Nancy Hinkle on Delusory Parasitosis

Most people who strongly believe they have Morgellons will complain that their doctors dismiss them as “DOP”, a common abbreviation for “Delusions Of Parasites”.

The Morgellons activists seek to portray their plight as a struggle of genuinely sick people against an uncaring medical profession that dismisses their symptoms as “all in your head”. Any suggestion of anything like DOP is reviled, and the believers wander from doctor to doctor, seeking those who will look beyond this.

To understand the Morgellons community, you need to understand DOP. One of the worlds leading experts on DOP is Nancy Hinkle, PhD. Hinkle is not a physician, she is an entomologist, so if anyone can find the bugs, it’s going to be her. Back in 2001, before the MRF got off the ground, she had an interview on this subject with the Discovery Channel in Canada.

http://exn.ca/video/?Video=2001030551.asx

If you are interested in Morgellons, I highly recommend you watch this video (it’s only about six minutes long), as it provides a simple overview of DOP, as well as the varied causes, which are mostly physical in nature. She also makes the distinction between those who are simply mistaken, and those who are delusional.

Out of the hundreds of samples that people have sent Dr. Hinkle over the years, NONE had insects in them. Her most telling quote: “If they are desperate enough they will usually find something”.

Dr. Hinkle also wrote a highly lucid paper on the subject in 2000:

http://www.ent.uga.edu/pubs/delusory.pdf

Scratching may produce papular eruptions. Any
repeated skin irritation produces a friction blister.
Repeated rubbing of an area often produces a bleb
(small blister) which, when ruptured, yields an open
sore that may become infected. Once the sore
begins oozing plasma and a scab forms, hairs and
cloth fibers become entrapped in the sticky fluid.
These flecks are dislodged and called mites or
insects because they look like they have “antennae”
and “legs” (Fig. 2). Hair follicles often are pulled
out; the follicle accompanied by the associated
sebaceous gland looks like a worm.

Morgellons Cure?

In his article “A cure for Morgellons disease?”, Dr Chris Rangel says something that Morgellons believers will like:

“these patients are neither crazy nor are they faking their symptoms “

I agree, at least with the point he is making. Here’s the full article:

http://www.rangelmd.com/2006/08/cure-found-for-morgellons.htm

Here is the article in the NY Times:

http://www.nytimes.com/2006/08/22/health/22symp.html

And here’s the actual study under discussion:

http://medicine.plosjournals.org/perlserv/?request=get-document&doi=10.1371/journal.pmed.0030269

And the “cure” (Cognitive-Behavioral Therapy for Somatization Disorder)
http://archinte.ama-assn.org/cgi/content/abstract/166/14/1512 

Is this a “cure for Morgellons”? No, it’s an effective treatment for Somatization Disorder.  That might cover a lot of the cases of Morgellons, but it’s not going to treat those who have genuine dermatological and neurological disorder, and simply mistakenly believe they have Morgellons, since they find some fibers on their skin.  It might help them seek more effective treatments, however.

Coming Attractions

After the Primetime: Medical Mysteries show on ABC, there was a great flurry of activity in the Morgellons world, then everything went quiet. Is Morgellons losing favor with the media? Here’s a run-down of current and upcoming goings-on in the world of “Morgellons.”

The Morgellons Research Foundation lost half its board members and its only scientist in a dispute over accounting and the leadership style of Mary Leitao. The three primary members of the MRF remain: Leitao, Doug Buckner and Ken Cowles. William Harvey, a big Lyme fan, steps in as new chairman. Will the MRF be able to recover from this schism? So far nothing has been heard from them, other than the Stalinesque purging of their web site of all mention of the former members.

The former MRF members formed the New Morgellons Order. This unfortunately named organization quickly lived up to its name by appearing on the Jeff Rense radio show, which normally features UFOs, Chemtrails, Anti-Zionism, New World Order and other conspiracy theories. Can the NMO be taken seriously? Will the upcoming two day Morgellons Festival help?

LymeBusters message board, closely affiliated with the MRF, forbids all mention of the MFR/NMO split. Anyone who even brings it up is banned, and all their posts are deleted. Discussion proceeds at a reduced pace, with Lysol Toilet Cleaner the current popular “cure.” Can Lymebusters continue under the oppression of censorship?

George Schwartz says on August 13th: “We have developed effective treatment for the “Morgellons” condition and have isolated the thread-forming stage of the organism. This will be presented at an intl meeting and there will be a monograph and CD of the presentation within two weeks. After that time, our group will be free to speak about our treatments and discoveries. With all best wishes. GR Schwartz MD“. Schwartz recently had his license revoked for illegally percribing narcotics. His web site claims to treat opiate (heroin) addiction with a 100% success rate, as well as making other dubious medical claims including his last Morgellons theory that Morgellons comes from bottled water from France. I await his monograph with interest.

The Union Square Medical Associates claims to be treating “hundreds” of Morgellons patients. USMA is where Dr. Raphael Stricker and Nurse Practicioner Ginger Savely work (both are members of the MRF). For the past eight years the USMA web site has focused on peddling Viagra and weight loss drugs, as well as a number of unusual therapies. Why does it not advertise the Morgellons treatments? Do they think it’s just Lyme? Someone from their office said “you really should keep your mouth shut, because in the not too distant future, you will be sticking your foot in your mouth.” I await this with interest.

Professor Randy Wymore breaks with the MRF. Wymore has been the reason Morgellons has been taken seriously by the mainstream press, and his disassociation with the MRF is a blow to their credibility. Wymore wants to continue his research, but his startup money will run out soon, and results so far have been inconclusive. Will OSU fund any more research? Will Wymore continue?

The CDC has formed a task force to see if Morgellons is a distinct disease. Since the CDC aims to nip new diseases in the bud, you would think they would make a determination fairly soon (if there IS a disease, if there is not, it might take longer). The involvement of the CDC has been a big press talking point, and their initial report will be very interesting.

Occam’s Hot Tub

“Morgellons Disease” is the name chosen by Mary Leitao in 2002 to represent what she thought was wrong with her son – a disease that supposedly caused eczema-like symptoms on his face, and some fibers she found in the lesions on his skin. Leitao started a web site, other people who though they had a similar disease joined her and began a campaign to publicize the “disease”. Eventually the media picked up the story, public interest grew, more people self diagnosed, people wrote to their congressmen, the CDC started an investigation, more media coverage followed, and more people self diagnose.

“Occam’s Razor” is a maxim attributed to the 14th century friar William of Occam, and goes:

“entities should not be multiplied beyond necessity.”

This is often misunderstood as either “the simplest explanation is the best”, or “the shortest theory is correct”. Take the question “why is there fighting in the Middle East”, the simplest explanation is “God’s will”, but the reality is more complex.

What Occam is saying is that you should not add unnecessary entities to an explanation. However it says nothing about adding necessary entities, nor about how many of them there should be. In many cases the best explanation using Occam’s Razor is neither short, nor simple.

You also need to ask a good question to get a good answer. “What is Morgellons” is not a good question, since it presupposes that Morgellons is something. “What causes Morgellons” is worse, since it assumes the first question is answered. The question that should be asked is:

“What is wrong with all those people who say they have Morgellons?”.

Again, we could go for a simple explanation like “they were cursed by the devil”, but that’s introducing an unnecessary entity (the devil) so fails the test of Occam’s Razor. What about “they have a new disease that causes lesions and fibers”. That too introduces a new entity, a “new disease”. The question Occam would ask here is “is a new disease necessary to explain what is wrong with all the people who say they have Morgellons?”.

In other words: can we explain what is happening to the Morgellons believers without introducing a new entity, without the “new disease”.

One thing is for sure, the explanation is not simple. The wide variety of symptoms make it extremely unlikely that a single pathogen is responsible for all the cases. In fact, only the most ardent supporters of Morgellons will suggest that everyone has the same thing. Even supporter such as Dr. Wymore will concur that a large percentage of the people who post on places such as Lymebusters have some form of delusional disorder, and that the majority of the fibers are simply lint.

But I think I can phrase the answer to “what is wrong with them” in a reasonably short manner:

“They all have different health problems with a superficial symptomatic resemblence, and they mistakenly believe they have the same disease”

That’s a simple explanation. It fits the facts very well. It does not introduce any new entities. Clearly there are lots of different health problems going on. The only commonality is fibers, and that is explained in a very simple manner by them being environmental. What we have introduced here is “lots of different health problems”, but that’s not a “new entity”, since it’s already a given that they have lots of different health problems.

I’ve gone over what those health problems might be in several previous posts. This all simply explains what is going on, in a way Occam would like. But there are a few niggling problems, like red and blue fibers that do not melt at 1400F, that were extracted from under unbroken skin.

Again we are asked to believe one particular answer: “they were produced by a novel organism of a type new to science that creates fibers that can withstand temperatures that would destroy any organic material, and in several colors”, which introduces this rather complex new entity.

In this case we can produce a shorter answer for these particular fireproof fibers: “the fibers came from ouside the body, and slipped under the skin”. There are fibers outside the body, and fibers can slip under the skin, like fiberglass fibers, which melt at 2000F.

The Morgellons phenomenon is a good example of a case of Occam’s razor where the more accurate explanation is more complex than the explanation that introduces new entities. The short answer is “a new disease”, the more accurate answer is “many diseases, known and possibly unknown, combined with many environmental factors”. There’s a lot of entities in that explanation, especially when you look at individual cases, but there are no NEW entities being introduced. Just as the real explanation for the strife in the middle east is vastly more complex than “God’s will”, the real explanation for all the thousands of claims of Morgellons Disease if vastly more complex than “New Disease”.

The real answer is comprised of thousands of different stories, mini-explanations to mini-questions, sub questions to “what is going on with these people”. Like: “why would someone have fireproof blue fibers under their skin and also have neurotic excoriations”

I don’t know the right answer, but I’m going to posit a straightforward one called “Occam’s Hot Tub”.

Some time ago, the patient used a blue fiberglass hot tub. The fiberglass suffered from “fiber bloom” (prevalent in FL, CA and TX, thanks to the weather), which creates loose splinter of fiberglass. The pressure of sitting on and against the tub caused large numbers of these splinters to become embedded in the patient’s skin. The water was also contaminated with Pseudomonas aeruginosa, a bactirium that causes “hot tub folliculitis“. This developed into an itchy rash with many lesions, accompanied by a general sickness. The embedded fibers contributed to the itching. The patient scratched, which made things worse, creating new lesions, and creating an itch-scratch-itch cycle, compounded by a mild OCD. The initial rash cleared up, but the itching continued because of the now neurotic scratching. Normal fibers were found in the lesions. The patient is convinced she has Morgellons. She goes to Dr. Wymore, who extracts some of the fiberglass fibers from under the unbroken skin on her back.

Sure, it’s a long explanation, and we don’t know if it fits the facts, since we don’t know the evidence for the actual case. But if the patient had indeed been in a hot tub sometime in the past, then that would explain the blue fiber a lot simpler than a new disease would. It does not introduce any new entities.

There is no evidence presented that a new entity is required to explain. There is no need for a new disease to explain the thousands of people who self-diagnosed with Morgellons.

Fibers on Primetime

OSU is apparently the only place in the world where mainstream researchers are looking into “Morgellons”. The research is being carried out by Professor Randy Wymore as a discretionary project. So far they make two claims:

1) They have extracted fibers from under the skin of Morgellons patients

2) They have been unable to identify the fibers, despite extensive efforts

Here’s the fiber they showed on Primetime:

img_2021aw.jpg

It’s in the hands of a doctor, who they blindsided by handing him this picture and telling him that despite extensive testing, it was like no fiber known to exist.

He handled it rather well, responding “one fiber does not make a new disease”, and we could very well leave it at that, since it sums things up nicely. But let’s take a closer look at the OSU evidence.

Here’s what has been revealed so far:

We have tested three fibers, two blue, one red.
We are completely unable to determine what these fibers are made from, because there is no match in any known databases.
There isn’t even anything that is a close match.
The red fiber is chemically different to the blue fibers.
The blue fibers are chemically identical to each other.
The fibers sat in acid and many other solvents we had for a week, but they did not leach color.
The fibers did not melt or boil when heated to 1400F (760C). They kept their structural integrity, although they did turn black (whereas anything organic would be ash at those temps)

Not, a lot, but at least it’s getting towards some scientific evidence. Unfortunately it really just raises a lot more questions than it answers.

What about some simpler info on the fibers? How wide were they? How long? How ductile were they?

Where did these fibers come from? Different people? What other symptoms did they have?

How were the fibers extracted? Where on the body were they? How many other fibers did the person have?

What parameters were used to search for the fibers in databases? What databases? FTIR? What is the statistical significance of not finding a substance in this database?

What acid was used? How were they heated?

They showed an FTIR graph on the show:

ftir-bigw.jpg
Is this a graph of the mystery material? Unfortunately it’s two graphs overlaid, so you can’t tell much. Why does Wymore not tell us what the peaks were for this fiber?
I could go on, but the point is that this new evidence really suggests almost nothing. If anything the fact that the red and the blue fibers were different suggests that this is NOT something produced inside the body, as that would be much more likely to produce identical fibers.

The high melting point of the fibers suggests it is not organic, which again is a point against it being produced inside the body. It point much more strongly to environmental contamination.

So what we have is three unknown fibers, of unknown origin. The characteristics of these fibers seem to suggest they are not organic, hence were not produced inside the body.

The wider question here is why Dr. Wymore is participating in this media extravaganza? he personally is convinced that “something” is going on with “some” morgellons patients. But refuses to say why. He’s even said he’s “months beyond” trying to explain why. yet he has no problem with appearing on television and hence convincing thousands of vulnerable people that they have a novel pathogen, and should ignore their doctor’s advice.

Wymore is soliciting charitable contributions. He has a responsibility to explain why.

——————————-

Addendum: Here’s another source of chemically treated red white and blue fibers:

20-bucks-blue-200x.jpg

20-bucks-rwb-fibers-200x-2.jpg

Any guesses?

ABC ‘Morgellons’ Medical Mystery

The “Medical Mysteries” series is proving to be quite a money maker for ABC. The New York Daily News reports:

It’s been a challenging summer for the usually dominant ABC. How tough? Reality offerings have crashed and burned. Few are watching reruns of “Lost,” “Grey’s Anatomy” and “Desperate Housewives.” But things are looking up. ABC News’ “Medical Mysteries” series, which examines bizarre medical conditions, has turned out to be a real crowd- pleaser.

So it’s not surprising that they would continue to promote the series, and as part of this promotion offer up a preview story on their ABC “news” site, right next to the wolfman, the echolocating blind men, and the women who smell like dead fish.

The ABC Story features Morgellons Patients: Brandi Koch, Anne Dill, Greg Smith and also Mary Leitao, the founder of the MRF, and her son, Drew.

Leitao’s part in the story is interesting, since it explains the start of the Morgellons phenomenon:

Armed with research, Leitao took her son to a doctor at one of the country’s leading hospitals. He dismissed her tale of fibers and wrote to her pediatrician, saying that her son needed Vaseline for his lips and that his mother needed a thorough psychiatric evaluation.

well, you would think that the next logical step in the story would be to explain how she found her son’s fibers were not normal, and disproved all the doctors, but no, we get:

Undaunted, Leitao began poring through the medical literature looking for clues. What she discovered was a 17th-century reference to a strange disease with “harsh hairs” called “morgellons.”

A disease where infants have a fever, and then you rub milk on them, hairs spring from their backs, which you pluck, and the fever vanishes. Nothing to do with anything. Why do they keep bringing this up?

What does Mary say about Drew’s fibers:

“What I saw were bundles of fibers, balls of fibers,” Leitao says. “There was red and blue.” Even stranger, they glowed under ultraviolet light.

I have explained red and blue fibers before. I’ve also explained the glowing (although that’s usually white fibers, which Mary also found, just did not mention in this story). I’ve even discussed the fibers emerging from his lip. There is no evidence at all that Drew had anything at all unusual going on.

Now here’s something I’m looking forward to seeing:

Dr. Greg Smith of Gainesville, Ga., has been a pediatrician for the past 28 years. He claims a fiber is coming out of his big toe, and he has video footage to prove it.

Video footage of fibers emerging is something I’ve been suggesting for a while. The fibers are the only really interesting thing about “this disease” for which you might have a chance of getting some evidence.

The rest of the article is similar to other media articles. Anne Dill (who has a very impressive photo gallery) says her husband died of Morgellons, but he was actually diagnosed with ALS. 4500 people are supposed to have contacted Leitao, when all they did was fill in an internet survey. A doctor says that the lesions form when people scratch themselves.But the real news, and what I suspect that MRF were so excited about before they collapsed, is that the Tulsa City police department were unable to identify some fibers collected from a Morgellons Patient by Randy Wymore:

Forensic scientist Ron Pogue at the Tulsa Police Crime Lab in Oklahoma checked a morgellons sample against known fibers in the FBI’s national database. “No, no match at all. So this is some strange stuff,” Pogue says. He thinks the skeptics are wrong. “This isn’t lint. This is not a commercial fiber. It’s not.”

The lab’s director, Mark Boese, says the fibers are “consistent with something that the body may be producing.” He adds, “These fibers cannot be manmade and do not come from a plant. This could be a byproduct of a biological organism.”

What kind of obscure biological organism produces fibers? Bombyx mori? Rodentia Chinchillidae? Ovis aries? Exactly how extensive is this FBI national database, and how do you check a sample against it? Here’s an earlier mention of the involvement of the Tulsa Police:

The fibers, about the size of small eyebrow hairs, are not living organisms, Dr. Wymore decides. He teams with a Tulsa police department crime lab to sort through fiber samples, and though the lab owns a database of more than 800 fibers, these fibers match nothing.

800 fibers does not sound like very many to me. I bet they don’t have this one:mystery-60x-1.jpg

or this one:

mystery-60x-2.jpg
I’ve got more. My point is that 800 fibers might cover 90% of the common household fibers found in your average bit of lint, but there’s still probably over 10,000 other uncommon fibers like the above – lots of room for unidentified fibers. (A prize to the first person to correctly identify the above two photos – they are from a QX5 at 60x, so are about 3mm across).

Here’s a natural man-made fiber (the large one on the bottom right):

mystery-60x-5.jpg
I KNOW they don’t have that one in their fiber database. Why? I made it myself, simply by firmly rubbing my upper arm with a fingertip after having a hot shower. Some old sun-dried skin sloughed off, and rolled up with natural skin oil and sebum, forming this fiber-like shape. Everyone has these “fibers” from time to time, not everyone really looks at them with a microscope, or asks the police to identify them.

Here’s a much better article on Morgellons, from the Associated Press:

http://www.mercurynews.com/mld/mercurynews/living/health/15227993.htm

He recruited two Oklahoma State faculty physicians. They tweezed fibers from beneath the skin of some Morgellons patients who visited the Oklahoma State Center for Health Sciences in Tulsa in February, Wymore said, and sent those samples to the Tulsa Police Department’s forensic laboratory.

The police checked the samples against carpet and clothing fibers and other materials, and conducted chemical analyses and other tests. Nothing matched, said Mark Boese, the police lab’s director.

“How it is being produced, I don’t know,” Boese said. He theorized the fibers could be produced by human hair follicles that somehow encapsulated pollutants processed by the body.

I’ve nothing against the Tulsa Police forensic department (although they do seem to be big fans of CSI). But again, all they have said is they cannot identify some fibers, and they don’t think they are man-made or plant fibers. Hopefully more information will be forthcoming, but they have not explained how they have scientifically determined they are “some strange stuff”. What tests were run? What were the results of the tests? The Tulsa police has some nice equipment. Were these tests run with public money? Can we have the results?

Maybe we’ll see more more details on the show. But remember, ABC is here to entertain you, their aim is to build market share. Keep that in mind, when weighing their evidence. Is it possible that there is some less entertaining evidence? How many fibers were looked at? How many of those fibers were simply not entertaining enough?

MRF Reshuffle

The changes at the Morgellons Research Foundation continue, after removing all references to nurses, and expruging Dr. Randy Wymore, Dr. Greg Smith, Charlse Holman and Cindy Casey, William Harvey is the new Chairman of the board.

The text “For our first Corporate Donation. Thanks to all the folks at SeaChange for their support..” has vanished from the “sponsors” page.  One wonders if this has anything to do with the recent allegations of financial problems.

The photo with the large check is also gone from that page (although it’s still on the site).
http://morgellons.org/img/bgchk3.jpg

I was wondering if they were going airbrush people out of that photo, given the swiftness of the removal of their names from the site .  But I guess there were too many people to remove.

I think it’s too early to comment on the meaning of all this, so I’ll wait and see how things pan out.  

Of note is the big ABC Primetime: Medical Mysteries on Wednesday night at 10PM.  This is the great hope of the MRF, something they have been working on for months.  It’s airing will be a turning point, one way or another. 

Wymore breaks with MRF

This morning, (Aug 4th 2006), the Morgellons Research Foundation removed every single reference to Professor Randy Wymore from their web site: morgellons.org

As well as removing all mention of him as “Research Director”, they also removed the “Letter to Doctors“, the “OSU Rounds” article, and all his “Medical Updates

His email address, along with the email address of the Chairman of the Board Charles Holman, and the Nurse Coordinator Cindy Casey, were removed from the “Contact” page. Leaving only Leitao, Buckner and Cowles.

The MRF contact for medical researchers has changed from morgellons@okstate.edu to morgellons@aol.com (although morgellons@okstate.edu is still valid for any researcher who wants to help the OSU research effort).

Dr Greg Smith and his wife have also been fully removed from the site.

[Update:  Aug 5th – All seven nurses: Cindy Casey, Jo Ann Mangili, Judy Smith, Diane Gay, Kristen Seargeant, Patti Nash and Donna Doherty,  have been removed from the site]

I have no interest in the politics here, but this is a significant event in the brief history of Morgellons. The involvement of Professor Wymore has been a major part of every single news story about Morgellons. His presence lent credibility to the story. Without Wymore, the MRF would never have been able to get the major coverage they have been able to. Without Wymore, the CNN, Today Show, GMA and Prime Time Medical Mysteries shows would never have happened.

Without Wymore’s participation in the publicity machine of the MRF, the public interest would have been greatly muted, and the CDC would not have been forced to start an investigation, which in turn led to even more publicity.

My position all along is that there has not been sufficient evidence to support Morgellons being a distinct disease where fibers emerge from the skin. I felt that the excessive publicity given to Morgellons, based on this limited and unscientific evidence, was damaging to the health of a vulnerable segment of the population.

I hope that these changes at the MRF will prompt the media to take a closer look at exactly what has been going on, and to temper their sensationalistic, entertainment based, health reporting.

I also hope that people who think they have Morgellons might be prompted to consider that perhaps there is some doubt in the matter, hence consider they might have something else, and hopefully seek appropriate treatment.

MRF Accounting Problems

Post on Lymebusters from Dr Greg Smith, Medical Director of the Morgellons Research Foundation 8/2/2006, around 10 or 11 PM, PDT :

It is with heavy heart that I write this note. I have been associated with the Morgellons Research Foundation as a member of the board of directors and Medical Director for almost two years. What has come to pass has saddened and troubled me. I am especially upset that I recently posted a note on Lymebusters asking Morgellons patients and their family and friends to donate to the MRF. It was, and still could be, an exciting time for all of us with this disease.

` Unfortunately, several events over the last month have disturbed me to the point I must retract my previous letter asking for donations to the Morgellons Research Foundation. I ask that you do not donate to the MRF. Instead, donate directly to Oklahoma State University to help fund the research being done by Randy Wymore.

I make this request because I cannot assure you the money you donate would be used appropriately in the fight to understand and conquer this disease.

My wife, Judy, had agreed to become Treasurer for the foundation. We decided it would be prudent to review the financial records and bank statements of MRF before she accepted that responsibility. I felt this was important to protect ourselves and to become familiar with the accounting system being used.

Mary Leitao has thus far not allowed me to see those documents! She said the MRF attorney was revising the by-laws and she would forward when completed. But I could see no reason she should not be able to send the financial information.
As I cannot review the documents, I cannot say that donations to MRF are being used appropriately to investigate the bizarre disease from which we suffer!

Another major concern I have is the apparent lack of desire by Mary and a few others on the Morgellons Research Foundation board to structure the foundation on a more business-like model! Even though MRF has been incorporated and has a board of directors, the decisions of the board seem unimportant to those individuals who have been with MRF the longest. Specifically, Mary, Doug Buckner, and Ken Cowles have recently made decisions which were in opposition to the direction and majority votes of the board of directors or which should have been made by the board.

I have served on a number of boards of non-profit organizations. This is the first time I have felt the board was only a formality and business decisions were made by individuals such as the Executive Director regardless of the board decisions and votes.

I found to my amazement that Mary seemed to expect all board members to agree with her and rubber stamp her decisions. When I disagreed with her, she became upset and angry. The adolescent “drama’ which has ensued has been emotionally draining. Worse, that energy would be better spent trying to understand this disease and educate the public and the medical community about it.

This is not the first time I have experienced the emotional and, to me, rather irrational response Mary has exhibited when someone affiliated with MRF disagreed with her. It is tragic that Mary reacts in that manner, as she now seems to view me and some others at MRF as her enemies. Yet I had been her staunch supporter and will always feel a debt of gratitude to her. MRF was a beacon of light and sanity for me early in my Morgellons journey!

Personally, I remain committed to doing everything I can to further our common goals! But I cannot expend my energy on peripheral, emotional issues. I do not know if I will be welcome at the MRF in the future. Nor do I know if I even am willing to again be associated with the foundation. But I remain committed to “the good fight” for my health, my wife, and all Morgellons patients.

I wish to emphasize I have no evidence of wrong-doing by anyone at MRF. But since I was not permitted to review the financial records (which felt very, very odd!), I cannot in good faith ask anyone to contribute to the foundation.

My best and warmest regards to you all! Remember: FORTITUDE!

Greg Smith
(Gregory V. Smith, MD, FAAP)

Post from Cliff Mickleson, also emailed to me:

New and alarming reports have recently begun to circulate concerning financial irregularities and mismanagement of funds at the Morgellons Research Foundation.

The emerging potential scandal and its attendant controversy is currently focused on alleged malfeasance of office and misappropriation of donated funds by MRF founder and Executive Director, Mary Lieto.

According to sources close to Board Chairman Charles Holman, Ms. Leito has consistently refused to produce financial records or to account for a large number of donations bequeathed to the foundation by donors.

This, despite repeated requests by Board members,

The missing financial records being sought cover a span of several years.

“We are doing all that we can to account for the donations made to this organization” Says Holman:

“Unfortunately, Ms. Leito is not cooperating in this effort to provide accountability to the public who’s trust she was charged with.”

Mr. Holman’s office reports that they are extremely concerned that they have been unable to recover any record of donations personally received by Ms. Lieto for the year of 2004.

Board members are also seeking access to financial records for subsequent years including, and up to, year 2006.

According to MRF Board members who have been contacted concerning this issue, no records whatsoever have been released for public examination by Ms. Lieto.

“She has consistently refused to return phone calls made to her by Board officers,” reports Dr. Greg Smith, another member of the MRF Board of Directors.

“She also has refused all pertinent information requested by the Foundation’s Treasurer” He added.

A spokesman for several of the officers of the Board of the Morgellons Foundation relates that an official IRS investigation of potential civil and criminal activities on the part of the executive Director and Founder Mary Leito and several others, may soon be under way.

-Cliff Mickelson

Both these posts were deleted from Lymebusters, reposted and deleted again. Other members of the MRF commented

Hey, there, Cliff..!

Hope your post can stay up (this time)….

Charles E. Holman
Chairman, MRF

Cliff, you are right on the money with this one! Thanks for posting and for making public what should have been made public long ago.

Folks, if any of you are making donations…sending it to OSU is the safest bet until the MRF is audited and forced to be lily white.

What’s sad is that they have to be forced!

Cindy Casey
MRF/NAP

Yep, it’s time to call Uncle Vinny! Not only are the financial records not being produced…They also seem to have turned on the medical people..the people that have helped them the most.

They have turned on me for encouraging folks to donate to OSU. Weird, huh?

Cindy Casey
MRF/NAP

White Fibers Fluoresce Blue under UV

Hardly rocket science, anyone who has been to a nightclub in the past thirty years would have noticed that white clothing fluoresces blue-white under UV lights (UV, Ultra Violet, Black Light, Woods Lamp, same thing). Particularly white cotton, including the white fibers in denim jeans.

Yet, Time Magazine says:

Dr. Gregory Smith wants people to know it’s not all in his head. According to the Gainesville, Ga., pediatrician, white fibers have been burrowing into his skin for the past two years, making him feel like he’s under constant bombardment from insects or cactus needles. Shine a black light on these fibers and they’ll fluoresce blue, he says, just like something you’d see in The Twilight Zone.

And the Morgellons Research Foundation says:

They are generally described by patients as white, but clinicians also report seeing blue, green, red, and black fibers, that fluoresce when viewed under ultraviolet light (Wood’s lamp).

It all started with Mary Leitao, who “showed the doctor how the fibers glowed under an ultraviolet light”.

So what’s going on here? Why does the MRF and their publicity department not know that practically all white clothing fibers fluoresce under UV light? Why do they keep repeating that their fibers fluoresce as if it’s something special?

If they can’t get that science right, something that is practically common knowledge, then what else might they have got wrong?

Here’s some white acrylic fibers at 200x, with normal and UV lighting.

flouresenct-acrylic-bottom-200x.jpg flouresenct-acrylic-uv-200x.jpg

Not like something out of The Twilight Zone, just normal clothing fibers.

Update (Aug 1st, 2006): For an explanation as to exactly WHY they fluoresce, see here:

www.techno-preneur.net/ScienceTechMag/july06/Fluorescent_brighteners.pdf