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The CFSAC Plot Thickens

Discussion in 'Action Alerts and Advocacy' started by Ember, Nov 24, 2013.

  1. Ember

    Ember Senior Member

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    Last edited: Nov 24, 2013
    justinreilly, aimossy, Delia and 3 others like this.
  2. Nielk

    Nielk

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    With everything that is going on with CFSAC, HHS/IOM.....my initial instinct was why even bother. Why not just ignore this whole CFSAC fiasco. But, as I thought about it more, I thought that it would just play into their hands - no input from patients would satisfy them very well.

    I have chosen to give oral/phone and written testimony because it gives me a platform to add my thoughts into the public records. For me it's a better choice than doing nothing.
  3. lnester7

    lnester7 Seven

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    My dream is that @leela (I think she is making the movie), will come and say that We are able to raise private fund and that we have proven the 200K in 1 month. That we will go public and big and they better get on board because we are getting the media on board, too much publicity to burry us now.

    One can dream!!! NOISE NOISE NOISE is what we need.
    aimossy, catly, rosie26 and 1 other person like this.
  4. Nielk

    Nielk

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    What a challenge to say everything that I want to say in 5 minutes! Impossible tasko_O
    justinreilly, aimossy and Delia like this.
  5. leela

    leela Slow But Hopeful

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    wtf is the seamon corporation?!
    now we have to fight seamonsters as well as government bureaucrats and psychobabblers?
    seriously, why is there a private corporation in charge of communications with "our" action committee?
    Last edited: Nov 24, 2013
    justinreilly, aimossy and Delia like this.
  6. lnester7

    lnester7 Seven

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    Does anybody wonder why us??? Fibro people are left alone (they get as disable), and other diseases what makes CFS such a target over and over???

    Maybe that should be the question we need to start looking into. IN THE MEDIAAAAAAAAAA
    medfeb, ggingues and Delia like this.
  7. Andrew

    Andrew Senior Member

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    There are people on the CFSAC who have our best interests at heart, and our attendance is a way of showing them public support.
    Roy S, justinreilly and Delia like this.
  8. Ember

    Ember Senior Member

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    I fear that Dr. Unger's study will quietly slip through the cracks.
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    justinreilly likes this.
  9. Nielk

    Nielk

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    I think that we need to discuss that. It is supposedly to be part of what the IOM looks at. We need to keep pushing the two day exercise testing.
    WillowJ, justinreilly, Delia and 2 others like this.
  10. Nielk

    Nielk

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    Nancy Lee will have an half hour to talk about the IOM as per the agenda. How much time will each CFSAC voting member have to talk about it?
    WillowJ and justinreilly like this.
  11. jspotila

    jspotila Senior Member

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  12. alex3619

    alex3619 Senior Member

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    Failure of abiding by principles of good governance has become so deeply entrenched throughout Western civilization that I wonder if most in government can even see it any more.
    WillowJ, aimossy, RL_sparky and 4 others like this.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    My tea party friend said it was affirmative action out of control. Now zombies, vampires and sea monsters are constitutionally protected classes. sea-monster-owned businesses are given special preference in the bidding process. I haven't confirmed this, but since the tea party always knows what they're talking about, I believe it.
    leela likes this.
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    The Tea Party Rocks!

    GG
  15. jspotila

    jspotila Senior Member

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    lnester7 and Nielk like this.
  16. Nielk

    Nielk

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    Great work, Jennie. Thank you for revealing this crucial information. It is hard to believe that Dr. Kaplan did not remember nominating himself, since it is more than just sending in your name. One has to write up a letter and send in a current CV.

    We need to watch carefully to see who they will appoint now for the five open slot coming up in 2014.

    Are there any actions we can take if the results are clearly not balanced?
    jspotila likes this.
  17. jspotila

    jspotila Senior Member

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    There have been cases where an agency was sued for violating the membership point of view balance requirement under FACA. In the cases I've read, it's been a balance between industry and non-industry perspective that was at issue. We'll have to be vigilant on this, and pursue litigation if we have to.
    Ren likes this.
  18. Ecoclimber

    Ecoclimber Senior Member

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    And the people on the committee that have limited knowledge of ME/CFS can't even take the time - perhaps maybe a couple hours - to gain knowledge concerning this illness so they can perform their duties on the panel. Why be on the board if you have no interest to learn...that should be a clue??

    What this community fails to realize that all these actions although well intention and good, will not change the course of events or policy not one iota within HHS.

    With the example of the Gulf War Veterans before you and now another Federal agency allowing companies to amass wealth in the amount of $600 million dollars from taxpayer backed credits by the consistent practive of violating a number Federal law and statutes causing the burden to land squarely on the backs of students https://tinyurl.com/ny66k6q

    The only way you will be able to stop this contract which this community refuses to acknowledge and the only one that can force HHS to act is filing a Federal Class Action Lawsuit for an Injunction or Federal Class Action Lawsuit under RICO (Racketeer Influence and Corrupt Organization Act) against the agency head or heads. It broad scope for discovery would rip open the NIH, HHS, IOM and the CDC activities over the last few years and their connectios to the health industry.

    An alignment with a legal nonprofit organizations that have brought action against the IOM and other Federal agencies in the past which I posted about a month ago but was totally ignored is the only option at this stage to stop this process. There is no other way to force HHS to change their stance. You need to have the political will and the powerful alliances arrayed against HHS, you have neither.

    The action of the HHS is a signal that this Auschwitz style contract is nothing more than a IOM death panel for the ME/CFS patients resulting in the inhumane treatment to the point of genocide on a patient community. https://tinyurl.com/pm9em3l

    The clock is ticking and if you do not begin to initiate contacts and begin the process, kickstart a legal fund. This cause is lost. It's just that simple.

    HHS can calculate by the numbers the amount of patients opposed and those who support the contract. The winners will be the powerful medical/disability/health insurance industry and the powerful APA. $400 million dollars of lobbying by this sector, you would assume they would pass legislation favorable to these groups since much of their money also goes to special PAC/SIG to help fund the reelection campaigns of those in Congress and the President. They do expect payback for all that money?
    The question is what are you going to do about it? Just more Crickets...??
    Last edited: Dec 3, 2013
    liquid sky and ggingues like this.
  19. liquid sky

    liquid sky Senior Member

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    There are lawyers that are affected by ME. I wonder if any could guide the ME community in bringing a lawsuit, as you say, Ecoclimber? I know the costs would have to be shared. Actually, I thought there was a lawyer who had started a lawsuit by the name of Jeanette?
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    She hasn't started a lawsuit, but she has filed complaints with the HHS inspector general and HHS competition advocate recently re IoM.

    At some point more vigorous legal action will be a good idea. We're getting closer to that time as our advocacy gels more especially since the IOM situation is forcing us to up our game.

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