Vol. III, Issue #23
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
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
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.
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.
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
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: firstname.lastname@example.org
We received a
message that participants are currently being recruited for a
Fibromyalgia study at Robert Wood Johnson in
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 during the opening reception. (Wed. Dec. 7th, from ) 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 [email@example.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
; Sat. and Sun.
Sculpture, ink paintings (The Healings) and
writings by Scott Massarsky
Featuring: Queen Anne Lace, Lavender, Milkweed, purple Cone Flower and the twisting turning
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
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:
· 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.
· 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!!
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 “
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
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
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 firstname.lastname@example.org. Subscription problems: Nancy Visocki at email@example.com. Editor: Pat LaRosa at firstname.lastname@example.org.