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CDC Public Relations - Help me think this one through please!

Discussion in 'General ME/CFS News' started by muffin, Jan 18, 2010.

  1. muffin

    muffin Senior Member

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    USA!

    I have Google Alerts for CFIDS, CFS, Reeves, XMRV, and so on. So I get emails on the blogs,studies, anything and everything with my keywords. I have noticed that in the last two or so days, that the stupid psychological studies by Reeves and Emory U. MIND-BODY are being re-issued again. The CDC does have a Public Relations office and apparently they do watch to see what is being said about the CDC - and I would bet they are watching to see what the temperature is on the CDC/CFS/Reeves program and the CDC XMRV Replication being done. They had to see the "trial balloon" go up by the UK's Wessely on the 186 people that did not show any Retrovirus - and the very negative comments that were hurled at this "study". And I am willing to bet that they are getting prepared for when (NOT IF) the CDC XMRV study comes out and also shows that the samples have no XMRV. The CDC and the PR people must also be aware that when this comes out there will be screaming so loud by us sick people, doctors and researchers that Atlanta will shake.

    So, has anyone noticed this pattern or is it only me? I might also add that stupid "study" by Reeves on how effective the CDC/CFS website was for providing information to people and doctors. He gave himself a big pat on the back for that. Though oddly, the site has not been updated in about four or so years and missing was the XMRV study and its possible implications to CFIDS. I do think the CDC is preparing the ground for the attacks that are going to come their way when the CDC XMRV Replication study is released into the public arena.

    Anyone following my rambling thinking????? Thoughts?
    Lastly, every time I see the really stupid studies by Reeves and his gang of morons I always respond with hard-hitting comments and solid data. Sometimes my comments are published and sometimes not. BUT, I think WE ALL must counter every single CDC/CFS blog/website/article/etc. and hit hard to show how wrong they are.

    Sorry guys - I am so tired. One litttle trip to the supermarket and you would think I just ran a marathon at 6,500 feet above sea level...Got to love CFIDS...


    Childhood trauma associated with increased risk for chronic fatigue syndrome http://sentfresh.devpad.in/2010/01/...-fatigue-syndrome/comment-page-1/#comment-440
    Posted on the January 16th, 2010 under Uncategorized by sentfresh
    The study is published in the Jan. 5, 2009 Archives of General Psychiatry

    Genes Linked To Chronic Fatigue Syndrome Chronic Fatigue Syndrome http://www.micronutra.com/journal/c...aign=genes-linked-to-chronic-fatigue-syndrome
    - "Studies have shown that those with CFS have variants in the part of the brain that responds to stress. One study links symptoms of CFS including pain, memory function and fatigue to the genes that affect how our bodies deal with stress. This implies that those with Chronic Fatigue Syndrome cannot brush off those stresses that others easily can. It also shows that CFS does not have a single, root cause, but is caused and influenced by a number of different factors...Eat a well balanced diet with plenty of fruits, vegetables and whole grains for energy, and make sure to stay away from caffeine, alcohol and other stimulants and depressants. Focus on the things in your life that make you happy" ((Yup, focusing on things that make me happy really works with CFIDS - idiots))
     
  2. Mithriel

    Mithriel Senior Member

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    I think you are right Muffin, they are planning this carefully, well that is what they do, while everyone else is doing real science.

    We are fighting a war for survival.

    Mithriel
     
  3. starryeyes

    starryeyes Senior Member

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    Muffin - thank you for the alert. I'm here to do whatever I can. I agree with writing comments. I also think the CAA should be putting out articles to combat this. I wrote a comment under each article but they're probably not going to publish mine either.

    Maybe we should come up with generic answers here and then see who gets published and use that one as a template to bombard them.

    tee
     
  4. muffin

    muffin Senior Member

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    Guys: I think we do need a template of sorts with solid data from WPI on XMRV that can be used to counter the CDC XMRV negative when it comes out. When my brain functions, I will go grab the data from the WPI so that we have stuff to counter with.
    If you guys can start thinking up good stuff that would be great. But we too need to prepare the ground for their release and then counter-attack with heavy punches. But, as one of our people hear noted, we have to counter-punch without being hostile or rude, etc. See Kate's post on what Journalists do and how to respond to them. I have to remember to keep anger out.
     
  5. starryeyes

    starryeyes Senior Member

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    Okay. It says my comments are still awaiting moderation on those 2 articles.

    muffin, would you make the template in your first post here or in a new thread? It's way easier if we give ideas down in the thread and then the Sample is up at the top on the first Post so we can keep track of how it's coming along.

    Also, then it's not frustrating when people go off topic in the thread.
     
  6. muffin

    muffin Senior Member

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    Actually, on the WPI Facebook someone with a great deal of brains has tried to do just this. They also listed a number of researchers and other contacts. Hit the WPI facebook and see how much work this person did on a solid "letter" with valid, verifieable data. Again, the researchers and their contact information is out there and IF you do write to these people do so in a calm and collected manner.

    I am the ONE that must control my anger and I will...
     

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