Internet Resource Links

 

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MedWatch

The FDA Safety Information and Adverse Event Reporting Program

 

Discussion Groups

CFS-Care
This is an e-mail discussion group for caregivers of people with CFS and other illnesses. To receive info, or to join, e-mail your request to CFScare@mindspring.com. There is also an unrelated website exists for caregivers,
Chemical-Illnet 
Understanding how everyday chemicals can affect your health allows you to take pro-active steps to put an end to the poisoning... and it *is* poisoning. Learn how to remove toxins from your home, find alternatives for toxic household cleaners and pesticides, learn how to identify hidden ingredients in household products, and get on the road to better health. Learning how to detoxify our lifestyles means a healthier planet for all forms of life. This List is moderated. Please direct all questions to chemxpose@aol.com. Please read welcome message carefully before posting to the list. To subscribe send a message:

To: Listserv@home.ease.Lsoft.com
Subject: Subscribe
Message: Subscribe chemical-illnet yourfirstname yourlastname

Yahoo Groups 
Enter CFS or FM in search window to locate dozens of email discussion groups.
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Lab Websites

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Miscellaneous Links

  • Alison Hunder Memorial Foundation 
    Information on CFIDS/ME and conference reports. Good links to other sites.
  • American Gulf War Veterans Association 
    GWS, Mycoplasma, CFIDS, FMS. Information and links.
  • CFS Inform 
    By Mette Marie Anderson, M.D. Extensive information on CFIDS, FMS, MCS, an GWS
  • http://www.cfsresearch.org 
    a website providing research articles on Chronic Fatigue Syndrome, Mycoplasma and Chlamydia +the announcement list CFSResearch-Updates
  • Chronic Relief Publications 
    Anyone who sends a letter to their local paper AND LETS ME KNOW what paper (CRPublica@aol.com or ChronicRelief@aol.com) will get *at least* two other letters sent to that paper to support them, hopefully spurring the newspaper to print them all.
  • Chronic Syndrome Support Association 
    CSSA is a 501(c)3 non-profit corporation dedicated to the dissemination of information on the chronic syndromes Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia Syndrome (FMS), Gulf War Syndrome (GWS), Multiple Chemical Sensitivity Syndrome (MCS) and Myofascial Pain Syndrome (MPS), that affect millions of people worldwide. These conditions, which can be severe and debilitating, have no known cause and no cure. They are little recognized and accepted, even by many in the medical profession. CSSA publishes a free pamphlet for public distribution, as well as a quarterly newsletter by subscription.

    The Chronic Syndrome Support Association, Inc.
    801 Riverside Drive
    Lumberton, NC 28358-4625
    Phone: 910-272-0590
    Fax: 910-272-0904
    E-mail: nsolo@cssa-inc.org

  • CINDA 
    Chronic Immune and Neurologic Diseases. This site has information on CFIDS, FMS, MCS, GWS, MPS.
  • Michael Goldberg, M.D. 
    (CFIDS, ADD, ADHD)
  • Journey of Hearts 
    This is a web site for anyone that has experienced a significant life style change. It is well known that losses and changes can impact a person's life - forever.
  • Lyme Links 
    Over 6.5000 categorized links to Lyme information.
  • Lyme Disease Network 
    Information and links.
  • Navigating the Body: Expressing Invisible Pain Through Art 
  • Words of Wisdom
    Words of wisdom can often help us reflect, or simply remind us that we're not alone. Each week we'll provide a different quotation that might help comfort and inspire you. 
  • Work, Income, & Chronic Illness: A Free Workshop: Reinventing Ourselves 
    An online workshop for people who are physically challenged with a chronic illness that renders them differently-abled. Size is 25 participants, cost is none, time is 8-10 weeks, 2-3 hours a week. Email TrainTheBrain@aol.com for more info. 
  • The Writers Connection
    Devoted to helping Writers to get Published on the Web, and to assist Publishers in locating the kind of Writers, and Articles, which they need to add content to their e-zines or to their websites. 
  • Y2K Health and DeTox Center  

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Navigating the Body:
Expressing Invisible Pain Through Art

Ths amazing website, www.navigatingthebody.com, is not to be missed! If you are not online, it's worth seeing at a friend's or a library. Share it with family members and friends; they may catch a glimpse of what living with chronic pain and illness is like. It consists of three pages, rendered by a talented graphic artist. Each wonderfully unique page depicts a different woman's experience of FMS or CFIDS/FMS. The words and imagery are incredibly beautiful and moving. Domino's section incorporates x-rays, representing "all the medical stuff the ways in which docs look inside us and limit us to images and tests. X-rays are harsh images, though beautiful. There is a dualism in this. I am fascinated by the results and images of tests, but I hate how I end up feeling like my body is an "it or something". Rose's page seems to express lost intimacy and disconnectedness. 

This site also addresses the feeling of invisiblity experienced by so many, and the difficulty of validating something we can't see or hear. Susan, the site creator, says, "Folks with chronic pain have to fight to be understood and believed. More belief equals greater freedom of movement, whether in our personal relationships or with society at large." Domino echoes these sentiments, saying, "I think there is a certain ease that comes with being understood. I find that with friends or lovers, the more they understand what I live with and how it affects my life, the easier it is for me to just "be." It is the quest for ease to my own psyche that often drives me to help others understand. Bringing the inside out is about moving in the world and in our bodies with as much fluidity and ease as possible. I know that it is hard with FMS or other chronic pain. But I do think that honesty and telling the hard truths really does help in the long run." 

This is a truly powerful work. Check it out and then be sure to share it with others. A transcript of the WebMD chat is available at my.webmd.com/member/532422/. 

This information came from our January 2000 newsletter.

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