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Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
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Welcome to our new forum -- Institute of Medicine Government Contract

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Kina, Oct 21, 2013.

  1. Kina

    Kina Moderation Team Lead

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    We have moved all Institute of Medicine (IOM) threads here. If we have missed any, let us know on this thread.

    Please use this forum for posting any new threads on IOM issues.

    Thank you. :)
    justinreilly, Delia, SOC and 2 others like this.
  2. Ember

    Ember Senior Member

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    Thank you! :)

    Some threads in this new forum were previously listed under “General ME/CFS News,” some were under “Action, Alerts and Advocacy,” and one remains under “Petitions.” Situated now under “Advocacy and Fundraising,” this grouping doesn't gain much prominence. If I'm not mistaken, the XMRV forum once had equal status to such major groupings as “Upcoming ME/CFS Events,” “News and Research,” and “Advocacy and Fundraising.” Would it be possible for this new forum to be given equivalent status?

    Does all news and any petition related to the IOM contract now belong in the new forum?
    justinreilly, beaker and Delia like this.
  3. Kina

    Kina Moderation Team Lead

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    Ember

    We have put the IOM forum in 'Advocacy and Fundraising' which includes petitions because all the threads are related to advocacy issues and or petitions.

    We are trying to keep all the IOM threads together, so yes new threads should be posted in this forum.
    beaker likes this.
  4. Ember

    Ember Senior Member

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    Would it be possible for the IOM forum to be given a status equivalent to the major groupings under “News, Research and Campaigns,” i.e., “Upcoming ME/CFS Events,” “News and Research” and “Advocacy and Fundraising?” Wasn't the XMRV forum given such prominence? The new forum could then be given its own subheadings, such as “News,” “Action Alerts” and “Petitions.”
    justinreilly, beaker and Delia like this.
  5. Mark

    Mark Acting CEO

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    That wouldn't be consistent with the new structure of the forum sections (implemented earlier this year) which groups things in a more logical way and keeps the size of the forum index to a manageable level. The XMRV forum had over 2000 threads; if and when the IOM forum starts approaching that size I guess we'd have to consider restructuring to give it its own section, but for now it's one of the smallest forums we have so I don't think subheadings are justified.
  6. Delia

    Delia Senior Member

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    With all due respect, This is a very time sensitive issue, and if and when the number of posts ever became that large, the time will be lost.


    I first learned of this issue from the action alert on the home page on or about Sept 22 when I first came back to PR.

    I scrambled. I got everyone I knew to write letters. I even specially wrote appropriate sample letters, from the template linked here, for my friends and family to use.

    Next thing the contract was signed.

    The announcement here said: check back for further instructions for what to do next. I told my friends to wait, and once that was up I'd tell them what to do next.

    I depended on Phoenix Rising.


    Well, it's nearly a month and PR never followed up. Leaving PR members to scramble and have threads all over the place and no where to get concise information.


    We have lost incredibly valuable time.

    I don't think it needs to be said we are all sick people, some of us very, very sick. As are you all in Admin, I realize.


    Please, please help us.

    Please don't put an administrative rule above the needs of your subscribers.

    Thank you for your work and consideration in this. I realize you are likely a volunteer.
  7. Andrew

    Andrew Senior Member

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    I'm all for consistent organization, but urgency is also an issue. I think this could be put at the very top, even in it's own forum. And then later when this becomes old news, it can be moved down into the logical place.

    And with that said, I also want to thank all of you for all the work you put in, day in and day out, despite being sick.
  8. Delia

    Delia Senior Member

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    Is it possible to put a brief note on the blog/home page with a link here? Maybe that would be a more feasible solution?

    I definitely want to make it easy for Admins and easy for those who are struggling to communicate with each other to find each other.

    Thanks again!
  9. Ember

    Ember Senior Member

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  10. Kina

    Kina Moderation Team Lead

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    Thank you Ember. I have moved them. :)
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  11. Mark

    Mark Acting CEO

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    I've been discussing the options for publicizing the IOM issue with some of the other PR volunteers today. We've come up with a plan that will put prominent links to the IOM forum, and to a forthcoming PR article on the IOM, on both the forums and website/blog. It's going to take a few days to organize all this, but I expect that to be done by early next week.

    I also posted the following on another thread in answer to a question about what PR is doing about the IOM, and I'd ask for your patience while we set all this up:

    beaker, justinreilly, rosie26 and 2 others like this.
  12. Delia

    Delia Senior Member

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    The last thing I want to do is to bash fellow people with this illness and ones who are working as volunteers for my benefit and the benefit of other PWCs.

    But, I hope you can understand why patience with this situation sadly isn't possible. A situation that was not caused by you or PR, but has put us all scrambling and under intense deadline.
    beaker, Ember, justinreilly and 2 others like this.
  13. taniaaust1

    taniaaust1 Senior Member

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    Thanks Mark and whoever did it for clearing announcing this new forum. I like how you've made the fact that we have this new forum prominent by doing that. Thanks :) . I hope you will leave that there like that so help draw attention to the OMI issue.
    beaker likes this.
  14. Nielk

    Nielk

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  15. Nielk

    Nielk

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  16. Kina

    Kina Moderation Team Lead

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    We like to keep the articles all in one place but I could post a thread with links to the articles so they aren't missed.
    Nielk likes this.
  17. Kina

    Kina Moderation Team Lead

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  18. Nielk

    Nielk

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    Thank you. I guess we could do this for any future IOM articles as well?
  19. Kina

    Kina Moderation Team Lead

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    I could put a stickied thread at the top and add articles to it as they are published.
    beaker and Nielk like this.
  20. Nielk

    Nielk

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    That would be fantastic!

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