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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Amy Dockser Marcus in WSJ on Lipkin study

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Sasha, Sep 21, 2012.

  1. Sasha

    Sasha Fine, thank you

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    Firestormm, Simon and Merry like this.
  2. taniaaust1

    taniaaust1

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    Thanks Sasha for bringing that to our attention. I just made a comment (not due to taking a liking to her article) as I think it is important to have unbiased people keep reporting on ME/CFS .. we really need people who are willing to report whenever there is new findings and hence support that.

    I was shocked at some of the comments made.. so much naivity (eg one guy thinks we just all need to be eatting better, vit D and some exercise!!!) .. so good to comment to help clear such misconceptions up. Also a lot of comments beating the study up.. saying it wasnt done well etc. Maybe having comments on that thread saying we are happy with how Lipkin did the study would be good so we arent all looking like a bunch of over the top complainers. Comments on it right now are way unbalanced and not making us look good.

    (would it be good to let people know this in the advocacy section? )
     
  3. Sasha

    Sasha Fine, thank you

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    Very well put - I agree.
     
  4. Xandoff

    Xandoff Michael

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    "XMRV has faded, but ME CFS has not. Now one more time, why did my body test positive for a lab contaminant? Hopefullly the Lipkin study will give credence to the seriousness of ME CFS. My humble opine is that we need to address the damage the CDC has done to our ranks and to the PERCEPTION of "our" disease. They have brain-washed the medical community for so long that until we paint this disease for what it really is our laments will fall mostly on deaf ears. Imagine a group of 2 million people in the USA who are really really sick, and 99% of the medical population that serves them believes we are crazy. Somedays you need a bus load of of faith to get by.
     
  5. caledonia

    caledonia

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    I looked into commenting, but WSJ collects waaaaay too much personal information for me to be comfortable posting. Said personal information including name, email and location can be shared with third parties. Scary.
     
  6. Sasha

    Sasha Fine, thank you

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    Oh, sorry to hear that. Thanks for taking a look, anyway. Let's at least give her lots of hits, if not comments!

    I kept a separate email a/c in a false name for everything I do on the internet but still, having to jump through a ton of hoops for this stuff is a real pain - I have cognitive problems and find a lot of these registration systems very confusing.
     
  7. Sasha

    Sasha Fine, thank you

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    Well, it just occurred to me that I might have posted on her blog before so I tested out my usual ID and password and, voila, I must have registered way back. I've left a comment. Where's my brain? :eek:
     

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