LA Times, Reuters Articles

[jonsi]

I thought I would do a search on the media I heard ask questions of the CDC on 1/16/08. This is sad:

Morgellons study launched in California

Sufferers, who feel crawling sensations and see fibers coming out of their skin, hope the research legitimizes the illness.

By Jia-Rui Chong, Los Angeles Times Staff Writer

January 19, 2008
After years of patients' complaints, the U.S. Centers for Disease Control and Prevention has launched a study into a bizarre -- and possibly delusional -- condition known as Morgellons, in which sufferers typically feel crawling sensations and observe fibers coming out of their skin.

The agency first started hearing about the condition from a handful of patients in about 2002. It now receives about 1,200 inquiries a year.

The study will look at patients in Kaiser Permanente's Northern California network because that area has been a hot spot of reported cases.

"We are really at the beginning, I think, of a learning curve about what this condition is and all of its potential manifestations," said Dr. Michele Pearson, a CDC physician who is heading up the study. "Those who suffer from this condition, as well as the family members and physicians who provide care to them, have questions, and we want to help them find meaningful answers."

The study, expected to take a year, will look at patients at Kaiser hospitals in Northern California from July 1, 2006, to Dec. 31, 2007. Researchers will survey probable Morgellons sufferers and collect skin, blood and urine samples.

About 11,000 families in about 16 countries have registered their illnesses with the Morgellons Research Foundation, a group started by Mary M. Leitao, a Pittsburgh mother who found an abnormal rash on her son in 2001. She named the disease after a reference in a 17th century French medical text of "strange hairs" sprouting from children's backs.

"I hope they find quick answers within this small group of patients that will help the larger group of patients very quickly," Leitao said.

Leitao said she hopes the study will help legitimize the disease, which many doctors have diagnosed as delusional parasitosis and treated with anti-psychotic medications.

Dr. Mark Horowitz, a Torrance dermatologist who has seen hundreds complaining of Morgellons, said he hoped the CDC study would settle the uncertainty about the condition: "I believe it's a real entity [but] I'll be very surprised if they find anything more than a psychiatric disease."
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The End, what a story, huh? On to other media searches to follow.
~jonsi

[niecy]

Now Jonsi, you just shake off that worry and sadness, we are all here for support and I think you need some good to come out of the article you posted here. The ABC or whichever one it was news station just asked a derm to make a statement, that's all, it is nothing new. I know and you do too that these dermatologists are in for a big, and for them, very costly surprise. Even if the CDC doesn't do their job, correctly, there is an answer coming, I can feel it. It may be some doctor from some country we have never heard of, or an Indian, or a China man, but SOMEONE is going to find the answer soon. Have faith, and be still and quiet(when you are facing fear), it is coming(the answer), sooner than you think. xxxx

Originally Posted by jonsi

I thought I would do a search on the media I heard ask questions of the CDC on 1/16/08. This is sad:

Morgellons study launched in California

Sufferers, who feel crawling sensations and see fibers coming out of their skin, hope the research legitimizes the illness.

By Jia-Rui Chong, Los Angeles Times Staff Writer

January 19, 2008
After years of patients' complaints, the U.S. Centers for Disease Control and Prevention has launched a study into a bizarre -- and possibly delusional -- condition known as Morgellons, in which sufferers typically feel crawling sensations and observe fibers coming out of their skin.

The agency first started hearing about the condition from a handful of patients in about 2002. It now receives about 1,200 inquiries a year.

The study will look at patients in Kaiser Permanente's Northern California network because that area has been a hot spot of reported cases.

"We are really at the beginning, I think, of a learning curve about what this condition is and all of its potential manifestations," said Dr. Michele Pearson, a CDC physician who is heading up the study. "Those who suffer from this condition, as well as the family members and physicians who provide care to them, have questions, and we want to help them find meaningful answers."

The study, expected to take a year, will look at patients at Kaiser hospitals in Northern California from July 1, 2006, to Dec. 31, 2007. Researchers will survey probable Morgellons sufferers and collect skin, blood and urine samples.

About 11,000 families in about 16 countries have registered their illnesses with the Morgellons Research Foundation, a group started by Mary M. Leitao, a Pittsburgh mother who found an abnormal rash on her son in 2001. She named the disease after a reference in a 17th century French medical text of "strange hairs" sprouting from children's backs.

"I hope they find quick answers within this small group of patients that will help the larger group of patients very quickly," Leitao said.

Leitao said she hopes the study will help legitimize the disease, which many doctors have diagnosed as delusional parasitosis and treated with anti-psychotic medications.

Dr. Mark Horowitz, a Torrance dermatologist who has seen hundreds complaining of Morgellons, said he hoped the CDC study would settle the uncertainty about the condition: "I believe it's a real entity [but] I'll be very surprised if they find anything more than a psychiatric disease."
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The End, what a story, huh? On to other media searches to follow.
~jonsi

[jonsi]

Reuters 1/17/08:

By Will Dunham

WASHINGTON (Reuters) - U.S. health authorities on Wednesday said they will conduct an investigation to get to the bottom of an unexplained illness marked by skin lesions that do not heal and a batch of other symptoms.

The illness is called Morgellons disease, and some doctors have questioned whether it is a real medical condition. An advocacy group seeking a cure said doctors have diagnosed some people with its symptoms as delusional -- a view the group rejects.

The U.S. Centers for Disease Control and Prevention said its investigation may take at least a year and will involve patients in northern California. The CDC said the condition's cause and prevalence are unknown. The study will be done with the Armed Forces Pathology Institute and Kaiser Permanente.

The CDC said symptoms attributed to Morgellons include non-healing skin lesions, abnormal crawling, biting and stinging skin sensations, the presence of fibers or other foreign material on or beneath the skin, fatigue, mental confusion, memory loss, joint pain and changes in vision.

During a telephone briefing with reporters, Dr. Michele Pearson, lead CDC investigator in the study, was asked whether she was prepared to call Morgellons a real medical condition.

"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."

Mary Leitao, executive director of the Pittsburgh-based Morgellons Research Foundation, who said her son has the disease, called the investigation a positive step. She said Morgellons is a genuine medical condition with consistent symptoms, adding, "I think it's an infectious disease."

The study will focus on patients in the Kaiser Permanente Northern California Health Plan who sought medical care during an 18-month period ending last month for symptoms consistent with those attributed to Morgellons disease, according to Dr. Joe Selby, a senior Kaiser Permanente researcher.

They will undergo thorough clinical evaluation including mental health examination, Pearson said.

The Morgellons Research Foundation, formed in 2002, has compiled a list of more than 11,000 families in various countries with at least one person affected by the condition.

Some U.S. lawmakers have pressed the CDC in recent years to look into the disease.

The foundation said on its Web site that some people seeing doctors for symptoms of the condition 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."'

The foundation rejected that diagnosis.

(Editing by Cynthia Osterman)
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~jonsi

[Sunshine]

Hey Jonsi, Hope this one cheers you up a bit.

I particularly liked this reporter, David Templeton from the Pittsburg Post Gazette.
Here is his follow up report on Jan 20th, 2008.
Sorry for the bad link. I fixed it. I hope.

http://tinyurl.com/2qk5o6


http://www.post-gazette.com/pg/08017...lthscience.xml

______________________________

Here is the MILLION dollar question he asked at the press briefing:

OPERATOR: Thank you. Our next question comes from David Templeton, Pittsburgh Post Gazette.

DAVID TEMPLETON: Yes, thanks for taking the question. The lady who started the foundation who early named it comes from the Pittsburgh area. And by all accounts she went through quite a bit of an ordeal to even get this to this stage. And I am just wondering if you have this kind of fibrous situation with your skin, and these other symptoms, why would the medical community be so reluctant to say, I mean they were calling it psychosomatic and there was this psychiatric problem and all of that. When you see such symptoms, why has it been so long to recognize this as a potential problem that needed to be investigated?

DR. MICHELE PEARSON: I think they, I don't pretend to speak for all of the medical community, but as both a scientist and a physician, what I can say is, I think, that many of the providers who have seen these patients have been as challenged as the patients who are seeking care themselves. There is not textbook definition on this condition. There are many hypotheses about what might be causing and contributing it. And so it has been a very frustrating journey, not only for the patients, but also for the providers who provide care to them.
And, I don't think it is as unique to this condition. I think this is the case for any unexplained illness where there really is limited scientific information about what it is and how best to approach it.

_________________________

Runswithscissors

[hilly]

RWS yes, a good question... David Templeton seems like the sort of guy to keep in contact with... I see from his article that he gives an email address... might be worth sending him a few emails ???? Milly x

[suburbanone]

'Runswithscissors' -- that's pretty funny. Reminds me of the time my husband (a firefighter/medic no less) handed our 2 year old scissors and ask that she quickly bring them to me across the house - go figure.

[MELISSAJ]

Why would so many in cluster areas start complaining about the same thing? I know in psychology, there is a phenomenon regarding DOP and how we catch it...

Anyway, it's not like we are all saying we all have gout, AIDS, fleas or fill in the blank. It is so specific and so strange the common denominators. Any true research based scientist/MD will see that this is a true new organism or infectious disease.

I keep beating myself up about picking at my dad's house. I have never picked again in my life. I truly have new respect for bacteria, virus and such. I am not infallible. Do not pick at any of your lesions!!! Follow proper bathing and wound care and the lesions heal. It took me awhile, but my face is clear again. It was probably this and staph and other untreated undiagnosed deeper issues.

Another thing, I was so respectful of MDs. I will fight for labs and for my family's health. I didn't want to be like Elaine in Seinfeld ...does anyone know what I'm referring to...I'm all about keeping up appearances and being okay. I didn't want to be crazy bug mom...i was anyway when i walked in with a ziploc bag.

I'm a long hair girl and my hair is currently shorter than my boys' hair. This is ....I'm chunky and have short hair...i'm androgynous and that's not my style....

I have to get off. I need to immune boost - exercise.

Love,
Melissa