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Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling...
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New change back to the CDC/CFS page as of 10 August? Please go see

Discussion in 'Action Alerts and Advocacy' started by muffin, Aug 10, 2010.

  1. muffin

    muffin Senior Member

    Please someone go look at the CDC/CFS page and see if they did not change it back to a less nasty/crazy page. Looks like a change to me. Gone is that beyond psychotic study by Reeves on our personality disorders. Can't find it. No change date at the bottom that I could see either.
    As an aside: take not that the CDC is citing that there is 4,800 biomedical journals on PubMed. Use this number for the studies done on CFIDS.

    Did the CDC change the nutjob website for CFS back to something less nasty/crazy?????????

    CDC - Publications - Chronic Fatigue Syndrome (CFS)
    Screen clipping taken: 8/10/2010, 8:35 PM

    CDC Home
    Centers for Disease Control and Prevention
    Chronic Fatigue
    General Information
    Information for
    Healthcare Professionals
    News & Highlights
    Surveillance studies (9)
    Case Definition (9)
    Studies of Causes (41)
    Pathophysiology (19)
    clinical Picture (18)
    Medical Management (3)
    Economic Impact (2)
    Molecular Epidemiology
    cluster Investigations
    Education and
    Evaluation (4)
    CFS Toolkit
    Meetings & workshops
    CFs Programs
    Chronic Fatigue Syndrome
    This is a compilation of publications by the CDC CFs Public Health Research Program from 1993 to
    present. This section indudes only publications involving the CDC CFs research group. The National
    Institutes of Health Trans-NIH Working Group for Research on Chronic Fatigue Syndrome
    contains a link to the PubMed database that includes peer reviewed articles on CFS in more than
    4,800 biomedical joumnals over the last dxcade.
    The objective of CDcs cFs research program is to devise control and prevention strategies for CFs
    The research strategy is based on longitudinal surveillance of defined populations. This avoids the
    bias of studies based on patients referred from physicians practices or studies that solicit
    volunteers. We use random digit dialing to evaluate households for unweilness, detailed
    telephone interviews of well and unwell members of surveyed household, and then detailed one
    day dinical evaluations of those identified as possibly having CFs and randomly seledted well
    individuals. The surveyed populations are followed over time (cohort design) to identify incident
    cases and evaluate the dinical course of the illness. Finally, people identified with CFs and various
    controls are invited to participate in multi-day in-patient studies. In addition to questionnaire data,
    we measure clinical parameters (e.g., polysomnography, orthostatic instability), evaluate cognitive
    function, measure immune status (e.g., cytokines), evaluate neuroendocrine status (e.g., diurnal
    cortisol profiles), determine allostatic load, evaluate gene expression profiles, measure genetic
    polymorphisms, and measure the proteome (e.g., sELDI-TOF). Clearly CFs represents a complex
    illness that involves multiple body systems, includes alterations in homeostatic systems, and
    results from the combined adtion of many genes, environmental factors and risk-conferming
    behavior. The research group is multidisciplinary and indudes physicians, epidemiologists,
    behavioral scientists, statisticians, microbiologists, and mathematicians.
    Although somewhat artificial, this compilation of publications from the CDC CFs Public Health
    Researdh Group is divided into those dealing primanly with surveillance, defining CFS, studies of
    causality and risk factors, pathophysiology, clinical aspects, medical management, economic impact
    and molecular epidemiology. Each artide is referenced, includes a summary, and a copy of the
  2. *GG*

    *GG* senior member

    Concord, NH
    Do we really have to monitor this bogus website? :ashamed:

    It is so disgusting/disturbing and I feel that we have better things to do with my/our time! like trying to find something to help us and support us. Sorry, just venting!! I just wish medical "professionals" would not go to this site for "expert" advice?:eek: I know I don't visit their site, and have rarely had the inclination to! :(Most rational thinking adults know that you don't go to gov't websites for unbiased info and efficiently run anything!:worried: We go to other websites, right?:Retro smile:

    I wish we could just make them irrelevent, therefore, no one would care what they say!;) Why are they such an authority?:confused: Because of the good studies they do/have done?:ashamed: Why, why, why!;)

    Hopefully we don't really need the federal gov't!:worried: Look at what the WPI has done!! :D Since they don't want to do their jobs! Perhaps some really powerful and rich person could catch this damn disease and bring the awareness up some notches and fund what ever we need!:Retro redface: Just tired of baby sitting these ASSHOLES, like we don't have enough to do as it is!:Sign Good one::Sign Help::Sign giggle::In bed::sleepy::Sign Please::wheelchair:

    We need a Tea Party group to "Watchdog" them, make them do their jobs or put them out of Business!
  3. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    The CFS CDC watchdog group LOL

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