Support and Advocacy
There are a multitude of people, associations and agencies dedicated to helping people with chronic fatigue syndrome and/or fibromyalgia. Check out these groups if you are looking for a patient advocacy organization, a support group or a social service program.
Articles & Resources
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You and Your Medical Records
Your medical records are important. In 1996 the Health Insurance Portability and Accountability Act (HIPAA) was passed. Although from the name you would think it just deals with health insurance, this long, rather complicated law also addresses issues of privacy and rights to medical records.
Your medical records are important. In 1996 the Health Insurance Portability and Accountability Act (HIPAA) was passed. Although from the name you would think it just deals with health insurance, this long, rather complicated law also addresses issues of privacy and rights to medical records.
FInding Support
Whether you are looking for an established fibromyalgia or chronic fatigue syndrome support group, an online group, or want to start your own support group, these resources should help you get started.
Whether you are looking for an established fibromyalgia or chronic fatigue syndrome support group, an online group, or want to start your own support group, these resources should help you get started.
How to Start a Support Group
If you're thinking about starting a support group, here are six steps to help you get started.
If you're thinking about starting a support group, here are six steps to help you get started.
Leadership Tips for Support Group Leaders
Nine leadership tips for support group leaders.
Nine leadership tips for support group leaders.
Program Ideas for Support Group Meetings
A compilation of program ideas and speaker topics for support group meetings.
A compilation of program ideas and speaker topics for support group meetings.
Online Support Groups
If you’re not able to go to a local support group, don’t have one in your area, or are looking for support between meetings, online support groups may be your answer.
If you’re not able to go to a local support group, don’t have one in your area, or are looking for support between meetings, online support groups may be your answer.
Meet Ken Euteneier, Founder of FibroHugs
Profile of Ken Euteneier, fournder of FibroHugs, a support site for people suffering from fibromyalgia and related illnesses featuring message forums and live chats.
Profile of Ken Euteneier, fournder of FibroHugs, a support site for people suffering from fibromyalgia and related illnesses featuring message forums and live chats.
Meet Rich Carson, Founder of ProHealth, Inc.
Profile of Rich Carson, chronic fatigue syndrome patient and founder of ProHealth, Inc.
Profile of Rich Carson, chronic fatigue syndrome patient and founder of ProHealth, Inc.
Finding a Support Group
A support group can be an excellent source of encouragement and education. Often it is helpful just to be with people who know what you are going through. A good support group will also teach you more about your illness and keep you informed of medical advances.
A support group can be an excellent source of encouragement and education. Often it is helpful just to be with people who know what you are going through. A good support group will also teach you more about your illness and keep you informed of medical advances.
National Invisible Chronic Illness Awareness Week
NICIAW seeks to make the public, churches, medical professionals and government aware that one-in-three people suffers with a chronic illness that seriously impacts his or her life.
NICIAW seeks to make the public, churches, medical professionals and government aware that one-in-three people suffers with a chronic illness that seriously impacts his or her life.
Meet Lisa Copen, Founder of Rest Ministries, Inc.
Learn about Lisa Copen who founded Rest Ministries, Inc., a nonprofit Christian organization serving people with chronic illnesses.
Learn about Lisa Copen who founded Rest Ministries, Inc., a nonprofit Christian organization serving people with chronic illnesses.
What's In a Name?
Chronic fatigue syndrome patients have long hated the name given to the disease we suffer with daily. Why? Because it trivializes the seriousness of our illness. The disease is named for only one of its symptoms –– a symptom that most people experience at some point in their lives.
Chronic fatigue syndrome patients have long hated the name given to the disease we suffer with daily. Why? Because it trivializes the seriousness of our illness. The disease is named for only one of its symptoms –– a symptom that most people experience at some point in their lives.
Florida Congressman Supports Chronic Fatigue Syndrome Advisory Committee Charter
Florida Congressman Clay Shaw wrote to Secretary Michael Leavitt of the U.S. Department of Health and Human Services, encouraging him to renew the charter of the Chronic Fatigue Syndrome Advisory Committee, which is set to expire on September 5, 2006.
Florida Congressman Clay Shaw wrote to Secretary Michael Leavitt of the U.S. Department of Health and Human Services, encouraging him to renew the charter of the Chronic Fatigue Syndrome Advisory Committee, which is set to expire on September 5, 2006.
CFS Awareness Campaign Launches Today
June 7, 2006 is a landmark day for the estimated one million people who suffer with chronic fatigue syndrome (CFS). It marks the launch of the very first national CFS awareness campaign in the history of the illness. The year-long, multi-faceted campaign is aimed at educating the general public, health care professionals, legislators and the media about CFS.
June 7, 2006 is a landmark day for the estimated one million people who suffer with chronic fatigue syndrome (CFS). It marks the launch of the very first national CFS awareness campaign in the history of the illness. The year-long, multi-faceted campaign is aimed at educating the general public, health care professionals, legislators and the media about CFS.
National Fibromyalgia Association
The National Fibromyalgia Association is a nonprofit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia. The NFA concentrates on patient support and informational services, awareness outreach, physician continuing medical education, and research.
The National Fibromyalgia Association is a nonprofit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia. The NFA concentrates on patient support and informational services, awareness outreach, physician continuing medical education, and research.
CFIDS Association of America
The CFIDS Association of America is the largest and most active charitable organization dedicated to conquering chronic fatigue and immune dysfunction syndrome, also known as chronic fatigue syndrome. The Association leads national efforts in CFIDS education, awareness, public policy and research.
The CFIDS Association of America is the largest and most active charitable organization dedicated to conquering chronic fatigue and immune dysfunction syndrome, also known as chronic fatigue syndrome. The Association leads national efforts in CFIDS education, awareness, public policy and research.
FibroHugs
FibroHugs is a well-established and popular online support group that offers monitored forums and chat rooms, a free e-mail newsletter, and lots of information about fibromyalgia.
FibroHugs is a well-established and popular online support group that offers monitored forums and chat rooms, a free e-mail newsletter, and lots of information about fibromyalgia.
Rest Ministries, Inc.
Rest Ministries, Inc. is a Christian nonprofit organization that serves people living with chronic illness or pain and their families by providing spiritual, emotional, relational and practical support. They offer free e-mailed daily devotionals and a quaraterly magazine.
Rest Ministries, Inc. is a Christian nonprofit organization that serves people living with chronic illness or pain and their families by providing spiritual, emotional, relational and practical support. They offer free e-mailed daily devotionals and a quaraterly magazine.
National Fibromyalgia Partnership
The National Fibromyalgia Partnership is a nonprofit organization whose mission is to make medically accurate, quality resource information on fibromyalgia available to their membership, health care professionals and the community at large.
The National Fibromyalgia Partnership is a nonprofit organization whose mission is to make medically accurate, quality resource information on fibromyalgia available to their membership, health care professionals and the community at large.
Co-Cure
Co-Cure stands for, "Co-operate and Communicate for a Cure." The Co-Cure Project is a volunteer, patient-driven effort to promote the sharing of information about chronic fatigue syndrome and fibromyalgia and related disorders.
Co-Cure stands for, "Co-operate and Communicate for a Cure." The Co-Cure Project is a volunteer, patient-driven effort to promote the sharing of information about chronic fatigue syndrome and fibromyalgia and related disorders.