Here’s an interesting article. Interesting in two parts, firstly because it contains more detail on what the CDC is doing, and secondly because it’s got such a ridiculous headline.

Skin-sore sufferers cast off as delusional

The headline is “Skin-sore sufferers cast off as delusional, and the article also says: “Most have bounced from doctor to doctor and been dismissed as delusional“, and “ Doctors tried to blame her case on stress and depression from the death of her husband in a car accident five years ago.”

Here’s the problem. Obviously people are sick, and they have physical problems. They are not imagining their sores. Yet the article says they have been “cast off” and “dismissed” as “delusional”. This gives the impression that the doctors think the patients are imagining their sores and other symptoms.

Symptoms are not delusions. Symptoms are symptoms. The delusion is in attributing the cause of their symptoms to a new disease which is making fibers come out of their skin. The delusion is thinking that there is stuff under your skin that you have to dig out with your fingernails.

The cases presented in the article are very sad. One woman digs out “grains of sand” and “curly white fibers” with her fingernails. She refuses to take the medication her doctors prescribe. The other woman pulls out “threads, black specks and crystals” from her skin, with tweezers, causing her pain. She also “follows doctors’ advice to bathe in bleach and vinegar baths.”

Are their sores entirely self inflicted? Or are they compounding a skin condition like pseudomonas folliculitis? Either way, they are not helping with their scratching and tweezing. I’d like to know what kind of “doctor” told her to bathe in bleach.

Clearly a lot of people who think they have Morgellons are delusional (or, as Randy Wymore says: “a bit eccentric”). This does not mean that their entire condition is delusional, it just means that delusion is a component of their condition.

The article clears up one thing: it was a 900 fiber database, and a 100,000 organic compound database used by the Tulsa PD, not a 100,000 fiber FBI database, as some reports suggested.

Read the article for the information on what the CDC is doing. I’m looking forward to the CDC’s initial report. It should clarify things immensely.

 

Three interesting articles on Morgellons in the Journal of the American Academy of Dermatology this month, the first two are free:

Morgellons disease: A rapport-enhancing term for delusions of parasitosis, Murase, Wu and Koo.
http://www.eblue.org/article/PIIS0190962206012175/fulltext

Morgellons Disease? Waddell and Burke
http://www.eblue.org/article/PIIS0190962206012217/fulltext

And one you’d have to pay for:

The Challenge of Morgellons disease, Koblenzer
http://www.eblue.org/article/PIIS0190962206012187/fulltext

Here’s an excerpt of the Koblenzer article:

Today, the informed dermatologist may be anywhere from doctor number five to number ten or more in this patient’s search for relief, and the patient will, in the interim, have raised both heaven and hell in a frantic attempt to solve the problem that has literally taken over his or her life. Today, the internet further complicates an already difficult situation, as we see in the two letters in this Journal, as our patients share every facet of their condition, every theory as to cause, and every attempt at relief, however far-fetched, with their fellow sufferers.

This sharing, and a tremendous amount of suffering, have given rise to the formation of “The Morgellons Research Foundation,” an organization devoted to “researching an emerging infectious disease,” with a medical board that boasts five MDs and an RN. Interestingly, none are dermatologists. An internet search for “bugs in the skin” will bring one to the Foundation’s Web site, and as Murase et al point out, the information therein may be very misleading to someone who suffers from delusions of parasitosis. One reads of cellulose fibers, fibers with “autofluorescence,” fuzz balls, specks, granules, strongyloides stercoralis, cryptococcus neoformans, “alternative cellular energy pigments,” and various types of bacteria for which potent antibiotics are prescribed, in the ever broadening spectrum of possible “pathogens.” In no case does one read of positive confirmatory tests, though many tests are undertaken. As Murase et al note, one also reads of numerous associated medical and psychiatric disorders that are attributed to, rather than co-existent with, or causative of the distressing symptoms. Frustration is extreme and suicidality is not unknown.

Clearly, as more and more of our patients discover this site, there will be an ever greater waste of valuable time and resources on fruitless research into fibers, fluffs, irrelevant bacteria, and innocuous worms and insects. It behooves us, therefore, as dermatologists, not only to be aware of this phenomenon, but also each to develop an effective way to work with these patients, and so enable the patients to be able to accept one of the medications that we know to be effective. This is a challenge indeed—so often the patient, feeling “brushed off” or not understood, simply does not follow through either with medication or with psychiatric referral.

If one is to succeed in helping these patients, it is important that one acknowledge to the patient that what the patient describes is exactly what that patient is experiencing. One can then empathize, as did Murase et al, with the patient’s pain and discomfort, their anger and frustration with dismissive doctors, and the devastating changes wrought by the condition in the patient’s life, and so develop a therapeutic relationship. With regard to causation, Morgellons disease may be an acceptable appellation, but it may also be that the touted “mysteries” of this disease only prove stimulus for further research by the patient. So, perhaps without going too far into the difference between a disease with a definite cause and a syndrome that may have different ones, it may be reasonable for us to refer to the symptom complex in question as “Morgellans syndrome” rather than disease 

Of note: all these doctors are saying they are considering using the term “Morgellons” to refer to conditions involving DOP when talking to people who suffer from  DOP and who also think they have Morgellons.  They are doing this since it eases communication with the patient.

 

“Morgellons” is the name Mary Leitao chose for what she considered to be a mysterious new illness afflicting her son. Doctors told her it was just eczema, and that the fibers she found on his lip were just lint. But she was determined it must be a novel new disease that she personally had discovered, so she set up a foundation to publicise it. Eventually, via the internet, other people join her organization, the list of symptoms constituting “Morgellons” is expanded to include these new people. Eventually the list of symptoms becomes very broad, and encompasses just about any medical condition. Doctors reject “Morgellons”, since the symptoms are explained by other diseases, and are too varied and vague to constitute a working definition of a new disease.

But the “Foundation” continues on its mission of “raising awareness” of “this disease”. With lots of hard work they get some press coverage, then some local TV coverage, and then eventually some major TV coverage. Each time the story is the same. Some patients are presented who are obviously ill. Their doctors have told them Morgellons is not a real disease, and the fibers are just lint or hair. Wymore says it is a real disease. The CDC is investigating. The end.

viz.png
As you can see here, Morgellons was a short-lived phenomenon. The local media coverage spurred interest which faded away. The CNN story spurred some interested, but was limited by the audience. Finally two huge spikes surround the networks morning shows and the “Primetime” special, then nothing, it tails off to zero after the next two months.

So what’s going on? Was Morgellons just a product of a media desperate for news during the silly season? The MRF supplied them with an interesting sounding story, and they ran with it? Then what happened? Where did Morgellons go?

People are still sick, that’s for sure. People are still going to the doctors with excoriations, and with itching, and with fatigue, and with baggies of fibers. That’s not going to stop. There are a variety of reasons for that, and those reasons are not going away.

But “Morgellons” has gone away. It was a label someone decided to put on a bunch of symptoms without any evidence to indicate that anything unusual was happening, and contrary to the opinions of the entire medical community. A few people publicised it very well for a period of time. The media ran the story, but now they’ve “done that”, and there will be no more stories.

Save the inevitable CDC report on “insufficient evidence”, the inexplicable advocacy of Professor Wymore, and the interminable and sad believer’s theories on Morgellons discussion boards, Morgellons is over.

Morgellons is over, but people are still sick. They are probably more sick now than when the MRF started their media campaign. By popularizing “Morgellons” as an actual disease, it gave validity to those who disagree with their doctors, self diagnosed, and chose inappropriate treatments. Morgellons is over, but the damage is done.

 

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.

 

Those who cannot remember the past are condemned to repeat it
- George Santayana, The Life of Reason

Have you seen it before? Or have you seen the same problem in a slightly different form?
- G. Pólya, How to Solve It.

 

Is Morgellons a real disease? Are over 5000 people affected by a common causative agent that causes fibers to appear in the skin, along with itching, lesions and symptoms that match those of Chronic Fatigue Syndrome or Fibromyalgia?

That seems like a difficult problem to answer. If you can’t immediately answer it, then take the advice of Polya, and ask “have you seen the same problem in a slightly different form?”.

And yes, we have. Right in the question actually, we have Chronic Fatigue Syndrome, and Fibromyalgia. Two syndromes with a long list of symptoms, nothing detectably wrong with the patient, and contested causation. Is Morgellons simply CFS with itching and scratching?

But let’s take Polya’s advice and then add in some Santayana. Has the same problem arisen in the past? It sounds like we would need to look at the history of medicine. Have there been cases where thousands of people though they had a specific novel illness, but that illness turned out to be nothing new?

First let me pause for a second to say, again, that I think people are really sick. They have real symptoms, they may have a variety of problems, they need treatments. What is under debate here is if people all have the same illness, and if “Morgellons” is a new disease.

Back to the past. Morgellons is a complex subject, but the prevailing theory is that there is a degree of psychosomatic illnesses mixed in with real illnesses, and greatly compounded by mass hysteria, fed mostly by the media coverage during 2006.

To understand how this might be the case, we need to look at similar events in history. There are a lot of them, and I cannot do justice to them all, but others have done the work for me, so I shall give you pointers, if you are interested.

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,’” Shorter said.

According to Shorter, mass hysteria has taken many forms:

UTERUS AILMENT: The word hysteria is derived from Greek, meaning “wandering of the uterus.” In the 19th century, many people thought a malfunctioning uterus led to any number of symptoms, including pain, paralysis or amnesia. Sigmund Freud and other early psychologists considered these symptoms psychological.

TEETH: At the beginning of the 20th century, there was a vogue for pulling out all of one’s teeth, “on the grounds that you could be suffering from autointoxication, from infected root canals.”

COLON: Around the time of the first World War, there was a trend of removing much of the large colon “on the grounds that your feces were leaking out of your colon and poisoning the rest of your body.”

http://www.stayfreemagazine.org/archives/21/edward_shorter.html

In the early 1800s, for example, doctors talked about “spinal irritation,” believing that when a certain point along the spine was pressed or hurt, it created peripheral pains and other motor (muscular) system problems. Consequently, doctors increasingly began seeing patients whose problems conveniently fitted the diagnosis. These patients–usually women–complained of temporary blindness, paralysis, and other ills. Some couldn’t walk, others couldn’t move their arms, many remained paralyzed for months in bed. Doctors would come across patients so catatonic that it was impossible to tell whether they were alive. Unable to detect pulses or respiration, doctors found that the only sure sign of death was when the body emitted a “cadaverous smell.”

Some of these patients no doubt had undiagnosed organic diseases. But Shorter convincingly argues that the majority of cases were psychosomatic.

It’s a funny thing: by the early 1900s, these symptoms had virtually disappeared. Medicine had started to shift away from the spine to the brain. Also, the social position of women improved. Whereas Victorian era mores had rendered women immobile–unable to have careers or lives of their own–psychogenic paralyses were, Shorter contends, “a metaphorical way for women to convey their dysphoria.” Once women won greater freedom, these kinds of symptoms became obsolete.

Psychosomatic symptoms didn’t disappear, however — they simply changed with the times. In case after case, from somnabulism to neurasthenia to “Yuppie flu,” we see how medical and cultural trends alternately reinforce and erode particular psychosomatic symptoms. Shorter argues that this is because patients don’t want to be seen as crazy and they therefore unconsciously or semiconsciously exhibit the “right” symptoms.

Hystories, by Elaine Showalter, Columbia University Press, is a good book on the subject:

Mass Hysteria has been around for centuries. In Extraordinary Popular delusions and the Madness of Crowds (1841), Charles Mackay, a London journalist, described what he called “moral epidemics,” including tulipomania and witchcraft. One hundred fifty years later, Mackay’s book still has relevance. As Simon Wessely, a senior lecturer in pyschological medicine at Kings College School of Medicine in London, explains, “All that has changed is the precise nature for false explanation. In previous times mass hysteria would be blamed on demons, spiritism and diabolic possessions. Nowadays we are oppressed by equally invisible gases, viruses and toxins

A quote within the above mentioned Extraordinary Popular delusions and the Madness of Crowds is of twisted relevance. Back in the late 1700s, the use of microscopes was causing problems:

Oh that I had remained in that happy state of ignorance wherein you first found me! Yet will I confess that, as my knowledge increased, so did my pleasure, until I beheld the last wonders of the microscope; from that moment I have been tormented by doubt and perplexed by mystery: my mind, overwhelmed by chaotic confusion, knows not where to rest, nor how to extricate itself from such a maze. I am miserable, and must continue to be so, until I enter on another stage of existence.

Does that remind you of anyone?

Morgellons is nothing new. Similar diseases, plagues and demonic possessions have sprung up and spread through the populace since the start of human history. If it follows the path of history, Morgellons will fade away (like Epstein-Barr flavored CFS), and be replaced by something new. You can’t stop it, but we can at least be aware that these things happen, and we can try to mitigate their ill effects by providing some perspective.

© 2012 Morgellons Watch Suffusion theme by Sayontan Sinha