June 2006

 Vol. III, Issue #30

Ribbon      Bergen CFS Support Group Newsletter

Meeting Report

At this meeting, we were again pleased to welcome some new faces among the familiar ones.  While we wish there was no need for a support group, it is great to know that people who share our illness are seeking camaraderie.  Hopefully this group will offer them the assistance they desire. 

Once again we planned to show the question and answer section of Dr. Chaney’s presentation from the fall 2005 NJCFSA conference. After some technical difficulties were resolved, it was discovered that the recording sound was too low to be heard in the room.   For those who belong to the NJCFSA, the whole conference coverage will be in the upcoming edition of the newsletter.  The video of the entire Fall 2005 conference is also available to borrow or purchase by going to www.njcfsa.org.

 

We were fortunate to have Tamara Balsamides present at this meeting.  Tamara was a participant in Lobby Day in Washington in May.  She gave us a first hand account of her experience on Capitol Hill interacting with our legislators.  She encouraged those in attendance to consider participating in future Lobby Days.  Tamara reported that the legislators seemed interested in CFS and some were familiar with CFS or knew someone who has CFS.  Tamara further announced that legislators (including the two senators from NJ) requested the renewal of the charter for the CFS Advisory Committee. (See the following two articles for details).

Chronic Fatigue Syndrome Advisory Committee (CFSAC) http://www.hhs.gov/advcomcfs/index.html

The Chronic Fatigue Syndrome Advisory Committee (Inaugurated 9/29/03) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to Chronic Fatigue Syndrome (CFS). These include: factors affecting access and care for persons with CFS; the science and definition of CFS; and broader public health, clinical, research and educational issues related to CFS.

For Your Information      

Letters to Secretary Leavitt Sent by 11 Members of Congress

On Monday, June 12, Senator Harry Reid (D-NV) hand-delivered a letter, signed by 7 other members of the Senate, to Secretary for Health Mike Leavitt. The letter requests that Secretary Leavitt renew the charter for the CFS Advisory Committee and respond to the committee's recommendations. The letter is signed by:

   Sen. Dick Durbin (D-IL)
   Sen. Rick Santorum (R-PA)

   Sen. Mary Landrieu (D-LA)
   Sen. Robert Menendez (D-NJ)
   Sen. Frank Lautenberg (D-NJ)
   Sen. Orrin Hatch (R-UT)
   Sen. Charles Schumer (D-NY)

Sen. Jack Reed (D-RI) also sent a letter to Secretary Leavitt on June 12. Shortly after the Association's May 9 Lobby Day, Rep. Jim Gerlach (R-PA-6) and Sen. Ron Wyden (D-OR) sent letters to the Secretary for Health. This base of Congressional support for our requests not only reinforces the importance of the CFS Advisory Committee, it helps demonstrate the widespread impact of CFS and coordinated action of the CFS community to make its needs known and gain respect.

We are working on the final steps to complete a companion letter from member of the House of Representatives and other individual letters from Senators and Representatives may continue. We’ll keep you posted!

If you haven’t seen our latest awareness campaign update in the June edition of CFIDS Link, please visit http://www.cfids.org/cfidslink/2006/pac3.asp and http://www.cfids.org/cfidslink/2006/june-ftdo.asp. The print ad is on newsstands now, in the health sections of the July issues of Better Homes and Gardens (page 225) and Ladies’ Home Journal (page 125). The ad will also run in the August issues of these magazines.

Thank you for your continued efforts to bring CFS to the attention of lawmakers and the public.

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

 

Research

Music can ease chronic pain

 

Tuesday, June 13, 2006

 

THE QUESTION: No matter the cause, ever-present pain can generate both physical and emotional hurt. Might music offer relief without the side effects common to many pain-relieving medications?

THIS STUDY involved 60 adults who had had back, neck or joint pain not caused by cancer for an average of 6½ years. They were randomly assigned to listen to music through a headset for an hour a day and to record how they felt each day in a diary or to simply keep the diary. Half of the music group picked their own music; the others listened to classical music deemed to be relaxing. After seven days, people who had listened to music reported their pain on average as 20 percent less intense than at the start of the study, compared with reports of an average increase in pain of 2 percent among those who had not listened to music. The music groups also had fewer symptoms of depression and pain-related disability and felt more power over their pain than the others. The type of music the participants listened to made no difference.

 

WHO MAY BE AFFECTED BY THESE FINDINGS? People with chronic pain, which may stem from such things as an injury, osteoarthritis, rheumatoid arthritis or disk problems.

CAVEATS: Findings were based on the participants' assessment of their pain. The study involved a relatively small number of participants.

FIND THIS STUDY: June issue of the Journal of Advanced Nursing; abstract available online at journalofadvancednursing.com (click on "This Issue of JAN," then "Prev" to reach the first part of the June issue).

LEARN MORE about coping with chronic pain at mayoclinic.com (search for "reclaiming") and ninds.nih.gov/disorders.

For Your Information part 2   http://arthritis.about.com/od/driving/a/handicapparking.htm

How To Obtain A Handicapped Parking Permit’

Handicapped Parking Permits - Some Wait Too Long To Apply

Handicapped parking is not a fringe benefit of having a chronic illness such as arthritis. It's a necessity for many people living with pain and disability. It is not uncommon for disabled people to wait longer than they should to apply for a handicapped parking placard for their car which entitles them to park in the designated spots for disabled persons.

Disabled people may not realize at first that they are "eligible". They deny that their condition is debilitating enough to require closer, handicapped parking. They underestimate the benefit of closer parking and how much energy it saves, allowing a disabled person to run errands, shop, go to doctor appointments, travel, or participate in other activities, without wearing themselves out within the first few minutes of arriving at their destination.

Special Parking Privileges

Note: Disabled Veteran (DV) plates are not handicapped plates and may not be used for parking in handicapped parking zones.

Handicapped License Plates

License plates may be issued to one motor vehicle owned, operated, or leased by a disabled person, or owned by a family member who provides transportation to the disabled person.

Handicapped Placards: Permanent and Temporary

To obtain a Permanent Placard:                                                                                                                                

    1. Call MVC at 609.292.6500 or (toll-free in NJ) 888.486.3339 for a handicapped application (ISM/SP-41). [This application is also available from your local police department.  Be sure to tell them it is for a Permanent Placard.]
    2. Complete front side of the application.
    3. Have a physician complete the certification portion on the back.
    4. Mail the completed application to

      Motor Vehicle Commission
      Special Plate Unit
      PO Box 015

      Trenton, NJ 08666-0015

You will be mailed a placard and a Handicapped ID Card.  There is no charge for this placard.

To obtain a Temporary Placard:  Temporary placards may be obtained from the Chief of Police in the customer's municipality. They are only issued to those with a temporary disability and are valid for six months.

1.      Obtain an application (ISM/SP-69) from your local police department

2.      Have a doctor certify the application

3.      Return the completed application to the police department with a $4 fee payable to the Motor Vehicle Commission.

4.      The police department will issue the temporary placard.


Placard Renewals

Placard Replacements

    1. Visit any MVC Agency or call MVC at 609.292.6500 or (toll-free in NJ) 888.486.3339 to request Replacement Form.
    2. Complete form ISM/SP-41. (front side only)
    3. Present it with your handicapped ID card at any agency, or mail both to
      Motor Vehicle Commission
      Special Plate Unit
      PO Box 015
      Trenton, NJ 08666-0015
      4.                                                                                                   There is no fee.

Handicapped Identification Cards

MVC will issue a Handicapped Identification Card at the same time as the plate or placard. A handicapped person may also apply for a Non-Driver Photo ID or for a Non-Driver Handicapped ID. The non-driver ID is issued solely for the purpose of providing identification and is not a license to drive. A handicapped person should apply for a Driver License if s/he wishes to drive.

Exciting Info    It’s Here!   From CFIDSLink@cfids.org

Public Awareness Campaign Update

This full-page ad appears in the July issues of Ladies Home Journal and Better Homes and Gardens, on newsstands by mid June. 

CFS Print Ads Appear in National Magazines

As part of the CFS Public Awareness Campaign, a full-page color print ad about chronic fatigue syndrome appears in the July issues of Ladies’ Home Journal and Better Homes and Gardens, which are on the newsstands this week. These two magazines have a combined readership of more than 20 million, giving us the opportunity to elevate CFS in the minds of millions of Americans.

The ad depicts the impact of CFS and educates people about the symptoms of the illness. It carries both the CDC and the Department of Health and Human Services logos, clearly signaling that CFS is a public health concern. The ad points people to the CDC website where new content about symptoms, diagnosis and treatment are now available. The website is still under construction, and additional content will be added later this summer. Go to www.cdc.gov/cfs to view the content that has been posted so far.

The print ad also introduces the campaign slogan, “Get informed. Get diagnosed. Get help.” This call to action will appear on all the public awareness materials distributed as part of the CFS public awareness campaign, including TV and radio PSAs [public service announcements] and the traveling photo exhibit.

Look for the ad in Ladies Home Journal and Better Homes and Gardens soon on newsstands nationwide.

Press Event Postponed

The press event scheduled for June 7 at the National Press Club has been postponed. Top officials at the Centers for Disease Control and Prevention (CDC) who are responsible for the CFS public awareness campaign have decided to wait to announce new research findings about the prevalence of CFS until after the research has been published in a peer-reviewed journal. While this was an unexpected and last-minute decision, it will allow us to have a major research announcement at a press conference later in the summer that will augment media and public interest in CFS and the campaign.

The press event will be rescheduled to coincide with publication of the new research. Stay tuned to CFIDSLink, and we’ll let you know the new date so you can view portions of the press conference online within hours of the event! We’ll also let you know where and when you can see “The Faces of Chronic Fatigue Syndrome,” the campaign’s wonderful traveling photo exhibit.

Spark CFS Awareness Website Opens Soon

We are putting the final touches on the CFIDS Association’s campaign microsite, and it will go live later in June. This new microsite, which is part of the Association’s main website (www.cfids.org) will provide easy-to-understand, current information on diagnosing and treating CFS. It will also include educational material for the general public, patients, caregivers and health care professionals.

NJCFSA Conference    (reminder)
The date has been confirmed for Sunday, October 22nd.  Judy Machacek is still seeking more volunteers to help on the various committees. If you might be able to help in any way, Please contact Judy at 201-836-7391 or judymachacek@msn.com.  We all know that we manage our illness best when we share the load.

Tasks – Some areas have volunteers but extra help lightens the load.

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

 

Next Meeting

The next scheduled meeting will be on Sunday, September 17th.   We hope to see you.  Have a great summer.  BE WELL.  Keep cool since heat and humidity can aggravate symptoms of CFS and FM.

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.