January 2007

          Vol. IV, Issue #36

Ribbon          

Bergen CFS-FM Support Group Newsletter

Meeting Report

January 21st .  Disability must be the hot topic. We had a large turnout for our speaker from the NJ Office on Disability.  She assured those in attendance that the process has improved in recent years and that the department is not out to deny benefits.  She also refuted the idea that everyone is denied on the first attempt.  She suggested working closely with your doctor to be sure information is properly documented and that the doctors complete the forms in a timely manner.  She added that this is a common reason for delays.  She suggested that applicants should not need to hire an attorney.  If the case does go to further stages, that might be the point to make such a consideration – being aware that the attorney receives a portion of the settlement.  Application interviews are now conducted via telephone.  Following the initial call, an appointment is made for the interview.  This allows the applicant time to gather data.  It was suggested that one might have a friend or family member present to assist with questions and answers, especially if you have cognitive issues.  Anyone interested in disability benefits is encouraged to contact the department for more information

 

CFS Organizations

In recent months, we have explained the functions of some of the CFS organizations.  We would like to remind you that our parent organization is the NJCFSA. It is one of the largest CFS organizations in the country and has a wide range of efforts of support and awareness activities.  On Saturday March 10th, the Spring 2007 Conference will be held.  This year’s conference is a unique partnership with the CFIDS Association of America.  It brings to New Jersey the traveling photo Exhibit, “The Faces of CFS,” which is part of the CFIDS/CDC Awareness campaign.  We hope each of you will consider attending this once in a lifetime event. 

 

We also urge each one of you to join the NJCFSA.  Your $25 membership fee includes the NJCFSA Newsletter which is a printed edition issued three times a year.  It contains information on the on-going efforts to increase CFS awareness, articles of interest, and  coverage of recent conferences. It also entitles you to the use of the lending library.  A membership form can be found at the end of this newsletter. 


Information

http://chronicfatigue.about.com/od/research/p/bptestforfm.htm?nl=1

Can a Simple Blood Pressure Test Diagnose Fibromyalgia?

When you go to the doctor, do you cringe when the nurse pulls out the cuff to take your blood pressure -- because you know it’s going to be painful? I know I do – and I always feel like a wimp because I can’t even tolerate a simple blood pressure test. One nurse actually called me a wimp, but another more kind-hearted nurse taught me to ask for the large cuff, which does significantly reduce the degree of pain I experience.

Apparently, I’m not alone. In a recent study, 69 percent of fibromyalgia patients experienced pain from blood pressure testing. The study entitled, “Sphygmomanometry-Evoked Allodynia – A Simple Bedside Test Indicative of Fibromyalgia: A Multicenter Developmental Study,” was published in the December 2006 issue of the Journal of Clinical Rheumatology.

Terminology: Sphygmomanometry is the long word for the simple and standard blood pressure test which everyone receives at the doctor's office. Allodynia is a condition in which pain results from a stimulus that does not normally evoke pain.

 

Objective: The objective of the study was to determine whether a universally used clinical test -- sphygmomanometry -- would be helpful in identifying FM patients.

 

Method: Researchers studied 20 fibromyalgia patients, 20 rheumatoid arthritis (RA) patients, 20 osteoarthritis (OA) patients and 20 healthy individuals in each of three public rheumatology outpatient services. Each participant was asked to answer the question, “When I take your blood pressure, tell me if the cuff’s pressure brings forth pain.”

Results: While 69 percent of FM patients experienced sphygmomanometry-evoked allodynia, only 10 percent of OA patients, five percent of RA patients and two percent of healthy individuals did. The mean blood pressure value at which FM patients felt pain was lower than the other three groups. FM patients showed a negative correlation between the blood pressure value at which the allodynia developed and the total Fibromyalgia Impact Questionnaire (FIQ) score, number of tender points, and the FIQ visual analog scales for pain intensity and fatigue.

Conclusions: In this study, there was a strong association between pain experienced during blood pressure testing and the diagnosis of FM. Sphygmomanometry is a simple test and a universally standard clinical procedure that may be useful in recognizing FM patients. Based on the results of this study, the researchers suggest looking for other FM features in anyone who has sphygmomanometry-evoked allodynia.

Source: Vargas, Alfonso MD, et al. Sphygmomanometry-Evoked Allodynia – A Simple Bedside Test Indicative of Fibromyalgia: A Multicenter Developmental Study Journal of Clinical Rheumatology. 2006 Dec;12(6):272-4.

From our friends at CF Alliance

Old toys--Freecycle them!  Give and get items from folks in your area all for free through a Yahoo group.  Local group:  http://groups.yahoo.com/group/BergencountyfreecycleTM/

Main org info: http://freecycle.org

 

NJCFSA Spring Conference

Reserve Your Seat NOW! 

New Jersey Chronic Fatigue Syndrome Association

and

CFIDS Association of America

Co-host

NJCFSA Spring Conference & CAA’s “kNOw MORE CFS” Seminar

at

Robert Wood Johnson University Hospital

New Brunswick, New Jersey

March 10, 2007    11am-5:15pm

Featuring:

Kimberly McCleary, President/CEO CFIDS Association of America - CFS National Public Awareness Campaign; overview, video clips of media coverage, and presentations from Jacqueline Niederle, Brian Bernard and other advocates spotlighted in the traveling photo exhibit, “The Faces of CFS.”

Nancy Klimas, MD – “Recent CFS Research Advances”

Alan Porcinki, MD – “Treatment of CFS”

The Traveling Photo Exhibit – The Faces of CFS

 

Conference includes: exhibits, light refreshments, Q&A panel

Register: www.cfids.org / (704) 364-0466 / CFIDS Association of America  kNOw MORE tickets P.O. Box 220398 Charlotte, North Carolina 28222-0398

 

You can download a form at www.njcfsa.org or at www.cfids.org.   NJCFSA and CFIDS of America members will receive an application in the mail.  You can also register online at www.cfids.org with a credit card.  Register now to ensure your space!

 

In the News

http://www.immunesupport.com/ep/EP020407/index.cfm

 

This is news out of the recent International Association of Chronic Fatigue Syndrome Conference which was held in January 2007.   This could be big news. We will watch for more information.

An announcement from ProHealth Founder Rich Carson:

The CFS Name Change Advisory Board - whose combined research and clinical experience totals more than 150 years - met in Florida January 12, and reached a consensus agreement that a new name should be adopted for Chronic Fatigue Syndrome. While it is certain that no name will please all patients, the group feels that the new name they propose will improve the legitimacy of the disease, and remove the stigma of having a disease with 'fatigue' as the primary descriptor. Their report follows.

A group of noted CFS researchers and clinicians met January 12 in Florida to discuss whether 'Chronic Fatigue Syndrome' was an appropriate name for the disease, and to suggest an alternative name if necessary. Patients and CFS clinicians have long held that 'chronic fatigue syndrome' trivializes the serious nature of the disorder, and have called for a change of the name first adopted by the CDC in 1988.

The impetus for assembling the group was the belief that a panel of the world's leading experts could provide legitimacy and scientific credibility to patients seeking a new name.

The committee, called "the CFS Name Change Advisory Board" by its organizer, CFS patient Rich Carson, included Drs. Lucinda Bateman, David Bell, Paul Cheney, Charles Lapp, Nancy Klimas, Anthony Komaroff, Leonard Jason, and Daniel Peterson. Dr. Peterson was unable to attend the meeting, but was consulted via telephone afterward.

Committee members agreed that CFS downplays the severity of the disease and is hurtful to patients, and discussion focused on alternative names. The majority of attention was spent discussing 'ME' - the name first used to describe the illness in an editorial published in The Lancet in 1956 by Sir Donald Acheson, MD. 'ME' has been used in many countries, including Great Britain.

'ME' has historically been used to describe 'Myalgic Encephalomyelitis' (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients. Committee members preferred 'Myalgic Encephalopathy' (nervous system pathology with associated muscle pain), which is also abbreviated 'ME'. This satisfied the researchers that this form of the term 'ME' is diagnostically accurate.

Recent scientific advances point to the usefulness of the ME label, as brain pathology with often painful consequences, especially in muscle, is increasingly documented in patients with this condition.

The group recognized that dropping CFS completely from a new name could cause problems with disability and medical insurance claims, and recommended that 'CFS' should accompany any new name, at least for a period of time. It was acknowledged that CFS currently has some name recognition, though according to the CDC, less than 20 percent of the patients have been diagnosed.

The researchers expressed their belief that the term 'ME/CFS' (or 'CFS/ME') is diagnostically accurate and, unlike CFS, is not pejorative to patients. It was also noted that this move is consistent with events occurring in different countries, such as Canada, where 'CFS' was recently changed to 'ME/CFS'.

In a recent related event, the board of directors of the International Association for CFS (IACFS) voted to recommend that the name of that organization be changed to the IACFS/ME. This motion is currently being voted on by its members, and if approved, the name of that organization will soon be changed.

 

Next Meeting

The next meeting is scheduled for Sunday February 18th   at Pascack Valley Hospital from 2-4 PM.  The meeting will be open for discussion and questions.  We hope everyone will share some coping techniques with the group.

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, Judy Machacek at judymachek@msn.com or Frank Kawa at 201-768-4111


 

NJCFSA         

MEMBERSHIP & CHARITABLE CONTRIBUTION FORM

2007 Annual Membership Dues:    ___ New member   ___ Renewal……….    $     25.00

 

Tax Deductible Contribution:   ___ $25  ___ $50  ___ $100 ___ other………………...…...   $________

 

Apply my contribution to     ___ General Fund                              ___High School Scholarship

                                                                  ___ Research                      ___Medical School Scholarship

 

*The General Fund supports the daily activities of the organization.

*Become a Pillar of NJCFSA: Contribute $100 or more to the general fund.

*Contributions will be gratefully acknowledged in the NJCFSA newsletter unless requested otherwise.

 

               Total Membership Fee and Charitable Contribution Enclosed………       $________

(Please note: members who request reduced dues must return this renewal form to continue membership. Please consider that we need your membership dues to continue to provide ongoing services and benefits to our members. Fill in amount paid above. Please indicate why you request reduced dues on the line below.)

______________________________________________________________________________________

 Member Information & Renewal Date*:

*Do you have a question regarding your renewal date?

The membership renewal date is the month you first joined NJCFSA. The date is circled on your printed label, along with the year you last paid, i.e. 1/2004 means you joined in January and paid in 2004 for the 2004-2005 membership year.

 

Please Circle One:   PATIENT    SUSPECTED PATIENT    FAMILY    FRIEND    OTHER__________

 

New Member (or changes to a current member’s) Information:

 

Name________________________________________________      Phone (____) ___________________

 

Address______________________________________________        County________________________

 

City _____________________________________  State _______    Zip Code______________________

 

Email ___________________________

Are you a member of a local NJCFSA support group?  If so, which county? _________________________

 

To join our Telephone Support Network so that you can speak with other members, please sign below.

 

     

Signature for Telephone Support Network. The NJCFSA library catalog is on our website. Updates to the catalog are printed in our newsletter.

If you still want to receive a printed copy, please check here_________.

 

 

 

We need your help to keep NJCFSA running smoothly.  Listed below are some volunteer opportunities. These can be one time commitments or longer if you are able to help more.  Please check all the ways you would be interested in helping us.

 

_____ Board member of NJCFSA

 

_____Coordinate Volunteers

 

_____Conference Coordinator

 

_____Conference Committee Member

 

_____Coordinate Newsletter

 

_____Write for newsletter

 

_____Help with mailings

 

_____Post posters and notices in your community

 

_____Advertise our conferences and other events

 

_____Ideas for fundraisers

 

_____Help with fundraisers

 

_____Find corporate sponsors for our conferences and other programs

 

_____Grant writing

 

_____Lead a support group in your area

 

_____Begin an informal phone support group

 

_____Other: Please explain _________________________________________

 

 

 

 

Please send form and dues to:

 NJCFSA, Inc. P.O. Box 477, Florham Park, NJ 07932

Phone 888-835-3677 – http://njcfsa.org