Randy Wymore is an associate professor of pharmacology and physiology at Oklahoma State University Center for Health Sciences. He is also the Director of the OSU-CHS Center for the Investigation of Morgellons Disease, a newly formed organization that has grown out of Wymore’s work investigating what is know as “Morgellons”. The CIMD has the following vision statement:

http://www.thenmo.org/CIMD-vs.pdf

Which says in part (emphasis mine):

Morgellons is a multi-system disease of unknown etiology
Morgellons disease is discounted by many public health officials and physicians
Physical and neurological symptoms are often dismissed or ignored
Sufferers are labeled with delusions of parasites or neurotic excoriations
OSU-CHS physicians/researchers have physical evidence of Morgellons Disease
Morgellons is not psychiatric in origin
Morgellons is an emergent disease
The Center for the Investigation of Morgellons Disease will facilitate successful research,
treatment and an eventual cure for Morgellons Disease.

and then goes on to list the ways in which Morgellons will be researched, treated and cured.

Wymore has also released a much longer personal position statement, dated Jun 19, 2007:

http://www.thenmo.org/RWud0607.pdf

Which confirms what was said in the vision statement:

6. There is no clear and simple diagnostic test yet to confirm or rule out
Morgellons. Still, 100% of the patients, that were felt to genuinely have
Morgellons Disease [about 29 patients], have large microscopic-to small macroscopic fibers visible
under their outer layer of skin
. These fibers are not associated with scabs or
open lesions, nor are they under scarred tissue. The idea that Morgellons fibers
are mere fuzz and lint, simply sticking to the lesions and scabs, is not possible
based on the observations that were just described. These fibers are under
“normal-appearing” areas of skin. In contrast, such fibers have never been
observed in even one person who does not claim to have Morgellons
. Clearly,
there is something different in the skin of purported Morgellons sufferers
compared to the non-Morgellons population.

That seems at first glance to actually be a “clear and simple diagnostic test”. 100% of Morgellons patients had fibers, 0% of non-Morgellons patients had fibers. With a 100% success rate, even 29 samples gives you a high degree of certainty. What’s the problem here? Patient sampling is often an issue, so where did these patients come from? Wymore says earlier:

Of the thirty or so patients claiming to have Morgellons disease, that clinical faculty have examined in facilities associated with OSU, only one patient likely did not have Morgellons.

That’s quite an impressive set of statistics. 97% of all patients that claimed to have Morgellons, and were examined by OSU, were found to have visible fibers under unbroken skin, and these fibers have never been observed in people who did not think they had Morgellons. How is this not a “clear and simple diagnostic test”?

Unfortunately, we can’t say, because Wymore will produce no evidence. What do these fibers look like? If they are visible under unbroken skin, then why are there not 29 photographs of fibers under unbroken skin? Why not even one photo? Have these visible fibers actually been examined visually by a dermatologist to make sure it’s not just ingrown hairs, or blood vessels, or nerve fibers, or some symptom of one of the thousands of dermatological conditions with which Wymore is not familiar? Patients who claim to have Morgellons will scratch themselves. Perhaps the scratching results in the fibers becoming embedded in the “unbroken” skin? Or perhaps scratching results in the existing fibers in the skin (hairs, blood vessels, etc) becoming visible. If these fibers are as easily found as has been suggested, then why, after more than a year, has there been no clue released as to their chemical makeup? Not one test result? What is the background of the patients? How were the patients selected? How long have they been scratching themselves? What diagnosis does a dermatologist make of these patients after being presented with the Morgellons evidence?

Wymore might say this lack of evidence is because “The writing of manuscripts, for submission to scientific and medical journals, detailing our observations is a work in progress.” But that’s misleading. Wymore has already published his conclusions. He shouts from the rooftops that “Morgellons is an emergent disease”, and “Morgellons is a multi-system disease of unknown etiology” and “Morgellons Disease is real physical pathology of unknown cause.” He announces these conclusions without evidence. He goes on television to announce these conclusions. He releases “vision statements” and “position statements” that clearly state these conclusions. All without a shred of evidence. After over a year of research, still no evidence.

Wymore is a big fan of the academic process. He spends the largest section of his position paper in mocking “debunkers”, such as myself, calling them “amateurs”, “not scientific” and “laughable”. He decries my web site as “at the very least, a waste of valuable time and at the worst, hurtful”, because I’m not going to talk anyone out of their delusion. Now I’ve had a lot of praise for my web site from individuals, journalists and scientists, and I’ve even had several emails from itchy people who did in fact find lint on their skin, and though they had Morgellons, and only realized what it actually was after finding my web site. Of course, if someone is chronically deluded then nobody can talk them out of it. I have no illusions there, and it should be obvious that that is not what this web site is about.

It seems a little odd to me that Wymore should spend a page devoted to pointing out how non-academic internet debunkers are, and how their amateur efforts will hurt rather than help, and then on the next page says:

I applaud the many
physicians and nurses who ARE attempting to treat Morgellons Disease by trying
different strategies. It will be wonderful if one of them stumbles onto a complete
cure for the disease. In an academic or medical school setting that approach is
not workable. Before human subjects can be used or so-called clinical trial
established, there must be an arguable rationale for the treatment.

So, it’s fine for Stricker and Savely to sell expensive long term antibiotic treatments to people who think they have Morgellons? Treatments have have NO SCIENTIFIC EVIDENCE of efficacy. Treatments that are based on a theory that Morgellons is related to chronic Lyme, and treatments that are so far out of the mainstream that Savely was forced out of her Texas practice for prescribing them? It’s fine for Wymore’s friends to do things that even he says are not workable in an academic setting? Why? Because they care?

Professor Wymore cares a lot about the suffering. I suspect Stricker and Savely care a lot too. The patients desperately want to be believed. By believing them, Wymore makes them feel a lot better, and they are very grateful to him. By believing them and giving them “treatments”, Stricker and Savely also make them feel better, and they are grateful to them (but poorer).

I care a lot. I care for the patients. I care for the people who are sick. I want the people who are sick to get better. I want people who are not so sick to not get worse. I want them to get appropriate medical treatment. I want them not to waste time and money with quack remedies for a disease for which there is not evidence of existence.

What I want, perhaps most of all, is for people to realize that “disease or delusion” is a false choice. When I say that “Morgellons is not a distinct disease”, or even if I were to say “Morgellons is not real”, it does not mean “you are delusional”. If you are sick, I don’t know what is wrong with you. I don’t know if you are delusional or not. I don’t know what is wrong with your skin. I don’t know why you itch. There are thousands of possible reasons for your symptoms, and I don’t know what is behind your particular symptoms. All I know is that nobody has ever produced any evidence that Morgellons is a distinct disease or a “real physical pathology”. Nobody has produced any evidence that the fibers are in any way involved. Yet they continue to talk and act as if they have. They need to put up or shut up. It’s the ultimate in bad science to announce your conclusions with 100% certainty, and then expect people to make health-care choices (and even prescribe treatment) based on those conclusions, without offering any evidence.

 

Here’s the best report I’ve seen so far on Morgellons:

http://www.kcet.org/lifeandtimes/blog/?p=131

It’s a seven minute video, and a refreshing change from the brief alarmist segments we’ve seen so far on local TV. It actually presents a very balanced look at the problem, and is well worth a view.

In the accompanying text there is a telling quote from Professor Wymore:

“I entered Morgellons research as a skeptic and have come to understand it as a multi-system disease of unknown cause. Morgellons is off-handedly discounted by many public-health officials and physicians who ignore physical and neurological symptoms — and, instead, label sufferers as delusional without looking at their skin.

If medical professionals would employ a simple diagnostic tool, such as a dermatoscope, they would see microscopic fibers under unbroken, non-scarred skin as my Oklahoma State University Center for Health Sciences colleagues and I have seen. OSU-CHS researchers have evaluated fibers and material collected by clinical faculty, healthcare providers and patients.”

Wymore seems stuck in a bit of a mental rut, saying the same thing over and over without really stopping to consider the implications of what he is saying.

Supposedly there are over 5000 people with “Morgellons”. They usually report having gone to many doctors, usually in double figures. That’s over 50,000 doctor visits.

What Wymore is saying that that out of those 50,000 visits, they have all been “off-handedly discounted … without looking at their skin”.

Just consider for a moment the implications here. Out of 50,000 docotor visits nobody has noticed that there are fibers growing under the skin? Out of 50,000 doctor visits, including thousands of dermatology visits, nobody looked at the skin of people with obvious skin problems?

Clearly these patients have had their skin examined several times by many doctors. The doctors diagnosed whatever the skin conditions were, and if they saw fibers they did not look suspicious, as it’s perfectly normal to have fibers in your lesions.

Wymore should put up or shut up. He claims to be 100% convinced, and has claimed this for many months. He is a scientist, so he must be basing this on observable evidence. So far all he has produced is a few anecdotes and a couple of unidentified inorganic fibers. If the evidence is as plain and convincing as he claims, then what exactly is the problem in producing this evidence?

Professor Wymore, what would be more productive: performing PCR on bits of lint for several months, or showing your evidence to a few dermatologists and getting the medical community on your side? I suspect that deep inside you really know the score. You are just more comfortable doing your meaningless tests, and being a hero to a sick community.

What would Barry Marshall do?

 

The problem of Morgellons is primarily one of a stark divide between the perceptions of the doctor on one hand, and the patient on the other.

The doctor sees a varied set of physical and mental symptoms that could be caused by one or more conditions. They see lesions on the patient’s body that often look like the patient has scratched themselves. They also see the patient pointing out things on their body, like lint, hair and specks of dirt, and they hear the patient say these things emerged from their body. They hear the patient insist they have a disease called “Morgellons” that has only recently been discovered.

The patient sees the doctor trying to “explain away” what are, to them, obvious symptoms. The patient thinks they feel the the fibers move, and emerge from their body. The patient is frustrated by the doctor’s suggestion that there might be an emotional component to their symptoms. The patient rejects the doctor’s diagnoses and substitutes their own.

In this post, I’m going to focus on the doctor’s perception of these patients. I feel what these fifteen doctors and professors say here really encapsulates and explains many of the problems, and answers many of the arguments surrounding “Morgellons”.

http://www.timesonline.co.uk/article/0,,18393-2188371.html

“This is not a mysterious disease,” says Dr Norman Levine, a Professor of Dermatology at the University of Arizona. “If you polled 10,000 dermatologists, everyone would agree with me.” He says he has seen 100 patients suffering from such symptoms, and they responded well to treatment, including a drug called Pimozide, which is used for chronic schizophrenia. According to Dr Levine, they are suffering from a monosymptomatic disorder in which they are absolutely convinced something is in their skin, a delusional parasitosis. He says he has studied the fibres his patients bring in by the bag-load and they are textile in nature.

http://www.livescience.com/humanbiology/060526_morgellons.html

Michael Girardi, a dermatologist at the Yale School of Medicine, had never heard of Morgellons but when its symptoms were described to him, he was reminded of another disorder that is well known to doctors. “They just renamed it,” Girardi told LiveScience. “We just call it delusions of parasitosis.”

“It’s basically when a patient thinks that there’s something coming out of their skin, a material or bug of some sort, when truthfully there’s nothing there,” said Stacy Beaty, a dermatologist at the Saint Louis University School of Medicine.
In medical schools, physicians learn to watch out for the “matchbox sign” of delusional parasitosis, when patients bring in hair, skin or clothing lint, sometimes in matchboxes, that they claim contain the insects or parasites responsible for their torment. However, when examined, the samples reveal no such thing. The lesions and scratches sometimes seen on patients with delusional parasitosis are usually self-inflicted, Beaty said.
“To rule out any infectious causes and also to put the patient’s mind at ease, a lot of times we’ll do skin biopsies,” Beaty said in a telephone interview. “If we feel that it’ll be helpful, we might also start different anti-psychotic or anti-anxiety medicines.”

In response to rising media coverage about the condition, the Los Angeles Department of Health Services recently issued a statement that said bluntly: “No credible medical or public health association has verified the existence or diagnosis of ‘Morgellons Disease.’ The current description of the disease is vague and covers many conditions.”

http://www.rgj.com/news/stories/html/2004/05/08/70309.php

“In many cases, (delusional parasitosis) is a mono-delusional problem,” Lynch [Dr. Peter Lynch, professor emeritus in dermatology at the University of California, Davis] said. “The patients are normal in every other way. It’s always hard to get such patients to believe it’s a psychological problem. Some patients are very convincing, and I’ve had psychiatrists call me about referrals I’ve made and ask if I’m absolutely sure there’s nothing organic going on here.”

He said in the 40 years he has been practicing medicine he hasn’t seen a delusional parasitosis patient with physical symptoms that can’t be explained. He said while it’s possible some cases may be wrongly diagnosed, it’s unlikely a large segment of patients is suffering from a physical illness.

“You can miss a case and of course that happens,” Lynch said. “But are many being missed? In a word, no.”

http://www.rgj.com/news/stories/html/2004/05/08/70307.php

When told of Dr. Bill Harvey’s successful treatment with antibiotics of Morgellons’ patients in Houston, Dr. Peter Lynch of the University of California, Davis said the “cures” are easily explained by the placebo effect. Patients treated with sugar pills, for example, often get well because they believe they are receiving medicine

Lynch said 80 percent of patients with delusions of parasites respond to psychotropic medication, an indication their illness is mental.

“Anecdotal evidence doesn’t carry much weight,” Lynch said. “There are many anecdotes of alien abductions, but that doesn’t mean they are true. And as for the pictures, you can see pictures of the Loch Ness Monster on the Internet, too.”

“If there were a peer-reviewed study, with 15 or 20 patients who have the same exact thing in their skins, then maybe I’d believe it,” Lynch said. “When fiberglass curtains first came out, many people with skin conditions were diagnosed with delusions of parasitosis (DOP). But studies showed these patients had tiny (fiberglass particles) in their skin.”

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2006/06/02/MNGOJJ6JO51.DTL&hw=Morgellons&sn=001&sc=1000

“There are a huge number of people out there with (delusional parasitosis), and most of them are not getting adequate treatment because they have this fixed belief,” said Dr. Dan Eisen, a UC Davis dermatologist. “It’s probably just a group of patients who haven’t gotten the appropriate treatment, and they’re calling it Morgellons.”

http://www.popularmechanics.com/science/medicine/1662162.html

“Dermatologists are afraid to see these patients,” says Dr. Peter Lynch, professor emeritus of dermatology at the University of California, Davis. He says he has examined about 75 people with Morgellons-like symptoms in the past 35 years and believes they suffer from delusional parasitosis–literally, delusions of parasites in the skin. It’s a diagnosis people don’t like. One patient, threatening malpractice, convinced the state medical board to investigate Lynch. Another warned he had a pistol in the glove compartment of his truck, Lynch says. “He told me, ‘I’m going to shoot the next doctor who tells me it’s in my head.’”

Another prominent dermatologist, who insisted on anonymity out of concern for his safety, says he has diagnosed 50 or so Morgellons patients with cutaneous dysaesthesia–a neurological disorder that can result in the sensation of scuttling insects. And the spiny things? “In every case I’ve seen it’s a textile fiber, and it’s on the surface of the skin,” he says. He typically puts a cast over the lesions to prevent further irritation and after four weeks removes it. “Guess what?” he says. “The lesions are healed.”

http://www.dallasobserver.com/Issues/2006-07-20/news/feature_full.html

Part of the problem with a disease like Morgellons, [Tim Jones, an epidemiologist from the Tennessee Department of Health] says, is that its symptoms are both vague and varied. Before public health officials can investigate, there must be a clear definition of the disease. The Morgellons Research Foundation says they have that definition, but there is no one symptom, or even group of symptoms, that defines Morgellons. [...]
“Trying to do studies on a group like this becomes virtually impossible because you may have 10 percent of the people who meet a real strict definition and a whole bunch of other people who don’t,” Jones says. “If you go through 10 patients and one is having discolored sweat, another one’s having pieces of spaghetti stick out of his skin and another one’s having, I don’t know, heel pain, it’s really hard to think what would tie these things together”.

http://www.post-gazette.com/pg/06204/707970-85.stm

“They suffer terribly, but it’s psychiatric,” said Dr. Dirk Elston, a dermatologist in the Geisinger Medical System in Danville, Montour County. “The fact that there’s something online to cling to, it’s a difficult obstacle for us.”

“The moment you mention psychiatrists, these patients get extremely angry,” said psychiatrist Alistair Munro, author of “Delusional Disorder.” “They say there’s nothing wrong with their brain. They have all kinds of explanations.”

“I found no evidence of [anything suspicious] in Andrew,” Dr. Heldrich [Dr. Fred Heldrich, a Johns Hopkins pediatrician] wrote to Dr. Frac after the visit. Then he added: “Ms. Leitao would benefit from a psychiatric evaluation and support, whether Andrew has Morgellons disease or not. I hope she will cease to use her son in further exploring this problem.”

http://home.hamptonroads.com/stories/story.cfm?story=110940&ran=130308

“People don’t need the Internet as long as they’ve got the media,” said Edward Shorter, a professor of psychiatry and the history of medicine at the University of Toronto. Once the media reports come out about a new possible disease, even if it’s not real, some people see it, “and they say, ‘That’s what I’ve got. That’s my disease,’”

http://www.click2houston.com/health/4246515/detail.html

“I always feel that people should keep an open mind and I think there are scientific experiments, what we call evidence-based medicine, that can prove or disprove that an organism is causing this,” University of Texas Health Science Center at Houston dermatologist Dr. Stephen Tucker said.

http://seattletimes.nwsource.com/html/nationworld/2003152087_illness26.html

“In dermatology, we speak about something called an ‘outside job,’ which is a skin eruption made by the patient himself,” said Dr. Noah Scheinfeld, an assistant professor of dermatology at Columbia University in New York and an expert on the psychiatric origins of certain skin disorders. “When you look at the pictures of these Morgellons lesions, they are classic for that.”

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

Self-excoriation is a common feature of delusory parasitosis, despite the individuals’ protestations that they do not scratch. 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”. Hair follicles often are pulled out; the follicle accompanied by the associated sebaceous gland looks like a worm. – Nancy C.Hinkle, Professor of Entomology, University of Georgia.

http://www.emedicine.com/derm/topic941.htm

Patients pick at areas until they can pull material from the skin. This may be referred to as “pulling a thread from the skin.” – Dr. Noah Scheinfeld,

http://www.rangelmd.com/2006/08/there-are-these-little-fibers-coming.htm

Logically, any credible study of Morgellons should have tried to explain the connection between the fibers and the symptoms. It’s not a good sign that no one has bothered to offer a formal starting theory on Morgellons fibers and that the [Morgellons Research] Foundation criticizes physicians for not looking for signs of Morgellons when they don’t really know what to look for themselves. - Dr. Chris Rangel, MD.

http://www.nature.com/news/2006/060828/full/nm0906-982a.html

Noah Scheinfeld, assistant clinical professor of dermatology at Columbia University, says patients sometimes come in with pieces of their skin mixed with other materials in a box or a piece of Saran Wrap. “Such patients are a challenge to help and to treat,” he says. “They want to be believed above all and tend to be socially isolated.” Scheinfeld says the Internet has helped those with parasitic delusions to band together and reinforce each others’ beliefs.

“There really is no scientific basis at this point to believe that [Morgellons] is real,” says Stephen Stone, president of the American Academy of Dermatology.

 

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.

 

The Morgellons Research Foundation is an advocacy group. It has orchestrated the current media coverage by spoon-feeding a story to television news, both local and national. For those in the media who would like to do a similar story, I present the following 12-step method:

Step 1 – Find some Morgellons Patients. This is not difficult. Simply ask around on the Morgellons Research Foundation’s recommended Lymebusters forum. There are many people there who love to talk about their symptoms. Beware, as there are a few oddballs around, who might not quite be on message. Beware of patients with web sites that make them look obsessive, such as Anne Dill on Good Morning America, or Richard Vigil on 10News

Step 2 – V.O. – describe the symptoms of Morgellons in a scary manner, you want to hook your audience here. Note that thousands of people across the country have Morgellons, and there are hotspots of the disease in California, Texas and Florida.

Step 3 – Have the patient describe what is wrong with them, and have them show their lesions.

Step 4 – V.O. – Say these patients are being ignored by doctors, who claim it is all in their heads. It is important to set up sympathetic contrast in anticipation of step 9.

Step 5 – Zooming photos. Show photos of fibers and multi-colored fuzzballs, zoom and scroll while doing this, as it looks a lot more dramatic. Speak with a tone of amazement while describing the photos.

Step 6 – Professor Wymore soundbites – like “there’s definitely something going on“. Show Wymore in his Lab and wearing a white coat. Make it look like he’s an expert in this field. Do not mention he’s not a doctor. Do not mention he’s actually an assistant professor.

Step 7 – (Optional), show Wymore holding the letter he has written for sufferers to take to their doctors.

Step 8 – More zooming photos, this time describe how people find fibers inside their lesions. Try to make it sound impossible.

Step 9 – Find a doctor, interview him for hours, and show the line where he mentions “Delusions of Parasites“. Ignore complex terms like Neurotic Excoriations, Dermiatitis artefacta or “Case Definition“, as these cloud the issue.

Step 10 – Back to Wymore (or Ginger Savely), and have them say something to make the doctor seem silly. If it’s Savely, don’t mention she makes her living treating people who are convinced they have Morgellons.

Step 11 – A ray of hope: say that, at long last, the CDC is investigating Morgellons. Do not mention they are just investigating if there is any evidence that it exists in the first place.

Step 12 – Tie it up, cut back to your initial patient to remind the viewer of the human side of the story. V.O. about the hope they have. Make it real.

© 2012 Morgellons Watch Suffusion theme by Sayontan Sinha