The meeting attendance was super and we welcomed several new members. Each person in attendance had a chance to speak. Some asked questions while others offered possible solutions. It is most probable that everyone learned something new. Discussions led us to topics we may explore for meetings next season. There is an interest in disability law and revisiting some of the complementary therapies such as Tai Chi and gentle exercise. The committee will meet to decide on topics. If you have a topic you would like us to consider – either at a meeting or in the newsletter, please let us know. Contact info is at the end of the newsletter.
It seems hard to believe that this meeting year is almost over. The June meeting will be the final one for the season. Remember it will be held on the 2nd Sunday so we do not conflict with Father’s Day.
Just For Fun
Frank Kawa, has set a date (Wednesday May 31st) for a
luncheon at The Westwood Diner Pancake House is on
For Your Information
At the meeting, a few people asked where they can take Tai Chi Chih---the gentle version. Committee member Judy Machacek has provided the following as one place it is available.
Tai Chi Chih at the
Luckow Pavilion of
Beginner classes begin in June:
Tuesdays - beginning June 6 or
Thursday - beginning June 15
Call the Valley Hospital Complementary Medicine Office at 201-634-5359 to register.
Cost is only $50 for 8 weeks.
You can tell them that Judy Machacek referred you to the program!
Similar courses are offered around the county. Please check that it is Tai Chi Chih – which is the gentle form of Tai Chi.
Working to conquer chronic fatigue and immune dysfunction syndrome
CFS Computational Challenge Leads to Bounty of Papers and Findings
CDC’s Large-Scale Study of Chronic Fatigue Syndrome
Points to Underlying Factors, Illness Subtypes
The April issue of the journal Pharmacogenomics includes a special section on chronic
syndrome (CFS), 14 papers authored by experts in diverse fields of
medicine, molecular chemistry, epidemiology, genomics, math,
engineering and physics. Four multidisciplinary teams led by
researchers at the
This intense effort, called the “CFS Computational Challenge” or C3, set out to identify
factors that potentially cause or are related to CFS. The CDC provided the four teams with information that included extensive clinical evaluations, formal sleep laboratory analysis, tests on the blood, and data from the activity of 20,000 genes. They reported their preliminary findings in September 2005 and have continued working to refine them and publish this set of papers.
One of the teams linked CFS with high allostatic load, a term used to describe cumulative
wear on the body resulting from chronic or inadequate adaptation to change. “The outcomes of this study demonstrate that the physiology of people with CFS is not able to adapt to the many challenges and stressors encountered throughout life, such as infection, injury and other adverse childhood events.” said Dr. William C. Reeves, who heads CDC’s CFS research program. “This study also suggests that the pathophysiology of CFS involves hypothalamic pituitary adrenal axis dysfunction.”
The scientists also showed that CFS is quite heterogeneous and encompasses a number of clinically distinct illnesses, each including disabling fatigue. The mechanisms that cause the fatigue in the different CFS groups appear to involve the brain, hormones and the immune system. Data show genetic changes in the glucocorticoid receptor gene and genes related to sympathetic nervous system activity. Research also suggests that the blood cells in people with CFS behave differently, for example, by having a different immune response. According to Dr. Reeves, “These are important findings because they will help to focus our research efforts to identify more effective treatments which ultimately could help alleviate a lot of pain and suffering.”
CDC’s Dr. Suzanne Vernon developed the concept for C3. “We challenged the teams to develop ways to integrate and analyze a wide range of medical data so as to identify those things that could improve the diagnosis, treatment or understanding of CFS,” Dr. Vernon said. “There is a clear biologic basis for CFS and knowing these ‘molecular lesions’ will help us devise effective therapeutic intervention and control strategies.” Dr. Vernon oversees the CDC’s CFS Molecular Epidemiology Program.
a million people in the
team-driven data analysis was modeled after
Data Analysis (CAMDA), an annual challenge that employs cutting-edge
data mining techniques to examine multivariate data sets. The 2006
CAMDA Challenge will also use the CDC’s CFS data set. Teams will meet
at Duke on
Association of America is the nation’s largest and most active
organization dedicated to conquering CFS, also known as chronic fatigue
and immune dysfunction syndrome or CFIDS. The CFIDS Association of
America co-sponsored the September 2005 meeting at Cold Spring Harbor
Laboratory where the teams first presented their analyses.
The Centers for Disease Control and Prevention (CDC) is the
principal agency in the
The journal Pharmacogenomics is a peer-reviewed journal presenting reviews and reports by the researchers and decision-makers closely involved in this rapidly developing area of science. Key objectives are to provide the community with an essential resource for keeping abreast of the latest developments in all areas of this exciting field.
For more information about chronic fatigue syndrome, visit www.cfids.org.
For additional information about the CFS Computational Challenge, including a list of participants, visit http://www.cdc.gov/ncidod/diseases/cfs/meetings/2005_09.htm
For a list of articles in the April issue of Pharmacogenomics visit
For more information about CAMDA, visit http://www.camda.duke.edu/camda06
Exciting Info Just Around the Corner! From CFIDSLink@cfids.org
The CFS Public Awareness Campaign Is About to Ignite
first national CFS public awareness campaign in the
Read on for ways you can be part of the success at http://www.cfids.org/cfidslink/2006/spark.asp.
Note: It has been noted that a short list about CFS symptoms was seen in the June 20th edition of Woman’s Day magazine on page 54. It is not known if it is part of the campaign or an independent source.
Each year the NJCFSA (our parent organization) has presented conferences in the spring and fall of each year. Much to the disappointment of the Board of Trustees, the spring conference did not occur. The singular reason was the lack of a committee to organize the event. The fall conference is now in the planning phase. The date has been confirmed for Sunday October 22nd. Judy Machacek has compiled the following committee list in an effort to share the work. If you might be able to help in any way, Please contact Judy (firstname.lastname@example.org or 201-836-7391). We all know that we manage our illness best when we share the load.
Conference Project for
Registration: of Attendees
Coordinator: to work with Hospital and Hotel, re: room and food arrangements
Brochure: creation/design and distribution
Equipment :coordination of equipment needs for speakers, etc.
Video capture: find inexpensive service or student to DVD record and edit conference
Advertising: Obtain advertisers, and notify newspapers, etc.
Mailing and Distribution: Attach labels and stamps, hand out to other prospective attendees
Exhibitors: Find exhibitors to pay to be at Conference for a fee
CFS Exhibit Support: Work with Pres. Peg Walk to hand out CFS brochures, etc.
Printed Materials: Work with speakers to prepare handouts: and agenda for meeting
Day of Conference Coordinators: help with speakers, registration, etc.
There will be several people on each committee and no one will be asked to work alone or without assistance from me. Thanks to all in advance. Judy
Newsletter - Reminder – a note to our
factors to be considered regarding this newsletter.
One is the fatigue factor for the person who prints and mails
the copies to US mail recipients. The
second is financial. Due to the rising
cost of printing and mailing the monthly newsletter via the US Postal
Service, it has been necessary to re-evaluate this option.
If you have an email address and are currently receiving the
paper version, we would appreciate your emailing info so we can send it
to you by way of the yahoogroups account. If
you don’t have email or a computer, many libraries have computers for
public use and there are a variety of free mail websites available at
libraries. For the few that may not have
access to any email possibility, we are asking that you send stamps to
cover the mailings for the 2006-2007 season. Newsletters
are sent from August through June. We will
continue mailings through June 06. The new
policy takes effect with the August mailing. Stamps
(11 $.39 stamps) can be sent to Anne Gilmartin 211 Bedford Road Dumont,
NJ 07628. This will also free Anne from
having to go to purchase stamps. If you
have any questions or financial concerns, please call Anne at
201-244-5188. You may also contact me at email@example.com. We want to continue
reaching out to you as a support system. Please
consider making the change. Please note:
if we do not receive a response, it will be assumed that you no longer
wish to receive the monthly mailing. We do
hope to hear from you. We have already
heard from a few of you. We hope that each
one of you will contact us to let us know what way to send your
FYI - Revisited
At the recent meeting, it was suggested – especially to the new members - that keeping a journal of symptoms, helps us to keep track of trends and also serves as a tool to help doctors see the symptoms experienced. At the end of this newsletter are two grids you might find helpful. The first one is blank, allowing you to fill in the symptoms you experience. The second one includes symptoms often found in CFS. You may make copies.
The next scheduled meeting will be on Sunday June 11th. Remember - In June the meeting takes place on the 2nd Sunday not the 3rd .We hope to see you.
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.