October 2006

          Vol. IV, Issue #33

Ribbon          Bergen CFS-FM Support Group Newsletter

Meeting Report

 

The Bergen Group continues to grow.  It is wonderful to know that people are seeking help and that our meeting postings are being discovered.  The October meeting featured guest presentations of two alternative therapies for CFS and FM.

 

Dorene Krause is an accredited Tai Chi Chih instructor.  This form of Tai Chi is particularly gentle and many CFS and FM patients find it very helpful.  Dorene had the members try several moves to get the feel for this method of “movement”.  Dorene teaches classes through The Valley Hospital.  The one hour classes cost $50 for an eight week session.  They are held at the Luckow Pavilion of Valley Hospital on Winters Avenue in Paramus - near Paramus Park Mall.  For registration and information, call Valley Hospital at 201-634-5359. 

Classes scheduled at this time:

            Beginner – starting Tues.  Nov. 14th at 4:30 PM

                                              Tues.  Nov. 14th at 6:15 PM

                                              Thurs. Nov. 16th at 9:30 AM

            Beyond Beginner    Thurs. Nov. 16th at 4:15 PM

 

Marianne Nystedt is an accredited Healing Touch practitioner.  She demonstrated the non-touch procedure that is said to sweep away the particles that are interfering in normal body activity.  Pairs of members then tried it on each other.  Marianne can be reached at 201-244-6864.

 

Those in attendance agreed that non-invasive methods, that do not require the ingestion of additional meds or supplements might be worth trying.     

 

NJCFSA Fall Conference

The Conference was a huge success due to the efforts of Judy Machacek and her committee.  It was wonderful to see so many members of the Bergen group in attendance.  Coverage of the conference will be included in an upcoming issue of the NJCFSA Newsletter.  That will most likely be published during the winter.  A DVD version will also be available from the NJCFSA library and is available to NJCFSA members.  Thanks to Judy for an incredible job and also to the members of her committee.  Many of those involved are members of the Bergen Support Group.  

 

CFS Awareness

By the time this newsletter is sent, the National Press conference on CFS Awareness will have taken place.  The following article from www.cfids.org explains the CFS Advisory Committee and its activities. It has the potential to have a major effect on CFS acceptance and research. 

CFS Advisory Committee to Meet Nov. 20-21, 2006

The Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC) will meet next on Nov. 20-21, 2006 in Washington, D.C. The official announcement for the meeting is copied below.
For more information about the CFSAC visit http://www.cfids.org/advocacy/CFSAC.asp. The CFIDS Association's meeting reports, dating back to 2003, are available at http://www.cfids.org/advocacy/meeting-updates.asp.

[Federal Register: September 28, 2006 (Volume 71, Number 188)]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr28se06-66]                        
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DEPARTMENT OF HEALTH AND HUMAN SERVICES
Meeting of the Chronic Fatigue Syndrome Advisory Committee

AGENCY: Department of Health and Human Services, Office of the
Secretary, Office of Public Health and Science.

ACTION: Notice.
-----------------------------------------------------------------------
SUMMARY: As stipulated in the Federal Advisory Committee Act, the U.S.
Department of Health and Human Services is hereby giving notice that
the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a
meeting. The meeting is open to the public.

DATES: The meeting will be held on Monday and Tuesday, November 20-21,
2006
from 9 a.m. to 5 p.m. each day.

ADDRESSES: Department of Health and Human Services; Room 800 Hubert H.
Humphrey Building
; 200 Independence Avenue, SW., Washington, DC 20201.

FOR FURTHER INFORMATION CONTACT: CDR John Eckert; Acting Executive
Secretary, Chronic Fatigue Syndrome Advisory Committee; Department of
Health and Human Services; 200 Independence

Avenue, SW., Room 716G; Washington, DC 20201; (202) 690-7694.

SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002
to advise, consult with, and make recommendations to the Secretary
through the Assistant Secretary for Health, on a broad range of topics
including (1) The current state of knowledge and research about the
epidemiology and risk factors relating to chronic fatigue syndrome, and
identifying potential opportunities in these areas; (2) current and
proposed diagnosis and treatment methods for chronic fatigue syndrome;
and (3) development and implementation of programs to inform the
public, health care professionals, and the biomedical, academic, and
research communities about chronic fatigue syndrome advances.
    The agenda for this meeting is being developed and will be posed on
the CFSAC Web site, http://www.hhs.gov/advcomcfs, when it is finalized.

    Public attendance at the meeting is limited to space available.
Individuals must provide a photo ID for entry into the meeting.
Individuals who plan to attend and need special assistance, such as
sign language interpretation or other reasonable accommodations, should
notify the designated contact person. Members of the public will have
the opportunity to provide comments at the meeting. Pre-registration is
required for public comment by November 13, 2006. Any individual who
wishes to participate in the public comment session should call the
telephone number listed in the contact information to register. Public
comment will be limited to five minutes per speaker. Any member of the
public who wishes to have printed material distributed to CFSAC members
should submit materials to the Acting Executive Secretary, CFSAC, whose
contact information is listed above prior to the close of business
November 13, 2006.

Dated: September 25, 2006.
CDR John J. Eckert,
Acting Executive Secretary, Chronic Fatigue Syndrome Advisory
Committee.
[FR Doc. E6-15924 Filed 9-27-06; 8:45 am]
BILLING CODE 4150-42-P

Coping

This article was printed in the November 2005 issue of this newsletter.  We have many new members who might benefit from it, so it is being repeated.  I am sure many of us need refreshers on coping.

 

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 want 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

 

For Your Information  

1) One of our members wishes to share information about a site she has found.  She writes “The administrator who runs a cfids message board (www.cfs-info.com) has asked me to invite others from the group to join the board.  We are a small but friendly group who all share cfids in common, and have made great friends on these boards.  This would of course be an adjunct to our group.”  [As an organization, the Bergen Support Group does not necessarily endorse it, but offers it as a sharing from a fellow member.]

 

2) It has also come to our attention that November is Gluten Awareness Month.  People with CFS often have overlapping symptoms as described in the following article from www.cfids.org.

GASTROINTESTINAL PROBLEMS AND CHRONIC FATIGUE SYNDROME

Many persons with chronic fatigue and immune dysfunction syndrome (CFIDS) report gastrointestinal problems, including nausea, abdominal cramping, constipation, diarrhea and/or alternating constipation and diarrhea. When these symptoms are present concurrently, they meet the diagnostic criteria for irritable bowel syndrome (IBS).

IBS is not an inflammatory disease, such as ulcerative colitis, and therefore does not produce serious, long-term effects. It is, however, a painful disorder that can limit activities when symptoms are severe. The cause of IBS is unknown, but is thought to be triggered by food sensitivities and/or stress. A first line of treatment consists of diet modification after determining problem-causing foods.

Problem foods can often be determined by following an elimination diet. An elimination, or challenge diet, is used to identify foods and food additives that may be causing symptoms. When symptoms subside for at least 48 hours, then foods can be reintroduced into the diet slowly, one at a time every several days, to observe for reappearance of symptoms. The diet begins by eliminating numerous foods, including (but not limited to):

Multiple treatment options for IBS are available and include several types of medications: antidiarrheals, antispasmodics, fiber supplements, acid suppressors, antidepressants and a relatively new medication (Zelnorm) for people with chronic constipation as their primary bowel symptom. Stress management, either alone in combined with SSRI antidepressants, has been shown to be helpful for a number of people. Alternative therapies, such as yoga, tai chi or acupuncture, have been reported to relieve symptoms for some persons.

Weight loss can be a side effect of any gastrointestinal (GI) disorder, as the person avoids eating to decrease GI symptoms. When the diet is severely restricted, without attention to nutritional needs, the person can become malnourished. Large meals often make symptoms worse and for that reason eating several small meals throughout the day can be helpful. A conversation with one's primary health care provider is important to help control symptoms. And a visit with a registered dietitian to learn how to meet nutritional needs and manage symptoms can be beneficial.

Weight gain is reported as an unfavorable outcome of CFIDS for a significant number of people with the illness. This appears, in most cases, to be the result of decreased activity rather than increased calorie intake and it may be accelerated by changes in metabolism and brain chemistry brought on by the illness. Other factors have been implicated, such as thyroid dysfunction and medication side effects. Antidepressants and steroids are particularly problematic. Researchers have begun looking into physical exercise and its effect on CFIDS. Finding ways to comfortably increase activity within the capabilities of the person with CFIDS is a challenge for the individual, as well as care providers. A consult with a rehabilitation specialist, such as a physical or occupational therapist, may provide a highly personalized activity plan that is achievable and improves function.

Dietary supplements that are intended for weight loss or weight gain have been known to cause GI symptoms in some people, particularly diarrhea. These need to be taken with care to prevent a worsening of symptoms. And many other nutritional supplements, purchased over-the-counter, may come with fantastic claims for symptom relief or a cure, but may not be well studied or tested and need to be taken with caution. It is also wise that a person consult their physician, pharmacist or dietitian before consuming these products.

Gastrointestinal symptoms are frequently reported in children with CFIDS, and may signal the onset of the illness. Parents will want to be alert for other symptoms that may indicate a diagnosis of CFIDS. 

Next Meeting

The next scheduled meeting will be on Sunday, November 19th.  Many of our members have asked for information on the disability process which can be extremely challenging.  While not everyone is currently seeking disability, it could be useful information for all of us.  The remainder of the meeting will be devoted to open discussion.  We look forward to seeing you.  As always, spouses and friends are welcome.

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