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.
Massachusetts CFIDS/ME & FM Association
New Jersey ME/CFS Association, Inc.
Organization for Fatigue & Fibromyalgia Education & Research (OFFER)
Rocky Mountain CFS/ME & FM Association
Wisconsin ME/CFS Association, Inc.
Health Rising (Cort Johnson’s site)
Institute for Neuro Immune Medicine at Nova Southeastern University
Whittemore Peterson Institute for Neuro-Immune Disease
Trans-NIH ME/CFS Research Working Group, NIH
Chronic Fatigue Syndrome Advisory Committee, HHS
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
Crisis Hotlines:
- National Suicide Prevention Lifeline
- 1-800-273-TALK (8255)
- International Crisis Hotlines
Crisis Chats:
The following are free, anonymous chatlines where you can talk to people trained in crisis intervention, emotional support, and suicide prevention. The chatlines are staffed by volunteers who have been trained in crisis intervention but are not licensed to provide therapy.
- Crisis Text Line
- Text “CONNECT” to 741741
Online Therapy Services:
- Talkspace
- https://www.talkspace.com/
- Talkspace is a subscription therapy service. You can talk via audio, video, or messaging with a licensed therapist for as low as $32/week. Insurance is not accepted. Talkspace offers mobile apps for Apple and Android devices.
- Breakthrough
- https://www.breakthrough.com/
- Video chat with the licensed professional of your choice. Many providers accept insurance. Prices per hour are dependent on provider chosen. Breakthrough offers mobile apps for Apple and Android devices.
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
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