Someone was kind enough to mail this to me, so I am fowarding it.
Please, be very careful where you spend your money because wherever
there is a 'mystery' of any kind, there will quickly be those wishing
to capitalize from it off the backs of the weak and afflicted.
http://www.columbiacitypaper.com/2007/8/19/science-friction
The article ends on a not very encouraging note. Like Wendy, I am
convinced that this is nematode based. It makes sense, since this is
the one branch of parasitology ignored in med schools. It also makes
sense as the states nearest the agrarian population crossing our
borders are the most heavily infected.
I am certain that research is going on in the US right now, and
showing better results than the people in this article, asking for
donantions and skirting about the real cause because once the cause
if found, the solution will not be far behind which will mean their
monies will dry up.
Here is the article:
The rest of the neighborhood sleeps as the morning birds begin to
tentatively chirp from the shadows of the yard. But you don't hear
them. And though the tentative gray of dawn lights your bathroom
window in degrees you're too distracted to notice.
You've been frantically scrubbing at the newly formed lesion on your
forehead since the itching drove you from your bed in the middle of
the night. You've already got two other sores on your torso. Various
ointments and creamswhatever you had in the houseand even some
industrial solvents are scattered around the sink and in the floor,
though nothing has stopped the itching.
You've considered waking your husband but don't want to worry him
yet, becauseand maybe you're crazyit feels like the itching is
coming from inside, like something is crawling under your skin and
trying to burrow out. As you lean closer to the mirror you notice
that strange blue fibers have sprouted from the sores and somehow you
suppress the immediate urge to scream so you don't wake the kids.
Six months later, the sores have spread to your legs. The fibers are
sprouting in various colors now and you notice that they fluoresce
under a black light. You're starting to suffer cognitive and
neurological breakdown and are no longer able to work. The sores have
sprouted on your youngest child, too. And, worst of all, your doctor
explains away the fibers as lint and says the itching is due to a
form of psychosis.
It has been a year since the media storm surrounding Morgellons
disease peaked and died. The news angles were essentially the same:
an alarmist anecdotal lede like the one above, usually featuring a
Morgellons sufferer in the reporter's respective area; the storyor
at least mentionof Pennsylvania-cum-Surfside Beach, S.C. resident
Mary Leitao, a mother of three who discovered and named the
affliction and who founded the Morgellons Research Foundation (MRF);
the emerging science, some legitimate, some quackery and the medical
community's dismissal of the symptoms as psychosomatic; something
about the CDC; the whole thing capped off with a tragic, cliffhanger-
like ending: "For now, the only thing they can do is spread awareness
and hope for a cure." Fade out.
By and large, the national press hasn't yet faded back in. Meanwhile,
it has been a watershed year in the Morgellons world. This month the
Centers for Disease Control (CDC) released a statement officially
recognizing Morgellons as "an unexplained and debilitating condition"
and announced plans to begin preliminary research.
In the background, a schism in the MRF led to the formation of a
rival foundation called the New Morgellons Order (NMO). Then there is
the Nevada group of Morgellons enthusiasts who believe the condition
could have nanotechnological roots, not to mention the ever-
strengthening presence of Morgellons Watch, a watchdog blog run by a
tenacious and tireless California man who is determined to debunk
them all.
But against the backdrop of these new developments, the same old
scabs remain. And until concrete indisputable evidence can be brought
forth from a CDC-sanctioned case study, the debate will rage on: are
these people afflicted with a new disease or with a case of Internet
spawned mass delusion?
Morgellons' Roots: Mary Leitao and the MRF
"The first six months was like living in a Stephen King horror film
and I was the star." -Arlene, California
In the summer of 2001, two-year-old Drew Leitao pointed to an itchy
spot on his chin and said, "bugs." Drew had already been tested for
eczema, scabies and other skin disorders but no diagnosis seemed to
fit his condition. One evening Drew's mom, a former biologist,
noticed strange fibers that seemed to be emerging from the sore on
his chin. For the ensuing months, Mary Leitao says she conducted her
own studies on the fibers, hoping to explain them away as synthetic
or fabric. But, after she repeatedly sterilized the sore on Drew's
chin and then bandaged it, the fibers would always return, seemingly
sprouting from the inside.
One doctor from John Hopkins University suggested that Mary might be
suffering from Munchausen's Syndrome by Proxy, a form of hypochondria
which causes sufferers, usually the mother, to project illness (or
sometimes purposely induce it) on their children. Undaunted, Leitao
continued her research and found no other disease like Drew's listed
in current medical literature. Scouring antiquated medical texts, she
came across the text of "A Letter to a Friend" by 17th Century
naturalist, Sir Thomas Browne. In the text Browne describes a medical
condition he observed in French children called "the morgellons" in
which those afflicted would break out with patches of coarse hairs on
their backs.
In 2002, Leitao, then living in Pennsylvania, started a Web site
called the Morgellons Research Foundation and received responses from
people across the country, all who claimed to be suffering from an
affliction similar to Drew's. The Web site morphed into a full-
fledged non-profit with a board of directors and medical board
dedicated to securing funds for continued research. Following the
death of her husband in 2004, Leitao moved her family to Surfside
Beach, S.C. for a fresh start.
There fundraising for Morgellon's began in earnest and preliminary
research on Morgellons began at Oklahoma State University, Cal State
and the State University of New York, according to her site.
The MRF, currently listing its address in Pittsburgh, Pa., has so far
documented 64 claims of Morgellons in South Carolina. Approximately
10,000 families have registered with the foundation, believing that
they or a family member showed symptoms of Morgellons as defined by
the MRF. Of the U.S. families in the MRF registry, 24 percent reside
in California with a large cluster of cases in the San Francisco area.
But one California man doesn't buy it. Michaelwho would only give
City Paper his first name out of fear of harassment and who prefers
to go by his screen name "Margellon"started Morgellons Watch in
April of 2006 because, he says, he had "some problems with their
science."
"Much of the MRF info is very one-sided and pushes a very particular
viewpoint," he says. Margellon worries that if someone is in fact
delusional, the MRF gives them a blanket validation.
"The MRF simply says `you are not delusional' without knowing
anything about the person," Margellon charges. "Simply that the
person thinks they have Morgellons is enough for the MRF."
Margellon also worries that the site scares people. "The media
coverage (all guided by the MRF) sensationalizes this as some
horrific new disease. People get scared that they might have it or
catch it. This is all based on no evidence at all and is very
irresponsible of both the MRF and the media," he says.
Still, he believes Mary Leitao means well. "But I think she is simply
misguided," he says, "and perhaps manipulated by those around her."
Morgellons under the microscope
The medical and scientific advisory boards of the MRF are comprised
of over a dozen medical doctors and researchers. Taking into account
recurring symptoms described by patients coupled with their own
research, the foundation has developed it own case definition of
Morgellons.
The opening paragraph of the case definition concedes that the
initial three characteristics of Morgellons mirror a psychiatric
illness known as Delusions of Parasitosis (DP), which Dr. Noah
Scheinfeld, assistant clinical professor in the Dept. of Dermatology
at Columbia University, describes as "the patient's firm belief that
he or she has [itching] due to an infestation with insects." He goes
on to say that patients will often bring in "clothing lint, pieces of
skin, or other debris contained in plastic wrap, on adhesive tape, or
in matchboxes. They typically state that these contain the parasites;
however, these collections have no insects or parasites."
But the MRF maintains that DP was "named decades before today's
laboratory technology and infection/immunity knowledge, driven by
HIV, developed." They believe that, in the case of Morgellons, DP
is "a prematurely-assigned label to an organic, rather than purely
psychiatric disease."
The physical symptoms of Morgellons, according to the foundations
definition, include: skin lesions, which progress to open wounds that
don't heal completely; movement and biting sensations both on and
under the skin; near microscopic granules and "filaments" of varying
color which fluoresce under UV light; and cognitive and neurological
dysfunction. The definition also cites muscle and joint pain and
fatigue similar to that described by people believed to suffer
chronic Lyme disease.
"The association with Lyme disease," the case definition states, "and
the apparent response to antibacterial therapy suggest that
Morgellons disease may be linked to an undefined infectious process."
The foundation has so far not developed a concrete theory as to how
the condition may be spread, though many believe that it is
communicable. They also don't believe that Morgellons is fatal.
Clongen Laboratories, LLC, owned by MRF board member Ahmed Kilani,
Ph.D, believes that Morgellons is caused by a complex fungi, algae
or "novel parasite." They are currently trying to isolate DNA from
the fibers and link it to a similar organic structure. Dr. Vitaly
Citovsky, Ph.D is also on the board of the MRF.
A researcher with the State University of New York, Citovsky believes
that Morgellons could be linked to an Agrobacterium that causes
tumors and forms root-like structures within plants. In recent years,
forms of Agrobacteria have been used to genetically modify plants by
transferring select genes to those plants.
"Morgellons skin fibers appear to contain cellulose," Citovsky stated
in a January 14 statement. "This observation indicates possible
involvement of pathogenic Agrobacterium, which is known to produce
cellulose fibers at infection sites within host tissues. If these
results are confirmed, it would be the first example of a plant-
infecting bacterium playing a role in human disease."
Dr. Randy Wymore, director of the Center for the Investigation of
Morgellons Disease at Oklahoma State University, insists that most of
the Morgellons fibers he has studied were first observed under and
within healthy, unbroken skin, which would rule out the possibility
of lint being stuck to a scab.
In a June 19 position statement, Wymore stated that some of the
fibers associated with Morgellons "are not simple textiles of animal,
plant or synthetic nature." In one now infamous experiment reported
by Psychology Today, Wymore and a fiber expert from a police
forensics crime lab exposed Morgellons fibers to extreme heat to
compare their burning point to other organic compounds. The fiber is
reported to have sustained temperatures up to 1,400 degrees without
burning.
"Efforts to find microorganisms associated with Morgellons are a
process of elimination," Wymore states. "We use molecular biology
techniques to try to identify the presence of DNA sequences of
candidate organism."
So far, no research has proven conclusively that the fibers are
generated within the body.
Crawling with nanorobots / The schism at MRF
Russell Altman of Beneficial Solutions, LLC distributes a colloidal
silver additive for water called NutraSilver. Colloidal silver is
believed to have antibiotic properties and was used as a disinfectant
before the invention of penicillin. Currently, the U.S. government
only considers it a dietary supplement (which can't by law claim to
cure diseases) and in 2001 the FDA issued a warning to an Internet
site that promoted colloidal silver as an antibiotic. Still, Altman
believes that his silver product will ease the suffering associated
with Morgellons.
He also told City Paper that he believes Morgellons is caused by tiny
replicating robots which are sprayed down upon the populous from
Earths atmosphere.
"There is some very strong information coming from Dr. Hildegard
Staninger who is a very famous Industrial Toxicologist that this
infection is man-made nanomachines and that they are able to
communicate," he said.
Dr. Hildegarde Staninger, with Integrative Health International, LLC
did indeed present a paper to the National Registry of Environmental
Professionals in 2006, claiming that a study of Morgellons fibers
showed that "the fibers' outer casing is made up of high density
polyethylene fiber (HDPE). The fiber material is used commonly in the
manufacture of fiber optics." He went on to say, "It was further
determined that this material is used throughout the bio
nanotechnology world as a compound to encapsulate a viral protein
envelope which is composed of a viron (1/150th times smaller than a
virus) with DNA, RNA, RNAi (mutated RNA) for specific functions."
"This is a man-made infection," Altman insists and then raises the
question: But who made it? "Well, consider that it took many billions
of dollars to create, you can guess who might be the inventor of this
horrible, life-stealing disease," he says.
When asked what he thinks about the high density of reported cases in
California, Texas and Florida, he begins his sales pitch. "Morgellons
disease is created by Chemtrails at high altitudes. My product is
sold globally to victims in almost every country because the world
population has been exposed through high-altitude spraying.
Morgellons is in the air and therefore in the water and food chain
globally. Yes, there are clusters, but my view is that this is all
over the world. You need to know that I have the only effective
treatment for Morgellons. We measure our success by how many suicides
we prevent every week."
He then directed me to his associate's Web site to read testimonials
by doctors and lay people. NutraSilver claims to cure everything from
acne to Lyme disease and, of course, Morgellons. One testimonial was
given by a doctor named James Matthews, M.D. who claimed to have
Morgellons only to be cured by NutraSilver. He also disclosed that
a "small percentage from the sales of NutraSilver is paid to Advanced
Medicine, L.L.C., a new nonprofit company that I direct."
"It's a typical nonsense theory," says Margellon of the nano
machines. "Russell Altman, on the other hand, is all business. He's
running a MLM [multi level marketing] scheme for a quack remedy. Jeff
Sohler is the man behind morgellonshope.com and nutrasilver.com. Both
Web sites are registered through his Internet marketing company
Sohlius, Inc."
And while 2006 saw the Internet blossom with pyramid schemes to fuel
the debunkers' cause, internal personal struggles began to wreak
havoc at the MRF.
Dr. Greg Smith, a Gainesville, Ga. pediatrician who served on the MRF
medical board, resigned last year citing philosophical differences
with Leitao. Former MRF chairman, Charles Holman and Dr. Smith also
asked to see the foundation's financial records for 2004 and claimed
that Leitao said she didn't have them. Shortly thereafter, Smith
removed a letter on a medical Web site soliciting donations to the
MRF and replaced it with a retraction, stating that he couldn't
solicit donations to the foundation without seeing the financial
records.
"It has been the most bizarre situation," Leitao told the Pittsburgh
Post-Gazette at the time. "We're talking little, tiny chunks of
money. I will tell you, the year 2004, there were $318 worth of
donations. And $100 of those came from me. I donated a check to my
own foundation to jump-start us."
City Paper obtained the foundation's IRS 990 form for 2005 which
listed total revenue at $17,165. After expenses the foundation's
total assets for 2005 came to $14,664. It was unclear how much was
donated to research.
Leitao did not respond to information requests by City Paper. Ken
Cowles, the foundation's director of media and public relations,
enthusiastically agreed to a conference call between himself, City
Paper, possibly Leitao, and a South Carolina Morgellons sufferer (for
alarmist opening paragraph purposes hence the subpar, 2nd person
substitute). Subsequent phone calls and emails from City Paper to set
up said interview have so far gone unanswered as of press time.
Margellon, however, was quick to comment and also criticized MRF
board members Ginger Savely, RN and Raphael B. Stricker, M.D. who
both have backgrounds in the chronic Lyme disease movement.
"The thing I dislike the most is that many members of the MRF have a
significant financial stake in popularizing the idea that Morgellons
is a distinct disease. Stricker and Savely run a clinic in San
Francisco where they treat Morgellons Patients with cocktails of anti-
everything drugs and very expensive courses of antibiotics," he
said. "I think they get a lot of business via the MRF."
Morgellons Watch reported that Savely charges $500 for an initial
visit to her clinic and treatment costs run from $1,200 to $12,000
per year, all out of patients' pockets, as medical insurance doesn't
cover such treatments.
To add insult to injury, Dr. Wymore at Oklahoma State University
stepped down as the foundation's director of research, though he
still maintains a working relationship with the group. Meanwhile,
former chairman Holman and other board members, Smith included,
formed the New Morgellons Order, a group so rabidly pro-financial-
disclosure that they post photocopies of the organization's written
checks on their Web site.
The CDC trudges into action
Until recently the CDC seemed reticent to devote any manpower to the
Morgellons issue. After a strongly worded letter by U.S. Sen. Dianne
Feinstein (D-Calif.) the CDC began to contact people directly to
inquire about the condition. In 2006 a CDC task force was formed and
in December of that year, U.S. Senators Hillary Rodham Clinton and
Charles Schumer (D-N.Y.) signed a single letter to the director of
the CDC asking them to expedite their investigation of the issue. The
CDCs Division of Parasitic Diseases removed the Delusional
Parasitosis page from their Web site in March and many in the
Morgellons community believe the removal of the entry has
significance to their cause.
David Daigle, a spokesman for the CDC, told City Paper the entry was
removed for other reasons.
"The page/link was removed due to a Web management issue rather than
Morgellons," Daigle says. "HHS [Health and Human Services] web
governance asked us to remove the page as it did not provide
information, rather it linked visitors to another Web site."
Last month, the CDC released a solicitation notice contracting Kaiser
Permanentea nonprofit managed health care organization based in
California that boasted an operating budget of $3.1 billion in 2005
with 37 medical centers across the country tending to its roughly 9
million health plan membersto investigate Morgellons. The CDC chose
Kaiser Permenente due to its location in an area with a large number
of suspected cases, its large database of patients and what they
describe as its qualified staff and facilities.
Some in the Morgellons community have expressed concern over the
government's decision to award a contract to a multi billion dollar
health care organization instead of some of the University
researchers who have been studying the condition for years. But for
now, it's all they've got.
For now the only thing left to do is spread awareness and hope for a
cure.