CDC: “Morgellons Disease is all in your head”

CDC Releases Results Of Morgellons Disease Investigation

CBS | Jan 26, 2012

Morgellons Disease images from the Charles E. Holman Foundation http://www.thecehf.org (click photo to see a graphic zoom into Morgellons fibers)

DALLAS (CBS 11 NEWS) – Five years ago, CBS 11 News began investigating a bizarre medical condition known as Morgellons Disease. Those who claim to have it describe unusual symptoms like strange fibers poking through their skin. But, the question all along has been is it real, or is it just in the patient’s mind?

In 2008, CBS 11 was the first to report that the Centers For Disease Control would be launching its own investigation to determine if Morgellons was in fact a new and real disease. (Click here to read the CDC Morgellons press release.) Now, the agency is making its findings public in this report. But, it may not be what patients hoped to hear.

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I feel the itchy and the creepy crawly,” said Cindy Casey when we first met her in 2007. “It’s been extremely disfiguring… every part of my body, hands, legs, arms, and back.”

Casey has been dealing with effects of a mysterious illness for more than a decade.

“I don’t escape it for one moment of the day,” she said. “I’m constantly aware of it.”

She’s one of thousands around the country who claim to have the condition known as Morgellons Disease. Symptoms include lesions, and the sensation of bugs crawling under the skin. But, the most unusual of all the symptoms are tiny fibers that patients say literally grow out of their skin.

“It’s miserable,” Casey said. “It feels like splinters, like you have splinters coming out all over.”

Casey and many other patients have been turned away from numerous doctors who tell them it’s all in their head.

“He basically told me I was delusional,” said another patient. “Delusional Parasitosis is the common diagnosis.”

In January 2008, patients saw hope when the CDC announced it was launching an investigation to determine if Morgellons was indeed a newfound infectious disease.

“We believe that the suffering many people associate with this condition is best addressed by a careful objective scientific analysis,” Dr. Michele Pearson, with the CDC, explained during a 2008 conference call to announce the study.

Four years later, that study is complete, and CBS 11 obtained a copy. Inside, the CDC concludes that “no…infectious source was identified.”

Click here to read the entire CDC Morgellons study

As for the fibers found on the patients in the study, the CDC says those fibers were “consistent with skin fragments or materials such as cotton.”

But, the CDC stops short of saying the condition is all in the patient’s mind. The study says they were “unable to conclude whether this unexplained dermopathy represents a new condition, or a wider recognition of an existing condition such as delusional infestation.”

Doctors Rhonda Casey and Randy Wymore – who research Morgellons at Oklahoma State University and believe it’s a real condition – say while the study doesn’t offer much hope for those suffering, it did not exactly shut the door all together.

“Morgellons is real,” said Dr. Casey. “We know it’s real. What they decided is these patients don’t have this thing we’ve looked at.”

“If this was a delusional disorder and their study proved that, they would’ve said it,” said Dr. Wymore.

We also spoke to Cindy Casey – the North Texas patient – about the findings. She said she’s thankful the CDC made some kind of effort, but doesn’t believe it was a fair study.

Click here to read Cindy’s full response to the CDC findings

While the CDC’s investigation came to a conclusion about the fibers, it did not determine what was causing the lesions on the patient’s bodies. CBS 11 asked if the CDC was planning any further studies, but a spokesperson said further CDC involvement was unnecessary.

.   .   .

Response from Cindy Casey, Morgellons patient and founder of the Charles E. Holman Foundation:

First and foremost, I want to thank the CDC for making a very preliminary effort to investigate this emerging infectious disease that should be of great concern to everybody worldwide.

The study is flawed from the very beginning in the method of patient selections. Only one of these patients was familiar to me and was known to have the symptoms and manifestations we identify as Morgellons Disease.

Sadly, that patient is now deceased. The CDC was strongly resistant to any dialogue with those of us who offered to provide information on what we describe as manifestations of Morgellons Disease.

The CDC describes purulent drainage and associated with the lesions which were investigated in the study. I have seen thousands of Morgellons lesions and one remarkable finding is that Morgellons lesions are never purulent and rarely ever is a Morgellons patient found to have any signs of infection within or surrounding the lesion. It appears that the patients selected by the CDC for this study were not patients who exhibited the characteristic symptoms that we know to be consistent with Morgellons.

It is unfortunate for all that valuable resources were used rather recklessly and no advancement was made in the understanding of this unique pathological condition. In the absence of and resistance to any dialogue or collaboration, the CDC has unfortunately chosen the wrong patient population to study. Thus the results lend no further insight into this mysterious condition.

Delusional Parasitosis and neurotic excoriations are conditions that could easily be mistaken for Morgellons, especially if the investigators are unfamiliar with what we have found to be consistent with Morgellons.

Science is a moving target, and as new scientific information emerges the views of scientists will shift. We are at the very beginning of the Morgellons saga in terms of scientific investigation, and people need to keep an open mind about a disease that is disfiguring, disabling, poorly understood and very frightening. As more physicians and researchers are becoming actively involved with the condition WE identify as Morgellons, science will be forthcoming and a better understanding of the etiology will be determined.

The Charles E. Holman Foundation will be holding our annual conference in Austin, TX on March 24th and 25th of 2012. A lot of new information will be presented by Morgellons researchers. This year we have some interesting new speakers. Dermatologist Peter Mayne will discuss a structured dermatological approach to Morgellons Disease. Microbiologist Marianne Middelveen will discuss her findings from examining the evidence under light microscopy. The conference is geared primarily toward medical professionals but everyone is invited to attend. For more information on our upcoming conference, please visit our website at www.thecehf.org