September 2006

 Vol. IV, Issue #32

Ribbon

Bergen CFS Support Group Newsletter

Meeting Report

The first meeting of the season was held on Sunday September 17th.  It was great to welcome some new members.  This meeting also marked the official merger of the Bergen CFS and FM Support Groups.  We welcome all who have joined.

 

At the meeting it was announced that Anne Gilmartin has stepped down as our group leader.  She has been quite ill and needs to take time to recover. We hope Anne will soon be feeling better.  We would like to thank her for her many years of tremendous service and dedication to the Bergen County CFS Support Group.  In her absence, the members who have been on Anne’s planning committee have agreed to serve as a group.  The Bergen Team consists of Frank Kawa, Pat LaRosa, Judy Machacek and Nancy Visocki.   We have been working with Anne for a few years and hope the transition will be smooth.  We are always open to ideas or suggestions for meetings. 

 

Flu Season

At the Fall Conference 2005, the question about flu shots and CFS was raised. The responses are from two of the speakers of that day: Dr. Susan Levine (an immunologist who specializes in CFS) and Dr. Paul Cheney, Director of the Cheney Clinic in North Carolina, who is a pioneering clinical researcher in CFS).

 

            Q. If I have CFS should I get the flu shot?

Dr. Levine: If the patient has a history of getting the flu shot and has not had adverse affects, they could continue getting it; although there is no guarantee that they won’t have a negative reaction.

Dr. Cheney: I agree with Dr. Levine about being on the fence regarding this topic. One must consider the reaction to the vaccine vs. getting the virus. The flu shot is an antigen stimulus that could set off a syndrome in CFS patients. If you have a history of getting the flu shot and are in an environment that gives you a higher probability of being exposed, then you might consider getting the vaccine. If you are more isolated and would not likely be exposed to the virus, then more likely you shouldn’t get the vaccine. The decision is based on patient-to-patient case.”  [Source: NJCFSA Newsletter Spring/Summer 2006]

 

If you are one of those who elect to get a flu shot and find your physician does not have any, you can go to www.findaflushot.com  for a listing of clinics in your area

 

 

 

NJCFSA  Fall Conference

The Bergen Support Group is affiliated with the New Jersey Chronic Fatigue Syndrome Association, Inc. (NJCFSA).  The conferences are presented for both physicians and patients.  We strongly urge you to attend.  You will have the opportunity to hear some extremely CFS educated people and to meet so many attendees who share your experiences. 


N. J. Chronic Fatigue Syndrome Assoc. Inc. and Monmouth Medical Center Present

Chronic Fatigue Syndrome Fall 2006 Conference at Sheraton at Eatontown, NJ
Sunday, October 22, 2006 11:30 AM-5:00 PM


 Dr. Benjamin Natelson * Dr. Lucinda Bateman * Dr. Susan Levine

Trisha Steefel  * Ken Friedman. PhD
 

To register go to www.NJCFSA.org and click on Fall Conference to access a brochure/registration form or use the form included below.  If you have questions call Pat 201-385-4194 as soon as possible.

Program

11:30 –12:45 PM  Registration, Exhibits, and Buffet Lunch (if pre-registered.)

12:45 – 1:00 PM. Introduction & Welcome

1:00 – 1:45 PM Tips and Travails of Treatment

Lucinda Bateman, MD, will share her clinical experiences with exercise, medications, and dietary changes to improve symptoms of CFS patients.

1:45 – 2:30 PM Research Updates in CFS

Susan Levine, MD, will provide updates of ongoing research relating to Herpes virus activity and immune status; and will report on progress in an ongoing NMR Spectroscopy Study in CFS patients.

2:30 – 2:45 PM Break

2:45 – 3:00 PM CFS Advisory Committee Update

Dr. Kenneth J. Friedman, PhD

3:00 – 3:30 PM Some Times You Just Have to Laugh

Trisha Steefel will share her humorous account of what it is like to be an adolescent growing up with CFS and Fibromyalgia.

3:30 – 4:15 PM Research in CFS: What it is and How it is Done

Benjamin Natelson, MD, will explain the difference between seeing a physician for treatment versus participating in clinical research. Behavior of immune-active substances responsible for unrefreshing sleep will be presented as examples on ongoing research.

4:15 – 5:00 PM Questions and Answers

Monmouth Medical Center relies upon faculty in its CME Program to provide educational information that is objective and as unbiased as possible. In accordance with the nationally accepted guidelines, faculty is asked to indicate any commercial relationship that might be perceived as real or apparent conflict of interest. NJCFSA, Inc.

 

General Information

The annual fall conference of the New Jersey Chronic Fatigue Syndrome Association, Inc. is co-sponsored by Monmouth Medical Center. It will provide information on CFS for primary care physicians, specialists in endocrinology, infectious disease immunology, pediatricians, and other health care providers. CFS/CFIDS patients and their families will benefit from up-to-date information on research, and treatment, as well as from an opportunity to network. Please register early, as seating is limited. Make checks payable to NJCFSA, Inc. Your canceled check is your receipt. You will not receive a confirmation letter. In consideration of patients with allergies and chemical sensitivities, this conference is fragrance and smoke free, and pet-free. The registration fee includes buffet lunch and program handouts.

Parking is free and readily available.

Other hotels and Motels in the Area:

Holiday Inn, Tinton Falls 800/HOLIDAY      Red Roof Inn, Tinton Falls 800/943-7663  

Days Inn, Wall Township 800/325-2525

About the Speakers…

Lucinda Bateman, MD, is a general internist who specializes in the treatment of CFS, Fibromyalgia and chronic fatigue. She opened the Fatigue Consultation Clinic in Salt Lake City with the goal of improving the daily life of patients with chronic illness. Dr. Bateman is active in research, education and advocacy and is on the Boards of OFFER (Organization for Fatigue and Fibromyalgia Research), IACFS (International Association of CFS), and CFIDS Association of America.

Susan M. Levine, MD,  is a Board Certified, Infectious Disease and Allergy & Immunology specialist with a primary interest in CFS and FM. She has published many research papers in peer reviewed journals. She also served on the Name Change Committee, reporting to the Surgeon General of the United States. Dr. Levine was a contributing author to “A Consensus Manual for the Primary Care and Management of CFS.”

Benjamin Natelson, MD, is a Professor of Neurosciences at UMDNJ and past director of the New Jersey Chronic Fatigue Syndrome Center. He has published numerous research papers on various aspects of CFS in peer reviewed journals and is the author of several books. Dr. Natelson also treats CFS patients in his practice in at UMDNJ in Newark, NJ.

Trisha Steefel was diagnosed with CFIDS and Fibromyalgia at age 12. Trisha began writing articles as a teenager describing her personal struggle with CFIDS. As a college student, Trisha was active in raising disability awareness on campus and arranging accommodations for individuals with chronic illness. Trisha has completed college and is now able to work full time. She was recently elected to the Board of the NJCFSA.

About CME Credit

This activity has been planned and implemented in accordance with the Essential Areas, Standards and Policies of the Medical Society of New Jersey through the joint sponsorship of Monmouth Medical Center and NJCFSA, Inc. Monmouth Medical Center is accredited by the Medical Society of New Jersey to sponsor continuing medical education for  physicians. Monmouth Medical Center designates this educational activity for a maximum 3.5 AMA PRA Category 1 Credits™. Physicians should claim credit commensurate with the extent of their participation in the activity.

Target audience: Internal Medicine, Infectious Disease, Endocrinology Physicians. Other Healthcare members are

welcome to attend. At the completion of this conference, the participants should be able to: x Review the treatment of patients with CFS and identify problems, which may arise from treatment. x Discuss immune status and the occurrence of Herpes activity in CFS patients. Describe how NMR Spectroscopy can demonstrate brain dysfunction in CFS patients.

x Recognize the impact that CFS and FM can have on an adolescent and how humor can be used as a coping  mechanism. x Explain how participating in research studies differs from seeing a physician for treatment. Discuss how

immune-active substances may impact sleep.

Participants must pre-register for the conference and for CME credit. On the day of the conference, sign in at the registration desk and pick up course materials. Physician’s registration fee is $95.

 

REGISTRATION FORM

CFS Conference 10/22/06  (Call Now to reserve a space!)

Please copy and fill out for each attendee:

Name

Address

City/State/Zip

Daytime Phone #

DATE: Sunday, October 22, 2006

SITE: Sheraton Conference Center Eatontown, New Jersey 

TIME: 11:45 am to 5:00 pm

FEE: $35 per person if pre-registering $45 at the door

DEADLINE: October 8, 2006  Due to the late date, the deadline for receiving your check is extended to October 16th!

REGISTRATION INFO: (888-835-3677)

DIRECTIONS TO SHERATON: Garden State Parkway to Exit 105, Route 36 East to Route 35 South to Industrial Way East. The Sheraton is approximately 5 minutes from the Garden State Parkway Exit.

Physicians must pre-register for CME credits. Call Kathy Fiore at 732- 923-6790. Fee is $95.

$35 per Registration mailed by 10/08/06  $45 per Registration at the door

If you are not an NJCFSA member,

please consider an annual membership

for an additional $25 per person.

Registration(s): #_____ @ $35: $________

Membership(s): #_____ @ $25: $________

TOTAL: $________

Make check payable to “NJCFSA, Inc.”  Your returned check will be your receipt.

Please mail check and this panel to:

NJCFSA Fall Conference 2006

P.O. BOX 444, Cresskill, NJ 07626

For Those Who Desire….

A block of rooms at a discounted rate of $129/night (plus tax) has been reserved at the Sheraton Eatontown Hotel for attendees of the conference. To obtain this rate, call the Sheraton at (732) 542-6500 before 09/15/06, and mention the NJCFSA conference.

 

For Your Information                                                                                          

The above conference is sponsored by the NJCFSA, Inc.  It is a non-profit organization that educated, promotes research, provides support and offers annual scholarships to a graduating High School senior and another to a med student.  We encourage you to join this organization. 

 

The other group that is very powerful in spreading the word about CFS is the CFIDS Association of America (www.cfids.org).  Members receive two publications: the Chronicle and the Research Review.  The CFIDS organization lobbies in Washington on our behalf. 

For our FM members – Most of CFS information applies to people with FM.  For those with FM who seek a site that is more FM centered, it has been suggested that www.Co-Cure.org  is a good source of information along with http://www.fmaware.org (The National Fibromyalgia Association).

 

Literature Review   source:  http://www.cfids.org/cfidslink/2006/application.asp

Patent Application for CFS Diagnostic Test

In mid-August, Dr. John Gow and Dr. Abhijit Chaudhuri of the University of Glasgow submitted an application to the European Patent Office describing a diagnostic tool for CFS. The “invention” (as it's termed in the application) covers “materials and methods for diagnosis and treatment of CFS,” based on genetic biomarkers observed by Gow and Chaudhuri during their extensive genetic research into the illness.

In the application, Gow and Chaudhuri identify a number of genes that are expressed at abnormal levels in CFS patients compared to healthy individuals. In contrast to earlier studies from various sources, the researchers claim to have been able to use the expression patterns of these genes to establish functional models of CFS pathology, explaining some of the symptoms observed in affected individuals. If accurate, this could provide a rational basis not only for diagnosing CFS but also for classifying CFS patients according to the biochemical basis for their symptoms, thereby enabling appropriately targeted therapies.

The researchers carefully point out that, taken alone, the profile generated by this test may not provide an absolute diagnosis of CFS. They suggest that a clinician should also take into account the patient’s physical or psychological symptoms in order to reach a diagnosis. But they state that the gene expression profile this test generates could provide useful data to help confirm or reject a preliminary diagnosis based on physical and psychological symptoms alone. In other words, a test result indicating that one or more of the identified genes is upregulated—meaning that the gene in question shows at least a two-fold increase in expression as compared to unaffected individuals—would provide support for a diagnosis of CFS. Similarly, a normal gene profile could potentially rule out the illness.

According to the patent application, Gow and Chaudhuri believe that CFS is not a genetic disease caused by gene defects but an acquired condition where there’s a shift in the functionality of a select number of genes regulating specific biological activities—specifically those involved in infection and immunity, cell membrane function and cell cycle. Based on the expression patterns they’ve observed, they’ve established a model of affected "hub" and "network" genes, with the hub genes acting as control centers and the network genes acting largely as the implementers. This set of hub and network genes defines the functional shift in the biological systems of patients who continue to have symptoms due to CFS.

Gow and Chaudhuri go on to relate the affected genes to specific sets of CFS symptoms, like recurrent infections and tender lymph nodes, restricted mobility and atopic/allergic reactions, providing clues for targeted treatment options.
 
The time taken to obtain a patent varies substantially from country to country, but European patent applications typically take four years or more to be granted. In the meantime, Gow and Chaudhuri can continue research on the subject, potentially leading to further refinement. Others from around the world are also deeply involved in genetic CFS research. As advances emerge—and as more news surfaces on this patent and the process it describes—the CFIDS Association will keep you posted.

 

Grid 

At the end of this newsletter, you will find two grids.  Your physician has very little time to evaluate you during a visit.  If we start to enumerate symptoms, the odds are that only the first few will be heard.  By providing a tool that summarizes a month on one page, the physician can see the overall situation in a glance.  At the end of each day, you simply make a mark next to the symptoms you experienced that day.  You will find one grid has common symptoms listed. The second one is blank, allowing you to create your own list of symptoms.  It is suggested that you make a copy of your filled in pages before bringing them to the doctor, or ask the office staff to make a copy if the doctor wants to keep it in your file

Thought

The Tiny Frogs

There once was a bunch of tiny frogs, who arranged a running competition.  The goal was to reach the top of a very high tower.  A big crowd had gathered around the tower to see the race and cheer on the contestants.  The race began.  No one in the crowd really believed that the tiny frogs would reach the top of the tower.  You heard statements such as: “Oh, way too difficult!!;” “They will never make it to the top;” or “Not a chance that they will succeed - the tower is too high!”

The tiny frogs began collapsing - one by one…except for those who, in a fresh tempo, were climbing higher and higher.  The crowd continued to yell “It is too difficult!!!”  “No one will make it!”  More tiny frogs got tired and gave up; but ONE continued higher and higher and higher.  This one wouldn’t give up!

At the end everyone else had given up climbing the tower. Except for the one tiny frog, who - after a big effort - was the only one who reached the top!   The other tiny frogs naturally wanted to know how this one frog managed to do it.  A contestant asked the tiny frogs how the one who succeeded had found the strength to reach the goal.  It turned out that the winner was DEAF!!!!

The wisdom of this story is: Never listen to other people’s tendencies to be negative or pessimistic because they take your most wonderful dreams and wishes away from you.  The ones you have in your heart!

Always think of the power words have.  Because everything you hear and read will affect your actions!  Always be positive!  And above all be deaf when people tell you that you can not fulfill your dreams!  Always think - I can do this!

CFS ICD 9 Code

At the meeting one of the items discussed is getting proper documentation of CFS.  The code number that your doctor should be using is: 780.71 – Chronic Fatigue Syndrome.

Schedule for October - December

                                     

October 15, 2006        Tai Chi Chih: Gentle Motion

                                      Dorene Karuse,

Accredited T’ai Chi Chih Teacher

                                     

Healing Touch

Maryann Nystedt,

Accredited Healing Touch Practitioner

 

October 22, 2006        NJCFSA Conference in Eatontown

Sunday                          11:30 am to 5: pm, includes Buffet Lunch

                                      Managing Symptoms and Exploring New Research

 

November 19, 2006     NJ Office of Disability Determinations

                                      How to file for Social Security Disability Benefits

 

December 17, 2006    Holiday Party

Bring family and friends.  You are also welcome to       bring           something for the sharing table – if you are up to it.

                            

Next Meeting

The next scheduled meeting will be on Sunday, October 15th.   We hope to see you. We have two guest speakers scheduled.  One will demonstrate Tai Chi Chih which is a gentle form of Tai Chi suitable for most CFS and FM patients.  The second speaker will present information on Healing Touch.  These are two forms alternative therapies that some people find help them cope with their symptoms.  We do not necessarily endorse every speaker but present the information as a possible coping technique.

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, or Judy Machacek at judymachek@msn.com.

 If you would like to receive the following grids as an attachment, please let me know pat@larosas.net