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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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CDC Contempt for ME Sufferers: the "Dear Sirs, I am SICK" joke letter

Discussion in 'Action Alerts and Advocacy' started by justinreilly, May 8, 2010.

  1. VillageLife

    VillageLife Senior Member

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    tomorrow is a very important day at CFSAC, we will see exactly what the CDC are feeling.
     
  2. mezombie

    mezombie Senior Member

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    Ramsay definition

    I don't quite understand, Tina. Do you think Ramsey formed his conclusions based on just a little bit of evidence? It seems to me he described what he encountered quite well. He didn't have the tools we have now, and left the door open to refinement of his definition .

    See http://name-us.org/DefintionsPages/DefRamsay.htm
     
  3. maryb

    maryb iherb code TAK122

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    After reading that seems to me Ramsey was one of the best docs around at that time.
     
  4. rebecca1995

    rebecca1995 Apple, anyone?

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    Never would karmic retribution be more justified. Those quotes are outstanding examples of moral bankruptcy.
     
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    MEZombie,

    Welcome back! Poor you. You have a lot of reading to do (on the CAA thread)!

    Tina might mean Jon Benet Ramsey (maybe I'm just thinking that since I live a few blocks from where they did).
     
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Why?

    This is of course a hard one b/c you can't see into anyone's head. Hillary Johnson's "the Why" addresses this:
    http://www.oslersweb.com/the_why___a_speech_in_london_86981.htm

    I see it as something like the following based on Osler's Web: Initially the only strikingly abnormal finding in the Tahoe cohort were abnormal Epstein Barr antibody titers. Apparently, in epidemiology, reports of epstein barr outbreaks were felt to be notoriously false (but in hindsight, maybe many of those 'false' outbreaks were ME outbreaks), so CDC was skeptical despite the outbreak.

    Over the months Cheney and Peterson kept contacting CDC and sending in test results. Kaplan and Holmes eventually went out there to shut them up, but apparently mostly to ski. They didn't really investigate and then published in CDC's weekly journal that there was nothing.

    Right from the beginning they and NIH misappropriated all the ME money for years and lied to Congress about it in their in person testimony year after year. After they had misappropriated the first dollar, I think they had pretty much crossed the rubicon and had to keep constantly lying about everything in their (successful) attempts to retain their careers and stay out of prison. All this was of course fueled by sexism and arrogance.

    In the UK and Europe it seems to be more about saving insurers, including the governments, money. In the US there could, of course be some undiscovered bribes or other consideration flowing from insurers to the responsible people at CDC and NIH.
     
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Something got lost in the quick reference. Sorry, it is my fault. I am not talking about that Ramsey, I am talking about this Ramsey: http://images.teamsugar.com/files/upl1/10/104169/28_2008/52023009.preview.jpg

    I thought the context of talking about detectives in a criminal investigation would make it clear. This was a BIG, BIG news story here in US. Parents were suspects early on. Heck, I even thought they did it or were covering for their son. About a year or two ago, parents were formally declared to not be suspects.

    Gerwyn, I can certainly understand your feeling. I don't know if I would go that far. I think I will wait and see how they handle this XMRV research, which is in a totally different area before I write off every part of it. Plus, change in leadership may make a difference. But certainly, trust has been lost, to put it mildly. That means to gain trust back, CDC and any who were complicit in their biased approach, must also work harder to gain that trust back.

    If I was falsely accused of a crime, would I get an attorney? Would I want to sit down and talk to detectives without an attorney present? I'm not talking about helping detectives in the beginning, I am talking about after I have been declared as the person they think did it.

    Just in, I think you hit the nail on the head.

    Tina
     
  8. mezombie

    mezombie Senior Member

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    Thanks, Justin and Tina, for clearing up my confusion regarding the Ramsey reference.:ashamed:

    And thanks for the welcome back, Justin, though I won't be able to stick around long. I'll be offline starting Tuesday -- again.:sad:
     

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