Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Add a comment on CDC/CFS website!

Discussion in 'Action Alerts and Advocacy' started by *GG*, Dec 28, 2009.

  1. *GG*

    *GG* senior member

    Concord, NH
  2. muffin

    muffin Senior Member

    THIS is what Reeves, et al wrote about the CDC/CFS website & WHY you must comment

    Web Usage Data as a Means of Evaluating Public Health Messaging and OutreachBackground:
    The Internet is increasingly utilized by researchers, health care providers, and the public to seek medical information. The Internet also provides a powerful tool for public health messaging. Understanding the needs of the intended audience and how they use websites is critical for website developers to provide better services to the intended users.
    The aim of the study was to examine the utilization of the chronic fatigue syndrome (CFS) website at the Centers for Disease Control and Prevention (CDC). We evaluated (1) CFS website utilization, (2) outcomes of a CDC CFS public awareness campaign, and (3) user behavior related to public awareness campaign materials and CFS continuing medical education courses.

    To describe and evaluate Web utilization, we collected Web usage data over an 18-month period and extracted page views, visits, referring domains, and geographic locations. We used page views as the primary measure for the CFS awareness outreach effort. We utilized market basket analysis and Markov chain model techniques to describe user behavior related to utilization of campaign materials and continuing medical education courses.

    The CDC CFS website received 3,647,736 views from more than 50 countries over the 18-month period and was the 33rd most popular CDC website. States with formal CFS programs had higher visiting density, such as Washington, DC; Georgia; and New Jersey. Most visits (71%) were from Web search engines, with 16% from non-search-engine sites and 12% from visitors who had bookmarked the site. The public awareness campaign was associated with a sharp increase and subsequent quick drop in Web traffic. Following the campaign, user interest shifted from information targeting consumer basic knowledge to information for health care professionals. The market basket analysis showed that visitors preferred the 60-second radio clip public service announcement over the 30-second one. Markov chain model results revealed that most visitors took the online continuing education courses in sequential order and were less likely to drop out after they reached the Introduction pages of the courses.

    The utilization of the CFS website reflects a high level of interest in the illness by visitors to the site. The high utilization shows the website to be an important online resource for people seeking basic information about CFS and for those looking for professional health care and research information. Public health programs should consider analytic methods to further public health by understanding the characteristics of those seeking information and by evaluating the outcomes of public health campaigns. The website was an effective means to provide health information about CFS and serves as an important public health tool for community outreach.
    Full article
    Tian, Hao; Brimmer, Dana J.; Lin, Jin-Mann S.; Tumpey, Abbigail J.; Reeves, William C.:eek:, J Med Internet Res, 11(4), e52, DOI: 10.2196/jmir.1278

    ShareThis22 December 2009 | Categories: Science, USA | Tags: Education, Health Information, Internet, Public Health.
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  3. muffin

    muffin Senior Member

    Please add your comments to the link at top

    The CDC CFS website received 3,647,736 views from more than 50 countries over the 18-month period and was the 33rd most popular CDC websiteThe utilization of the CFS website reflects a high level of interest in the illness by visitors to the site. The high utilization shows the website to be an important online resource for people seeking basic information about CFS and for those looking for professional health care and research information

    ARE THESE PEOPLE KIDDING? The CDC/CFS website is dreadful, worthless, and has not been updated in four years. The website has NO useful information. The numbers of views show rather powerfully that there is a huge number of CFIDS sick people looking for information. Sadly, the CDC/CFS website IS NOT where they find any information. Instead, they must look elsewhere to other CFIDS websites, blogs and medical sites. The CDC/CFS website is a disgrace. William Reeves is a disgrace. Remove all CFIDS research from the CDC now.

    Sheffield on 24 December 2009 at 9:38 am
    I agree with Sheffield above. This is an elementary school report typical of Reeves shop. Ironic that Reeves questions the worth of the WPI/NCI/Cleveland clinics XMRV study done by some of the top retrovirologists in the world, when he puts out such typical garbage. The hits to the site reflect the severity and widespread nature of ME (CFIDS) not the quality of the site, which is a POS, although much improved from several years ago when it was all lies; now Id say its about half and half.

    Justin Reilly on 28 December 2009 at 5:32 pm
  4. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina

    Holy toledo, somehow I hadn't seen the front page of the CDC CFS site:

  5. oerganix

    oerganix Senior Member

    email the CDC re: the CFS site and/or Reeves


    Maybe if they get a lot of emails regarding this travesty, they will do something. Oh well, I can always fantasize....:mad:

    I emailed them asking for a change of leadership for CFS and an end to insulting "studies" couched in psychobabble.

    If you email them, be sure to mention it is the CFS website or CFS "working group" you are emailing about, as the email address is for the whole CDC.
  6. txfriend


    How the CDC/CFS Info is Wrong!

    The important thing IMO is that anyone, with any other illness can
    still get CFS/ME!

    So, when Reeves says some of these patients have 'other' illnesses, he's right, but that doesn't mean they exclude getting CFS!

    If one has Diabetes, they can still get CFS/ME.
    If one has Major Depression illness, they can still get CFS/ME.
    If one has GERD, they can still get CFS/ME.

    Get it? ANYONE with ANY illness or recognized disease can get CFS/ME!

    This needs to be addressed over and over to all concerned.
  7. Tammie

    Tammie Senior Member

    Woodridge, IL
    The question is, if you go to that link, will you actually be feeding into the b/s theory that the website is getting so many hits, it must be worhtwhile?

    It is utterly ridiculous that counting the number of visits is being considered as proof that it is a valuable site......it just happens to come up when people look for info on CFS - so do many other sites - just bc poepl clcik on it does not mean that they find what is there to be even remotely helpful!! This is yet another ludicrous & twisted presumption by the evil CDC....the only thing the CDC is good at is spin - they are brilliant at that.....they spin absolutely everything to make it soudn beneficial to them, and if they cannot find a way to spin it, then they ignore it, threaten the people behind it, and/or destroy the careers of those behind it
  8. Kati

    Kati Patient in training


    I don't want to give excuses for the guy, but I know dr Hyde has been seeing thousands of CFS patients and he noted the misdiagnosis that patients have gotten over the years, due to the expedited service (or non-service) they got from their PCP. It is only with thorough diagnostic tests that one can rule out these diseases. He once diagnosed someone with a heart attack!!! Another one with cancer- Heck all the "fatiguing illnesses" are a possibilities. I think it is easy for doctors to label you with chronic fatigue-get over it- and send you out the door. Much more difficult to send you for a spect scan, doing the immunologic studies, and a tilt table test or send you to the Pacific Fatigue Lab.

    What in my books is wrong, is the CDC refuses to narrow down to the people that are really ill with myalgic encephalomyelitis, and refuses to believe in biological causes. He has done a great disservice to our community and his activities have been CRIMINAL and the guy is still running lose. This is so wrong.:Retro mad:

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