An article in the San Francisco Cronicle today

[Steve Frey]

Thursday, January 17, 2008 (SF Chronicle)
Bay Area has first major U.S. study of Morgellons disease
Erin Allday, Chronicle Staff Writer


Bay Area researchers are beginning the first major U.S. study into a
mystery disease known for its frightening symptoms - among them, open
sores and unidentifiable objects poking out of the skin - that doctors
have long suspected is all in patients' heads.
The study into Morgellons will start immediately, as Kaiser Permanente
contacts Northern California patients who have reported symptoms of the
mystery disease in the past 18 months. The research will be funded by the
U.S. Centers for Disease Control and Prevention.
Researchers are hoping to come up with a more specific definition of
Morgellons and how prevalent it is in the Bay Area, which has one of the
largest concentrations of self-reported cases of the disease in the
country.
They also hope to determine once and for all whether Morgellons is a
psychiatric condition. "The suffering and the impact of this condition on
people's lives, whatever you want to label it, what they're experiencing
is real," said Michele Pearson, a principal investigator with the CDC.
"That's why this agency has decided to look into it in-depth."
The CDC is not yet agreeing that Morgellons is a medical condition, but
Pearson said there's no debating that people are ill and need help.
In addition to the skin problems, symptoms of Morgellons include fatigue,
confusion and memory problems, joint pain and a sensation of pins and
needles or something crawling on the skin.
Many doctors believe that Morgellons is actually a psychiatric condition
called delusional parasitosis. They say the filaments that patients report
growing out of their skin are actually lint or threads from clothing, and
the open sores are caused by patients scratching at skin when they
perceive a crawling sensation.
San Francisco resident Pat Miller has been to more than a dozen doctors
since he first developed symptoms several years ago. He's been diagnosed
with a wide variety of skin conditions, as well as delusional parasitosis,
and few doctors have been willing to consider Morgellons.
He said the Kaiser study, no matter the outcome of it, feels like
validation of what he's been going through.
"It sounds to me like if they're involving Kaiser in this study and
tracing it in a systematic, methodical way, that pretty much means that,
yeah, they think there's something going on," Miller said. "I've developed
this lack of love for doctors and health care systems. You pretty much
have to become your own doctor."
Unofficial reports of Morgellons are becoming more common, said Pearson.
The CDC has taken 1,200 calls in the past year from patients who believe
they have Morgellons, and at Kaiser, doctors are increasingly frustrated
trying to diagnose a condition with no known cause or treatment.
"There are many hypotheses as to what may be causing it, but there is no
textbook on this condition," Pearson said. "It's been a very frustrating
journey, not just for patients but also for the physicians treating them."
Patients have been reporting Morgellons symptoms to the CDC regularly for
the past three or four years, although it's possible the condition has
been around for centuries. A South Carolina mom who believes her three
children have the illness found a reference to a similar disease in a 1674
medical study. The disease was called Morgellons in 1674, and modern-day
sufferers adopted the name.
The CDC does not officially report cases of Morgellons. The nonprofit
Morgellons Research Foundation says that more than 10,000 families in the
United States have registered with the Web site, claiming at least one
family member has the disease.
About 24 percent of registered families are in California, and the Bay
Area is one of several hot spots in the country. The research foundation
estimates that 150 to 500 people in Northern California have Morgellons.
The Kaiser study will perform medical exams - including dermatological
tests, blood analysis and psychiatric evaluations - at offices in Oakland.
Researchers hope to carefully examine skin biopsies and any fibers or
other materials that patients report growing out of their skin.
"This is a descriptive study. There are no hypotheses to be tested," said
Joe Selby, director of Kaiser's Northern California division of research.
"We recognize that many people in the United States are currently
suffering with symptoms and they are very frustrated as to whether there
is evidence of their disease." Online resources More information about
Morgellons can be found at:
links.sfgate.com/ZCCO
links.sfgate.com/ZCCP Information about Morgellons
Q: What is Morgellons?
A: It's a mysterious condition primarily marked by skin disorders. The CDC
refers to it as an "unexplained dermopathy."
Q: What are its symptoms?
A: Unexplained sores that won't heal; materials protruding from the skin
that look like thin, multicolored threads or black sand; chronic fatigue;
"brain fog," including difficulty concentrating and short-term memory
problems; muscle and joint pain; sensation of something crawling beneath
the skin.
Q: What are common diagnoses of Morgellons symptoms?
A: Many doctors do not believe Morgellons exists, and patients are
sometimes diagnosed with skin conditions such as scabies or eczema; Lyme
disease; or delusional parasitosis, a psychiatric condition.
Q: Is there a treatment?
A: There is no standard treatment.
Q: How many people have Morgellons?
A: The Morgellons Research Foundation reports that 10,000 families in the
United States have registered claiming at least one family member has the
disease. Of those families, 150 to 500 are in the Bay Area.

E-mail Erin Allday at eallday@sfchronicle.com. ----------------------------------------------------------------------

[tcmgpt13]

Thanks for posting this Steve. It is good to see another current article about morgellons, especially one which discusses what is happening at Kaiser Permanente. Hopefully we learn more soon, and it isn't the great fob off we have almost come to expect (lest we be disappointed yet again pessimism reigns as the safest course). I found it interesting that one person in the article with morgellons no longer has a love for doctors or the health care system. I had trouble getting proper treatment for borderline thyroid disease so the stance of doctors against a disease which as yet has no perimeters did not surprise me at all. In fact until just recently I never tried to see if one would treat me for morgellons, and when I did I was not surprised that the only treatment the person was willing to try was antibiotics to which I have pretty severe allergies in most cases. I just hope that a treatment is found before we all have irreparable damage to our bodies from these unknown parasites and infections. I know that the protocol calls for using more than just antibiotics, but at this time it seems that is the only thing most doctors will try, if indeed they will try anything at all.