookie or brownie recipe. Wrapping a batch in decorative colored plastic wrap and ribbons could make a beautiful gift.

·         You might try your hand at making greeting cards using a computer program, an Internet site, or just using good old colored construction paper and markers.

·         Send cards through a site online.

PARTICIPATE IN HOLIDAY EVENTS:

·         Having company come to your home may ease the stress of having to go out to a party or having to drive long distances to see relatives. You can be in the comfort of your own home and be able to sit or lie down if need be.

·         If there is a party that is particularly important for you to attend, try to get as much rest as possible beforehand.

·         Pace yourself throughout the days prior to the party so that you conserve your energy in order to be able to be a part of the festivities.

·         If you have food sensitivities, check with the host before the party about what foods will be served. Offer to bring a dish that you know you can enjoy.

·         If you have pet allergies, be sure to ask the hosts in advance if they have any pets.

·         If you think you may become ill, go anyway for a short time. (If you start to feel ill while at a party, you can leave early.)

·         If you find that the noise, crowds, or lights bother you, ask the host where you may be able to sit or lie down that is out of the way, quiet, and private in order to recuperate.

·         Bring with you all of the things that you might need to help you feel well while you are there. (These might include certain medications, supplements, clothing for warmth, a water bottle, and the like.)

LESS STRENUOUS, LESS STRESSFUL ALTERNATIVE ACTIVITIES:

·         Go out to eat with a few friends or family members and exchange gifts in a restaurant. This will eliminate the planning, hosting, and cleaning up, as well as the long drive, crowds, and the need to stay for an extended period of time at someone else's house.

·         Take a drive, or have someone else drive you through neighborhoods exhibiting colorful holiday lights and displays.

·         You can also note when your favorite holiday television shows are on and invite a few friends or family members over to join you for a casual viewing session.

·         If that still seems like too much, you can curl up with a warm blanket and a mug of hot tea, and watch on your own.)

·         Play some holiday music to add cheer to your season.

·         Due to the unpredictable nature of chronic illness, flexibility is key here. Stay creative with options. If one thing doesn't work out, try to have a back-up plan. For example, If you feel too ill to attend the big family party on a given day, you could possibly arrange a time to call and speak with your loved ones on the phone.

Overall, try to accept where you are now, that you can't do what you used to do, or all that you may wan to do. Not only will it make your holidays less stressful and more manageable, but will make the events and activities you engage in more meaningful. Happy and Healthy Holidays!!

Shari J. Schindel, Psy.D. and Beth R. Sorger, M.S.W. are two beautiful, spirited young women living with Chronic Fatigue Immune Dysfunction Syndrome. Both are also psychotherapists in private practice in Nyack, NY. They specialize in working with people with chronic illness via the telephone and/or office visits. They can be reached at (845) 353-2206/6373 or contact them by e-mail at Psychotherapy22@aol.com

 

 

ALERT!

The CFIDS Association of America has issued an alert regarding funding.  A funding bill (including funds for the NIH and CDC) was defeated on November 17th.  This is considered a good thing because it was a refusal to settle for so little.  A new bill must be approved before December 17th.  Please go to www.cfids.org and click on “Research Funding in Jeopardy” which appears in the left column just below “Grassroots Action Center”.  Just think how loud our voice will be if we join together in this effort.  Your letters can be sent directly from that site using the provided links and letter. If you do not have computer access, please send your elected representatives in Congress a message about increased research funding for CFIDS and other serious conditions.  Below is the sample letter provided by the CFIDS Association of America. 

 

 

Dear

 

As one of your voting constituents, I ask that you sustain sufficient funding levels for medical research and public health research at the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC). The Labor-HHS Appropriations bill presently provides less than a 1% increase for NIH and cuts CDC funding by 4% over last year's levels. At these levels, research on chronic fatigue syndrome (CFS, also known as chronic fatigue and immune dysfunction syndrome or CFIDS) and other serious medical and public health issues will be severely constricted. I urge you to take action to approve a Labor-HHS appropriations bill that provides a $1 billion increase for NIH and at least level funding for CDC. I also ask that you prohibit any across-the-board funding cuts at NIH and CDC as Congress finalizes budget reconciliation legislation.

 

<<Insert a brief statement about how CFIDS has affected your life.>>

 

(then continue with this section)
More than 900,000 American men, women and children of all races and socioeconomic classes have CFIDS. CFIDS is a terribly debilitating and serious illness, with symptoms including incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina), widespread muscle and joint pain, information processing and concentration problems, and numerous other symptoms. Improved understanding is severely hampered by inadequate funding for the critical research needed to find the cause, effective treatments and a cure. The CDC has reported that CFIDS costs the U.S. economy $9.1 billion per year in lost productivity. This year, combined NIH and CDC funding for CFIDS research will barely reach $15 million. I will monitor your support for research funding at NIH and CDC. Please don't erode our nation's research programs by making these funding cuts law.

Sincerely,

(Your Name)

 

Next Meeting                              

The next scheduled meeting will be on Sunday December 18th.  We will be celebrating the season.  Come share your holiday traditions with the group – no matter what holiday you will be celebrating.  Bring something for the sharing table.

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