Chronic Invisible Illness

Joy H. Selak and Dr. Steve Overman

You Don't LOOK Sick!
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Patient Resources

Most medical conditions have an associated organization or informational arm. Abundant helpful resources for patients are available through web searches using key words of illnesses or symptoms. For those who do not yet have a clear diagnosis, there are general medical sites with search engines that will match symptoms to medical conditions. Also, there are sites to help patients cope with particular symptoms, such as chronic pain. Once diagnosed, patients can find help and support in managing illness and accessing care through illness support and research organizations.

Almost every site provides additional resources through recommendations or an online store. We list below sites that we have found helpful. If there is a site or organization that you find helpful, please email us with your suggestion:

Patient Support Organizations 

(* indicates groups to which authors have been guest speakers)

*APS Foundation of America(Antiphospholipid Antibody Syndrome)
PO Box 801
LaCrosse, WI 54602-0801

American Cancer Society
National Home Office
250 Williams Street NE
Atlanta, GA 30303
American Cancer Society

*American Chronic Pain Association
P.O. Box 850
Rocklin, CA  95677
(919) 632-3208
(800) 533-3231

*Arthritis Foundation

PO Box 7669
Atlanta, GA  30357-0669
(800) 283-7800


Autoimmune Advocacy Alliance

PO Box 826

Freeland, WA 98249

(360) 331-1740

*CFIDS Association (Chronic Fatigue Syndrome)
PO Box 220398
Charlotte, NC  28222
(704) 365-2343
Bent but Not Broken:Providing Emotional, Educational & Financial Resources to Patients & Their Caretakers Living With CFIDS/CFS

Massachusetts CFIDS/ME & FM Association
P.O. Box 690305
Quincy, MA 02269-0305, USA
(617) 471- 5559

Crohn's and Colitis Foundation
386 Park Avenue South, 17th Floor
New York, NY 10016
(800) 932-2423
*The National Fibromyalgia Association
2121 S. Towne Centre Place, Suite 300
Anaheim, CA 92806
(714) 921-0150 

*Gastroparesis Patient Association for Cures and Treatments
702 Winebary Circle
Lewisberry, PA  17339
1-888-URG-PACT (800) 874-7228

National Headache Foundation
820 N. Orleans, Suite 411
Chicago, IL  60610
(888) 643-5552
*Interstitial Cystitis Association
1760 Old Meadow Road, Suite 500
Maclean VA 22102
(703) 442-2070
Lupus Foundation of America
2000 L Street N.W. Suite 410
Washington, D.C. 20036
(800) 558-0121 (information request line)
(202) 349-1155 (main office)

*Lyme Disease Association
PO Box 1438
Jackson, NJ 08527
(888) 366-6611

*The Mastocytosis Society
PO Box 129
Hastings, NE 68902-0129

*MPN Education Foundation (myeloproliferative neoplasms)

*Myasthenia Gravis Foundation of America
355 Lexington Avenue, 15th Floor
(800) 541-5454

The Myositis Association (TMA)
1737 King Street, Suite 600
Alexandria, VA  22314
Harrisonburg, VA 22801
(800) 821-7356

National Multiple Sclerosis Society

733 Third Avenue
New York, NY  10017
(800) 344-4867

*National Neutropenia Network
PO Box 1693
Brighton, Michign 48116-5493

*The Neuropathy Association, Inc.
60 East 42nd Street, Suite 942
New York, NT 10165
Tel: (212) 692-0062

National Osteoporosis Foundation
1150 17th Street NW, Suite 850
Washington, D.C.  20036
(800) 231-4222

*Parkinson’s Disease Foundation
1359 Broadway, Suite 1509
New York, NY 10018

*The Foundation for Peripheral Neuropathy
485 Half Day Rd, Ste. 200
Buffalo Grove IL  60089

*Scleroderma Foundation
300 Rosewood Drive, Suite 105
Danvers, MA  01923

(800) 722-HOPE (4673) 

American Sickle Cell Anemia Association
DD Building at the Cleveland Clinic
10900 Carnegie Avenue
Cleveland, OH  44106
(216) 229-8600

ViaCord Blood Bank
Research in Sickle Cell Anemia
245 First Street, 15th Floor
Cambridge, MA 02142
(866) 668-4895 

*Sjogren's Syndrome Foundation

6707 Democracy Blvd, Suite 325
Bethesda, MD   20817
(800) 475-6473
Spondylitis Association of America
16360 Roscoe Blvd, Suite 100
Van Nuys, CA  91406
(800) 777-8189
American Thyroid Association
6066 Leesburg Pike, Suite 550
Falls Church, VA 22041
The Vasculitis Foundation
P.O. Box 28660 
Kansas City, MO  64188-8660
(800) 277-9474

Patient Support Tools

Recall Guide is a free resource that alerts users to dangerous FDA recalls and helps them track the side effects of their medications.

A non-profit guide to health and well being offering a balanced, compassionate view of mental health. 

Remedies for Rheumatoid Arthritis Flare-Ups

Tips for Inflammatory Bowel Disease

4 Steps to Heal Leaky Gut and Autoimmune Disease 

Life with Psoriasis: Managing Itch

Managing Your MS Pain 

Nursing Guide: Basic First Aid Resources

Rehab4Alcoholism - The A-Z Guide to Alcoholism and Depression: This guide outlines the link between alcoholism and depression. The article explains why this link exists and then provides tips you can implement to make positive change.




General Medical Websites

The web has become the world’s largest source for medical information. Reputable sites can be excellent starting points for someone with a diagnosis and many questions. By searching each site, you can find summary information about your issues. Use caution, though, especially in chat rooms other unmonitored forums. Information in these forums are anecdotal and may be misleading or totally wrong. Here are some recommended sites: 

The Center for Disease Control and Prevention's site, with searchable information and statistics on many health topics, including arthritis.

From the National Institutes of Health (NIH),a verycomprehensive site with information about clinical trials, drug evaluations, anddisease-specific therapies, in addition to general topics. 

Site sponsored by Edward Wagner and the Robert Wood Johnson Foundation to help organizations interested in improving chronic care management.

The Job Accommodation Network provides help with questions about workplace accommodations and the Americans with Disabilities Act (ADA) or related legislation.

Mayo Clinic’s consumer site, offering health and medicalinformation, self-improvement strategies, anddisease management tools.

Medline Plus is another comprehensive site from the NIH with a medical encyclopedia, medical dictionary, recent medical news, and drug and health information.

This site, from the National Center for Complementary and Alternative Medicine, lists alerts and advisories about treatments and medications. It also offers information about alternative medicine and links to conventional medical topics and information.

The American Psychiatric Association is the world's largest psychiatric organization representing more than 36,000 psychiatric physicians from the United States andaround the world.

The American Psychological Association is the U.S. scientific and professional organization representing psychology.


The Society for Participatory Medicine is devoted to promoting a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

As the name implies, this site offers information about health fraud and current concerns about medications and treatments. It lists consumer protection agencies and services and includes comments about questionable services, websites, advertisements, and products, as well as nonrecommended sources of health advice.

A comprehensive, searchable site that offers information forthe newly diagnosed, expert advice, and extensive general health resources.

This nonprofit organization is dedicated to promoting health advocacy in Washington State, empowering patients and improving healthcare outcomes. Find out everything you need to know about health advocacy. helps communities around the world become smoke-free and healthy.

Online Newsletters

Another source of information for patients is online newsletters. These may address a specific symptom or illness. They may also have a retail function and/or membership requirements. However, the summary of news and research that they offer can be helpful to patients trying to keep abreast of progress in medical research on the causes of illness, diagnostic tests, and the latest treatment options.


This newsletter is subtitled “commerce with compassion and publishes recent research on fibromyalgia and chronic fatigue and also markets vitamins and supplements.

Fibromyalgia Network:

This newsletter is dedicated to fibromyalgia treatment and research news. They do not accept advertisements endorsements or pharmaceutical company grants.

ICA Update—ICAeNews:

The ICA Update is an award-winning quarterly magazine from the Interstitial Cystitis Association with in-depthstories about interstitial cystitis (IC) research, treatment,and lifestyle issues. The ICA Update is a benefit of membership in the Interstitial Cystitis Association (ICA). Donors who make an annual gift of $45 or more to the ICA also receive this unique magazine.

Pain Medicine News:

This excellent newsletter offers information in all areas around the treatment of pain.

The National Pain Report:

A site filled with articles, research updates and helpful information in all subjects around pain. There is also a feature called My Stories for patients to submit their own experiences with pain.

Patient Empowerment:

This feature of includes a wealth of information. Columns by patient advocate Trisha Torrey are insighful are insightful and helpful.

Support for Children, Caregivers and the Disabled

Raising a Child with CFS

Routines and Children with Disabilities

Raising Children Network  
Royal Children’s Hospital 
50 Flemington Road
Parkville Victoria 3052 
Beneficial Activities for Kids with Special Needs
1412-1414 Pine St.
Philadelphia, PA 19102
The Ultimate Guide to Flying with Autistic Children
Jaco Aerospace and Industrial
2050 Lincoln Ave. Pasadena, CA 91103

Teaching Students with Special Needs
Family Education Network 
501 Boylston Street, 
Suite 900 Boston, MA 02116

Homeschooling and Special Needs Children
Home School Legal Defense Association 
P.O. Box 3000 
Purcellville, VA 20134 
(540) 338-5600

College Assistance Guide for People with ADHD
US News University Directory

Obesity and Children with Special Needs
c/o Community Gatepath 
350 Twin Dolphin Drive Ste 
123 Redwood City CA 94065
(650) 259-8500’s Guide for Family Caregivers
Disability Gov

How Caregivers Can Take Better Care of Themselves
525 Broadway 
New York City , NY 10012

A Safety Guide for Disabled Pedestrians
Online Loan Calculator

A New Savings Plan for the Disabled
The Wall Street Journal 
1211 Avenue of the Americas 
New York, NY 10036

A Guide for Disabled Homebuyers
2025 1st Ave, Suite 500, 
Seattle, WA 98121
+1 877-973-3346

Financial Assistance for Accessibility Home Repairs and Modifications

Disability Gov

Home Accessibility Costs
HomeAdvisor, Inc. 

14023 Denver West Pkwy Bldg. 
64 Golden, CO 80401 
(303) 963-7200

Chronic Fatigue in the Military

The Essential Guide to Traveling with a Medical Condition

CDC Chronic Fatigue Resource

Airports and Special Needs Travel: A Complete Guide

Reduce the Noise: Help Loved Ones with Sensory Overload Enjoy Shopping

Academic Accommodation Resources

A Trip to the Orthodontist with Chronic Fatigue: A Resource for People with CFS orthodontist-chronic-fatigue- syndrome-resource-persons-cfs