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Below are articles and information that appeared earlier on the NJCFSA website and has been moved here for reference.
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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.
 
Betty McConnell


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:
 

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.
 

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New Jersey CFS bill S-1028 (A-507) signed into law by Governor.

Gov. Signs CFS Bill (small)
(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.

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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":     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.

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Write Your Congressperson

E-MAIL THEM NOW !!!
 

 



NJCFSA urges all PWC's to write your two U.S. Senators and one Congressperson

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.
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NJCFSA Achievement Award Presented to Dr. Richard Podell
For the text of NJCFSA President Ted Nilson's remarks
please click here.
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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.

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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.

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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.


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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.

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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.

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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.

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NJCFSA Vice President Has Letter Published

by the New York Times


Click here or the thumbnail picture above to read this short article.

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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 .

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