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Announcing a survey for meeting with CDC

Discussion in 'Action Alerts and Advocacy' started by usedtobeperkytina, Feb 16, 2011.

  1. SOC

    SOC Senior Member

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    I don't think so. I think their job includes evaluating the economic impact of the illness as a public health issue, but not the lobbying (or whatever) for funding of research. Somebody else is supposed to use the economic impact data they produce and use it to decide research funding.
     
  2. Tammie

    Tammie Senior Member

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    I absolutely agree with your points; however, I personally still think that using the Candian Criteria is even more important, in that if we don't demand they use good diagnostic criteria, they will continue to grp patients who don't even have CFS in with us and continue to waste time and money and to say that it is a pscyh illness......if true ME/CFS patietns are not being studied and are not the only grp of patients being studied, we are still spinning our wheels in a big way

    also using the rt definition can lead to the same thigns that you mentioned, though I do really want to see aname change, too, and if the name chaneg and proper defintion were accomplished together, it would really have an impact
     
  3. Snow Leopard

    Snow Leopard Senior Member

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    If that is true, then there is something truly flawed with the structure of their organisation.
     
  4. Snow Leopard

    Snow Leopard Senior Member

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    We need to name it after the original doctors. Similar to Guillain–Barr syndrome
    ME can be renamed Ramsay syndrome, CFS to Peterson syndrome or similar. I know someone from Dr Leonard Jason's group is doing a history of CFS, perhaps they could come up with a better name along these lines?
     
  5. SOC

    SOC Senior Member

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    Why do you say that?

    Not that I don't agree that the CDC organization is flawed. ;) I just don't see why the fact that they're not the ones deciding who gets research funding implies that.
     
  6. SOC

    SOC Senior Member

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    Naming after discoverers is out-of-date in science. Now the preference is to name the disease something indicative of the condition itself. It became evident that while naming discoveries after the discoverer was an honor, it got in the way of communication and clarity. This is true across the sciences, not just in medicine.

    My personal preference would be something more along the lines of Neuroimmune Disease (per WPI), or Neuro-endrocrin-immune Disorder.
     
  7. SOC

    SOC Senior Member

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    CDC Mission Statement

    The CDC is NOT a medical research facility. It is a Public Health organization.

    [my bolding]

    Notice the lack of original research, funding for research, lobbying for funding, or almost anything about newly discovered illnesses.

    The only mission they have that could be related to a new or mysterious illness is,
    , which they fell flat on their faces on over 25 years ago in Incline Village.

    IMO, they have no business in ME/CFS at all until we know enough about it to expect "prevention" and health professional training.
     

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