ARCHIVE PAGE
Below are articles and information that appeared earlier on the
NJCFSA website and has been moved here for reference.
*
The Founding Trustees and Officer's of NJCFSA
from 1995 are pictured below
CFS Public Service Announcement
Congratulations to Winners of NJCFSA Scholarships
for High School Seniors
Apology made by CDC for Diversion of CFS research
money
CFS bill signed into law by Governor !!!!
Social Security Study Participation
NOT recommended by NJCFSA Board
Write your Congressperson
NJCFSA Achievement Award Presented to Dr.
Richard
Podell
Applying for disability benefits
provided
by Barbara B. Comerford, Esq.
NJCFSA went to Washingtion for
LOBBY DAYS 2001
Reach Out to School Nurses
Jon Sterling announced as Chairman of CFIDS Association
of America
Toxic Causes of CFS?
State of the Science Conference
NJCFSA Vice President Has Article Published by
the The Scientist
Presentation of Proceedings
of the NJCFSA Conference on Chronic Fatigue Syndrome 1999
NJCFSA at Physician's Conference 2000
NJCFSA's Mary Ellen McNamara letter published in New York
Times
Also see articles on Disability, CFS Prevalence, etc. on the LINKS
page.
NJCFSA Founding Trustees and Officers*
L to R: Mary E. McNamara, Stephanie Habermann, Joanne
Schults,
Bob Landau, Jon Sterling (at rear), Marti Valetto, Ginny Koenig,
Marsha Sosnowska, Jean Clarkson. * Betty McConnell not shown
above
but is shown below.
Apology by CDC made to NJCFSA for Diverting
CFS Research
money
[ Click thumbnail to see copy of letter - not
easy to read ]
The letter, written to Jonathan B. Sterling, an officer of NJCFSA
goes
as follows:
Dear Mr. Sterling:
The Centers for Disease Control and Prevention (CDC) relies upon the
support of the U.S. Congress, the American people, and organizations
like
the New Jersey CFS Association, Inc. to effectively carry out its many
responsibilities and efforts to fulfill its public health mission.
I personally apologize for the breach of trust that occurred
regarding
the CDC's chronic fatigue syndrome (CFS) resources. We are making
unprecedented, agency-wide changes and improvements to prevent this
type
of incident from happening again (please see enclosure).
I am also reinvigorating our efforts to increase our knowledge about
CFS
and its effects on the lives of those persons who must meet its health
challenge on a daily basis.
CDC is committed to restoring your faith in the integrity of this
agency
and the work that we do. We appreciate your support and look
forward
to strengthening our partnership to improve the health of Americans
nationwide.
Sincerely,
Jeffrey P. Koplan, M.D., M.P.H.
Director
Also enclosed with the letter above was the
following statement:
CDC Response to
Chronic Fatigue Syndrome
The Centers for Disease Control and Prevention (CDC) is a national
public
health agency that relies upon the trust of the U.S. Congress and the
American
people to carry out its many responsibilities. This trust is
crucial
to the agency's effectiveness since its public health programs are
largely
built upon voluntary partnerships and the cooperation of individuals,
communities,
health care practitioners and researchers. As a reflection of
that
foundation of trust, the agency's three core values are accountability,
respect, and integrity.
In August 1998, in response to allegations that funds had been
misspent,
the Director of CDC requested the Department of Health and Human
Services
Office of the Inspector General (OIG) to audit costs charged to the
Chronic
Fatigue Syndrome (CFS) Program. The audit and resulting internal
report, "Audit of Costs Charged to the Chronic Fatigue Syndrome Program
at the Centers for Disease Control and Prevention," concluded that CDC
mismanaged CFS resources and provided misleading information to
Congress.
Resources intended for CFS were actually used for measles, polio and
other
disease areas.
This was a breach of the CDC's solemn trust and is in direct
conflict
with its core values. CDC is committed to restoring
the trust of Congress and its state and national public health partners
and is moving aggressively to make the specific and agency-wide changes
necessary to prevent such mismanagement in the future.
Concurrently,,
the agency is reinvigorating its efforts to better understand CFS and
its
effects on the lives of those persons who must meet this health
challenge
on a daily basis.
The findings of this report have been taken very seriously. To
demonstrate and reinforce CDC's personal commitment to addressing this
matter, unprecedented actions are being taken that not only include all
of the recommendations of the OIG, but go well beyond those
recommendations.
These actions include:
- A public apology to Congress from the Director of CDC and other
senior
staff;
- Restoration over the next four years of CFS program funds spent
on
other
public health issues;
- Probationary status for the offending Division with regard to
budget
execution
until January 2001;
- Separate apportionment of CFS funds from the Office of Management
and
Budget
with the accompanying requirement that an operating plan be submitted
to
Congress. Accordingly, quarterly reports will be submitted to
Congress
regarding the budgetary execution of this plan;
- Mandatory training for all CDC managers and staff responsible for
budget
and accounting functions to ensure complete knowledge of statutory and
regulatory requirements for the use of Federal funds;
- Establishment of an internal review capacity to conduct regular
assessments
of CDC's fiscal policies, procedures, practices, and controls;
- Development and implementation of a new system for allocation of
CDC-wide
indirect program support costs; and
- Reinvigoration of CDC's efforts to better understand CFS by
establishing
a long-term research and program agenda with in-depth advice from the
research
and advocacy community.
CDC is a valued agency with a long and distinguished history of service
to the American people. Corrective actions, such as the ones
described
above, are the most far reaching in the half century history of
CDC.
Staff from every CDC program will know of these actions.
We have learned a valuable lesson through this experience, which
will
not be forgotten as we continue our work to protect the public's
health.
Top of this page
New Jersey CFS bill S-1028 (A-507) signed
into law
by Governor.
(Click here or on small thumb nail picture
above for larger version)
On April 16, 1999 at 3:00 P.M. the CFS bill
was
signed into law by Governor Christine Todd Whitman. This bill directs the New Jersey Department
of Health to create a program of public awareness and medical education
for Chronic Fatigue Syndrome. It appropriates $95,000 for the
preparation
of a manual containing information about the clinical significance,
diagnosis,
treatment and management of CFS. The manual will be made
available
to all health professionals in the state of New Jersey.
To see a complete copy of the bill, click
here.
Top of this page
Social Security Study
The CFS Cooperative Research
Center of East Orange asked NJCFSA for comments on its study on
disability
in CFS which it is conducting for the Social Security
Administration.
The NJCFSA Board approved the comments and suggestions submitted by
members
of the research committee and forwarded them to the Center. The
Board
took note that the Center's study may eventually have serious impact on
the disability benefit process. Since NJCFSA feels that the
Center's
study has many limitations, especially in its view of CFS, we
cannot
at this time recommend that our members participate. NJCFSA has
canceled
appearances at our support group meetings by Center representatives who
wish to encourage patient participation in this particular study.
They are quite welcome to come speak on other research studies they are
conducting.
On December 9, 1998 the NJCFSA Research Committee,
upon the unanimous approval of the NJCFSA Board of Trustees, sent its
comments
to the Center. In the cover letter, after thanking the Center for
the opportunity to comment on its study on disability in CFS, we
remarked:
"In general, we feel that the Technical Approach (this is the
title of the Center's proposal) is too narrow in its view of the
possible
factors that lead to disability in CFS. We suggest that your four
factor model should be expanded to an eight factor model that would
include
cognitive impairment, orthostatic intolerance, chemical intolerance,
infectious
and immune variables, chronic pain, fatigue-ability, illness pattern
and
symptom aggregation.
The proposal also fails to meet the collaborative
efforts required in SSA's solicitation for this RFP (Request for
Proposal)
which would enlist "the consultation of other academic and practice
experts
in the field." It fails to meet the "state-of-the-art"
requirement
in the solicitation; 92% of the research citations on which your
hypothesis
is based is referenced to research completed on or before 1996.
Additionally,
there are very few references citing other FCEs (Functional Capacity
Examinations)
completed for SSA.
We also strongly feel that the limitations of the
study need to be noted. One study involving 100 patients,
conducted
at one site by one group of investigators would need to be replicated
by
further studies by other groups of investigators, with larger groups of
patients and in other parts of the country before guidelines for
disability
determinations in CFS could be developed.
Our specific comments on various sections of the
study followed the cover letter and dealt with many issues. A few
of those are included in a fax to Carolyn Kiefer of SSA. We believe
that
it is not possible to derive "definitive" disability markers for CFS
from
this study because":
- The "n" is small: 50 patients, 50 controls.
- Study is based on neuro-cognitive measures of disability only,
not
pain,
flu-like symptoms, othostatic intolerance or symptom aggregation that
constitute
or compound functional impairment in CFS.
- Single site with geographically limited patient draw.
- Single investigator with no means of assessing inter-investigator
reliability.
- Patients must be well enough to travel to the center for
evaluation
(and
must be able to self-fund travel), skewing study results toward more
ambulatory
and/or more financially stable patients.
- Patients evaluated at one point in time only; due to variability
of
symptoms
and remitting/relapsing pattern of the illness, it will be difficult to
generealize patient's performance to even their own ability to function
over time, let alone generalizing more broadly to the patient
population
as a whole.
- No provision to follow up with patient after the evaluation to
assess
impact
on cognitive or physical function the next day(s) after effort is made
to travel to the center, participate in the evaluation and return home.
- Instrument selected (DIS) will overestimate morbidity of
depression
among
patients.
- Investigators may, even inadvertently, give guidance to patients
that
lead
them to push beyond their everyday limits.
Written acknowledgment of the study's limitations as
described above should be issued with the publication of the study and
with any subsequent promulgation of study results within the disability
or scientific communities.
NJCFSA believes that, as presently constructed, the study could lead
to a narrowing of the definition of CFS in terms of disability
determinations.
Top of this page
Write Your Congressperson
E-MAIL THEM NOW !!!
NJCFSA urges all PWC's to write your two U.S. Senators and one
Congressperson
- describing your medical and financial condition
- asking for more government commitment (funding) to do research
and
prevalence
studies.
The address for your Senators is The Honorable (Senator's name), United
States Senate, Washington D.C. 20510. The address for your
Congressperson
is The Honorable (Congressperson's name), United States House of
Representatives,
Washington D.C. 20515. New Jersey's Senators are Jon Corzine and Robert
Torricelli. You can locate all your representatives by putting in your
zip code above and hitting search. Handwritten letters are best. Mail
your
letters so they arrive the week of May 13th. Here is a sample letter,
courtesy
of the CFIDS Activation Network.
Dear Senator_______(or Congressperson________):
I have been debilitated (or disabled) by CFIDS for ___years.
Before
I became ill, I was a ________. Now I can't work and even simple tasks
like ________have become difficult. Recent advances in CFIDS study (now
studied by NIAID and John Hopkins University) are very promising but
increased
government commitment is needed if those who suffer from CFIDS are to
regain
health. Therefore I urge you to support legislation increasing CFIDS
funding,
specifically: an earmark of $1 million from the Secretary of Health's
discretionary
budget for the Dept. of Health and Human Services to continue the work
of the CFS Interagency Coordinating Committee; an increase of $10
million
at the National Institutes of Health for CFS research; an increase of
$5
million at the Centers of Disease Control for CFIDS surveillance
projects.
Urge friends and family to write too!
If you prefer to call, your representative's phone number is
available
from the Capital Switchboard at 202/224-3121.
Top of this page
NJCFSA Achievement Award Presented to
Dr. Richard Podell
For the text of NJCFSA President Ted Nilson's remarks
please click here.
*
Proving The CFS Disability Case
An excellent and extensive article on applying for disability
benefits
provided by Barbara B. Comerford, Esq.
Click here for the the full read.
NJCFSA went to Washingtion for LOBBY
DAYS
June 21 and 22nd, 2001
Six NJCFSA board members attended -
Jackie Niederle, Ted Nilson, Lon Smith, and Jon Sterling from NJ, and
Eileen Holderman and Suellen Tritt from NY state. (See the picture
below).
The New Jersey delegation visited:
Rep. Steve Rothman (D-9th district);
Leslie McCollum, Legislative Assistant of Rep. Marge Roukema (R-5th
district);
Rep. Rodney Frelinghuysen (R-11th) and his aide Kim Champi;
Adam Phelps, health aide to Senator Robert Torricelli;
Lauren Flejzor, aide to Senator Jon Corzine, who greeted us briefly
in his office;
Chris Davis, aide to Rep. Rush Holt (D-12th).
The main thrust of the visits were to ask for their help in urging
Secretary
of Health Tommy Thompson:
-to allot an additional $10 million to the NIH for CFS research,
as recommended by the participants of the State of the Science
conference
in October, 2000;
-accelerate the process of converting the CFS Coordinating Committee
to a full federal advisory committee;
-restore funding for the physician's education training curriculum
at the Health Resource Service Administration developed by the CFIDS
Association
of America and the Area Health Education Centers.
Here is a picture of some of the participants:
Left to Right - Lon Smith, NJCFSA trustee; Ted Nilson, president;
Rodney
Frelinghuysen, congressman - 11th district; Kim Kenney, CEO of CFIDS
Association
of America; Jackie Niederle, NJCFSA Trustee.
Top of this page
Reach Out to School Nurses
In June, the CFIDS Association of America launched a project to
increase awareness of CFS among school nurses. Because school nurses
observe
the course of students' and teachers' illnesses, they are in a position
to encourage the early diagnosis of CFS and to support families in
coping
with this chronic illness.
We're providing an introductory letter to nurses and Dr. David
Bell's
School Nurse News article on pediatric CFS on the youth website (www.cfids.org/youth/nurses/index.html).
We're asking those concerned about CFS to print the materials and
either
bring or mail them to their local school nurses.
For more information about this project, please contact Terri
Lupton,
BSS, RN, Coordinator for Educational Opportunities (tlupton@cfids.org),
or Rebecca Moore c/o the Association's youth program (youth@cfids.org).
To request a free print copy of the materials, please send a
self-addressed,
stamped envelope to School Nurse Project, The CFIDS Association of
America,
PO Box 220398, Charlotte, NC 28222-0398.
Top of this page
Jon Sterling Chairman of CFIDS
Association of
America
We are proud to announce that our own Jonathan B. Sterling has
accepted the position as the new Chairman of the Board of The CFIDS
Association
of America. Jon is a CFIDS patient and past president of the New Jersey
CFS Association (NJCFSA). He joined the CFIDS Association's Board in
2000,
serving as Treasurer. He is currently the non-federal co-chair of the
Department
of Health and Human Services' Chronic Fatigue Syndrome coordinating
Committee
(CFSCC) as well as the treasurer of NJCFSA. We all wish Jon well
with his new responsibilities and thank him for his exceptional service
to the CFS community.
Jon Sterling presenting the NJCFSA Achievement Award to Dr. Joseph
John at the Spring 2001 Conference. Tapes of that
conference
are now available for sale. Copies of
the
video tapes are available from the NJCFSA Lending Library.
Top of this page
Do you use any of these products?
One of the most widely used insecticides is being removed from
store shelves. The EPA has pulled the active ingredient (chlorpyrifos,
a.k.a. Dursban and Lorsban) off the market. According
to
the Natural Resourses Defense Council, "manufacturers agreed to stop
using
chlorpyrifos in more than 800 products such as Ortho lawn
spray,
Hartz
yard and kennel flea spray, and some varieties of Raid."
People have complained of chronic headaches, memory disturbances,
blurred
vision, etc. Research showed brain damage in the fetuses of dosed
laboratory
animals. You may want to check around your home
and/or
work space for products containing these substances. This May (2000), singer Olivia
Newton-John and actress
Kelly Preston spoke to members of Congress
about the estimated 3 to 10 gallons of hazardous
materials
in each home in this country. Both stars are board members of the
Children's
Health Environmental Coalition which argues that the 2 billion
pounds of pesticides used each year in the U.S. put children at
risk for disease. Olivia Newton-John and Kelly Preston have also
produced
a 15 minute video
on how to protect your children by checking out your own home.
Also,
click the following link for an article on possible Toxic
Causes of CFS by British CFS doctor, Sarah Myhill, M.D.
Top of this page
State of the Science Conference
Video Available for Sale
Video tapes of the State of the Science
Conference,
October 23 and 24, 2000, in Washington DC, are now available for sale.
The conference was sponsored by the Department of Health and Human
Services
CFS Coordinating Committee. The set consists of two videotapes, Day 1
and
Day 2. Copies of
the
video tapes are available from the NJCFSA Lending Library.
NJCFSA Vice President Has Article Published
by
the The Scientist
To read the article
click
here
Presentation of inaugural edition of the
Proceedings of the NJCFSA Conference on Chronic Fatigue Syndrome
1999
to Monmouth Medical Center on August 29, 2000.
Click here or on picture below for full
size picture.
Left to Right: Jon Sterling, Treasurer, NJCFSA; Ted Nilson,
President, NJCFSA; Mary E. McNamara, Vice President and Proceedings
Editor; Dr. Frank Vozos, Executive Director, Monmouth Medical Center
(MMC);
Dr. R. Sivaprasad, Director, Infectious Disease, MMC; and Frederic
Pachman,
Director, Altschul Medical Library, MMC.
Top of this page
*
NJCFSA at
Physician's
Conference 2000
(Click here or on picture above for full size
picture)
Pictured above, left to right, sitting at the NJCFSA display
table are NJCFSA Vice President Mary Ellen McNamara, Dr. Richard Podell
and NJCFSA President Ted Nilson.
Many thanks to Ellen McNamara and Betty McConnell, who worked together
to take advantage of this unique opportunity to educate physicians in
New
Jersey. Dr. Richard Podell and Dr. Susan Levine generously
donated
their valuable time by speaking to other doctors who visited the NJCFSA
display table. Also appearing with Betty and Ellen at various
times
during the convention were Ted Nilson and Jon Sterling.
Top of this page
NJCFSA Vice President Has Letter Published
by the New York Times
Click here or the thumbnail picture above to
read this short article.
Top of this page
CFS Public Service Announcement
The CFIDS Association of America has produced a public service
announcement (PSA) on the subject of CFS. Look for it on your
local TV station or
to see a preview with pictures click
here .
Top of this page
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