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Let's move on the Lariam issue and see what else needs to be addressed.

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  • Sue T
    OK - lots of folks suffering from after effects of Lariam. This problem definitely shines out. Please, keep the momentum rolling. I will try to parse out
    Message 1 of 3 , Jul 16 9:06 PM
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      OK - lots of folks suffering from after effects of
      Lariam. This problem definitely shines out. Please,
      keep the momentum rolling. I will try to parse out
      different people's stories here this week.

      A couple items to take up with the group:

      1. Though communication with two congressmen has been
      discussed here, I think it would be useful if someone
      were officially the "spokesperson" for our group. I
      mean, if the problem with us having a single voice is
      decentralization, it seems to me that the first order
      of mobilization would be to see if somoene here will
      be the official person to liaise between us and
      congress. I don't want to volunteer anyone so if you
      are interested please let me know. As moderator I
      would assume some responsibility to organize a
      database (my forte) to hand over to someone to
      approach the congress people who are already online
      and interested in the Lariam issue (not my forte right
      now).

      2. It occurs to me some people who might
      need/want/appreciate some advocacy might not be
      sufferers of Lariam toxicity (such as myself). To be
      sure, I don't want to dilute the Lariam issue and I
      think it is a worthy cause. As I understand the
      issue, the Lariam issue is such a hot potato
      particularly for PCVs b/c of two facts: 1) There is
      not a lot of independent info/after market study which
      illustrates the long-lasting effects of Lariam; 2)
      PCVs are administered the drug more than any other
      group of people. If I'm wrong, let me know. I
      definitely want to keep the momentum of this Lariam
      issue growing and, as moderator, I'll try to find a
      way to nurture this thing (perhaps a Lariam blog
      associated with this forum per Jay's suggestion????);
      however, I don't want this to just be a Lariam group.
      I was stabbed and have had myriad problems in my
      readjustment. Like many other PCVs, my situation is a
      freak thing, but the kind of advocacy we need is a bit
      different from the Lariam issue I believe b/c PC has
      NEVER disputed my rightful claim to benefits and my
      claim was adjudicated immediately. My problem is with
      the OWCP system b/c no doctor near me will bill ACS
      and I ahve to drive 7 hours to Tallahassee FL to see a
      doctor. Etc etc etc. So, again - could folks here
      who have non-Lariam issues please speak up? I want
      your stories too. If you don't speak up this forum
      will be of little service to you. We are all (for teh
      most part) former Peace Corps volunteers, or at least
      former federal employees, who need resolution or
      general moral support getting through the quagmire of
      our government agency in which we were injured and the
      Wonderful Wild World of OWCP. It may be possible to
      create a blog for this larger, miscellaneous group
      (but I won't call it miscellaneous, I'll call it
      something else).

      3. If we get a nice number of ACTIVELY PARTICIPATING
      members in this forum, I would like to have a letter
      writing campaign. We need to find our critical mass,
      develop a cohesive message and move forward our
      cause(s). Send your stories. I'll organize the
      stories for group consumption when Ig et more time --
      it's been a busy two months for me with a new job and
      all.

      I hope you are all well as can be. Hopefully this
      group can be a source of some comfort where you can
      find someone to at the very least commisserate with
      you in your dark hour. I don't know how I made it
      through my low point without a sympathetic group like
      this~

      Be well,
      Sue Trone
      Peace Corps Georgia 2005



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    • Kevin
      Sue, Thank you for your thoughtful post. You raise some important issues. My two cents worth: As the owner and moderator of the Group, the role of official
      Message 2 of 3 , Jul 17 7:27 AM
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        Sue,

        Thank you for your thoughtful post.  You raise some important issues.

        My two cents' worth:

        As the owner and moderator of the Group, the role of official spokesperson will fall largely to me and you.  We certainly can delegate tasks on a semi-permanent or case-by-case basis if anyone volunteers to help us out.  In addition to a spokesperson(s), we will need Congressional liaisons¬óconstituents who are willing transmit information between our Group and their Congressional offices.  Most Senators and Representatives won't communicate with people who don't reside in their states/districts.  I know; I've gotten the brush-off from both Ted Kennedy and Chuck Schumer.

        I will volunteer to be the liaison between our Group and Senator Coleman's office since I made the initial contact.  His staff has been very open to dealing with me even though I'm not a Minnesota resident.  Another kudo for them!

        My personal preference is not to proceed with Lariam toxicity as a single issue.  I believe that our argument is much stronger if we can show that former Peace Corps Volunteers, regardless of the nature of their illnesses and injuries, get the same shoddy treatment from Peace Corps and/or the Office of Workers' Compensation programs.  Lariam is getting a lot of attention in our Group right now (and it should!) , but we probably have 50+ members with other conditions.

        I like the idea of a Lariam blog.  We could house it at our sister Yahoo! 360 site, which has a blog that's currently sitting empty.

        I join you in urging people to send in their stories.  They are very important.  I'd rather have a collection of stories on file than have to scramble for them when a Congressional request comes in.

        Kevin

        --- In owcp@yahoogroups.com, Sue T <sallie_ali_sue@...> wrote:
        >
        > OK - lots of folks suffering from after effects of
        > Lariam. This problem definitely shines out. Please,
        > keep the momentum rolling. I will try to parse out
        > different people's stories here this week.
        >
        > A couple items to take up with the group:
        >
        > 1. Though communication with two congressmen has been
        > discussed here, I think it would be useful if someone
        > were officially the "spokesperson" for our group. I
        > mean, if the problem with us having a single voice is
        > decentralization, it seems to me that the first order
        > of mobilization would be to see if somoene here will
        > be the official person to liaise between us and
        > congress. I don't want to volunteer anyone so if you
        > are interested please let me know. As moderator I
        > would assume some responsibility to organize a
        > database (my forte) to hand over to someone to
        > approach the congress people who are already online
        > and interested in the Lariam issue (not my forte right
        > now).
        >
        > 2. It occurs to me some people who might
        > need/want/appreciate some advocacy might not be
        > sufferers of Lariam toxicity (such as myself). To be
        > sure, I don't want to dilute the Lariam issue and I
        > think it is a worthy cause. As I understand the
        > issue, the Lariam issue is such a hot potato
        > particularly for PCVs b/c of two facts: 1) There is
        > not a lot of independent info/after market study which
        > illustrates the long-lasting effects of Lariam; 2)
        > PCVs are administered the drug more than any other
        > group of people. If I'm wrong, let me know. I
        > definitely want to keep the momentum of this Lariam
        > issue growing and, as moderator, I'll try to find a
        > way to nurture this thing (perhaps a Lariam blog
        > associated with this forum per Jay's suggestion????);
        > however, I don't want this to just be a Lariam group.
        > I was stabbed and have had myriad problems in my
        > readjustment. Like many other PCVs, my situation is a
        > freak thing, but the kind of advocacy we need is a bit
        > different from the Lariam issue I believe b/c PC has
        > NEVER disputed my rightful claim to benefits and my
        > claim was adjudicated immediately. My problem is with
        > the OWCP system b/c no doctor near me will bill ACS
        > and I ahve to drive 7 hours to Tallahassee FL to see a
        > doctor. Etc etc etc. So, again - could folks here
        > who have non-Lariam issues please speak up? I want
        > your stories too. If you don't speak up this forum
        > will be of little service to you. We are all (for teh
        > most part) former Peace Corps volunteers, or at least
        > former federal employees, who need resolution or
        > general moral support getting through the quagmire of
        > our government agency in which we were injured and the
        > Wonderful Wild World of OWCP. It may be possible to
        > create a blog for this larger, miscellaneous group
        > (but I won't call it miscellaneous, I'll call it
        > something else).
        >
        > 3. If we get a nice number of ACTIVELY PARTICIPATING
        > members in this forum, I would like to have a letter
        > writing campaign. We need to find our critical mass,
        > develop a cohesive message and move forward our
        > cause(s). Send your stories. I'll organize the
        > stories for group consumption when Ig et more time --
        > it's been a busy two months for me with a new job and
        > all.
        >
        > I hope you are all well as can be. Hopefully this
        > group can be a source of some comfort where you can
        > find someone to at the very least commisserate with
        > you in your dark hour. I don't know how I made it
        > through my low point without a sympathetic group like
        > this~
        >
        > Be well,
        > Sue Trone
        > Peace Corps Georgia 2005

      • Kevin
        This is from a email that was sent directly to me ...
        Message 3 of 3 , Jul 18 9:22 AM
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          This is from a email that was sent directly to me ...

          > You may want to contact Daniel Pailes or at least read his story. He
          > once wrote a guest article for PC Online and has posted his phone
          > number on that forum. His issues are his own but he has also been in
          > contact with several RPCV's with unresolved health issues. He was the
          > one who got congress to look into the Walter Portier disappearance.
          >
          > Did everyone note the resignation today of the administrator blamed
          > for the veterans' health care situation?
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