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January 18, 2008

BehindTheMedspeak: Morgellons

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Also called Morgellons Syndrome, it's a mysterious new entity in which — among other signs and symptoms — mysterious fibers (the black threads seen above and below in human tissue) break through the skin.

The condition acquired its name soon after biologist Mary Leitao in 2001 noticed "bundles of fibers" beneath the skin under the lip of her then 2-year-old son.

Though it sounds like something out of a David Cronenberg movie, it's real enough that the U.S. Centers for Disease Control (CDC) is embarking on a year-long study to characterize it.

Here's an article from the Canadian Press website to introduce you to the subject.

    CDC to study Morgellons, ailment in which fibres said to erupt from skin

    It sounds like a condition ripped from the pages of science fiction. Mysterious threads or fibres breaking through the skin or the sensation of insects crawling under it. Sores that won't heal. Impaired concentration and short-term memory loss.

    But over the past few years several thousand people in the United States, Canada, Australia and Europe apparently have suffered from this puzzling constellation of ailments, which has come to be known as Morgellons Syndrome or just plain Morgellons.

    Now the U.S. Centers for Disease Control, aided by a major U.S. health insurance provider, is embarking on a study to try to get a handle on a condition skeptics dismiss as a delusion and the agency itself isn't yet ready to call a disease.

    "What I can tell you is real is the suffering these patients are experiencing," Dr. Michele Pearson, the CDC scientist who will head the project, said Wednesday during a teleconference announcing the launch of the study.

    "I cannot characterize this as a syndrome, as a disease. I can tell you it's an unexplained illness. That clearly the suffering that these patients experience is real."

    While the preponderance of reports of Morgellons have come from the United States, public health authorities in Canada - particularly British Columbia - have been contacted occasionally by people who say they suffer from it.

    Alain Desroches, a spokesperson for the Public Health Agency of Canada, said the agency is monitoring scientific research on the topic and will keep an eye on the CDC efforts. He said the agency has received a couple of communications from people who say they suffer from the condition.

    Morgellons sufferers and activists have also homed in on the British Columbia Centre for Disease Control in Vancouver.

    "It's a quandary," said Roy Wadia, the agency's director of communications.

    "Because you don't want to discount personal suffering and anguish. At the same time, science and medicine demand certain protocols be followed when it comes to investigating anything."

    "At this moment, we really have no answers."

    The CDC study hopes to provide some, though the lead researchers acknowledged this work is only a start.

    "This condition is complex and it may be due to multiple factors," Pearson said. "We are certain that this study will not provide answers to all of the questions. This may be one of many studies that will need to be done on this condition."

    The work will try to gain an understanding of who may be affected with the condition, the range of symptoms they experience and look for clues to factors that might contribute to it, Pearson said.

    The investigation will be conducted in conjunction with health insurance giant Kaiser Permanente's Northern California division of research and the U.S. Armed Forces Institute of Pathology.

    Subjects to be studied will be drawn from the pool of people who sought medical care for Morgellons-like symptoms from Kaiser Permanente in Northern California from July 1, 2006 to the end of 2007.

    Kaiser Permanente serves 3.4 million people in that area, an apparent hot-spot for Morgellons. Dr. Joe Selby, director of the division of research, said the area has one of the highest rates of self-reported cases in the United States.

    People identified will be asked to complete a web-based or telephone questionnaire. Selby said a number of those people with "active symptoms" will be invited to undergo an extensive physical and psychological examination that will include taking skin biopsies, blood and urine samples.

    Pearson said she understands that people who suffer from the symptoms are anxious for answers. But she suggested it would be at least 12 months before any evidence starts to emerge and longer before a fuller picture comes into focus.

    "We are really at the beginning, I think, of a learning curve about what this condition is and all of its potential manifestations."

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Here's Jane Akre's story from yesterday's InjuryBoard.com.

    Mystery Skin Disease Has Researchers Stumped

    CDC researchers will spend more than a year looking at the cause of a mysterious skin disease that is a mystery

    The symptoms are consistent — skin lesions that do not heal, a stinging, crawling skin sensation, fibers of foreign material on or under the skin, mental confusion, memory loss, joint pain, among other ailments.

    Medical detectives say they have no idea what is causing the illness called Morgellons illness.

    Some have even questioned whether its symptoms are real or delusional. But with thousands afflicted world-wide, the CDC will launch an 18-month investigation among patients in northern California with help from the Armed Forces Pathology Institute and Kaiser Permanente.

    Dr. Michele Pearson, lead CDC investigator in the study, tells Reuters, “What I can tell you is real is the suffering that these patients are experiencing," Pearson said. "I cannot characterize this as a syndrome, as a disease. I can tell you it's an unexplained illness."

    Morgellons Research Foundation is based in Pittsburgh. Executive director, Mary Leitao believes the condition is an infectious disease.

    The group says more than 11,000 families around the world with at least one person inflicted have the condition. It’s been tracking incidents since 2002. On its Web site the foundation has stories from people who have suffered with this undiagnosed condition.

    Leitano, a biologist named the disease after her 2-year-old son began complaining of “bugs” and sores under his lip. She says they appeared as red, black, blue and white bundles of fibers.

    Eight different doctors were unable to explain the symptoms. She chose the name Morgellons disease from a description of an illness in a 1690 letter by Sir Thomas Browne.

    Some patients have been "diagnosed with a common medical label, Delusions of Parasitosis (DP), the basic tenet being this is a psychiatric illness with the presumption of a purely delusional 'parasite infestation."

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Morgellons Watch offers a skeptical analysis of the findings to date.

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Here's a link to the January 16, 2008 CDC press conference transcript featuring Dr. Michele Pearson, principle Morgellons investigator for the CDC.

January 18, 2008 at 10:01 AM | Permalink


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Comments

Tom,

As someone involved with the mental health field, I implore you not to mock these people. Seriously. They think they have a real disease and even if it is only a delusional one like you and others like yourself believe, you should not push these people. Cripes, it almost seemed a real post.

It is as bad as those people mocking poor Jenny McCarthy about her autism claims. Don't do that. It is wrong. Folks are entitled to the wrong medical opinions without bullies trying to snarkily and slyly put them down.

Posted by: clifyt | Jun 4, 2009 6:46:18 PM

I had this disease 6 years and only Marc Neumann could help me further. Not Mary Laitao and her site which helps nobody, she want only donations to spend privately, nor Wymore who finds out nothing, or anybody else of all that researchers who can archieve nothing, but useless bla bla bla since 6 years.
The best site and the best explanation is on http://www.morgellons.research.org
I was close to suicide, but Marc helped me out finally of that mess with his DSP products and his compassion for all humans. He helped thousands of other worldwide suffers. He is a the true heroe of the morgellons scene and the others are just a crab. Just cuz he has no academic degree all the others ignore him and won`t work with him together to help morgies. Why? Cuz they just won`t lose their faces even knowing that many do suffer still from Morgellons disease. They just won`t admitt that a nobody could show them how to work scientifically. May God bless his way and that he goes on helping all....
Tom Blake, NY


Posted by: tom | Jun 4, 2009 6:13:59 PM

my father has the symptoms of this unknown illness, for many years now. The only thing that has seemed to put the symptoms into recession is a device called "The Zapper" created by Helda Clark, M.D. please look her up and read what she has to say!! I believe it can help every person with these symptoms as well as symptoms of many other illnesses and diseases.

Posted by: Ashley Young | Mar 2, 2009 1:33:20 PM

check this out!

http://lymebusters.proboards39.com/index.cgi?board=theories&action=display&thread=10543&page=1


Nobody is "giving it to anybody".....we all have it to some degree. It's in and on everything!
Its' SPORES.

Alkalize!!!

Posted by: angela | Oct 23, 2008 2:21:18 PM

Filter ALL your drinking water. Even , or especially, bottled water. If tropical parasites are in traveling mode right now, that's the way to control them. Look up Guinea Worm online, and READ several items. They each have their OWN information. They're all valid, but slightly different from one another. Read them! Get yourself a proper stick, and start winding. The sheaths they leave in your body can only be removed manually. Good luck all. mz

Posted by: Marie Zarankevich | Mar 27, 2008 9:21:01 PM

I noticed bumps on my skin,itchy,little bumps 4 years ago. They turned into open sores.Sores had larval things,it appeared they were in different life stages.The larval things turned out to be(some of them) tightly wound wads of 'string'. This string would unwind,and begin searching around for something; the end of the 'string' would rise up & actually move around like it was looking for something!
I'd place a string on each index fingertip,hold them say 2 inches apart & watch them try to reach each other. I moved my fingers so the tips were touching,the strings would seem to be checking each other out,coiling around,with one trying to dominate the other. One would grasp the other & hang on,if you looked very closley,there was a movement within the string,looked like a tiny bubble,like it was transfering something to the other string. Was it an intimate moment?(blush)
These 'strings' are translucent,barely visible,white,blue,pinkish.
I've noticed these same type 'strings' on cotton-tipped swabs,tea bag-strings,threads on blue jeans,paper towels from the gas station(windshield cleaner towels.)
None of the doctors can tell me what this stuff is growing in my body. One wrote me an antibiotic 'script,others said it was scabies.
These strings are in my eyes,ears,nose,my skin,nether parts as well.
This is a very real thing.I hope Kaiser & the CDC tells us what their findings are. Truthfully.
I've tried the poisons,sevin liquid & powder,dog shampoos for mange,Skin so Soft bath oil,coconut oil,tea soaks,vinegar soaks,bleach soaks,salt baths,more vitamins,less vitamins,antibiotics. The coconut oil brings up tons of the 'strings',the antibiotic helps with the swelling & itching only as long as I'm taking it.I have dark scars,if I scratch a scar the cycle starts over.

Posted by: annie s. | Mar 9, 2008 4:34:30 PM

i spose i cant be angry at the girl who gave these to me, she didnt know. i wouldnt even wish this apon my worst enemys(or would i)note to self: give george bush my Scab-E's* E meaning eternalhellfire na only jokin i know there not scabies i do know they ARE morgellons cuz hey im a researcher/historian i find the truth. but all i am trying to acheive now is a cure so please if there is ANYONE out there with even alittle advice?? ive tried teatree, permethrin (if thats what its called) pawpaw ointment, etcetc seriously it would be great to cure and rid myself from these filthy buggers. its killing me it feels like my head is getting realy swollen like their in my temples. i have had a lot of loss in my hearing and my brain is running so slow. someone please help i am a model and these things are now ALL over my face and they say the leasions are permenant and disfiguring i dont know what to do
.

Posted by: thisishell20yrFAustralia | Feb 5, 2008 9:45:30 PM

i thought it was scabies, well thats what the praymantis bitch that i got it off told me it was:( nope this is morgellons!! i also found out she had recently stayed with a friend who had just returned from south africa! i typed in everyone of the symptoms i have and instantly found the problem but no cure :,( i have a top quality microscope and these things have tentacles and all!! ive seen them still alive under the microscope moving. and i have ALL symptoms of morgellons and had ALL symptoms befor finding morgellons.

Posted by: thisishell20yrFAustralia | Feb 5, 2008 9:21:14 PM

in97 i got a piece of partical board in my eye my body obsorbed thisin98 i started having symptoms of this worming thing.i still have this problem.i think that the body of some people obsorb certain fibers either through the eyes or nose and the body is trying to reject them.im not delutional when i tell you that if they did a study on me and my file you will see what is happining.my two sons get lesions or boil like symptoms also.it may be genetic.it may be just a lack of responce from the public that this thing has been going on for years and years through out man kind.symptoms of mine,sore joints,loss of memory worm feeling.optic pain behind eyes.but my lesions are self inflicted from trying to get them out.

Posted by: paul bridgman | Feb 5, 2008 11:51:42 AM

Wait a minute Joe! TWO Cronenberg references (snail tail/tale) in TWO days! Bit much, eh?

Posted by: pambamboo | Jan 20, 2008 10:54:56 PM

This whole Morgellons disease is simply horrifying. Did not want to keep reading it but could not tear myself away from the post enough to not finish the whole terrifying bit. That poor child. I'd go stir crazy if that were my son and there were no answers.

Posted by: Milena | Jan 19, 2008 1:43:28 AM

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