April 2004

 Issue #7

CFS Blue Ribbon          Bergen CFS Support Group Newsletter

April Meeting

 

The monthly meeting, held on Sunday April 18th   was a lively discussion of the NJCFSA conference held on Saturday 4/17.  It was agreed that all the presenters were very informative, especially Susan Vernon, Ph.D. from the CDC.  Dr. Vernon is the director of the Molecular Epidemiology Program and has been working on mocroarray analysis of genetic abnormalities in the blood of CFS patients.  These studies have proven that there are differences between the “gene expression” in CFS patients as compared to healthy patients.  It is unclear if these differences are the “cause” or the “result” of CFS.  Because of this discovery, research will continue in this area and it is hoped that within five years there will be a clinical diagnostic tool to use in testing and treatment regimes.  Current estimates show that there may be 800,000 cases of CFS with only about 15-20% having been diagnosed.  Understanding the symptoms and finding effective treatment for CFS are important goals for doctors, researchers and patients alike.

 

A detailed explanation of the process of a Neuropsychology exam was presented by Leo Shea, Ph.D. of the NYU School of medicine.  During his many years of evaluation and rehabilitation services he has observed that overall intelligence does not change the onset of CFS, but there are definite changes in attention and concentration.  Speed of processing is clearly reduced, especially when the other senses are overloaded.  Even Neuropsych. testing must be administered with special attention to the fatigue issues of CFS patients.  Therefore, clients should be their own advocates, understand what is expected of them, and help manage the testing process within ones’ individual physical limitations.  Finding a compassionate doctor who can do a fair evaluation will make the process more effective.

 

K. Kimberly Kenney is the President and CEO of the CFIDS Association of America which is located in Charlotte, NC.  She spoke on the importance of Public Advocacy, public information, research, and education.  For 13 years Ms. Kenney has seen great progress in all these areas.  She outlined the improvements in Social Security definitions, research grant funding, physician education, and public awareness.  Declaring that much more needs to be done, Ms. Kenney requested that every one of us write letters to our representatives.  This can be done online at the new interactive website [see “Points to Ponder below].  Public policy is crucial to obtaining money for new research.  Steps are being taken to obtain that funding.  You may make reference to Dr. Vernon’s CDC research when you write to your representatives.  An election year is prime time to as for research funding.

 

In other news, Lon Smith, Jr. is the new President of the NJCFSA, assuming the position Jonathan Sterling had filled when Ted Nielson could no longer continue in that position.  (Thanks to Judy Machacek for this comprehensive article).

 

NJCFSA Spring Conference

 

Judy’s report on the support group meeting provided an excellent synopsis of the conference, so I will limit my remarks to a few other notable moments of the day.

 

With recent news that the CFS name will remain the same for the time being, NJCFSA President Lon Smith had a suggestion for people with chronic fatigue syndrome.  He posed that the disease be referred to as “CFS” – much like “MS”.  If the listener asks the meaning of the initials, the response could start with an explanation including: a serious debilitating disease – which is sometimes known as Chronic Fatigue Syndrome and that the name is very misleading.  This allows for an explanation before inaccurate conclusions on the part of the listener. 

 

Dr. Susan Vernon of the CDC definitely referred to CFS as a “disease”.  Most of us have heard physicians refuse to give it disease status due to a lack of known cause.  It was very satisfying to hear her repeated call is a disease.  It was equally encouraging to learn that the CDC is actively involved in CFS research.  Dr. Vernon gave that agency a “face”- a real person letting us know we are not forgotten.

 

Another speaker at the conference was Sinclair Smith, ScD. Who reported on another research project currently in progress - Neuromuscular function in CFS: Possible Influence of Oral Creatine Ingestion.  Preliminary results indicate that oral creatine may have some beneficial effects but Dr. Smith stated that the results are not yet conclusive enough to be declared a definite benefit.  He cautioned that anyone considering trying creatine should do it under the care and direction of a physician.

                                                                                                                                                                                                                     

Points to Ponder

The CFIDS Association of America has been circulating the following request.  It is reprinted here for those of you who might not be receiving their online newsletters.

Our new Grassroots Action Center is now "live" at http://www.cfids.org. There you'll find ready-made messages you can customize, links to your members of Congress (even if you don't know who they are!), information about candidates for public office and a directory of local and national press people.

Capitol BuildingEach week leading up to May 12, CFIDS Awareness Day, we'll prompt you with new campaigns designed to raise the profile of CFIDS among lawmakers, public health officials and the media. Today's Action Alert! targets members of Congress. Just click on the Capitol Building icon on the left navigational bar at http://www.cfids.org and follow the step-by-step instructions from there.

When our four-week campaign ends you'll still have the opportunity to participate in these efforts, however our notices will not be posted in your monthly CFIDSLink e-newsletter. You can elect to receive Action Alerts! as they are issued by signing up for our Grassroots Action Center listserv at http://capwiz.com/cfids/mlm/.

Flex your advocate muscle and make sure our taxes support a cause we all care about deeply - chronic fatigue and immune dysfunction syndrome.

K. Kimberly (Kenney) McCleary
President  & CEO
The CFIDS Association of
America

CFS Awareness Day is May 12th.  Governor McGreevey has declared May to be Chronic Fatigue Syndrome Awareness Month.  This is the time for each of us to reach out and educate those around us.  The Proclamation reads as follows.

WHEREAS, Chronic fatigue Syndrome(CFS) is a debilitating illness often interrupting the education or employment of patients, complicating their family and social lives, and causing an accumulation of medical expenses; and

WHEREAS, Chronic Fatigue Syndrome is a complex illness that affects many different body systems and is characterized by disabling fatigue, a variety of neurological problems and other physical dysfunctions often sufficient to qualify severely afflicted patients for Social Security Disability and/or private long-term disability insurance benefits; and

WHEREAS, the Center for Disease Control (CDC) has designated CFS as a “serious public health concern,” which affects 800,000 Americans, and the National Institutes of Health (NIH) continue to investigate and document frequency and spread of this syndrome; and

WHEREAS, the State of New Jersey is pleased to join the New Jersey Chronic Fatigue Syndrome Association (NJCFSA, Inc.), a non-profit corporation promoting programs and support groups throughout the State, and with all CFS patients who must struggle daily to cope with the illness and disability, in celebrating a special month devoted to increasing knowledge and understanding about CFS and in supporting valuable research in this State into its causes and cure;

NOW, THEREFORE, I, JAMES E. McGREEVEY, Governor of the State of New Jersey, do hereby proclaim    May 2004

 as

Chronic Fatigue Syndrome Awareness Month 

in New Jersey.                                                                                                                                                                                                                                                                                   

Literature Review

From Current Opinion in Rheumatology

Effectiveness of Exercise in Management of Fibromyalgia

Posted 03/24/2004

Susan E. Gowans; Amy deHueck

for complete article go to: http://www.medscape.com/viewarticle/470554?mpid=26737

Abstract and Introduction

Abstract

Purpose of Review: Exercise was established as an integral part of the nonpharmacological treatment of fibromyalgia approximately 20 years ago. Since then many studies have investigated the effects of exercise-either alone or in combination with other interventions. This review will discuss the benefits of exercise alone and provide practical suggestions on how patients can exercise without causing a long-term exacerbation of their pain.
Recent Findings: Short-term exercise programs for individuals with fibromyalgia have consistently improved physical function, especially physical fitness, and reduced tenderpoint pain. Exercise has also produced improvements in self-efficacy. These effects can persist for periods of up to 2 years but may require participants to continue to exercise. Most exercise studies have examined the effects of moderately intense aerobic exercise. Only in the past 2 years have muscle-strengthening programs, in isolation, been evaluated. To be well tolerated, exercise programs must start at a level just below the capacity of the participants and then progress slowly. Even with these precautions, exercise may still produce tolerable, short-term increases in pain and fatigue that should abate within the first few weeks of exercising.
Summary: Future studies should investigate the possible benefits of low-intensity exercise and test strategies that may enhance long-term compliance with exercise. Individuals with fibromyalgia also need to be able to access community exercise programs that are appropriate for them. This may require community instructors to receive instruction on exercise prescription and progression for individuals with fibromyalgia.

Next Meeting

 

The next meeting is scheduled for Sunday May 16th 2004 at 2 PM at Pascack Valley Hospital.  Our guest speaker will be Jon Sterling who will give us more updates on research, education, and advocacy.  Bring your questions. We hope to have a large audience to show appreciation of his ongoing efforts in Washington, DC and for the NJCFSA.  We hope you will be there.  

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 annie.laurie2@verizon.net.