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CDC Interview on the CFS Toolkit

Discussion in 'General ME/CFS News' started by Mindy Kitei, Oct 27, 2012.

  1. Mindy Kitei

    Mindy Kitei

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    I asked CDC why the agency won't remove the CFS Toolkit from CDC's website. For one thing, CDC insists the Toolkit is accurate.

    Mindy Kitei
    CFS Central
    www.cfscentral.com
  2. alex3619

    alex3619 Senior Member

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    The CDC does not appear to be doing anything to increase the patient community trust. If the revision does not substantially address the problems then they will have failed yet again.
    justinreilly, beaker and ggingues like this.
  3. Omar88

    Omar88 Senior Member

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    Cause our disease is political and am 100% sure of that, they don't want to help us and they will be waiting until most of us will be died and then they MIGHT think of doing something !!
    justinreilly likes this.
  4. Shell

    Shell Senior Member

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    Thanks for the link Mindy. I see teh CDC response was the usual offical-cum-borg hive response that always seems to happen.
    I suppose they have the view that is so prevelent in politics that if you are going to lie, you may as well lie boldly.
    The fact that they are lying so boldly means they feel safe to do so.
    justinreilly likes this.
  5. GhostGum

    GhostGum Senior Member

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    Or they just do it to maintain the integrity of the hive and individuals because of something that should have never started, old habits die hard. Sadly even when it does come back to bite them in the arse they will probably still come out of it, or find ways to come out of it mostly damage free; or just adapt when it is convenient.

    Not showing weakness and mistake is apparently more important than progression and understanding, probably the greatest downfall of the human race.
    Shell and PhoenixDown like this.
  6. Andrew

    Andrew Senior Member

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    They say "it's accurate," but this is a total crock. For one thing, they have clearly stated that the Emperical definition is a research definition, and not meant for clinical use. If it's not meant for clinical use, why do they put it into their clinical tool kit. Why are they not telling clinicians that they are giving them an unsuitable definition. The answer is they have no integrity. And how do they back up their claim about GET. They do not cite any studies that use their definition of CFS. What they do is cite Oxford criteria studies, which have definitions that disagree with the CDC definition, the Canadian definition, and the International definition. .
  7. beaker

    beaker CFS/ME 1986

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    A little brainstorming --- how to find a solution to the problem:
    maybe we should go above their heads, since they won't budge.
    a barrage of letters/emails, with a brief explanation as to why it is wrong and what should replace it ( the ICC/ICP)
    sent to ??? Kathleen Sebelius or the White House ( special aide Obama appointed to update him) or ???
  8. Nielk

    Nielk

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    I wonder who the "clinicians" are that they consulted with who agree that this toolkit is accurate?
    leela, taniaaust1, ahimsa and 6 others like this.
  9. Merry

    Merry Senior Member

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    Exactly, Nielk.

    I want to see a list of clinicians that the CDC consulted about the toolkit.
  10. jimells

    jimells Senior Member

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    There's an old saying in the (now comatose) labor movement: "Direct Action Gets the Goods". This means don't ask for crumbs, or pray for help from the bosses and the bureaucrats - we have to take action ourselves to find treatments that work, which is exactly what we are doing on this forum...

    Muliple strategies and tactics are always a good idea, since no one can predict with certainty which ones will be fruitful, so letter/emails would at least let the medical establishment know we are still alive and kicking (or resting on the couch). But I can't help thinking that in the long run we will get more out of the independent research, clinician, and patient communities than we will from the CDC/NIH bloatocracies...
    taniaaust1, Bob, Merry and 6 others like this.
  11. jimells

    jimells Senior Member

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    CDC says:
    This is hardly a ringing endorsement of their own website. In fact it strikes me as an attempt to distance themselves from it.

    CDC says:
    In other words, a faceless committee that no one will take responsibility for. Disgusting, but typical. Here again, they are running away from it, but no one has the stones to put their career on the line and stand up and say, "This is wrong".

    Of course I realize that people are trained from birth to blindly obey, never question, enforce every rule no matter how stupid and petty, and never say "NO" to the boss. I would just like those people to know that if their grandmothers and grandfathers had never dared to stand up, everyone would *still* be working 80 hours a week for a dollar a day.
    Sasha likes this.
  12. Jarod

    Jarod Senior Member

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    planet earth
    Oh yes... The advisory panel "behind the curtain"!

    If they are using secrecy, maybe they've got something to hide?
  13. Nielk

    Nielk

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    What would be great is if we could get a statement signed by many ME/CFS clinicians to the CDC showing how and why their toolkit is so flawed.

    What could they say then?
  14. Andrew

    Andrew Senior Member

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    They would say they disagree, and that their information is correct.
    taniaaust1 and Valentijn like this.
  15. Nielk

    Nielk

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    We can't win.:confused:
    Little Bluestem likes this.
  16. Bob

    Bob

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    Do you have a freedom of information bill in the USA?
    If so, it could be worth requesting that the CDC explains exactly what advice and information they have based their decisions on.
    taniaaust1 and Valentijn like this.
  17. Andrew

    Andrew Senior Member

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    BTW, I don't mean to imply we should take the pressure off. I think it's necessary to keep the pressure on. Just don't expect success to be just around the corner.
    WillowJ and Little Bluestem like this.
  18. taniaaust1

    taniaaust1 Senior Member

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    I suggest someone to ask them questions on the following and bring all that to their attention. Maybe ask them why are they citing oxford criteria studies when that isnt even the CFS criteria they are using? etc Make them clarifiy everything or agree there is issues which need to be changed.
  19. Sasha

    Sasha Fine, thank you

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    I think an open letter from our ME/CFS clinicians to the CDC would be great. Who would have the contacts to organise this?
    justinreilly likes this.
  20. gregf

    gregf Senior Member

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    The CDC has caused the greatest medical disaster of all time. Everything they do will be directed by lawyers to stall for time and avoid the truth. Much like the Catholic church over child sex allegations, it is pointless trying to compromise with them or get them to change. You can be sure that any research leads they undertake will be deliberately going up a dead end. As such most efforts along these lines by us will be to no avail, so be prepared for frustration.

    We should all be supporting the ICC tools 100%.
    Shell, justinreilly and taniaaust1 like this.

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