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Media manipulated by "Morgellons Disease" advocates

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You would think it was the war in Iraq, or the Israeli-Lebanese conflict. The amount of news coverage being given, sometimes seemingly unquestioningly, to a questionable condition some call “Morgellons Diseaseâ€? is staggering.

Just in June and July, the “Morgellons Research Foundationâ€? boasts on its website of appearances on ABC, NBC, CNN, and on local stations in Tulsa, South Bend, San Diego, San Antonio, New York and Salt Lake City. The ABC Good Morning America show and NBC Today each featured stories on Morgellons last Friday at almost the exact same time.

Also just in the last two months, print coverage of Morgellons has appeared in Time magazine, Popular Mechanics, the Washington Times, Chicago Tribune, Pittsburgh Post-Gazette, Minneapolis Star Tribune, Dallas Observer, and the San Francisco Chronicle.

The “Morgellons Research Foundationâ€? lists these signs of the “diseaseâ€?:

1. Skin lesions with intense itching.
2. Crawling sensations, both within and on the skin surface.
3. Significant fatigue.
4. Cognitive difficulties described by patients as “brain fog”.
5. Behavioral effects are common in many patients. Many have been or will be diagnosed as Attention
Deficit Disorder, Attention Deficit Hyperactivity Disorder, Bipolar Disorder, or Obsessive-Compulsive
Disorder.
6.“Fibersâ€? are reported in and on skin lesions. They are generally described by patients as white, but
clinicians also report seeing blue, green, red, and black fibers, that fluoresce when viewed under
ultraviolet light.

Yet what suddenly made this such a hot story?

Many stories quote or cite just one researcher from the Oklahoma State University Center for Health Sciences & College of Osteopathic Medicine.

But stories don’t seem to discuss who named this a disease.
Journalists don’t seem to push for much evidence.
And the journalists seem to have short memories, forgetting past, very similar stories.
They also don’t seem to mind that they are being manipulated: breast cancer, prostate cancer or heart disease aren’t even getting this kind of attention. And what do they really know about the people making the claims?

But someone is pushing all the right media manipulation buttons – something that is increasingly easier to do these days.

One skeptical website, though, may be publishing more than the advocates. See Morgellons Watch, a site dedicated to examining the claims made regarding this phenomenon. The site’s host writes: “I believe that much of the current media coverage of Morgellons is inaccurate and sensationalist. This is misleading sick people into thinking they may have a terrible disease, when the evidence does not indicate that such a disease actually exists. People have very real physical symptoms, but those symptoms have many possible causes, which have very real treatments. Misdirecting people into a wild goose chase, after a disease that probably does not exist, is wrong.â€?

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Comments (10)

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T Young, PhD

July 31, 2006 at 9:19 am

Just to play devil’s advocate here, is the media attention that Morgellons Disease is getting substantially different than what happened with Chronic Fatigue Syndrome. For that matter, was that situation just as bad?

Michael

July 31, 2006 at 2:53 pm

The Morgellons situation differs from early popularizations of CFS in many respects. The most important different is that there is a specific physical symtom for Morgellons that seems to be new to science: fibers emerging from the skin. Without this key symptom, Morgellons is nothing more interesting that CFS with dermatitis artefacta. The “researchers” have consistently failed to produce any evidence that these fibers are anything more than lint.
The combination of: a professor in a lab coat, yucky photos, nice patients with interesting stories, a stark dichotomy of Disease vs. Delusions, and a helpful and facilitating media relations coordinator (Ken Cowles), is what makes this story so seductive to the media.

Informed Reader

August 1, 2006 at 5:04 pm

For the record, the Popular Mechanics piece was published in June, 2005 — more than a year ago — and it was extremely objective in its analysis, and included comment from many experts — and many non-Morgellon’s-disease-championing experts. Furthermore, the story did disclose who named the disease, and made the salient point that many of the Morgellon’s-specific symptoms began appearing around the same time Morgellons.org went live.
Quote: The apparent success of antibiotic treatment for Morgellons hasn’t swayed doctors like Lynch–mainly because pathologists have failed to find an infectious agent. “These scientists can recognize things down to the prion level, and viruses that do everything to evade detection,” he says. Lynch’s preferred treatment: the antipsychotic drug risperidone–which works, he says, in as little as two weeks.
Another prominent dermatologist, who insisted on anonymity out of concern for his safety, says he has diagnosed 50 or so Morgellons patients with cutaneous dysaesthesia–a neurological disorder that can result in the sensation of scuttling insects. And the spiny things? “In every case I’ve seen it’s a textile fiber, and it’s on the surface of the skin,” he says. He typically puts a cast over the lesions to prevent further irritation and after four weeks removes it. “Guess what?” he says. “The lesions are healed.”
Leitao and other Morgellons activists say that, with the Web as a primary tool, they’ll continue working to have the illness investigated as an infectious disease. Doctors interviewed by PM say this unilateral approach hinders objective analysis of symptoms they’ve seen for decades. Well, all symptoms except for one: Widespread reports of the strange fibers date back only three years, to the time they were first described online, at http://www.morgellons.org.

jeep

August 3, 2006 at 12:03 am

Today was the very first time I have ever heard of this disease (thus the reason why I did a search and found this). Why am I searching this? In my home town, there is a little old lady who has had her house sprayed for bugs 6 times. She has been having health problems and they once diagnosed her with lyme disease and sent her home. After continued complaints about bugs crawling on her, she was told she was imagining these things. Others told her that bed bugs had found her house. Then, she started having larvae looking things emerge from her skin and she has captured both samples of these larvae and some actual flying insects. She turned the insects over to the health department and they sent them to a university lab and they are unable to identify them and the dna cannot be extracted with normal procedures. A husband and wife couple I know went to help her prepare for another spraying. Now the wife also feels the crawling sensation and has pulled fibrous particles from her skin. I have been told that the university has sent the samples to the CDC. For something that seems to be tarnished as psycho-make-believe, I can tell you this story has me searching for answers.

Jimbo

August 5, 2006 at 8:01 am

Perhaps the increased severity of those suffering coinciding with recent media reports only represents those who were too ashamed to come “out of the closet” with symptoms that their own physicians embarrassed them with? However, it’s documented on websites and forums just how the large the amount of sufferers “brave enough to discuss this” really were, even before all the media attention. They found each other by researching the fibers and other symptoms, prior to ever knowing they were not alone.
Read up on Risperidone and other anti-psychotic drugs and see for yourself that all contain insecticides. Coincidence?
And just for the record, many with the fibers do not have any lesions yet the fibers still exist – I am one of those with no lesions but have fibers that have been identified as “of unknown origin”, not matching “any other agent in the database”.
Once again, the common denominator that knocks the credibility out all of the amateur theories is the fibers that cannot be identified. Find a true Morgellons patient, conduct your own research. There are thousands just begging for this chance so why not give it to them and form an educated and firsthand opinion?