Discussion in 'Fibromyalgia Main Forum' started by 1sweetie, Sep 7, 2006.

  1. 1sweetie

    1sweetie New Member

    We can make a difference. Will you help??? Please check the CFIDS of America website and check out the GRASSROOTS section.

    It gives you the tools and makes it easy for us to make a difference in how we are treated.

    If we have time to spend time on the board, we can put in our zip code and send an email to your government rep. and to those that have put articles in their magazines.


    The much-anticipated article about chronic fatigue syndrome is in the September issue of O, the Oprah magazine, which is on newsstands now. This magazine has a total audience of 16,290,000. Investigative reporter Mary Fischer interviewed Laura Hillenbrand, author of Seabiscuit; Michelle Akers, world-champion soccer star; Kim McCleary, president and CEO of the CFIDS Association; Anthony Komaroff, MD, of Harvard Medical School; and Suzanne Vernon, PhD, of the CDC for this article. The CFIDS Association helped inform Fischer about the illness and helped connect her with Hillenbrand, Akers, Komaroff and Vernon. The resulting article focuses on the impact of CFS on people's lives and on the research indicating there is a biological basis for CFS and, for the most part, is balanced. "But tired or supertired, the point is," Fischer says, "it's not all in your head."

    You can thank the editors of "O" by clicking "GO" prompt on the top of this page -- our form letter makes it quick and easy to do so!

    In addition to the O article, there has been other significant coverage of CFS and the public awareness campaign in recent weeks. Below is a sampling of some of the media coverage that has been circulating in magazines, radio, television, newspapers and online publications during the past three weeks alone. Be on the lookout in the coming months for more stories on CFS, and as always, if you see a story please mail us a copy or e-mail

    For the July/August issue of Ms. magazine, well-known CFS expert Nancy Klimas, MD, discusses new research showing how the disease may be connected to abnormalities in the immune system, brain and endocrine regulation and outlining the dire need for more research funding and better informed health care professionals.

    Minnesota Public Radio's Midmorning show interviewed Dr. William Reeves of the CDC, Minnesota physician Dr. Allan Kind and award-winning author Laura Hillenbrand. Hosted by Kerri Miller, the hour-long show offered an informative look into the illness while bringing attention to the national public awareness campaign and the traveling photo exhibit that was displayed at the Mall of America in Minneapolis that week. The show was aired on 11 Minnesota radio stations. 8/09/06.

    KAXE Radio's "Morning Show" in northern Minnesota interviewed Dr. James Jones of the CDC and CFS patient Mary Baltich to provide both a scientific and a personal look at CFS. 8/17/06.

    WCCO-TV, the Minneapolis/St. Paul CBS affiliate, reported on CFS and the traveling photo exhibit that was displayed at Mall of America. Reporter Sue Turner interviewed CFS patient Joanne Brayden and CFIDS Association staff member Tiffany Stovall. 8/06/06. In conjunction with the TV report, WCCO also posted a story on their website. 8/07/06.

    The August issue of Harvard Health Letter features a Q&A on CFS. Dr. Anthony Komaroff answers a question about what help there is on the horizon for CFS patients. This publication goes to 180,000 subscribers.

    Greenstone Media Network did a 15-minute segment on CFS for their syndicated radio show called "Women Aloud." 8/15/06.

    For the Melrose Free Press in Massachusetts, reporter Carol Brooks Ball reported on CFS patient Pam Gobiel and her 11-year-old niece, who has launched a web-based business as a way to help find a cure for CFS. 8/11/06.

    Reporter Janet Wetzel of the Cincinnati Enquirer wrote about CFS patient Joan Shivers. 8/09/06.

    In Colorado's the Vail Trail writer Caramie Schnell reported on 18-year-old CFS patient Lindsey Simmer. 8/16/06. published a story in its Fibromyalgia and Chronic Fatigue Syndrome section by Karen Richards titled. "Are You a Victim or Victor?"

    On there is a newly posted article called "Fatigue: When to rest, when to worry" by Mayo Clinic staff. 8/16/06.

    "Joint Flexibility May Offer Insight into Chronic Fatigue Syndrome" by Amanda Gardener of has appeared in the following publications: Health Scout, Health Central, Forbes, Food Consumer and Health Day.

    Take Action Now!

    C FS Advisory Committee Charter Renewed
    Thank Secretary Leavitt and ask him to act on recommendations

    We are delighted to announce that the CFS Advisory Committee has just been renewed for two years, authorized by Secretary of Health Mike Leavitt and effective September 5, 2006. The CFS Advisory Committee is an important forum for the discussion of health policy as it relates to chronic fatigue syndrome. It brings together 11 individuals appointed by the Secretary of Health with representatives from several agencies of the federal government. Such disease-specific committees are fairly rare and this one has been important to the ongoing coordination of federal research and education efforts, as well as providing CFIDS advocates with the opportunity to provide input to decisions that affect them. Thanks to all the advocates – including Lobby Day participants, grassroots advocates and 41 members of Congress – who wrote to Secretary Leavitt asking him to renew the charter.

    Thank Secretary Leavitt for continuing this important committee and ask him to take action on the Committee's past recommendations. Just follow the "Take Action" prompts to quickly and easily add your message to fellow advocates'.

    An October 16, 2006 meeting of the CFSAC is being planned and will be formally announced soon. For more information, visit the committee’s web site at Background information about the committee and links to reports on recent meetings, including the last one held on July 17, 2006, can be found at We’ve recently updated the entire advocacy section of the Association’s web site, so please visit and return often for new features!

    Take Action

    1 Compose Message

    Message Recipients:
    Secretary Michael O. Leavitt
    Michael O. Leavitt, Secretary for Health
    Delivery Method:
    Printed Letter


    Required text:
    (this text will appear at the beginning of your message)
    I am writing to express my appreciation for your renewal of the charter for the DHHS Chronic Fatigue Syndrome Advisory Committee. This committee is important to me, as it is to many others concerned about chronic fatigue syndrome (CFS, also known as chronic fatigue and immune dysfunction syndrome or CFIDS).
    Editable text:
    (edit or add your own text - 9209 characters left)
    <<Add a short paragraph here about how CFIDS has affected your life. Remember to delete this text before sending your message.>>
    Tip: Cutting-and-pasting? Save as plain text first.

    Required text:
    (this text will appear at the end of your message)
    I hope that you will take action on the past recommendations made by the CFS Advisory Committee and that its next meeting will help prioritize important research and education initiatives. I will continue to follow the work of the committee and your department in addressing the many crucial needs of those affected by CFS. Thank you for your efforts.
    Your Closing:
    Your Name:

    2 Sender Information

    This system requires that you provide your name and contact information. This information will not be used for any purpose other than to identify you to the recipient.
    Your Contact Information:
    Prefix (required by some officials)
    Select... Mr. Ms. Mrs. Miss Dr. Rev. Hon.





    These emails are so easy to send and will help our cause so much. Please go to the and go to the Grassroot Action Center.

    The directions are so easy and we can make the difference.

  2. Lolalee

    Lolalee New Member

    Sweetie, again I applaud your efforts to motivate everyone here to be pro-active. I just want to add that I agree that it is VERY EASY to write a letter on the CFIDS of America website. The letters are practically all written for you. All you have to add is a few comments on how this illness is affecting your life.

    It takes a few minutes...less time than most of us spend here reading and posting.

    I don't see how we can all get together and stage a march or anything that would require our physical presence. Writing a letter and having our voices heard would be the next best thing.I hope everyone takes a minute and realizes that we must unite if we want advocacy and awareness.

    Remember that story...I'm probably going to get it all wrong...but it was something like a man was trying to teach his family the value of strength in numbers. He gave each of his seven children a stick and told them to break it. Each stick was broken easily. He then gave them each another stick and this time he told them to pass all the sticks to him. They did. Once he had the sticks in a bundle, the father tried to break the bundle of sticks. He could not and neither could any of his children. There is strength in numbers!!! I'm sure someone will remember the story correctly, but I think my point is clear. We must stick together.

    Thanks for all you do Sweetie.

    [This Message was Edited on 09/07/2006]
    [This Message was Edited on 09/07/2006]
  3. 1sweetie

    1sweetie New Member

    That was a great story and it speaks the truth.

    It is so easy. I do not understand apathy. All of us say we want a change yet very few seem to want to take the time(and yes less time that it takes me to post on a thread) to do anything at all to force a change.

    Thank you for your support. I know you are not feeling well either. We just have to take advantage of "doing something" while it is in the media's attention.

    Would you start a thread with that story? It speaks volumes. It may help if you encourage the other members also.
  4. pamj

    pamj New Member

    I'm glad you posted the list of media coverage for those who are not on the CFIDS list.

    I can't tell you how thrilled I am to see the mention of the Melrose Free Press article again! So much recognition for something that started with a simple phone call to my editor. This story has now been seen all over the world, and that's my proof of what one person can do :)

    It feels good to know we can make a difference... and I'm continually motivated by the stories of the doctors who don't understand the illness, and the people who have been suffering in silence.

    Thanks for everything you're doing!

    hugs :)
  5. 1sweetie

    1sweetie New Member

    I could not agree with you more. I am so proud of you. Change you imagine if everyone that is affected would do something how much differnce it would make?

    You are shining example and I THANK YOU for what you did. I know my limititations but if I can type a note to you I can send emails and letters to people that count and then there is the phone.

    I also do not understand why everyone one is not a member of the CFIDS Association. They have made it so easy to participate and it makes me feel good. I did remember last night when I was trying to understand why there is so little participation that so many on this board has FM. I should have addressed that in my threads. I have both. But what helps one with CFS helps the person with FM.

  6. Lolalee

    Lolalee New Member

  7. Lolalee

    Lolalee New Member

  8. 1sweetie

    1sweetie New Member

    Thank you for your reply and support. As you said, we are due.

    I love Lolalee's's so true.

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