In 2008 the CDC made a statement that – on the surface – appeared to support the view of the victims’ complaint but the CDC investigators at Keiser Permanente continued to blame the patient for “imagining” their medical condition despite the qualified and highly public conclusions of Dr. Randy Wymore at Oklahoma State University. (source)
With no offer of help from the CDC, retired government scientist, Cliff Carnicom at Carnicom Institute remains the only investigator to make documented progress at revealing the environmental source and possible cure for Morgellons syndrome. Carnicom recently announced several milestones of progress in his newsletter. Also see this excerpt from the Aug, 2012 CBC meeting Here
Cliff Carnicom Presents Morgellons at CDC Conference
8/7/2007 – CDC Requests Bay Area Morgellons Study (Source)
OAKLAND, CA — KTVU Channel 2 has learned the federal Centers for Disease Control has asked Kaiser Permanente to begin the nation’s first epidemiologic study of “Morgellons Disease,” a mysterious ailment that the government terms an “unexplained and debilitating condition that has emerged as a public health concern.”
KTVU Health and Science Editor John Fowler was the first in the nation to report on this “mystery disease” as it was called in 2004. He reported the skin disorder seemed to cause fibers and filaments to emerge from the skin of sufferers, and also seemed to cause neurological problems patients described as “brain fog.”
John followed up with other reports, and founders of a non-profit group hoping to help sufferers understand the disease named it Morgellons. As of February this year, the
Morgellons Research Foundation Oklahoma State U. Center For Health Sciences has identified more than ten thousand families nationwide. John profiled former A’s pitcher Billy Koch who says both he and his wife have symptoms.
KTVU has obtained a federal Request for Quotation, delivered to Kaiser Permanente, that says the CDC now wants its nationwide study to be focused in the Bay Area because 24% of Morgellons patients “reside in California with geographic clustering in the San Francisco metropolitan area.”
Federal doctors now want Kaiser Permanente to conduct an urgent epidemiologic investigation with results due by next May “…to better characterize the clinical and epidemiologic features of this condition; to generate hypotheses about factors that may cause or contribute to sufferers’ symptoms; and to estimate the prevalence of the condition in the population; and to provide information to guide public health recommendations.”
The CDC for the first time publicly says Morgellons is “an emerging public health problem.”
1/26/2012 - CDC study finds no infectious cause for mysterious Bay Area illness (source)
ATLANTA, Ga. — Imagine having the feeling that tiny bugs are crawling on your body, that you have oozing sores and mysterious fibers sprouting from your skin.
Sound like a horror movie? Well, at one point several years ago, government doctors were getting up to 20 calls a day from people saying they had such symptoms.
Many of these people were in California and one of that state’s U.S. senators, Dianne Feinstein, asked for a scientific study. In 2008, federal health officials began to study people saying they were affected by this freakish condition called Morgellons.
The study cost nearly $600,000. Its long-awaited results, released Wednesday, could identify no common underlying medical condition or infectious source for Morgellons.
“We found no infectious cause,” said Mark Eberhard, a Centers for Disease Control and Prevention official who was part of the 15-member study team.
The study appears in PLoS One, one of the Public Library of Science journals. The study can be accessed at the PLoS One website.
Sufferers of Morgellons (pronounced mor-GELL-uns) describe a variety of symptoms, including fatigue, erupting sores, crawling sensations on their skin and — perhaps worst of all — mysterious red, blue or black fibers that sprout from their skin. Some say they’ve suffered for decades, but the syndrome wasn’t named until 2002, when “Morgellons” was chosen from a 1674 medical paper describing similar symptoms.
Afflicted patients have documented their suffering on websites and many have vainly searched for a doctor who believed them. Some doctors believe the condition is a form of delusional parasitosis, a psychosis in which people believe they are infected with parasites.
Last May, Mayo Clinic researchers published a study of 108 Morgellons patients and found none of them suffered from any unusual physical ailment. The study concluded that the sores on many of them were caused by their own scratching and picking at their skin.
The CDC study was meant to be broader, starting with a large population and then went looking for cases within the group. The intent was to give scientists a better idea of how common Morgellons actually is.
They focused on more than 3 million people who lived in 13 counties in Northern California, a location chosen in part because all had health insurance through Kaiser Permanente of Northern California, which had a research arm that could assist in the project. Also, many of the anecdotal reports of Morgellons came from the area.
Culling through Kaiser patient records from July 2006 through June 2008, the team found — and was able to reach — 115 who had what sounded like Morgellons. Most were middle-aged white women. They were not clustered in any one spot.
That led to the finding that Morgellons occurred in roughly 4 out of every 100,000 Kaiser enrollees. “So it’s rare,” Eberhard said.
Roughly 100 agreed to at least answer survey questions, and about 40 consented to a battery of physical and psychological tests that stretched over several days.
Blood and urine tests and skin biopsies checked for dozens of infectious diseases, including fungus and bacteria that could cause some of the symptoms. The researchers found none that would explain the cases.
There was no sign of an environmental cause, either, although researchers did not go to each person’s house to look around.
They took fibers from 12 people, which were tested at the Armed Forces Institute of Pathology. Nothing unusual there, either. Cotton and nylon, mainly — not some kind of organism wriggling out of a patient’s body.
Skin lesions were common, but researchers concluded most of them were from scratching.
What stood out was how the patients did on the psychological exams. Though normal in most respects, they had more depression than the general public and were more obsessive about physical ailments, the study found.
However, they did not have an unusual history of psychiatric problems, according to their medical records. And the testing gave no clear indication of a delusional disorder.
So what do they have? The researchers don’t know. They don’t even know what to call it, opting for the label “unexplained dermopathy” in their paper.
But clearly, something made them miserable. “The absence of evidence is not evidence of absence,” said Felicia Goldstein, an Emory University neurology professor and study co-author.
She said perhaps the patients could be helped by cognitive behavioral therapy that might help them deal with possible contributing psychological issues.
KTVU Health and Science Editor John Fowler was among the first journalists to report on Morgellons almost eight years ago in March of 2004. Many Bay Area patients told KTVU the disorder they have is real.
“It’s kind of understandable why people don’t believe us, because it sounds so weird,” said skin patient Cindy Casey.
“It’s not a hygiene problem. It’s not in your head,” said skin patient Susan Biship. “There’s something else going on.”
More than 150 people in the Bay Area reported unexplained lesions with bizarre filaments. Doctors often diagnosed patients as delusional.
“I’m not doing that,” said skin disorder patient Wendy Tripp. “I was really offended. You can see these little fibers come out. You can’t believe they’re coming out of your skin.”
On Thursday, San Francisco blood disease specialist Raphael Stricker — who has been treating Morgellons patients — told KTVU the CDC study was inadequate.
“[It's] essentially coming up with nothing,” said Stricker.
Stricker said the CDC reported 80 percent of patients also had protein fibers, not cellulose.
“So there is something else there that they are describing,” said Stricker. “The CDC described that is very real and we still don’t understand.”
Other researchers have suggested a nerve problem called parasthesia or a reaction to spirochetes, similar to lyme disease.
Kim Vincent suffered — along with her four children — fighting with doctors for years.
“Not only turned away — ‘I can’t help you!’ — but they say and you’re crazy too,” said Vincent.
The CDC also said 75 percent of sufferers reported significant exposure to solvents. Doctor Stricker said that and other findings point out the need for further research.
The study is not expected to be the last word on the subject.
Among those with additional questions is Randy Wymore, an Oklahoma State University pharmacologist who for years was the most reputable scientist to look into it and who has concluded Morgellons is not a psychiatric disorder.
On Wednesday, Wymore said he had not seen the CDC paper and was unable to comment on it. But when the study began, he questioned whether Kaiser patients with Morgellons would participate, especially if they were unhappy with how they were previously handled by their Kaiser doctors.
“There is always the question: How many of the study participants actually have Morgellons Disease?” he said, in an email.
The CDC is not planning additional study, however. The agency’s expertise is in infectious diseases and environmental health problems, and the researchers saw no evidence of that.
“We’re not mental health experts,” one CDC spokeswoman said.