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NPR Covers the Controversy Over the Definition Effort

Discussion in 'Institute of Medicine (IOM) Government Contract' started by slayadragon, Jan 30, 2014.

  1. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Izola, beaker, justinreilly and 10 others like this.
  2. barbc56

    barbc56 Senior Member

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    NPR is a highly regarded source of information. Thanks, Lisa
    Izola likes this.
  3. Christopher

    Christopher Senior Member

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    Not bad - I still don't really understand the players or issues involved, but I guess that's on purpose.
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  4. slayadragon

    slayadragon Senior Member

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    Please consider commenting on the article (or at least marking the comments that you like with the "Up" arrow).

    This will be helpful in getting additional coverage in other media and also in influencing the coverage (so that they are less likely to duplicate issues that are heavily criticized).

    Thanks much for your help in this!
  5. Starfive

    Starfive

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    Wonderful to get some national news attention! And ditto to adding comments. You do have to join or use another account such as google but it is worth it to bring emphasis and personal experience to the readership. I asked my family members to comment also.
    Izola likes this.
  6. lnester7

    lnester7 Seven

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    Do we invite the press to this events??? Is there a formal process to say hey we are doing a demonstration or there is an important meeting full of controversy??? I am curious if we do it and they don't come to cover it, or they don't cover it because we do not have anything in place to cover this events/???
    Izola likes this.
  7. Ren

    Ren Primum Non Nocere

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    I was posting a response to a particular comment on the NPR article, only to get an error message that said the comment I was responding to had been removed by a moderator. Here are snipped-shots, before Big Brother sent it down the memory hole ( - sorry I didn't cut-and-paste as well):

    npr censorship i.JPG npr censorship ii.JPG
    Last edited: Jan 30, 2014
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  8. lnester7

    lnester7 Seven

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    OMG they deleted my comment!
  9. Ren

    Ren Primum Non Nocere

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    I just saw a very well-written comment which included specific references to problems with IOM's GWI texts' research, etc.* And then it too was gone. (This is a different comment from the one I mentioned above.) :devil:

    ------

    *Edit II: See post #20 below.
    Last edited: Jan 31, 2014
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  10. Bob

    Bob

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  11. Andrew

    Andrew Senior Member

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    @Ren that was my message that got deleted. I posted about two hours ago. I saw it go up. But I just checked. It's long gone.
  12. leela

    leela Slow But Hopeful

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    It's really creepy to watch the real-time effects of whatever entity it is that does not want the facts of ME to come out in the open.

    ETA: I just saw that a bunch of posts did not get moderated (lisa, justin for example.)
    What gives?
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  13. alex3619

    alex3619 Senior Member

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    Moderation takes time if its moderation after the fact. Will they be there tomorrow?
    beaker and Ren like this.
  14. Firestormm

    Firestormm Guest

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    I don't think there is much chance of it being 'renamed' Encephalomyelitis. But we were having this debate on t'other thread: ff. http://forums.phoenixrising.me/inde...-27th-1-pm-starting.27859/page-12#post-425349 And have done so countless times in the past.

    I did like the picture though. Very apt.

    I also wonder at the claim for CPET made throughout the presentations. Can't help but feel that if this had taken place 2 years ago - 'advocates' - would have been demanding 'XMRV' was the way to proceed.

    I'm not sure we ever really learn. Still, as Bob said in his article this morning - http://phoenixrising.me/?p=22889&preview_id=22889 - the CDC Multi-site would be a great opportunity to test the small-scale results from Snell. I see he's in the UK next month promoting this research - which does make me a little uneasy. I don't know - well I do - we seem to want to cling to supposedly great results before they have been properly worked through.

    Did you all see that the RCT on Primary Biliary Cirrhosis (PBC) funded by MRC/NIHR in UK, completed at the end of last year (2013) for Rituximab. Primarily aimed at addressing fatigue: http://forums.phoenixrising.me/inde...-fatigue-in-autoimmune-pbc.27905/#post-425885 If only we could establish similar autoimmune problems. But maybe in going straight to treatment in trials we'll see something definitive established.

    Lots to be excited about I think, and caution is a hard thing to adopt when desperate for answers, but I do think that now the IOM study is under way - I can't see it being stopped - I hope for a good outcome.

    NICE when they did their review of definitions did not have $1m to spend and it was by all accounts cursory. I think the worst that can be expected from IOM is a NICE definition - and the best is that perhaps they will more clearly say that a diagnosis cannot occur without PEM being present.

    Of course even at this stage of the game, we are only playing with definitions. The entire field could change if something more concrete stands up to replication.
    Last edited: Jan 31, 2014
  15. alex3619

    alex3619 Senior Member

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    The CPET findings are not like any other findings we have had. This is venerable old school technology, going back to the 40's. Its Gold Standard technology. The results have been found in a huge number of patients, and some doctors now use it clinically. Betsy Keller is (hopefully) publishing her replication soon.

    This is not some cutting edge technology. Its about as robust as any medical technology there is. That is why the results are so important.

    Other research relies on trying to find a gnat, on a needle, in a haystack, on a farm, somewhere in some country on Earth. That is what it is like to try to find some cytokines, or viral RNA or DNA, when the copy number is miniscule. It can fail. Its subject to false results.

    I do not think CPET is in the same category. I don't think we can call it diagnostic as yet, but I think it has (and this is not published, its my current interpretation) close to 100% specificity, and over 95% sensitivity, though I might be interpreting this wrong. In any case the results look far more reliable than most tests doctors rely on. I am concerned though that other diseases may show the same pattern, I don't think the testing has been wide enough. If this is so, its still a test for disability/function in ME, and possibly for PEM.
    Delia, Svenja, leela and 5 others like this.
  16. lnester7

    lnester7 Seven

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    @Andrew
    Ohh Don't worry!!! I took it upon myself to take pictures of every comment they delete. I will ask on of the good writers to do a follow up article on censorship!!!
  17. slayadragon

    slayadragon Senior Member

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    Mine went up briefly, disappeared for a while, and then went back up.
  18. Andrew

    Andrew Senior Member

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    As a result of being censored, I contacted on of their reporters via email. The emails were not listed, so I guessed what it was. It didn't bounce. Hoping for the best.
    AzizaJ, Delia, Iquitos and 2 others like this.
  19. Hope123

    Hope123 Senior Member

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    I don't comment on NPR much so don't know their process. But sometimes media sources will delete particularly incendiary comments (not the replies but the original comment that incited it) and the replies attached to it are deleted so the replies aren't taken out of context. On the other side, on some sites, the posters delete their own comments and the replies go away with it.

    But yes, ask NPR.
    SOC likes this.
  20. Andrew

    Andrew Senior Member

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    My reply was to the article. Here's what I wrote:

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