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Response from DHSD: Defining Gulf War Illness

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  • Kirt Love
    Response: Dear Mr. Love, Thank you for your recent emails and telephone calls. My Name is Harry and I’m responding on behalf of the Director of Deployment
    Message 1 of 2 , Dec 1, 2005
      
      Response:
      Dear Mr. Love,

      Thank you for your recent emails and telephone calls. My
      Name is Harry and I’m responding on behalf of the Director
      of Deployment Health Support.

      Your recent emails to us asked many questions. I am working
      to provide you with the best answers possible. I hope to be
      able to answer most of your questions soon.  
      For now, I will provide the information that I can.

      The monthly Veteran’s and Military Support Organization
      Roundtable meetings continue. It is true that information from
      those meetings hasn’t been posted since April. I am working with
      Barbara Goodno to correct that and hope to have most of the 2005
      meetings posted soon. The computer notes from the VSO/MSO
      Roundtable meetings in 2002 have been lost. We will try to recreate
      those notes for the web as time allows.

      We are researching your questions about the Gulf War Registry.

      In response to your question about HHC-6 I found the same information
      on the CDC website that you did. As you can see, the CDC expects publication
      of this study by the end of this year. We recommend you contact CDC
      directly on questions about their programs.

      We are working your queries about medical research.

      As to Mr. Bryan’s question about medical vouchers, Congress never
      authorized a medical voucher program and one has not been created.
      Therefore neither this organization nor anyone else can help provide
      them to hospitals and veterans.

      We hope this information has been helpful to you. I will write you
      again as I get more information about your outstanding questions
      .
       

      ----- Original Message -----
      Sent: Thursday, December 01, 2005 12:24 PM
      Subject: Defining Gulf War Illness

      Dear Special Assistant

      During my last meeting with Barbara Goodno
      and Bob Dunlap at DHSD, I had asked a few
      questions. Two for me are pressing.

      It was my understanding from Secretary Chu that
      DHSD would continue its existence for many years.
      Barbara had said the NSO meetings still take place.
      Yet, from the DHSD website you can see no evidence
      of this.

      The NSO page of DHSD was supposed to be updated
      since May. The Calendar of events has not been updated
      since July 2005, with August listed in the background.

      I have asked for two years for the 2002 NSO meeting
      materials to be posted. Of which I was told by Robert
      at DHSD was ready back in May. Its still not up.

      How can a veteran follow this as it governs Gulf War
      medical research if its not updated. It maybe only 10%
      of your agenda these days, but it was 100% for the
      reason of your formation. Those of us still following this
      want to know what you and the NSO's are discussing in
      the ways of Gulf War issues - public or otherwise.

      Second, the issue of the Persian Gulf Registry in relation
      to continuing programs. ( Gulf War Registry )

      I've discussed with you the issue of access to the Gulf
      War Registry, and its decline. That the decline is due
      to lack of access by VAMC attrition of its EA coordinators,
      once called Persian Gulf Coordinators. That the program
      has been made impotent by a lack of cooperation nation
      wide from the VAMC's, which has drastically reduced
      enrollment though Gulf War veterans still come into the
      VAMC's in ever increasing numbers.

      Susan Mathers of VA has refused to look into this, and
      the subsequent departments underneath her have made
      no efforts even to keep up with statistical information publicly.
      Which is every bit as important as the GWVIS data systems.

      Is this effecting studies like HHS-6 that was supposed to
      be completed this year. This is a CDC study that had
      a projected completion date on your website of June 30,2003.

      Neither the DHSD, CDC, VA, or even Pubmed offer a
      actual completed study date. Just projected.

      There is a very apparent break down here of the infrastructure
      of these programs, and the end results.

      Can we see the NSO 2002 meeting data?

      Can we see the complete CDC "Defining Gulf War Illness" study?

      Can we see the "Persian Gulf Registry", "Gulf War Registry" stats
      spelled out from 1992 to present in a yearly breakdown spreadsheet?

      Can we see the 2006-2007 Gulf War medical research agenda?

      What agency right now truly governs over Gulf War Illness, that all
      others abide by, and work with closely?

                                                                 Sincerely
                                                                 Kirt P. Love
                                                                 Director, DSBR



      --------------------------------------------------------------------------------

      Defining Gulf War Illness
      In November 1997, CDC funded a study to characterize and compare different approaches for defining the medically unexplained illnesses of Gulf War veterans. This study by the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School compared the symptoms of two groups of Gulf War veterans at two points in time. The study subjects included Gulf War veterans from the Department of Veterans Affairs' Gulf War Registry who had participated in a previous study conducted by the New Jersey researchers, and veterans who had participated in the CDC Air Force study. Data-driven case definitions for illness previously derived from these two groups of Gulf War veterans were compared with standard or existing case definitions for unexplained multi-symptom illnesses (such as chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity) to determine which definition best characterized Gulf War veterans' unexplained illnesses. The study also tried to determine how well the derived and existing case definitions could be generalized in a new random sample of deployed and nondeployed Gulf War era veterans and active duty soldiers. The investigators are preparing manuscripts for publication which are expected by the end of 2005.


      --------------------------------------------------------------------------------


      The study subjects included Gulf War veterans from the Department of Veterans Affairs Gulf War Registry who had participated in a previous study conducted by the New Jersey researchers, and veterans who had participated in the CDC Air Force study.

           Project: HHS-6  
           Agency: Department Of Health And Human Services  
           Location: CDC, University of Medicine and Dental of Robert Wood Johnson Med School
         
           P.I. Name: H M Kipen  
           Research Type: Epidemiology  
           Research Focus: Symptoms & General Health  
           Focus Category: Mental Health  
           Status: Ongoing  
           Study Start Date: November 01,1997  
           Estimated Completion Date: June 30,2003  




    • vee hamm
      All readers Reponse letters, like the one below are rarely, as ever seen posted to other NSO s websites. Now why is that ? Why do other groups keep
      Message 2 of 2 , Dec 1, 2005
        All readers
        Reponse letters, like the one below are rarely, as ever seen
        posted to other NSO's websites.  Now why is that ?
        Why do other groups keep correspondence of their agenda
        hidden from public view?
         
        Good job, Kirt
        Venus Hammack
        ED of Desert Storm Justice Foundation

        Kirt Love <DSBR@...> wrote:
        
        Response:
        Dear Mr. Love,

        Thank you for your recent emails and telephone calls. My
        Name is Harry and I’m responding on behalf of the Director
        of Deployment Health Support.

        Your recent emails to us asked many questions. I am working
        to provide you with the best answers possible. I hope to be
        able to answer most of your questions soon.  
        For now, I will provide the information that I can.

        The monthly Veteran’s and Military Support Organization
        Roundtable meetings continue. It is true that information from
        those meetings hasn’t been posted since April. I am working with
        Barbara Goodno to correct that and hope to have most of the 2005
        meetings posted soon. The computer notes from the VSO/MSO
        Roundtable meetings in 2002 have been lost. We will try to recreate
        those notes for the web as time allows.

        We are researching your questions about the Gulf War Registry.

        In response to your question about HHC-6 I found the same information
        on the CDC website that you did. As you can see, the CDC expects publication
        of this study by the end of this year. We recommend you contact CDC
        directly on questions about their programs.

        We are working your queries about medical research.

        As to Mr. Bryan’s question about medical vouchers, Congress never
        authorized a medical voucher program and one has not been created.
        Therefore neither this organization nor anyone else can help provide
        them to hospitals and veterans.

        We hope this information has been helpful to you. I will write you
        again as I get more information about your outstanding questions
        .
         

        ----- Original Message -----
        Sent: Thursday, December 01, 2005 12:24 PM
        Subject: Defining Gulf War Illness

        Dear Special Assistant

        During my last meeting with Barbara Goodno
        and Bob Dunlap at DHSD, I had asked a few
        questions. Two for me are pressing.

        It was my understanding from Secretary Chu that
        DHSD would continue its existence for many years.
        Barbara had said the NSO meetings still take place.
        Yet, from the DHSD website you can see no evidence
        of this.

        The NSO page of DHSD was supposed to be updated
        since May. The Calendar of events has not been updated
        since July 2005, with August listed in the background.

        I have asked for two years for the 2002 NSO meeting
        materials to be posted. Of which I was told by Robert
        at DHSD was ready back in May. Its still not up.

        How can a veteran follow this as it governs Gulf War
        medical research if its not updated. It maybe only 10%
        of your agenda these days, but it was 100% for the
        reason of your formation. Those of us still following this
        want to know what you and the NSO's are discussing in
        the ways of Gulf War issues - public or otherwise.

        Second, the issue of the Persian Gulf Registry in relation
        to continuing programs. ( Gulf War Registry )

        I've discussed with you the issue of access to the Gulf
        War Registry, and its decline. That the decline is due
        to lack of access by VAMC attrition of its EA coordinators,
        once called Persian Gulf Coordinators. That the program
        has been made impotent by a lack of cooperation nation
        wide from the VAMC's, which has drastically reduced
        enrollment though Gulf War veterans still come into the
        VAMC's in ever increasing numbers.

        Susan Mathers of VA has refused to look into this, and
        the subsequent departments underneath her have made
        no efforts even to keep up with statistical information publicly.
        Which is every bit as important as the GWVIS data systems.

        Is this effecting studies like HHS-6 that was supposed to
        be completed this year. This is a CDC study that had
        a projected completion date on your website of June 30,2003.

        Neither the DHSD, CDC, VA, or even Pubmed offer a
        actual completed study date. Just projected.

        There is a very apparent break down here of the infrastructure
        of these programs, and the end results.

        Can we see the NSO 2002 meeting data?

        Can we see the complete CDC "Defining Gulf War Illness" study?

        Can we see the "Persian Gulf Registry", "Gulf War Registry" stats
        spelled out from 1992 to present in a yearly breakdown spreadsheet?

        Can we see the 2006-2007 Gulf War medical research agenda?

        What agency right now truly governs over Gulf War Illness, that all
        others abide by, and work with closely?

                                                                   Sincerely
                                                                   Kirt P. Love
                                                                   Director, DSBR



        --------------------------------------------------------------------------------

        Defining Gulf War Illness
        In November 1997, CDC funded a study to characterize and compare different approaches for defining the medically unexplained illnesses of Gulf War veterans. This study by the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School compared the symptoms of two groups of Gulf War veterans at two points in time. The study subjects included Gulf War veterans from the Department of Veterans Affairs' Gulf War Registry who had participated in a previous study conducted by the New Jersey researchers, and veterans who had participated in the CDC Air Force study. Data-driven case definitions for illness previously derived from these two groups of Gulf War veterans were compared with standard or existing case definitions for unexplained multi-symptom illnesses (such as chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity) to determine which definition best characterized Gulf War veterans' unexplained illnesses. The study also tried to determine how well the derived and existing case definitions could be generalized in a new random sample of deployed and nondeployed Gulf War era veterans and active duty soldiers. The investigators are preparing manuscripts for publication which are expected by the end of 2005.


        --------------------------------------------------------------------------------


        The study subjects included Gulf War veterans from the Department of Veterans Affairs Gulf War Registry who had participated in a previous study conducted by the New Jersey researchers, and veterans who had participated in the CDC Air Force study.

             Project: HHS-6  
             Agency: Department Of Health And Human Services  
             Location: CDC, University of Medicine and Dental of Robert Wood Johnson Med School
           
             P.I. Name: H M Kipen  
             Research Type: Epidemiology  
             Research Focus: Symptoms & General Health  
             Focus Category: Mental Health  
             Status: Ongoing  
             Study Start Date: November 01,1997  
             Estimated Completion Date: June 30,2003  






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