January 2006

 Vol. III, Issue #25

          Bergen CFS Support Group Newsletter

Meeting Report

The meeting was held on Sunday January 15^th.  The weather was brutally cold and very windy.  However, a small group did manage to gather.  For those who do not know it, our leader, Anne Gilmartin, did a public service announcement about CFS for Cablevision.  She did a wonderful job and managed to get a lot of information into the allowed 22 seconds.  Since many of us had not yet seen it, it was played at the meeting so we could enjoy Anne’s efforts.  She did a wonderful job!

We also welcomed two new members.  We trust they have found what they are seeking and we hope we will see them at future meetings. 

Social Event

Our social director, Frank Kawa has planned another get-together for Wednesday January 25, 2006 at 1 PM at the Westwood Diner/Pancake House on Old Hook Road.  It is a couple of blocks east of Pascack Valley Hospital.  Those who have attended report it is always enjoyable.  It is helpful if you let Fran know you are coming so he can reserve enough space for everyone.  Please contact him at 201-768-4111.

Research

This article is from www.CFIDS.org.  The CFIDS Association of America is the largest 501(c)(3) charitable organization addressing chronic fatigue syndrome.  The organization uses the alternate name, CFIDS (chronic fatigue and immune dysfunction syndrome).  For more information, go to their website.  [Reprint permission requested]

This info was part of Dr. Reeve’s presentation at the NJCFSA Spring 2005 conference. 

CFS Redefined. Again.

Researchers at the Centers for Disease Control and Prevention (CDC) and Emory University have published research supporting a new definition for chronic fatigue syndrome (CFS). Authors led by Dr. William Reeves of CDC propose a more objective approach to the classification of patients than any of the previous definition papers (Holmes, 1988; Fukuda, 1994; with “enhancements” published by Schluderberg, 1991 and Reeves, 2003). Using assessment tools that quantify functional impairment and symptom occurrence, duration and severity, the research team was able to identify CFS patients with precision. The Medical Outcomes Survey Short Form-36 (SF-36), the Checklist Individual Strength (CIS), the Multidimensional Fatigue Inventory (MFI) and the CDC Symptom Inventory were used to document clinical status. Those subjects who met CFS case criteria (Fukuda) had significantly worse impairment, more severe fatigue and more frequent and severe symptoms than other subjects in the study who were ill but did not meet the CFS definition. The authors report that the CFS patients exhibited scores similar to patients with congestive heart failure.

The definitions and criteria for CFS have been scrutinized, critiqued and revised. Most definitions, including those published by groups in England, Australia and Canada, have been written by consensus panels of experts, most of whom see patients in tertiary or referral-based clinics. This latest definition will require validation by other groups and, ultimately, adoption by other investigators in the field before it can be considered to replace the 1994 definition. The study authors propose that this tool-based approach will be easier for clinicians to use in patient care settings and will aid in the comparability of research through the selection of more homogeneous patient cohorts. They also suggest that these tools can be used to monitor the cyclic pattern of the illness and to assess response to specific interventions. The article was published on December 15, 2005 in the open access on-line journal BioMed Central Medicine.

Chronic fatigue syndrome – a clinical empirical approach to its definition and study. BMC Medicine 2005, 3:19; doi:10.1186/1741-7015-3-19. WC Reeves, D Wagner, R Nisenbaum, JF Jones, B Gurbaxani, L Solomon, D Papanicolaou, ER Unger, SD Vernon, C Heim. Article URL:  http://www.biomedcentral.com/content/pdf/1741-7015-3-19.pdf  

Just for Fun

This was found at   http://www.geocities.com/HotSprings/Spa/4225/olympics.html  [Editor’s note: At this site it states that it is from "The National Forum" - Spring 1998.  I cannot confirm that statement.  However, it is appropriate with the Turin Olympics that are just around the corner.]

CFIDS OLYMPICS

1. The 50-foot crawl (land, not water)
2. The pole's fault
3. The parallel blahs
4. The warm-bath-lon
5. The cookie toss
6. The short fall
7. Synchronized swooning
8. The just plain downhill
9. The disc drop
10. The totally shot put
11. The 10-meter nose-dive

--Anonymous PWC Olympian

Research – part 2

Abstract: Lower Serum Zinc in Chronic Fatigue Syndrome: Relationship to Immune Dysfunction and Relevance for Oxidative Stress Status
ImmuneSupport.com

12-19-2005

Source: J Affect Disord. 2005 Dec 7;

Lower serum zinc in Chronic Fatigue Syndrome (CFS): Relationships to immune dysfunctions and relevance for the oxidative stress status in CFS

Maes M, Mihaylova I, De Ruyter M.

M-Care4U Outpatient Clinics, Olmenlaan 9, 2610 Antwerp-Wilrijk, Belgium; Clinical Research Center for Mental Health, Olmenlaan 9, Wilrijk, Belgium; Department of Psychiatry, Vanderbilt University, Nashville TN, USA.

The present study examines serum zinc concentrations in patients with chronic fatigue syndrome (CFS) versus normal volunteers. Serum zinc levels were determined by means of an atomic absorption method. We found that serum zinc was significantly lower in the CFS patients than in the normal controls.

There was a trend toward a significant negative correlation between serum zinc and the severity of CFS and there was a significant and negative correlation between serum zinc and the subjective experience of infection. We found that serum zinc was significantly and negatively correlated to the increase in the alpha2 protein fraction and positively correlated to decreases in the expression of mitogen-induced CD69+ (a T cell activation marker) on CD3+ as well as CD3+CD8+ T cells.

These results show that CFS is accompanied by a low serum zinc status and that the latter is related to signs of inflammation and defects in early T cell activation pathways. Since zinc is a strong anti-oxidant, the present results further support the findings that CFS is accompanied by increased oxidative stress. The results of these reports suggest that some patients with CFS should be treated with specific antioxidants, including zinc supplements.

Things To Do                                                                                                                            Are you looking for information about CFS? Our parent organization, the NJCFSA, maintains a library of books, video tapes, audio tapes, CDs and DVDs for members.  The materials include books by David Bell MD, Richard Podell MD, and Jacob Teitelbaum MD – among other notables. NJCFSA Conference coverage is also available.  It has progressed from audio tapes for early conferences to video tapes and DVDs for more recent events.  The award winning documentary “I Remember Me” by Kin Snyder” is also among the available titles.  A complete list is available at the website.  Borrowers must be members of the NJCFSA.  Go to the website www.njcfsa.org for information on membership and the library. For those who do not have internet access you can contact the Hotline 888-835-3677 during business hours) for information about membership or the library.

Info Revisited                                                                                                                      

From time to time, we will readdress information that might be helpful to our readers.  Some of you might have joined us since this information was first presented. 

The NJ 2-1-1 Partnership is a subsidiary of United Ways of New Jersey, a 501(c)(3) in the State of New Jersey.  The mission is to provide New Jersey residents with a single, easy-to-use system to obtain information on health and human services, volunteer opportunities and giving. More information can be found at the website  www.nj211.org.

What is 2-1-1?

·         An easy-to-remember telephone number that connects callers to the health and human services, community resources and government assistance they need.

·         Available 24/7.

·         Easily accessed by any landline or cell phone.

·         Calls are free and confidential.

·         Multi-lingual/TTY/TTD.

·         Certified Call Specialists make appropriate referrals and monitor outcomes to ensure services are provided.

Where is 2-1-1?

·         Calls are handled throughout New Jersey and local call centers are geographically distributed throughout the State.

·         35% of the U.S. population has 2-1-1 access.

·         Plans are focused on 50% of the U.S. population by the end of 2005 and growing to 100% soon thereafter.

·         For more detail information about nationwide progress on 2-1-1 visit www.211.org.

What types of questions can be answered by 2-1-1 Call Specialists?

While resources that are offered through 2-1-1 vary from community to community, 2-1-1 Call Specialists will provide comprehensive information and referral services to callers about a variety of issues, including:

·         Basic Human Needs Resources: food banks, clothing closets, shelters, rent assistance, utility assistance.

·         Physical and Mental Health Resources: health insurance programs, Medicaid and Medicare, maternal health, Children’s Health Insurance Program, medical information lines, crisis intervention services, support groups, counseling, drug and alcohol intervention and rehabilitation.

·         Work Supports: financial assistance, job training, transportation assistance, education programs.

·         Support for Older Americans and Persons with Disabilities: adult day care, congregate meals, Meals on Wheels, respite care, home health care, transportation, homemaker services.

·         Children, Youth and Family Supports: child care, after school programs, Head Start, family resource centers, summer camps and recreation programs, mentoring, tutoring, protective services.

·         Volunteer opportunities and donations.

Next Meeting                              

The next scheduled meeting will be on Sunday February 19th.  We plan to show Dr. Cheney’s segment of the NJCFSA Fall Conference. 

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.