Bizarre Morgellons Remains a Mystery

Discussion in 'Fibromyalgia Main Forum' started by Missizzy, Sep 26, 2008.

  1. Missizzy

    Missizzy New Member

    Here's a link to an in-depth article on Morgellons. I can't wait to see the completed study.

    It's good to see an article written without the usual sensationalism.

  2. Bluebottle

    Bluebottle New Member

    Thank you, I'm glad these people are beginning to be taken seriously.
  3. sleepyinlalaland

    sleepyinlalaland New Member

    a riveting and horrific read. I think it would be of interest to anyone who also has had conditions dismissed by doctors and also gives insight to the process a new disease must undergo to become "credible".

    It's also fascinating as the author refers to other diseases that are appearing and evolving in what sounds to be disproportionate number in recent years.

    The bottom line that I related to is that doctors will NOT recognize anything that does not appear in a medical book and cannot be covered by insurance.

    This is one of the best articles I've read on Morgellons. I note that it was 2007...wonder when reports should be due from the CDC?

    hmmm...just re-looked at article and am confused on its date; copyright at END of article says 2007, but under headline at beginning of article says "updated 2 hours 59 minutes ago". Only of interest to me because wondering when CDC may make further conclusion or statement.[This Message was Edited on 09/26/2008]
  4. Missizzy

    Missizzy New Member

    Here's something I just found concerning the CDC/Kaiser Permanente Study on Morgellons. I will paste it below.


    CDC mystery disease study heads toward finish line
    Nearing the end of the Morgellons study

    By Spencer Freeman
    August 3rd, 2008

    The Atlanta-based Centers for Disease Control and Prevention, partnering with Kaiser Permanente’s Northern California Division of Research, will complete the second phase of its study of the mysterious, and some say nonexistent, Morgellons disease later this month.

    The CDC launched the study in January, after Congress received thousands of letters from people claiming to suffer from the disease, characterized by skin lesions, rashes and unexplained fibers found in various parts of the body.

    The first stage consisted of identifying all Kaiser Permanente members who may have gone to a physician with symptoms suggestive of Morgellons at any point during the 18 months between July 1, 2006 and Dec. 31, 2007. Researchers then determined whether they met eligibility criteria for the study. In stage two, all eligible members were invited to complete a comprehensive Web-based or telephone survey that examined the duration and severity of a variety of symptoms, reported exposures, other possible precipitating factors and any treatments that may have been found to help.

    According to CDC Spokesman David Daigle, in the third, and final, phase of the investigation, those with active symptoms will be invited to come to the Division of Research for an extensive clinical examination, including collection of skin biopsies, blood and urine samples.

    The CDC does not consider Morgellons a reportable disease, and refers to it as “unexplained dermopathy.” Despite that, the Morgellons Research Foundation fully supports the efforts by the CDC and Kaiser Permanente.

    “We have been asking for it and are pleased [research] has finally begun,” says Doug Buckner, associate director of the MRF. Buckner hopes that the CDC study will open the door for people with Morgellons to receive proper medial treatment.

    The MRF plans to continue financially assisting ongoing efforts by private researchers already dedicated to finding out more about Morgellons disease.

    Researchers hope that the investigation will help doctors learn more about Morgellons, such as who may be affected, the symptoms associated with the disease, and the factors that might have contributed to it. Results of the study will be released by early 2009.

    Also, later this month, a new show on CBS called “The Doctors” is slated to film a two-part segment on Morgellons disease. The show is expected to air in September.

    “This is a story you will hear again and again for those with this disease,” Knilans writes in an e-mail to The Sunday Paper. “We have to bring awareness that this is real—and it is spreading. We have a huge problem and it is being ignored.”

    Buckner agrees: “A doctor told me that if it is not in the medical books or journals, then it does not exist, and that he could not treat what does not exist.” SP

  5. SkeptikSharon

    SkeptikSharon New Member

    Reading this article, I was just horrified! I don't understand why so many patients would be completely disregarded, when this is obviously something that can be SEEN under a microscope. Just because its not in the medical textbooks, doesn't mean it does not exist. There are so many conditions that were not in the textbooks until more recently. And this is something that they can actually take samples of, relatively easily, and SEE!

    So many doctors are just too lazy to actually bother looking into something themselves. Or too arrogant to admit that they don't know what it is. I really dislike most of the doctors out there...