Everyone Please Read CFS Advisory Committe Charter Renewed

Discussion in 'Fibromyalgia Main Forum' started by Lolalee, Sep 5, 2006.

  1. Lolalee

    Lolalee New Member

    I just received an email with the following information from CFIDS Association of America. They are asking for people like us with CFIDS to send a letter telling how CFIDS impacts our lives. I sent my letter. If you are interested in doing this and supporting this effort, please go to their website listed below.


    Advocacy Pays Off!!!!

    CFS 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 today, 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 http://www.hhs.gov/advcomcfs/index.html. 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 http://www.cfids.org/advocacy/CFSAC.asp. We’ve recently updated the entire advocacy section of the Association’s web site, so please visit and return often for new features!

  2. findmind

    findmind New Member

    Too bad they have never done one single thing that helps us.

  3. Lolalee

    Lolalee New Member

    I'm not waiting for them or anyone to come up with a cure. I am focusing on my own ways to improve my health.

    However, some of us are always asking for people to understand and accept this illness is real.

    I will not lose hope that advocacy will pay off. I think this is a good opportunity for this organization to hear from those of us who are suffering. I will encourage anyone who is trying to educate the public and find a cure.

  4. Lolalee

    Lolalee New Member

  5. Lolalee

    Lolalee New Member

    I've decided to bump my post again. I know we are all ill and suffering. I am housebound for the first time since I've had this disease (over 8 years). I'm in the worse and longest flare ever. Because of this and in spite of this I am using what little energy I have to write letters. If we want our voices to be heard, we have to speak!!

    PamJ and 1Sweetie have written similar posts in an effort to motivate all of us to unite and take action. Let's tell these organizations just what we go through, how our lives have changed, how little recognition we've been getting.

    It's really not hard to do and it really can make a big difference.

    Thanks to all.

  6. 1sweetie

    1sweetie New Member

    If we do nothing we deserve nothing. I have always believed that if you want anything done, you have to do it your self or at least try.

    We (or most) of us are not physically capable to do the things that need to be done...but how can you not support those that are trying to help me and YOU?

    What have they done you ask....what have you done I ask???

    Please join us and let them hear one voice, not a voice divided.
  7. musikmaker

    musikmaker New Member

    I agree we should participate. I am going out to the site now. Thanks for the post.
  8. findmind

    findmind New Member

    I'm sorry, I didn't mean to be so mean in my post; was a baaaad day, I'm sure.

    You ask what I have done.

    I joined a large (over 120) member support group in 1994. I became a rabid advocate, as I had been sick for 7 years already, and almost died from mycoplasma pneumonia affecting my lungs.

    I became support group leader for 2 years, which almost killed me again. I took part in massive letter writing campaigns, telephone calls to my representatives in Congress and letters "telling my story" to national groups.

    I was on 4 TV shows, one I was allowed to talk the entire 1/2 hour and was on a call in show with a national cfids author. After these and 2 radio talk shows, I personally took over 300 telephone calls from my metro area and talked at length to every single person.

    I have letters from everyone from Hillary Clinton on down to our local city council. I have participated in every campaign the CAA held up until several years ago when I gave up. Nothing has changed in 18 years.

    We still call a serious illness Chronic Fatigue Syndrome. We still have no diagnostic test. We still have people say to us, "Oh, I get soooo tired, too!" We are still being discriminated against by the health care system who do not want to deal with us as they can't just prescribe a single pill and come back in 6 months.

    We still have people who get CFS and no help understanding or dealing with the illness, except through boards like this; thank God for them!

    I will not thank Leavitt as there are 11 important recommendations to the DHHS that were not even acted upon in 4 years of the CFSAC (Previously the CFSCC and before that the AACFS). No significant changes were made during the existence of these committees, no accomplishments; everything got "tabled" while people who should have had the proper information knew nothing about what they were doing.

    Now, all that being said, I believe Rich Carson is providing information that will be valuable in the search for a new name; however, I will not vote for a new name because nobody really has the authority to select one except the CDC, or the NIH.

    Please forgive me if I feel that many need to do more research before they think another campaign of the people affected with CFS will really do anything: I believe the CDC will do what they want to do, when they want to do it.

    To quote the latest issue of the National CFIDS Association, ..."The newly joining members are ones that have been carefully vetted by both the government and one group that has strong ties to the government as well as one that has strong ties to a company seeking FDA approval of a drug."...

    One must understand the history of CFS in order to make judgements about others who have been in the fray for many, many years. A good start is "Osler's Web" by Hilary Johnson. It takes a lot of energy to read this book, but I think it is the best energy we can spend.

    Thank you, lolalee and sweetie1 for this discussion; such things are important, and I am sorry I took so long to respond. I've been very sick, but you deserve answers to your questions, and I thank you for asking.


  9. 1sweetie

    1sweetie New Member

    Thank you for your response but most of all THANK YOU for all that you have done for us.

    I can not imagine the effort and toll it took on your body to do all the things that you did. I feel the pain and anger in your post and I have empathy for your feelings. How disappointing it has to be to give it your all and to feel that you have not received anything in return.

    I do understand what you are saying and I know you speak the truth however, I have to believe that one day it will change. I need to believe that and I need to do something, no matter how small, to try to change the view of CFS/FM and to request that our government listen to us. I feel it is my duty to try just as you did.

    I also have to believe that because of all the effort and work on your part, you had to make a difference. Maybe you don't know it but I feel certain that you had to have an effect on someone.

    I know we are so far away from where we need to be, but isn't it just a little better now? We are getting some exposure and that is a start. That exposure is coming because of people like you.

    Again thank you for sharing with us your experiences and for your efforts.

    I hope you feel better soon.


  10. cherylsue

    cherylsue Member

    My CFS doctor is on the advisory committee.. He has been prescribing a lot of RX's for me, but I can't seem to tolerate them. However, he is helping me with my medical leave and disability. Hopefully, it goes through. I feel he has more weight than just the average PCP.

    Essentially, I think we need to listen to our bodies and do what we sense is healing our bodies, a diet, a supplement, or lfestyle.

    Somewhere I read that they hope to have some kind of treatment for CFS in the next 3-5 years, and it is connected with the gene study. It was rather vague.

  11. Lolalee

    Lolalee New Member

    After I read your post, I had some thoughts of how to respond to you. Then I read what 1Sweetie wrote and thought...she "took the words right out of my mouth". I am sorry that you are so sick. I can't compare my illness to yours, but this is the worst I have ever been so I know how it feels to be very ill. I know it must have taken so much energy to write all the information that is contained in your post and I appreciate it.

    Findmind, I do sense a lot of disappointment and despair in your words. I am proud of you and I thank you for all the work you did for us. I know I couldn't do what you did. All I can do is write a short letter. "Osler's Web"...no way could I get through that book. I've tried twice and can't wrap my brain around all that information.

    I want to echo 1Sweetie in that I do believe that you reached people and that all your work was not in vain. More than one person knows more about this illness because of your work. Like I said, I can't do what you did. I don't think many of us can. But I do think that things are changing. I do think that the majority of us have not tried to have our voices heard.

    It seems like everyday someone posts a heartwrenching (sp?) post about being misunderstood or abused because of their illness. It's a pity that venting doesn't change the situation. But, maybe writing a letter telling how this illness has changed my life will reach someone and change one mind, one heart.

    I would probably feel as you do if I had done all that you did. But I haven't done anything to get the word out about FMS and CFIDS.....until now.

    I pray that you feel better and I have to hope that things will change for the better for all of us.


  12. Lolalee

    Lolalee New Member

  13. findmind

    findmind New Member

    Thank you for you very kind responses. It was very generous of you all.

    I loved what I was doing for the cause while I was doing it and the service to others was very rewarding. I wish I could have continued to now. I miss it a lot; in fact the SG folded after 2 more years, when that SG leader tired also.

    I will say this: I wish you all the very best in this campaign for a new name and understanding from the medical and non-patient community.

    You guys (gals!) are right; the fight must go on, and I praise you for getting into it, and pray you will not be disappointed. What you are doing is valuable, and all the "newbies" here who wonder what in the world we are talking about might get inspired to help you...I sincerely hope so.

    You're right, I am sad that I saw no tangible results from so many efforts by so, so many, and as you say, it showed in my post.

    Cherylsue, I'm glad you have a doctor who is helping you with your disability; it is so important to have a champion for your cause! I just feel so sad that we are still at this point that you need a doctor on the advisory committee in order to get the support you need; all doctors must be trained to support us.

    Thank you for the compassion and understanding. I'm not going to ever post anything but encouragement for you "soldiers" who are carrying the torch forward for us oldsters! God Bless You.


  14. Lolalee

    Lolalee New Member

  15. kholmes

    kholmes New Member

    Wow; I had no idea you did so much as a CFS advocate. I sure understand your frustration and your belief that not much has changed in terms of the CDC and the NIH.

    I've decided to really educate myself on the history of this illness. Dorothy Wall's ENCOUNTERS WITH THE INVISIBLE had some excellent information. I'm about 100 pages into OSLER'S WEB, and I can't put it down.

    But don't you think that there has been great progress in some areas? For example, people with CFIDS are much more likely to win disability benefits from Social Security. I just won in February, on my first appeal, without having to hire a lawyer. In the mid-80s or even the mid-90s, this would have been next to impossible.

    I also believe that the advocacy you have done, as well as the advocacy others are doing now, can tremendously benefit future generations, even if we see little change now.

    [This Message was Edited on 09/09/2006]

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