Helpful Links to CFS Information and Support

Government | Research | Patient Support | Pediatric | Other
 

Federal Government Websites:

Chronic Fatigue Syndrome Advisory Committee (CFSAC):  This committee is comprised of ex-officio members from the Federal Government health agencies, and members of the scientific, medical and patient communities.  The committee coordinates efforts in the government concerning CFIDS and makes recommendations to the Secretary of The Department of Health and Human Services.  The CFSAC permits advocates and members of the public to attend the meetings and give testimony before the committee about issues related to Chronic Fatigue Syndrome

The Center for Disease Control's CFS Home Page. The CDC is a federal government agency concerned with disease processes and prevalence.

Office of Research on Women’s Health, Trans-NIH Working Group: The Website of the Trans-NIH Working Group for Research on Chronic Fatigue Syndrome. Sponsored and maintained by the Office of Research on Women's Health. The Office of Research on Women's Health (ORWH) serves as a focal point for women's health research at the NIH.

Research Oriented Websites:

Co-Cure - an excellent resource for the more wonkish of the CFS patients. Co-cure runs a mailing list to provide subscribers with the latest research updates and reviews, political action, etc. and has an extensive archive of previous postings.

The International Association for Chronic Fatigue Syndrome (IACFS), a non-profit organization of research scientists, physicians, licensed medical healthcare professionals, and other individuals and institutions interested in promoting the stimulation, coordination, and exchange of ideas for CFS research and patient care as well as periodic reviews of current clinical, research and treatment ideas on CFS for the benefit of CFS patients and others. NJCFSA is a member of IACFS. Formerly known as the American Association for Chronic Fatigue Syndrome.

University of Medicine and Dentistry of New Jersey Pain and Fatigue Study Center: The UMDNJ Pain and Fatigue Study Center was created from the “Chronic Fatigue Syndrome Cooperative Research Center,” founded by Benjamin Natelson, MD in 1989. In collaboration with Gudrun Lange, PhD the Pain and Fatigue Study Center was opened in 2005 to continue longstanding NIH-funded clinical research projects and provide comprehensive treatment to those who experience medically unexplained pain and fatigue.

Patient Organizations:

CFIDS Association of America: National CFS organization.

Vermont CFIDS Association, Inc.

P.A.N.D.O.R.A., Inc.,  Florida patient support organization.

Connecticut CFIDS & FM Association, Inc.

Dallas/Fort Worth CFS & FM Support Group

Massachusetts CFIDS Association

Wisconsin CFS Association, Inc.

National Dysautonomia Research Foundation

CF Alliance, New York

National ME/FM Action Network, Canada

The Myalgic Encephalomyelitis Association of Ontario

Pediatric CFS Websites:

CFIDS Association of America Youth Alliance

Dysautonomia Youth Network of America, Inc.

Pediatric CFS Case Definition published by the International Association for CFS/ME in 2007

Miscellaneous Websites:

http://www.phoenix-cfs.org/  An interesting CFS site with info on Treatments, Research, and the experiences of PWC's. Interviews with prominent researchers and patient advocates are frequently posted.

cfsKnowledgeCenter.com Community, Guidance & Practical Information for Those Affected by Chronic Fatigue

http://chronicfatigue.about.com/ - This is a web site for Fibromyalgia and Chronic Fatigue patients run by an online informational web company, About.com.

M.E. Support can be found at www.mesupport.co.uk

The CFS Report - http://www.cfidsreport.com: News and Commentary on Chronic Fatigue Syndrome. Site authored by Craig Maupin.

Immunesupport.com: website of Pro Health, Inc., an online service for CFS/FM patients that also markets supplements and health products. Founded by CFS patient Rich Carson, who generously donates a portion of the profits to CFS research, patient support groups and other CFS causes.

The CF Pen Pal Alliance is a free, international pen pal service for CFIDS/FMS sufferers of all ages as well as their families and caregivers.  For a pen pal application please email them at cfpenpal@yahoo.com 

New Jersey Self Help Group Clearing House: an umbrella organization that helps community support groups organize, grow their membership, and train their staff and support group leaders .

www.afairname.org/advocates.cfm share one goal: to acknowledge the severity of CFS and change the name to reflect this severity.

The Law Offices of Barbara Comerford: specializing in disability law as pertains to CFS patients.

Founded in 1982, the Center is a charitable umbrella organization serving New Jersey's non-profit community. The Center's mission is to build the power of New Jersey's non-profit community by serving as the premier voice and comprehensive resource for and about our sector.



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