January 2007
Vol. IV, Issue #36
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
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
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!
and
CFIDS Association of
Co-host
NJCFSA Spring Conference & CAA’s “kNOw
MORE CFS”
Seminar
at
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
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: |
|
A
group of noted CFS researchers and clinicians met January 12 in 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 '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 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
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
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
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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________________________________________________
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Address______________________________________________
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___________________________
Are you a member of
a local
NJCFSA support group? If so, which county?
_________________________
To join our
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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
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and other
programs
_____Grant writing
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_____Other: Please explain
_________________________________________
Please
send form
and dues to:
NJCFSA,
Inc.
Phone
888-835-3677 – http://njcfsa.org