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ME/CFS State of the Knowledge Conference Rumor

Discussion in 'General ME/CFS News' started by Andrew, Jul 4, 2012.

  1. Andrew

    Andrew Senior Member

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    The rumor I heard was that the ME/CFS State of the Knowledge Conference was done at Obama's request in response to a town hall question, and that the result was supposed to be a report generated from what was covered there, and presented Obama by the Secretary at DHHC. I also heard that the report was never generated, and never presented.
     
  2. Hope123

    Hope123 Senior Member

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    There was report generated by the NIH officials who attended but it didn't come out until many months after the Conference. Whether this was what was expected by Obama or whether it was delivered to him or the Secretary is another matter. The last section of the conference was suppose to cover gaps in the research and priorities but I don't think this was done well -- partly due to time and the threat of government shut-down around that period. Also, it's not like the report is easily findable -- it's under "events."

    http://orwh.od.nih.gov/CFS2011/ORWH_SKW_Report.pdf
     
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  3. Dolphin

    Dolphin Senior Member

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    BTW, that seems to be a later version of the report to the one I saw (and I imagine most people looked at). The version I have is 547KB (vs 554KB). If one looks at the references, it has eight rather than seven, and they're not in the same order. I'm not in the US so it's not a priority for me to check out what the changes are but maybe somebody could have a look.
    Hopefully this link works to where I uploaded: SoK _Workshop_Report_508_compliant_-_8-5-11.pdf (0.56 MB) .

    Sometimes I find it interesting to compare and contrast not just in terms of learning anything new (scientifically) but to see was their any changes that might have been made for some "political" reason of some sort.
     
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  4. Andrew

    Andrew Senior Member

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  5. Dolphin

    Dolphin Senior Member

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    I just signed out of my free RapidShare account and it worked for me as a "nobody" - I clicked "download" (under "save file to your computer") and then a little thing popped up on the bottom asking me whether to "save" or "open". That is with IE.
     
  6. "Myalgic encephalomyelitis (ME) is a case definition developed in Great Britain in 1988."

    OMG

    They are missing half a century of research into ME (starting with Gilliam, 1938) ....
     

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