May 2006

Meeting Report

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 2^nd Sunday so we do not conflict with Father’s Day.

Just For Fun

Social Director, Frank Kawa, has set a date (Wednesday May 31^st) for a luncheon at The Westwood Diner Pancake House is on Old Hook Rd, in Westwood, just east of Pascack Valley Hospital.  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 Frank.  He can be reached at 201-768-4111.  You do not need to contact Frank to attend. 

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 Valley Hospital

Beginner classes begin in June:

    Tuesdays - beginning June 6     4:30 or 6:15 pm

    Thursday -  beginning June 15  9:30 am

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.

Research

PO Box 220398 ♦ CHARLOTTE, NC 28222 ♦ PH: 704-365-2343 ♦ FAX: 704-365-9755 ♦ WEB: WWW.CFIDS.ORG

Working to conquer chronic fatigue and immune dysfunction syndrome

April 19, 2006

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

fatigue 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 U.S. Centers for Disease Control and Prevention (CDC) analyzed a large data set from clinical and laboratory experiments involving 227 subjects.

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.

More than a million people in the U.S. have chronic fatigue syndrome (CFS), a debilitating disease that has no cure, can last for many years, and packs a tremendous personal, social and economic toll -- $9 billion a year to the nation and $20,000 per family. It is characterized by severe exhaustion, widespread musculoskeletal pain, cognitive impairments, sleep disturbances and post-exertional relapse of symptoms. CFS occurs most frequently in women ages 40-60 and is as disabling as multiple sclerosis and chronic obstructive pulmonary disease. After nearly 20 years of research, the cause of CFS is not known and treatment is still focused on symptom relief to improve function and quality of life.

The team-driven data analysis was modeled after Duke University’s Critical Assessment of

Microarray 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 June 7-8, 2006 to share their findings.

The CFIDS 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 United States government for protecting the health and safety of all Americans and for providing essential human services, especially for those people who are least able to help themselves. CDC began studying CFS in the late 1980s.

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

http://www.futuremedicine.com/toc/pgs/7/3;jsessionid=oUGJNe_WWei8nGQQPQ

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

The first national CFS public awareness campaign in the United States is about to launch on June 7. The kickoff event at the national press club will introduce the campaign and its television, radio, print and web ads, as well as a national traveling photo exhibit, "The Faces of Chronic Fatigue Syndrome." So what can you do to help spark awareness of CFS and spread the campaign's message like wildfire?

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 20^th edition of Woman’s Day magazine on page 54.  It is not known if it is part of the campaign or an independent source.

NJCFSA Conference    (reminder)
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 22^nd.  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 (judymachacek@msn.com  or 201-836-7391).  We all know that we manage our illness best when we share the load.

Conference Project for Sunday October 22, 2006.

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

Our Newsletter - Reminder – a note to our US postal recipients - (not electronic recipients)

There are 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 pat@larosas.net.   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 newsletter.

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.

Next Meeting

The next scheduled meeting will be on Sunday June 11^th.   Remember - In June the meeting takes place on the 2^nd Sunday not the 3^rd .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 annielaurie617@yahoo.com.  Subscription problems: Nancy Visocki at nvisocki@verizon.net. Editor: Pat LaRosa at pat@larosas.net.