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Links for CFS/ME

Organizations and Services

International Association for CFS/ME

2014 IACFS/ME Primer for Clinical Practitioners

Solve ME/CFS Initiative (formerly called The CFIDS Association of America)

The National CFIDS Foundation, Inc.

The CDC CFS webpage

Massachusetts CFIDS/ME & FM Association

New Jersey ME/CFS Association, Inc.

Organization for Fatigue & Fibromyalgia Education & Research (OFFER)

Patient Alliance for Neuro-endocrine-immune Disorders Organization for Research and Advocacy (PANDORA)

Rocky Mountain CFS/ME & FM Association

Wisconsin ME/CFS Association, Inc.

ME-CFSCommunity

ME/CFS Forums

ProHealth

Health Rising (Cort Johnson’s site)

Phoenix Rising

Open Medicine Institute

Chronic Fatigue Initiative

Institute for Neuro Immune Medicine at Nova Southeastern University

Simmaron Research

Stanford ME/CFS Initiative

Whittemore Peterson Institute for Neuro-Immune Disease

Trans-NIH ME/CFS Research Working Group, NIH

Chronic Fatigue Syndrome Advisory Committee, HHS

Social Security Administration: Revised Social Security Ruling about Evaluating Cases Involving Chronic Fatigue Syndrome for Social Security Disability


For information on how to get free prescription drugs

Chicago area support group
Voicemail:  773-650-1332
http://www.CFCCC.net
Contact:  Carole Howard

Director of Services in Chicago  http://www.cfccc.net/SupportGroups.htm

The CF Alliance is a free, international pen
pal program for Chronic Fatigue Syndrome (CFS)
Myalgic Encephalomyelitis (ME)and Fibromyalgia (FM)
sufferers of all ages, as well as their families and
caregivers.

Frank Albrecht’s  website: “FOR PARENTS OF SICK AND WORN-OUT KIDS”

Website for CFIDS & Fibromyalgia Health Resource
A good source of health information and high quality vitamins
and supplements

An Eye Opening Guide to Chronic Fatigue Syndrome

Dr. Peter C. Rowe’s General Information Brochure On Orthostatic Intolerance http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf


Europe

European ME Alliance is an alliance of patient organizations from many European countries  http://euro-me.org/

The European ME Research Group (EMERG) was formed in around 2016 and includes members from many European countries and some of the key participants of the COST initiative. EMERG is focused on collaboration, developing a strategy for biomedical research, and progressing joint projects https://www.linkedin.com/pulse/european-me-research-group-emerg-invest-inme .

The COST group met for the first time in around 2016 with a goal of tackling the problem of a lack of coordination and capacity in the field. It is a mechanism for getting European groups together to develop a strategy for research and educational efforts.


Multiple Chemical Sensitivities

Excellent information on this website: http://www.mychemicalfreehouse.net/

This book contains a step-by-step guide to outfitting a place to avoid mold from moisture with an eye to avoiding chemicals from certain building materials: https://www.amazon.com/Camp-Like-Girl-Wellness-conversion-ebook/dp/B01IGE6YEM

This website, founded by Erik Johnson & Lisa Petrison, primarily for mold avoiders – has lots of good advice on also avoiding chemicals:   http://paradigmchange.me/

Multiple Chemical Sensitivity Referral and Resources, Inc. Provides outreach, resources for health care professionals, patient support, and public advocacy. 508 Westgate Road Baltimore, MD  21229-2343 Phone: 410-362-6400 Fax: 410-362-6401 Email: donnaya@rtk.net


Fibromyalgia Websites

Fibromyalgia
F.A.C.E.S. INC. Fibromyalgia Association Created for Education and Self-help,
a network of self-help groups in the Chicago metropolitan area:
send email to: fibrocop@hotmail.com or call Sabrina Johnson at 773-731-1228.

Fibromyalgia Network
http://www.fmnetnews.com
A national support organization for individuals with FMS that publishes an informative newsletter.

Fibromyalgia Network News
http://www.FMNetNews.com

The National Fibromyalgia Awareness Campaign
http://fmaware.org

The Oregon Fibromyalgia Foundation.
http://www.Myalgia.com



 

Other Services and Resources:

Information about the Americans with Disabilities Act can be found at:
U.S. Department of Justice
Civil Rights Division
Public Access Section
P.O. Box 65860
Washington, D.C.  20277-1806
Phone: 1-800-232-9675

National Information Center for Children and Youth with Disabilities
PO Box 1492
Washington, DC  20013
Phone: 202-884-8200

Food Stamps
Phone: 1-800-252-8635

Handicapped Parking Placard:
Phone: 1-800-252-8980

Social Security Administration:
Phone: 1-800-772-1213

Social Security Disability Hotline
Phone: 1-800-637-8856

Frequently asked questions on Social Security Disability

Sleep problems

Sleepydust.net
Info about Post Viral Fatigue Syndrome, Chronic Fatigue Syndrome, Myalgic Encephalopathy, Myalgic Encephalomyelitis, and Fibromyalgia: Brain fog-friendly ME/CFS & FMS information: symptoms, diet, therapies & treatments, medicines, ME/CFS & Fibromyalgia-related news, book reviews and more ME/CFS site

The following companies offer catalogues and sell a variety of environmentally safe products for individuals with multiple chemical sensitivities and other allergic conditions, including nontoxic cleaning supplies, clothing, household paint, and air filters:

National Ecological and Environmental Delivery System (N.E.E.D.S.)
527 Charles Avenue, 12-A
Syracuse, NY  13209
Phone: 1-800-634-1380
Fax: 1-800-295-6333

Allergy Control Products, Inc.
96 Danbury Road
Ridgefield, CT 06877
Phone: 1-800-422-3878
Fax: 203-431-8963