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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)

http://solvecfs.org/

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/

 

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

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/

 

ME-CFSCommunity

http://www.cfsknowledgecenter.ning.com/

 

ME/CFS Forums

http://www.mecfsforums.com/

 

ProHealth

http://www.chronicfatiguesupport.com/

Phoenix Rising

http://www.phoenixrising.me/

 

Health Rising (Cort Johnson’s site)

http://www.healthrising.org

 

Open Medicine Institute

http://www.openmedicineinstitute.org/

Chronic Fatigue Initiative

http://www.cfinitiative.org/

 

Institute for Neuro Immune Medicine at Nova Southeastern University

http://www.nova.edu/nim/index.html

Simmaron Research

http://www.simmaronresearch.com/

Stanford ME/CFS Initiative

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

 

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

http://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

 

 

For information on how to get free prescription drugs

http://www.rxassist.org

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

http://www.datehookup.com/content-an-eye-opening-guide-to-chronic-fatigue-syndrome.htm

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.

·       Crisischat.org

·       IMAlive.org

·       7cups.com

·       Crisis Text Line

o   Text “CONNECT” to 741741

 

Online Therapy Services:

·       Talkspace

o   https://www.talkspace.com/

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