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Organizations and Services
International
Association for CFS/ME
http://www.iacfsme.org/
2014 IACFS/ME Primer for Clinical Practitioners
http://www.iacfsme.org/LinkClick.aspx?fileticket=Pil0KeDIc2M%3d&tabid=509
Solve ME/CFS Initiative (formerly called The CFIDS
Association of America)
The National CFIDS Foundation, Inc.
http://www.ncf-net.org
The CDC CFS webpage
http://www.cdc.gov/ncidod/diseases/cfs/
Massachusetts CFIDS/ME
& FM Association
http://www.masscfids.org/
New Jersey
ME/CFS Association, Inc.
http://www.njcfsa.org/
Organization for Fatigue
& Fibromyalgia Education & Research (OFFER)
http://www.offerutah.org/
http://www.pandoraorg.net/
Rocky
Mountain CFS/ME & FM Association
http://www.rmcfa.org/index.html
Wisconsin
ME/CFS Association, Inc.
http://www.wicfs-me.org/
http://www.cfsknowledgecenter.ning.com/
http://www.mecfsforums.com/
http://www.chronicfatiguesupport.com/
http://www.phoenixrising.me/
Health Rising (Cort Johnson’s site)
http://www.healthrising.org
http://www.openmedicineinstitute.org/
http://www.cfinitiative.org/
Institute
for Neuro Immune Medicine at Nova Southeastern University
http://www.nova.edu/nim/index.html
http://www.simmaronresearch.com/
http://chronicfatigue.stanford.edu/
Whittemore Peterson Institute for Neuro-Immune Disease
http://www.wpinstitute.org/index.html
Trans-NIH
ME/CFS Research Working Group, NIH
http://orwh.od.nih.gov/research/me-cfs/
Chronic Fatigue
Syndrome Advisory Committee, HHS
http://www.hhs.gov/advcomcfs/index.html
http://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html
For information on how to get free
prescription drugs
Chicago
area support group
Voicemail: 773-650-1332
http://www.CFCCC.net
Contact:
Carole Howard
Directory 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.
http://groups.yahoo.com/group/CFAlliance
Frank Albrecht's website: "FOR PARENTS OF SICK AND WORN-OUT
KIDS"
http://home.bluecrab.org/~health/sickids.html
Website for CFIDS &
Fibromyalgia Health Resource
A good source of health information and high quality vitamins
and supplements
http://www.immunesupport.com
An Eye Opening Guide to Chronic Fatigue Syndrome
https://www.letshangout.com/content-an-eye-opening-guide-to-chronic-fatigue-syndrome.php
Dr. Peter C. Rowe’s General Information Brochure On Orthostatic Intolerance http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
Crisis Hotlines:
·
National
Suicide Prevention Lifeline
o 1-800-273-TALK (8255)
·
International
Crisis Hotlines
o http://www.suicide.org/international-suicide-hotlines.html
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
o Text “CONNECT” to 741741
Online Therapy
Services:
·
Talkspace
o 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
o https://www.breakthrough.com/
o 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.
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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.
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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
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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
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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
http://www.nosscr.org
Sleep problems
http://www.shuteye.com/solutions.asp
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
http://www.sleepydust.net/
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