Survey - You have a voice in FDA research

Discussion in 'Fibromyalgia Main Forum' started by Achy-shaky, Jun 10, 2003.

  1. Achy-shaky

    Achy-shaky New Member

    Just got this from NFA's newsletter - please take the survey mentioned at the end...

    Fibromyalgia has a Voice in the FDA
    A step toward advancing the medical research that is important to fibromyalgia patients

    by Lauren Glick

    National Fibromyalgia Association (NFA) President, Lynne Matallana has been invited to join the United States Food and Drug Administration (FDA) Advisory Committee as a representative of the fibromyalgia community. “This will give us the opportunity to communicate to the committee what is important to people with fibromyalgia,” stated Matallana.

    The FDA is looking to the fibromyalgia community to assess FM research efforts in the medical field today and in the future. The committee is interested in evaluating issues of prevention, exploring treatment intervention strategies, and becoming aware of the unmet research needs of fibromyalgia patients. Having a greater understanding of what people with fibromyalgia find to be beneficial, in the form of treatment, and what symptoms are not affectively treated will facilitate the research process allowing the FDA to better provide treatment solutions for fibromyalgia.

    The Advisory Committee will be closely evaluating scientific data, technical information, and FM research studies. Issues of prevention and modality (drugs versus alternative therapies) will be examined. The board will assess clinical trials – evaluating criteria, patient participation, and desirable measurable techniques. In addition, current treatments will be analyzed, and multi-symptom treatments will be explored. The hope is to encourage affective research, monitor research techniques, and identify unmet needs.

    The NFA has created a survey in order to better identify treatment and research expectations of the FM community. “The survey response rate is critical. I will offer the committee my knowledge from my experiences and research, but fibromyalgia affects each individual differently. It is more important for me to present the goals and expectations that the FM community has as a whole,” stated Matallana.

    Your voices will be heard, and we will work to have your needs met. Please fill out the survey using the link below to share your FM experiences. We will need your responses by June 18, 2003 in order to present them to the board on June 23, 2003.

    This is a chance to let our voices be go to the a search for "fmaware" in your favorite search engine - the first hit should be the NFA website. The above mentioned article should be a link on front page - there will be a link to the survey.

    Hope this will lead to good things for us!!

    [This Message was Edited on 06/14/2003]
    [This Message was Edited on 06/14/2003]
  2. Applyn59

    Applyn59 New Member

    I just took the survery.
    Some questions were difficult to make decisions

  3. Ishy75

    Ishy75 New Member

    I also took it.


    NATUREGIRL New Member

    I also took the survey and these autoimmune issues need to be addressed soon. There are more and more people having the same symptoms and whatever is causing all this seems to be getting worse.

    This could be an issue that could involve all of us someday the way it seems to be going. Who knows, it could be something we are drinking or eating.

    Almost everyone I see anymore seems to look tired or is it just my imagination? I wish everyone here the best of health and hang in there. This is a great support group.

    Love, Suzanne
    [This Message was Edited on 06/10/2003]
  5. Achy-shaky

    Achy-shaky New Member

    The survey is only 22 questions and doesn't take too long...unless like many of us, it's hard to decide things like which medicine you take is the most important. Also be prepared to answer the following last question which I think is very important:

    Is there any new treatment that you have heard of that you would like to see research concentrate on?

    Even if you don't know of any, I'm sure you can comment on what you'd like to see research on.

    Thanks to all who have done survey so far. This is our chance to put in our 2 cents worth so everybody else needs to do it too!

    Bless you,
    [This Message was Edited on 06/11/2003]
  6. kar1953

    kar1953 New Member

    How do I get to the web site to take the survey? I tried everything but cant even get to the FDA site.

    Hey I never said I was computer saavy! :)

    Take care.....Kathi
  7. Applyn59

    Applyn59 New Member

    the web for fmaware and you will find it.
  8. pearls

    pearls New Member

    I took it, too.

    Here's how to find the survey:

    1) Go to a search engine.

    2) Type in fmaware.

    3) Look for the article mentioned in the first letter.

    4) If you don't find it, try another one of the websites you bring up with your search.

    5) When you find the article, click on the survey. You'll find the Internet address for it at the end of the article.

    Good luck,
  9. Achy-shaky

    Achy-shaky New Member

    Thanks for adding directions on how to find survey.

    Hope more people can fill it out.
  10. kar1953

    kar1953 New Member

    for directions to the survey. I'll get on it tomorrow.

    Take care.....Kathi
  11. RLCarter03

    RLCarter03 New Member

    Took the survey...sure hope it helps!!!
  12. Achy-shaky

    Achy-shaky New Member

    so I'm bumping this up so more will see it.
  13. kmelodyg

    kmelodyg New Member

  14. Dolphin82

    Dolphin82 New Member

    Hi its dolphin here i have just gone on to fmaaware and was unable to get on as page not found,any,more links at all would be really interested in communicating views across to do with fibromylagia.As i think with having this u need a lot of support and poeple to listen to you with regards to treatmentect what works and what dosnt..........?

    Dolphin 82