Web pages created by people living with FM & CFS
I will include web pages created by people who have FM and CFS. I have found these sites inspirational and hope you find them encouraging. See what they are doing despite their pain and fatigue. They have painful and tiring days but they appear to push on and pace themselves in their accomplishments. I have also added sites where you can join support groups and advocacy groups.
FM & CFS Advocacy I created this site to be used as place where people with Fibromyalgia and Chronic Fatigue Syndrome can come together to advocate for themselves to promote positive changes in health care, services, funding for research, laws, and whatever else that would help improve life circumstances for people with FM & CFS. Here you will find links to sites useful in sending petitions, emails, ect. to promote positive changes, news pertaining to FM & CFS, research information and FM, CFS Advocacy group to communicate with others.
Hamilton Cfs (ME) Support Group Website New Zealand "Here you will find information about Chronic Fatigue syndrome and fibromyalgia. Plus also many useful links from around the world by fellow patients and support groups along with the latest medical research as it becomes available."
Charlotte Area CFIDS/FMS Support Group "This is a support group for and "by" people with Chronic Fatigue Syndrome and Fibromyalgia. Our group meets the
2nd Thursday of each month at
7:00 P.M. in
Classroom 2, 2nd Floor, (go through the double doors to maternity off the sitting area after getting off the elevators on the cafeteria side of the hospital)
Matthews Presbyterian Hospital, 1500 Matthews Turnpike Highway (Rt. 51).
Our meetings vary from facilitated discussion meetings to speakers (healthcare providers, lawyers, social service workers, etc.) The meetings are very informal and generally run about 2 hours."
FMS Patient Registry "The FMS Patient Registry is seeking volunteers to participate in a research program that could significantly impact how FMS is diagnosed and treated, with the goal of understanding the various factors associated with FMS, and as a result developing better diagnostic and therapeutic tools."
Chronic Fatigue Syndrome and Fibromyalgia Support Group of DFW (Dallas/Fort Worth, Texas) Dallas/Fort Worth Area Support group's web site which does have a lot of good information for people with FM & CFS.
Welcome To Your Fibromyalgia CommunityIt's a new site but has a lot of potential. "Our Goal is to unite all the people with Fibromyalgia in one common area on the Internet. This site will provide you with a free e-mail address and your own web site and you will have control of it without any annoying pop-up advertising windows invading your space. If you don't have a site developed, you can create one with our easy to use online editing tools. If you do have a site already, our site makes it easy to upload your html files and images. All you need to do is sign up and once your request is authorized, you can have your own site and e-mail address at MyFibroSite.com. Just as research is continually finding new answers for you, so will this web site grow and offer you more and better things in the future. We are a new service, but plan on being here as long as you need us."
ImmuneSupport.Com Site has a lot of online support groups as well as a ton of news & research on CFIDS & FM.
Cure Hope Advocacy Research and Global Education, Inc. "Cure, Hope, Advocacy, Research and Global Education, Inc. (CHARGE) is a newly formed nonprofit organization founded by people with CFIDS and FMS*. The organization's goals are to establish and coordinate support groups for patients; acquire and disseminate knowledge concerning CFIDS, FMS and related disorders; encourage communication and advocacy among our members, organizations, professionals and concerned individuals and to promote research for the cause, methods of diagnosis, treatment, cure and prevention of CFIDS, FMS and related disorders."
New York Support Network, Inc. "New York Support Network, Inc. (NYSN) encourages the preservation and development of Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia Syndrome support groups in New York State, coordinates advocacy efforts, conferences and helps to educate patients and the public about these and related illnesses. Together we will have a greater voice to inform the public, doctors and politicians of our needs as members of the community."
The Chronic Syndrome Support Association " was founded in order to educate the general population and health-care professionals who lack current knowledge of the research being done, and potential research that needs to be done, on these serious, yet invisible, Chronic Immunological and Neurological Disorders (CIND), which include Fibromyalgia Syndrome (FMS), Gulf War Syndrome (GWS), Multiple Chemical Sensitivity Syndrome (MCS), Myalgic Encephalomyelitis (ME, the term used in most of the world) / Chronic Fatigue Syndrome (CFS, the term used in the United States), Chronic Myofascial Pain (CMP), Post-Polio Syndrome (PPS) and related illnesses. It is our goal to promote awareness of these illnesses, and in the process we hope to contribute to the growing body of knowledge about them."
Fibromyalgia Association Created for Education and Self-help Research, advocacy & support info.
The Fibromyalgia Community Site provides a lot of information including research, advocacy & support.
The Chronic Syndrome Support Association, Inc. "is a 501(c)3 non-profit corporation. It was founded in order to educate the general population and health-care professionals who lack current knowledge of the research being done, and potential research that needs to be done, on these serious, yet invisible, Chronic Immunological and Neurological Disorders (CIND), which include Fibromyalgia Syndrome (FMS), Gulf War Syndrome (GWS), Multiple Chemical Sensitivity Syndrome (MCS), Myalgic Encephalomyelitis (ME, the term used in most of the world) / Chronic Fatigue Syndrome (CFS, the term used in the United States), Chronic Myofascial Pain (CMP), Post-Polio Syndrome (PPS) and related illnesses. It is our goal to promote awareness of these illnesses, and in the process we hope to contribute to the growing body of knowledge about them."
Fibromyalgia and Chronic Fatigue book By Michelle and Brooke. They are looking for people to share their stories living with FM and/or CFS. They are also getting doctors to contribute to the book including Dr. Shoemaker who is asking if anyone has been diagnosed with neurotoxins. If you are interested in finding out more about the book feel free to email Brooke from her site.
Fibrodoc.org Site created by doctors and other medical professionals who have FM. It's a large site with lots of information on FM, how to talk to your doc, support & much more.
National Fibromyalgia Awareness Campaign Site includes activist and advocacy activities, FM conferances as well as coping strategies and research information.
CFSupport The Northern Virginia CFS/FMS Support Group Serving Northern Virginia, Southern Maryland, & Washington, DC
The Firbrom-L Community Online support, advocacy, research information and more.
Winston-Salem CFS/FMS/MPS Support Group Support Group for Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and Myofascial Pain Syndrome in Winston-Salem, North Carolina and the Surrounding Area
New York Support Network, Inc. Support group for people with Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia Syndrome in NY. Group encourages the preservation and development of support groups in New York State, coordinates advocacy efforts, conferences and helps to educate patients and the public about these and related illnesses.
CHRONIC FATIGUE SYNDROME ASSOCIATION OF LONG ISLAND Site has several short research articles on CFS & related conditions such as NMH.
TownsendVillage ∑ For People With ME/CFS/FM/Lyme/etc. This site I received in an email. "Townsend Village, Inc., is a non profit corporation established in Pennsylvania. We are currently working with the IRS on a 501(c)3 designation and looking for propery in Pennsylvania with acreage with or without buildings so that we can expand when necessary. Our plan is to have a main bulding with out cabins. We intend to eventually have a staff of Cook, Maid, Maintenance/Chauffeur and will add as needed.
Eventually, we hope to help others open similar villages in other parts of the country. If you need a place right now, you are welcome to Pennsylvania, and will able to transfer to other locations as they become available." I added this site here in case anyone may want to inquire about it to either be a part of the organization or check into it's housing. As with checking into anything be prudent before making any significant changes. It could be good or could be in need of a lot of improvements.
SUPPORT GROUPS USA List of FM & CFS support group web sites.
Rest Ministries Fibromyalgia Support Group Christain online support group. Site includes resources and information.
National Fibromyalgia Partnership, Inc. (NFP) Site includes conferances, information & good articals on FM. Be sure to check out the artical on FM & memory.
CFS-L / ALT.MED.CFS CFS Patients discussion group CFS-L / alt.med.cfs is the largest CFS patient group on the Internet. Patients actively exchange information and support at all hours of each day. Started in 1992, the group now has over 2,000 registered participants. It can be accessed either as a Usenet newsgroup or as a mailing list.
R.E.S.C.I.N.D. Repeal Existing Stereotypes about Chronic, Immunological and Neurological Diseases Site provides links to sites which provide news, advocacy, research and support on CFIDS and related conditions.
Fibrofun and Support It's a new site which has links to several good sites for information and is developing an online support group.
Fibromyalgia Support CDnD Online support includes chats, message boards, as well as information on FM & helpful tips coping.
An empowerment group for women with physical and psychological/emotional challenges. This site produces a newsletter of articals written by people with hidden disabilities.
National ME/FM Action Network Canadian site on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia (ME/FM)--offering support, advocacy, education and research into the many, varied, anomalies connected with these illnesses.
This is a poem which I received which I wanted to share as an encouragement to you. Sometimes we get discouraged and need some reassurance. I know I need encouragement from time to time which helps me to remember that others get discouraged too. Besides when I encourage others it encourages me also. I hope this offers encouragement to you.
Regardless of the odds against you,
and pressure that tears at your resistance,
Stopping at nothing,
And doing what's in your heart,
You know is right,
Keeping a smile on your face,
When inside you feel like dying,
For the sake of supporting others,
Helping a friend in need,
No matter the time or effort,
To the best of your ability,
Doing more than is expected,
To make another's life more bearable,
Without uttering a single complaint,
Web Sites Created by People with FM & CFS
Managing My Fibro Managing My Fibromyalgia ... TIPS That May Help Fellow Sufferers "A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses." Bill shares his story & life living with FM. He has returned to work doing duties he can do & being productive in helping others as well.
Lynda's Fibromyalgia Ministry She shares her story and christainity as well as her pets.
Morgain's FM Story She shares information & personal experiences.
Positive Angel with Fibromyalgia Carla shares her story, thoughts & poems to encourage others who have FM.
Teenagers with Chronic Illnesses Lauren's site on PCOS, NMH, POTS, crohns disease, gastrointestinal motility problems, CFS, and pelvic congestion. She shares about each of these conditions as well as some coping tips.
Michelle Akers: A Conquering Spirit Her story living with CFIDS. It's an inspirational story.
A Fibromyalgia Study Peggy Muench is a former nurse,who has both fibromyalgia and chronic fatigue syndrome, is currently enrolled in a doctoral program. She is writing her dissertation on the relationship between spirituality, hope, and psychological well-being for individuals diagnosed with fibromyalgia and/or chronic fatigue syndrome. She is looking for volunteers for her survey.
The CFIDS/M.E. Information Page A friend told me about Mary's site and said she also has Hashimoto's Thyroiditis which she found out when she met her at a CFIDS protest rally on CFIDS awareness day one year.
Fibromyalgia Sufferers A FM sufferer shares her story as well as having a lot of good links to informative sites.
NEED TO TALK TO SOMEONE WHO UNDERSTANDS? The following is from Our FMS/CFS World website that offers a wealth of FMS and CFS information:
Jan, at Painpal48@aol.com, is willing to listen and offer you support. Simply drop her a line and she will respond. She is a compassionate, caring woman who has suffered with the ravages of these diseases.
Cameron woman eases own pain by helping others cope Artical of how one women turned the pain of FM into a means of reaching out to others.
CFIDS Awareness Day Letter 2002 Peggy Munson who has had CFIDS for 10 years shares her thoughts and insights of the need to bring greater awareness of CFIDS and advocate for more research on CFIDS.
Phyllis Griffiths' Homepage She shares about how CFS & FM has effected her life, what she did before & what she is doing now to help advocate for others with CFS & FM. She is co-owner and administrator of two mailing lists, SASYFRAS@HOME.EASE.LSOFT.COM, and ME-FMS-CAN@HOME.EASE.LSOFT.COM.
FunkDeva Sherri Lyn Robbins has been a singer, songwriter, and performer for over twenty years and also copes with FM. She is a very caring person and does reach out to others who are suffering with FM. She emailed me about my site and shared about her condition. Her songs may be of comfort to you. She shares 2 of her albrums online.She selected the word Deva which in Sanskrit means angel. She shared with me about her second albrum. "Soul Satisfied, the first album was my life-long dream realized. Precious and Righteous, was birthed out of my struggle with my illness and it's devestating effects on my self-esteem and my spirit. I hope one day to be able to use my music and life to help others who are in pain.
Fibromyalgia The Pain behind the Smile She shares about struggling with the stigma people have about FM sufferers are hypochrondiacs.
The Invisible Disabilities Advocate Created by Sherri who has FM, MS and many other autoimmune diseases. She offers support and information to share with your family and friends.
Kellie's web page This is a web page put together by a twin who she & her twin both have FM.
Shattered Information on a book the coauthor had emailed me about. "A Championís Fight Against A Mystery Illness and tells the story of Peter Marshall, Englandís highest ever ranked squash player."
Virada's Journey : Virada's FM site is currently underconstruction. Hopefully it'll be up soon. She also shares other interesting things on her web page.
Laura Hillenbrand An Inspiration to all PWCs What a person can do despite having a severe case of CFS & Vertigo. This is a good example of what a person can do despite obsticals & why I don't do well with the "victim role" mentality.
I Remember Me a film by Kim A. Snyder who has CFS. It's an Award-Winning Documentary Film About Chronic Fatigue Syndrome. Kim Snyder has completed a five-year film project that has now garnered four awards which opened theatrically in November 2001.
Personality and Illness It's a preview for a book but does have a story of a women's response to major heart disease. Also the artical describes the importance of faith, hope and outlook on life effect health.
For Everything There Is A Season Another excerpt from the book Birthquakes. It's a reminder (or eyeopener) that we need to listen to our bodies and not keep overdoing it which I tend to be guilty of. We need to take time to rest and enjoy life and not worry about every little thing. We can't take on everyone's problems which I have been guilty of doing at times. This only leads to a tired & depressed body. Not fun!
My frustrations with Fibromyalgia People Yes, I do feel frustrated at times also. My sister is always telling me I shouldn't keep my feelings in which I have a tendency to do partly because I don't want to hurt others' feelings because I don't like my feelings hurt.
Stress Links List of stress related articals on Healthscout.
Good health - It's your choice Artical farther explains good stress and bad stress habits.
Causes of Stress You can review the list of common stressors to help you identify stress you can reduce in your life.
How much are you worth to God? Just a little story to remind you that you are still worth a lot.
Meaning A little poem my mom sent me today which encouraged me especially since the other day at work I felt discouraged by one of my coworkers who commented that my standards were too high. I began to have self doubt that maybe I was too unrealistic. God tells us to strive for perfection and to treat others as we want others to treat us. Needless to say I try to live by these principles but do occasionally get discouraged because sometimes I do feel isolated and misunderstood because of my standards. Anyway if I didn't have this belief you wouldn't be visiting this site because it wouldn't exist.
Rainbows How the rainbow is a sign of God's promise that He will guide us through the storm.
A letter from fibromyalgia I got this in an email which I thought I'ld share here.
God Knows A poem of encouragement when you may be feeling abandoned and discouraged.
Fibromyalgia Survey "If you are a Fibromyalgia sufferer, your help is needed for the development of a new FM magazine called Fibromyalgia Aware. This will be the first-ever trade magazine on FM. To make this publication everything patients need, the publishers are asking for input from patients. The survey consists of 10-questions and you'll be able to see other responses once you have completed the survey."