Interesting program through NIH...

Discussion in 'Fibromyalgia Main Forum' started by kjfms, Jul 5, 2010.

  1. kjfms

    kjfms Member

    Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program pursues two goals:

    •To provide answers to patients with mysterious conditions that have long eluded diagnosis
    •To advance medical knowledge about rare and common diseases
    The program is trans-NIH in scope. It is organized by the National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases Research (ORDR) and the NIH Clinical Center. Many medical specialties from other NIH research centers and institutes will contribute expertise needed to conduct the program, including endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics, which are represented among the dozens of participating senior attending physicians who may participate in the program's clinical research.

    Any longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that may be referred to this program, a very limited number will be invited to proceed in the study at the discretion of the program’s medical team.
  2. skeptik2

    skeptik2 Member

    Most patients with CFS get a diagnosis now. The problem is, the
    drs are not trained about it, nor do they want us patients.

    So there is no "medical condition that eludes diagnosis" in CFS.

    The problem is, the doctors think it's a psychiatric illness. Thank
    you, NIH and CDC.

  3. kjfms

    kjfms Member

    Well, each to their own.

    I have FMS, which is not a definitive diagnosis ( in my opinion) along with several other conditions. I thought this might be of interest a few people here.

    This is an FMS board as well.

    Anger is such a wast of time, don't you think?
  4. AuntTammie

    AuntTammie New Member

    While it's nice that you wanted to share this info, fibro and cfs do not fall under the umbrella of undiagnosed diseases.......& unfortunately, your opinion re fibro doesn't matter to the people in charge of this program

    also I don't think skeptik's reply sounded angry - just factual