The CDC responded to my request......

Discussion in 'Fibromyalgia Main Forum' started by dojomo, Oct 16, 2002.

  1. dojomo

    dojomo New Member

    I wrote to the CDC asking for any statistical information pertaining to CFS........This was the simple answer they sent me this morning.



    E-mail message

    From: Date: Wed, Oct 16, 2002, 10:11am (CDT+1) Subject: FW: Data posted to form 1 of


    Thank you for your request, however, we don't collect data on chronic fatigue syndrome.



    -----Original Message-----
    From: NCHS QUERY
    Sent: Tuesday, October 15, 2002 9:42 AM
    To: NCHSED
    Subject: FW: Data posted to form 1 of

    -----Original Message-----
    From:
    Sent: Sunday, October 13, 2002 9:54 AM
    To: nchsquery@cdc.gov
    Subject: Data posted to form 1 of (Edited by Moderator)
    **********************************************
    ***


    So there you have it.......more invisible than you thought..The CDC considers this a serious condition, but doesn't keep numbers ..We need to come up with a way to show we are 1000's strong and want some attention !!!! any ideas? ......DJ

    [This Message was Edited on 10/16/2002]
  2. dojomo

    dojomo New Member

    I wrote to the CDC asking for any statistical information pertaining to CFS........This was the simple answer they sent me this morning.



    E-mail message

    From: Date: Wed, Oct 16, 2002, 10:11am (CDT+1) Subject: FW: Data posted to form 1 of


    Thank you for your request, however, we don't collect data on chronic fatigue syndrome.



    -----Original Message-----
    From: NCHS QUERY
    Sent: Tuesday, October 15, 2002 9:42 AM
    To: NCHSED
    Subject: FW: Data posted to form 1 of

    -----Original Message-----
    From:
    Sent: Sunday, October 13, 2002 9:54 AM
    To: nchsquery@cdc.gov
    Subject: Data posted to form 1 of (Edited by Moderator)
    **********************************************
    ***


    So there you have it.......more invisible than you thought..The CDC considers this a serious condition, but doesn't keep numbers ..We need to come up with a way to show we are 1000's strong and want some attention !!!! any ideas? ......DJ

    [This Message was Edited on 10/16/2002]
  3. BonBons

    BonBons New Member

    Why don't we all simply email the same question? Repetition might wear them out - what do you think? BonBons
  4. ohmyaching

    ohmyaching New Member

    This surprises me, I would have sworn I've seen/read statistics for CFS in articles quoted from them. Aren't they in charge of keeping track of these things? The last time I went to their website they listed FM on the disease list, but not CFS. Try the NIH. They had a little more info on CFS on their website although finding it wasn't so easy.
  5. BonBons

    BonBons New Member

    Better yet - let's pick a time and all call the same day and ask the same thing. They probably don't have email...Bon
  6. poodlegirl

    poodlegirl New Member

    Hi, that is a cold, straight forward reply isn't it. I can't see the CDC saying this is serious then not collecting data. They apparently don't consider it a disease, but more like just symptoms? maybe? Or is it too difficult to trace? My next question is off the subject of the CDC, but does anyone know of any actors/actresses, stars who have been dx'ed with Fm or CFS? Did Cher have CFS? Just curious if anyone "famous" does charitable fund raising work on this or is there a famous voice out there with this. Or is it an invisible disease?
  7. dojomo

    dojomo New Member

    Anyone can write to the CDC...Find their home page and than click "contact us"....The more they hear from us the better.......DJ
  8. dojomo

    dojomo New Member

    Good luck with obtaining a grant.. I'm feeling frustrated lately as you can imagine... statistics are so important in gaining recognition...in anything..... We have to start finding a way to collect and show numbers..... If there is over a million of us.....how come nobody knows it...and how can we let them know.?.....DJ


    ps......I CAN'T EVEN GET THE WEB MASTER HERE TO TELL ME HOW MANY REGISTERED MEMBERS THERE ARE on his board........can you help with this?.....DJ[This Message was Edited on 10/16/2002]
  9. sean

    sean New Member

    Mismanaged funds intended for chronic fatigue syndrome, nearly $13 million reported to have been spent on CFIDS research from 1995-98 was actually used for other unrelated projects. Article can be found with a Google search using the following: cfids+advocacy+scandal


    For cfc website URL sticking to rules is: cdc(dot)gov(foward slash)ncidod(forward slash)diseases(forward slash)cfs
  10. dojomo

    dojomo New Member


    This will blow your mind Sean......The Deparment of health and Humans services formed a committee of NO ONE to help us........Read below... They never met and will never meet because they selected people whose terms were expiring...so we are still at square one.....DJ   
     

    Advocacy Archives  Congressional Activities  CFSCC  Grassroots  Agency Activities         
    Advocacy Archives: Advocacy Alert  
    CFSCC Statement from Jon Sterling and Kim Kenney
    Advocacy Alert:  5/21/2002

    We join other advocates in expressing great frustration with regard to the dormant status of the Department of Health and Human Services committee on chronic fatigue syndrome. The most recent meeting of the DHHS CFS Coordinating Committee (CFSCC) was January 30, 2001, 17 months ago. At that meeting the Department stated its intention to form a CFS Advisory Committee, consistent with recommendations made by the General Accounting Office. To date, the new committee has not been formed and members of the CFSCC have not received any formal communication about a continuing role with the Department's activities on CFS.

    All but one of the seven federal representatives to the CFSCC have either left government service or have taken new positions within their respective agencies. Terms for four of the seven public members of the CFSCC have now expired. So, it is unclear whether it is even possible to convene the CFSCC while we press for DHHS to convene the new advisory committee.


    Inquiries from several members of Congress have been made of Secretary for Health Tommy Thompson regarding the status of the new committee, largely as a result of the Association's March 22, 2002 Lobby Day meetings with legislators. We have made repeated requests to DHHS over the past year to move this matter forward. We also remain in regular contact with department staff working to facilitate the formation of the CFS advisory body and encourage others to do the same.

    Jon B. Sterling
    Chairman, The CFIDS Association of America
    Member, DHHS CFS Coordinating Committee
    K. Kimberly Kenney
    President & CEO, The CFIDS Association of America
    Member, DHHS CFS Coordinating Committee (term expired)
      
    [This Message was Edited on 10/16/2002]
  11. moewee

    moewee New Member

    GO AND SIGN THE PETITION NOW!.....it would be at www dot petitiononline dot com forward slash MEitis forward slash.
    Almost 6000 signed for this. DO SOMETHING NOW!

    And I call bs on the CDC. They know the story.

    Got a chuckle from someone who was raging and suggested that all of us going out and donate blood. A CFIDS/FIBRO blood drive. Their is no screening for CFS. Maybe we should CALL the CDC AND ASK IF THEY WOULD LIKE TO SPONSOR OUR BLOOD DRIVE?

    For those who have FMS fibro and or use OXYCODONE or ANY kind of pain medication go sign the same petition.
    www dot petitiononline dot com forward slash OxyPet forward slash petition dot html
    If we do not stand up for our rights for PAIN RELIEF we may LOSE them.
  12. dojomo

    dojomo New Member

    I'll head over there next...But boy I sure hope people don't think this is negative posting..It's just FACTS and it does involve our health.....We can search for remedies from dawn till dark...but if we aren't acknowledged...and no one is looking for the answers...then what. People deserve the TRUTH .....IMHO...DJ
  13. dojomo

    dojomo New Member

    And what did you do with Jaimy? LOL....I remember the days I used to STICK up for you when you got rowdy...ha ha. ....

    Just knowing this is our best link to the outside world...I Like to inspire a little activism ..not fear.
    We are ALL we got....we have to get it done.....Peace....DJ
  14. dojomo

    dojomo New Member

    But there are thousands of people out there just trying and to keep the roof over their head and families fed.....how are WE going to do that ?........
    This is how it works in America....If people never fought for the sick and disabled...we would all be in institutions.....Peace..DJ
  15. dojomo

    dojomo New Member

    ......to this thread. This is some way we can all make a change.!!!!!!

    PS..Proactive and positive all at the same time....Great to stay balanced..and glad to see you haven't given up all your rowdiness...(I'm a Libra..always a struggle to maintain balance)............Peace DJ