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The Fibromyalgia Community - http://www.fibrom-l.org

Website Links For
FMS/CFIDS/MPS/ME/GWS/MCS


New Links added: Friday, June 05, 2009


The Fibrom-L Help Site does not offer medical advice or diagnosis. Use these links as a guide to plan your health care.  Consult with your personal care giver before beginning or modifying any treatment or exercise regimen. 


Featured Link: Chronic Babe.com A site for babes who just happen to have a chronic illness.

Link Categories:

Financial Help NEW! Organizations & Professionals Sites Education/Research
Advocacy Sites Alternative Therapies Children and Young Adults
Sleep Help Spirituality and Healing Medication Information
Running a Support Group Newsletters Organizations Dedicated to FM/CMP
International Resources Must See Multipurpose Sites Help with Elder Care
Resources For Men Abuse and Suicide Hotlines Online Support Groups and Courses
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Abuse and Suicide Hotlines 

Battered Women's Shelter
1-800-334-2839 fam_hav_@yahoo.com

National Coalition Against Domestic Violence
www.ncadv.org

National Domestic Violence Hotline
1-800-799-SAFE

Family Violence Prevention Fund
www.fvpf.org

National Sex Abuse Hotline
1-800-656-4673

Suicide Hotline
1-800-329-9775

Help with Elder Care

Elder Care and Home Care Resources. Many people with chronic pain find themselves sandwiched between taking care of their own family and caring for their elderly parents. Discover some new options and get some much needed help from this wonderful resource.

Advocacy

American Chronic Pain Association (ACPA), a non-profit, tax exempt organization with more than 800 chapters in the United States, Canada , Australia, New Zealand, Mexico, England, Ireland, Scotland and Russia. PO Box 850 Rocklin, California 95677 USA  916-632-0922  FAX 916-632-3208  mailto:ACPA@pacbell.net

American Civil Liberties Union -- defending the bill of rights

American Fibromyalgia Syndrome Association, Inc. or AFSA.. A nonprofit organization with the majority of the funds raised going towards new research. Their mission is "To encourage scientific research towards finding a cause of and cure for the fibromyalgia syndrome as well as to promote public awareness and understanding of this condition. To support educational, scientific and charitable activities undertaken exclusively in connection with FMS and related conditions."  Over the last several years they have funded studies done by Dr. Daniel Clauw, Dr. Daniel Wallace, Dr. Haiko Sprott, Dr. Thomas Fasy, Dr. Alice Larson, Ph.D. and many other noted FMS researchers!  Donations may  be sent to: AFSA, 6380 E Tanque Verde Rd. Ste D, Tucson, AZ. 85715-3822 Ph(520)733-1570 Fax (520)290-5550   There is a suggested membership contribution of $25.00, but in return you
will receive a quarterly newsletter describing the studies that have been funded and any results that have been discovered. If you have any questions please call AFSA

A.S.A.P.'s Main page. ASAP aids in the fight for adequate pain medication. A listserv available to discuss pain and medicine with other patients, doctors and interested parties. 

CSSA: Nancy Solo is Founder and President of The Chronic Syndrome Support Assn., Inc. (CSSA), a 501(c)3 non-profit corporation dedicated to furthering awareness of chronic syndromes. CSSA publishes a free pamphlet for public distribution. The Chronic Syndrome Support Association, Inc. 801 Riverside DriveLumberton, NC 28358-4625 USA (910272-0590 email: nsolo@cssa-inc.org website: http://www.cssa-inc.org

The Invisible Disabilities Advocate  IDA is not a business, organization or foundation and is not-for-profit. The name only serves to express the desire to help loved ones understand debilitating illness. IDA cannot give legal or medical advice.

Laura Mitchell -- disability lobbying specialization

The American Pain Foundation is a nonprofit information resource and patient advocacy organization serving people with pain. Our mission is to improve the quality of life of people with pain by providing practical information for patients, raising public awareness and understanding of pain, and advocating against barriers to effective treatment. We represent exclusively the interests of people who suffer from pain and we fill the need for a grassroots, consumer-driven, patient-focused organization promoting better pain management.

Disability Rights Education and Defense Fund, Inc. (DREDF) is a national law and policy center dedicated to protecting and advancing the civil rights of people with disabilities through legislation, litigation, advocacy, technical assistance, and education and training of attorneys, advocates, persons with disabilities, and parents of children with disabilities.

Justice For All and JFA E-mail Network. To defend and advance disability rights and programs in Congress. One JFA goal is to work with national and state organizations of people with disabilities to get the word from Washington D.C. out to the grassroots.

National Organization on Disability.

National ME/FM Action Network

 

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Alternative Therapies

Alternative & Complementary Medicine Center: Columns by professionals, discussion boards, searches.

L-tryptophan

Medical Marijuana: uses, studies and other information.

Meditation Made Easy

Therapeutic Touch: Healing therapy or hoax? An overview and basic concepts and studies. 

Therapeutic Touch Network of Ontario: Information, published papers, available courses, newsletter, articles & group listings.

Lee's Heat Packs. microwaveable moist heat pads

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Children and Young Adult Information

Special needs family friendly fun. Our mission is to: enable families with special needs to share with each other their experiences, information and inspirations via our newsletter and new eGroup forum; offer information on a variety of family friendly fun and helpful topics; and provide access to rings and a portal to websites that are relevant to special needs families.

The Pediatric Network for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance.
This is an Internet-based network for professionals, family members, and young people affected
by CFS, FM, and forms of orthostatic intolerance such as neurally mediated hypotension (NMH)
and postural orthostatic tachycardia syndrome (POTS).

A Sourcebook for Teachers of Children with ME/CFS &/or FM

Juvenile Fibromyalgia and Chronic Fatigue Syndrome

Parenting Kids with FM/CFS

Teens'/Young Adults' Guide to FMS 

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Resources For Men

Men With Fibro. A central point for men to come, to share, to learn, and to grow with the disease

The Men's Zone. The site focuses on issues pertaining to men living with this disease. Wonderful information, feedback from other men, an online support group available.

Men's Zone Same Name as above, but different site.

It's A Guy Thing. Men with fibro.

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Must See Multipurpose Sites

Find information on more than 7000 diseases and conditions sites.

The Fibromyalgia Treatment Center. Good information and proceeds from their publications go to further research and education on Fibromyalgia.

Sleep Disorders. A comprehensive information guide about sleep disorders. Descriptions, symptoms, causes, treatments of various sleep disorders like sleep apnea, insomnia, snoring, restless legs and narcolepsy.

The Lyme Disease/CFS/FM/MCS/GWS Information Pages established in 1997, have
been created, with love, for you. These diseases are not of just your muscles, your immune system, your sleep dysfunction, your hormones, yournutritional deficiencies, or your intestinal system: they constitute a
cluster of symptoms that involve every system of your body and no one drug will work. My new job is to update the site frequently with peer-reviewed research on all these diseases, their dramatic
overlapping, the various modalities and rationales for the various treatments, and the latest news on how Lyme Disease is being found in 80-90% of our tested CFS/FM patients. Gratefully, my FM remission begun in 1997 remains in effect. Marilyn Kerr RN

Fibro-Friends Support Group. Information on fibromyalgia syndrome (FMS), chronic fatigue syndrome (CFS, CFIDS), myofascial pain syndrome (MPS) plus Forums for sharing experiences, treatment methods, coping techniques, etc New!

Conditions and Diseases Health Directory. Find sources for many conditions, including organizations, care providers, support groups and medical information.

U.K. Fibromyalgia Resource. The home of the FaMily ezine-The UK's leading monthly resource for FM
sufferers  Email family@UKFibromyalgia.com Telephone +44(0) 1202 259155 Mobile 079 79 79 43 91
Fax +44(0) 870 1693701

Mary Ellen Copeland's "Mental Health Recovery" site

Fibromyalgia... Your World Can Change
Rochester Hills MI Contact Person Jeff Wirth at   jwirth@bodybewell.com The Wellness Center by BODY BE WELL provides a New Integrative Approach to individuals with Fibromyalgia, Chronic Fatigue and Overlapping Conditions. Your World Can Change.

Moira's Canberra Fibromyalgia and Chronic Fatigue Syndrome page  (Australian Resource)

Our FM-CFIDS World Organization

The Chronic Pain Forum. We provide a resource and service to those with Chronic Pain from any cause, caregivers and Professionals. The website also has information about another list that we moderate for those with a specific kind of chronic pain--Headaches. We have two email lists for Chronic Pain in general: The Chronic Pain Forum and the Chronic Pain Forum-Chat and details about each list are available on the website.

Arthritis Insight is owned and operated entirely by people with arthritis. Arthritis Insight covers the facts of arthritis, treatments and medications.

We Move Restless Legs Syndrome (RLS) information.

Fibromyalgia: Resources for Families  Information and resources catering to the family and friends of someone diagnosed with fibromyalgia syndrome.

Invisible Disabilities Advocate (The) Do you have troubles explaining that even though you may LOOK good, you do not FEEL good? IDA provides links, support, articles, a booklet and more!

Fibromyaglia, fibrofog and dissociation Frank Leavitt, Ph.D.  fleavitt@rush.edu Here is an informative website entitled Fibromyalgia, Fibrofog and Dissociation that may be of interest to those who experience a blend of forgetfulness and brain fog.

Overlapping Disorders

Kealalaina's Fibromyalgia Page

Forum Fibromyalgia

Fibroworld

Listening to CFIDS

Resource Site for Fibromyalgia Survivors

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Education/Research

Co-Cure CFS and FMS Information Exchange Home Page

CSSA: Nancy Solo is Founder and President of The Chronic Syndrome Support Assn., Inc. (CSSA), a 501(c)3 non-profit corporation dedicated to furthering awareness of chronic syndromes. CSSA publishes a free pamphlet for public distribution. The Chronic Syndrome Support Association, Inc. 801 Riverside DriveLumberton, NC 28358-4625 USA (910272-0590 email: nsolo@cssa-inc.org website: http://www.cssa-inc.org

Remedyfind P.O. Box 30324  Santa Barbara CA Contact; Brett Hodges  bhodges@remedyfind.com 
Remedyfind is a non-commercial, unbiased (non-sponsored) international site where FMS patients rate and review the effectiveness of the treatments they have used. This site is an asset to folks looking for treatment options.

eFibro.com Has archived a huge amount of data with regard to developments in Fibromyalgia  and have put it on
CD-Rom. Sign up to have this sent to you FREE OF CHARGE - no obligations whatsoever.

CFIDS/Fibromyalgia Self-Help Program   Bruce Campbell  cfids_self_help@yahoo.com
We are a non-profit organization that offers low-cost self-help courses over the Internet and other resources for people with CFIDS, fibromyalgia and related illnesses.  We teach scientifically-proven coping strategies in a structured, supportive setting.

HealthNewsFlash makes it easy to perform on-going research on any medical topic. By joining, you can set searches to scan reliable news sources, and email you the results! As well, you gain access to our other features including a searchable archive, medical fact books, directories, online communities (This is a wonderful service, but you do have to subscribe to it for $35.00 a year)

American Autoimmune Related Diseases Association medical information page

Reflex Sympathetic Dystrophy Syndrome (RSD) NINDS Reflex Sympathetic Dystrophy Syndrome Information Page

Web MD

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Organizations and Healthcare Professionals

Devin Starlanyl. Researcher and co-author of the  Fibromyalgia and Chronic Myofascial Pain 2nd Ed: A Survival Manual with   Mary Ellen Copeland. Devin was a physician before FM/CMP attacked. She is now on the cutting edge of research and shares it all with us via the website and her publications, in a way the lay person can understand.

CFIDS Emergency Relief Services. Mission Statement: To alleviate the suffering from financial emergencies primarily among people with CFIDS, who, having no recourse otherwise would have to endure hunger, homelessness and medical deprivation. Tax I.D. 63-1155-572

North Carolina Chemical Injury Network The North Carolina Chemical Injury Network (NCCIN) was founded because there was no North Carolina organization that was dedicated exclusively to providing support for NC chemically affected people. NCCIN is a Organizing effort in Progress.

The Atlanta Pain Relief Center - A Center for Chronic Intractable Pain and Fibromyalgia-Chronic Fatigue Immune Dysfunctional Syndrome (FM-CFIDS)  Serving Atlanta and Fayetteville, Georgia. Tel: (770) 632-7592

A Physician's Guide to Fibromyalgia Syndrome, by: David Nye MD  The Physician well known to those on Fibrom-L as one who has dedicated a great portion of his weekly schedule to answer the "FMily's" questions.  From his website: "FMS is a common, chronic, and if untreated, often disabling disorder of unknown etiology associated with neuroendocrine and immunologic changes and disordered deep sleep. Most patients can be helped with a combination of medication, exercise, and maintenance of a regular sleep schedule."

Mind Body Digestive Center  80 Central Park West  New York  NY 10023PHONE:  212 712 0494
FAX:   212 787 0983 CONTACT_PERSON:  Charles Gerson, M.D. EMAIL_ADDRESS:    info@mindbodydigestive.comWe are a team of a gastroenterologist and clinical psychologist interested in helping patients with functional bowel disorders. Our current focus is Irritable Bowel Syndrome.
Our treatment protocol looks at the experience and meaning of having IBS in a person's life. We are concerned with how the mind and the body are linked, including IBS symptomatology, family background, current relationships and ongoing sources of life stress.

Center for Musculoskeletal Pain Research  PO Box 100221 Gainesville  FL 32610-0221 352-265-8901
FAX:   352-392-8483   Mackensie W. Soto   sotowm@medicine.ufl.edu Our group of researchers is dedicated to the study of pain in Fibromyalgia. We have identified abnormal spinal cord pain processing (wind-up) in Fibromyalgia patients. We also test the effectiveness of medications that decrease the pain sensitivity of Fibromyalgia patients

MedSupport FSF International

Oregon Fibromyalgia Foundation

From Fatigued to Fantastic

ChronicIllnet

Ramon Vallarino, M.D., P.C., 119 70th Street, Brooklyn, NY 11209, (718) 680-7229, Fax: (718) 680-0489 - Board certified physiatrists specializing in musculoskeletal, orthopedic, neurologic, sport-related, and occupational rehabilitation. This practice includes physical therapy on site supervised directly by the physiatrists. Also included is electrodiagnostic evaluation of peripheral nerve and muscle via nerve conduction studies and electromyography. English and Spanish is spoken in every office.

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Spirituality and Healing

The Wellness Train

Rest Ministries, Chronic Illness/Pain Support Serves people who live with chronic illness or pain, caregivers and churches, through programs and resources in a Christian environment, including newsletters, daily devotionals, chat and Bible studies. We currently have over 1000 hours each month being donated - all visitor to our site who live with illness or pain and help us continue our outreach through prayers, encouragement, coordinator positions, etc..

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Sleep Help

Sleepdex. A non-profit informational site dedicated to raising awareness of sleep issues.

The Sleep Site Sleepiness, sleep apnea and other sleep-related problems threaten the health, safety and productivity of millions of Americans who do not even realize they are ill. Correction of these problems can play a key role in alleviating fibromyalgia and chronic pain syndromes. Traditional medicine had focussed upon the two-thirds of our lives when we are awake, and the recent advent of sleep medicine is vital to health. The Sleep Site provides answers.

National Sleep Foundation

Sleep Deprivation. Types of Sleep Deprivation , Behavioral, Physiological, Neurochemical, Sleep Deprivation Therapy, Research techniques in animals, References, Definitions and more.

REM (Rapid Eye Movement) versus SWS (Slow Wave Sleep) Sleep Deprivation

Types of Sleep Deprivation

Sleep Stages

Delayed Sleep Phase Syndrome

The Apnea Patient's News, Education & Awareness Network - an engaging, interesting, and informative site for information about Obstructive Sleep Apnea (OSA) for:
Persons who have been diagnosed with OSA, family members of persons with OSA, those who are looking for information about OSA, those who should have a greater knowledge of OSA, those interested in increasing awareness of OSA and other sleep disorders

SleepNet - Everything you wanted to know about sleep disorders but were too tired to ask

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Medication Information

FMS Community Medication Page

Resources for free or low cost medication.

Neurontin-L: Since 1998, Neurontin-L, a private email list, has been in operation specifically for folks using Neurontin for "off-label" purposes. To join, please write to neurontin-l-request@maelstrom.stjohns.edu with a short explanation of your interest in joining the group. Please include your first and last name (or initial).

Neurontin FAQ page (last update May 24, 2001)
To talk to others interested in using Neurontin in their therapy routine, join an email support group dedicated to using this therapy. Neurontin-L: Since 1998, Neurontin-L, a private email list, is specifically for folks using Neurontin for chronic pain and mood disorders. To join, please write to <a href="mailto:neurontin-l-request@maelstrom.stjohns.edu">neurontin-l-requ
est@maelstrom.stjohns.edu</a> with a short explanation of your interest in joining the group. Please
include your first and last name (or initial)

GUAI-SUPPORT Guai-Support offers online support and information for people with fibromyalgia who are using Guaifenisen. Whether you decide to subscribe to the Guai-Support listserv or not, you may find the information and resources here helpful. Guai-Support is a place where we have the opportunity to share info that will benefit each other.

Anti-Depression Drugs known to be effective in treating Fibromyalgia.

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Newsletters

The U.K.s Monthly Newsletter. The UK's leading monthly resource for FM  sufferers  Email family@UKFibromyalgia.com Telephone +44(0) 1202 259155 Mobile 079 79 79 43 91 Fax +44(0) 870 1693701

AFSA Update: Non-profit corporation which supports education and current research concerning FMS and related disorders. The American Fibromyalgia Syndrome Assoc., 6380 E. Tanque Verde Rd., Ste D, Tucson, AZ 85715-3822. Phone: 520-733-1570.

Chronic Pain Clearinghouse Newsletter.   News and information about living with chronic pain. pat95471@yahoo.com 707-869-5971 web: http://www.myspirit2.homestead.com

CFIDS Chronicle. The CFIDS Assoc. of America, PO Box 220398, Charlotte, NC, 28222-0398. Phone: 800-442-3437.

Fibromyalgia Network Newsletter (quarterly publication)

"Fibromyalgia Frontiers". Put out by the National Fibromyalgia Partnership (NFP) 140 Zinn Way, Linden, VA  22642-5609, toll-free phone 866-725-4404, fax 540-622-2998,   website http://www.fmpartnership.org/, email to mail@fmpartnership.org, contact person is Tammy Liller.

The National Fibromyalgia Partnership publishes a  quarterly journal called "FIbromyalgia Frontiers" which is a benefit of membership along with a comprehensive New Member Packet and discounts on audio and videotapes, helpful info packets and admission to seminars/workshops/conferences.   , Inc. (formerly the Fibromyalgia Assoc. of Greater Washington) PO Box 160 Linden, VA 22642 Toll-free phone:  866/725-4404 Toll-free fax:  866/666-2727 Website: www.fmpartnership.org Email: mail@fmpartnership.org

Chronic Fatigue Syndrome Newsletter.

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Running a Support Group

Do you run a local support group? Do you feel frustrated, need help, advice, just someone to listen and maybe share? Need help getting volunteers, funding, and more? This site is for you. Let's help one another.
You must be a support group leader or co-leader to belong. There is to be no soliciting and no flaming.
To Join: SGLSG-subscribe@yahoogroups.com

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International Resources

Association de la Fibromyalgie de l'Estrie  One of the more interesting websites on Fibromyalgia, this one is in both French and English!

Devin Starlanyl's International Resource Page. Find Australian, Danish, French, German, Swedish and U.K. Resources and information.

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Financial Help New!

Modest Needs. An organization funded from donations only. They help people in trouble with limited resources. To apply for help or to contact them to make a donation, visit them at Modest Needs.

Temporary Assistance for Needy Families (TANF)

 

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