By Jim Schutze
By Rachel Watts
By Lauren Drewes Daniels
By Anna Merlan
By Lee Escobedo
Part of the problem with a disease like Morgellons, Jones says, is that its symptoms are both vague and varied. Before public health officials can investigate, there must be a clear definition of the disease. The Morgellons Research Foundation says they have that definition, but there is no one symptom, or even group of symptoms, that defines Morgellons. While most Morgies have lesions and fibers, some do not. The schoolteacher in Allen who spoke to the Dallas Observer, for example, says she doesn't have any outward signs of the disease. Her symptoms include the feeling that something's crawling under the skin of her forehead, trouble sleeping and concentrating, and, possibly, the disintegration of her teeth and fingernails.
"Trying to do studies on a group like this becomes virtually impossible because you may have 10 percent of the people who meet a real strict definition and a whole bunch of other people who don't," Jones says. "If you go through 10 patients and one is having discolored sweat, another one's having pieces of spaghetti stick out of his skin and another one's having, I don't know, heel pain, it's really hard to think what would tie these things together.
"Maybe there are three different diseases. In which case trying to give them all the same label and trying to figure out a single cause for what could be a group of diseases turns out to be an investigational nightmare."
The most important thing, Jones says, is for patients to find a doctor who will listen. Because as crazy as it sounds, Morgellons could be real.
Before contacting the CDC, the Morgellons Research Foundation pressed public health officials to investigate, first in California and then in Texas, because those two states had the most reported cases. Initially, their requests were met with genuine respect and concern, says Leitao, the MRF executive director. But over time, the response soured. In Texas, for example, Leitao was ultimately referred to a report linking adverse childhood experiences with serious behavioral health problems later in life. Perhaps this was the explanation for the symptoms of Morgellons disease.
The response from the CDC hasn't been much better. It has taken the federal agency more than a year just to form an investigational task force. And while the task force is good news to Morgies, some wonder if it's just talk. After all, the task force was first announced in January, and so far none of its members has been named publicly.
CDC spokesman Dan Rutz says the agency has moved slowly not because it doubts Morgellons is real, but because that's the nature of governmental agencies. And he insists that the task force is more than just lip service. An infectious disease specialist has been named to head the group (which will also include environmental disease and mental health experts), although he can't release her name.
"We aren't saying anyone is making this up, that's not our contention," Rutz says. "What we aren't sure of is if this represents a new entity, you know, a disease. I mean we're not using that term yet, we're kind of describing it as a syndrome, but for the most part there is no case definition.
"So we really don't know if these are apples and apples, these various cases, or if they represent common symptoms that may have different explanations if they are examined critically."
The biggest problem, Rutz says, is that the CDC has yet to receive a sample of something it can study. People have sent in material that they have removed from their bodies, but these samples are contaminated, Rutz says. The CDC does not have a clinic where doctors can take samples. Instead, they are waiting for samples to be sent in from public health officials.
"That's the Catch-22," says Savely, who treats Morgellons with strong doses of antibiotics, often without success. "The CDC won't look into it until they hear from local or state public health officials, and they won't look into it until they hear from physicians. Well, the physicians won't report the problem until the CDC gives them a directive on it. It's just insane."
Savely, who was voted Texas nurse practitioner of 2004 by her peers, was forced to leave the state in March. The doctor who supervised her practice said he could no longer do so, according to Savely, because the Texas Medical Board warned him that he was putting his professional standing at risk by backing her. She now practices in San Francisco under Dr. Raphael Stricker, who also treats Morgellons.
Savely says she doesn't mind being on the fringes of medicine. She points out that diseases like chronic fatigue syndrome and fibromyalgia were initially viewed with skepticism. "Well finally they're getting a little bit of respect now," she says. "At least from people realizing they actually do have something wrong with them. But for the longest time doctors just said, 'You need to see a psychotherapist, you don't need to see me.' You see this a lot in medicine--anything that's complex and can't be readily diagnosed by some known disease is generally referred off to a psychiatrist."