People who think they have “Morgellons” have usually self-diagnosed. There is no diagnostic criteria for Morgellons, and the case definition is overly broad, allowing anyone with general malaise to claim some of the many symptoms. But the people who end up convincing themselves of their Morgellons are generally people who have rejected their doctors diagnoses, and turn to “alternative” medicine. Given the mental issues that often accompany a self-diagnosis of Morgellons, it is not surprising that these people have become an easy target for many forms of quackery.
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Science
OCD and Morgellons
From Psychiatric News March 16, 2007, Volume 42, Number 6, page 18:
http://pn.psychiatryonline.org/cgi/content/full/42/6/18
OCD Patients May Seek Help From Dermatologists
A substantial percentage of patients who show up in dermatologists’ offices have skin conditions that arise from obsessive-compulsive disorder, highlighting the need for dermatologists and psychiatrists to forge closer collaborations.
[…]
Some people who scratch and pick their skin excessively have delusions of infestation by parasites. Specimens brought to the dermatologist, Kestenbaum said, often prove to be lint from clothing or ordinary sloughed off skin cells.Self-diagnosed Morgellons disease is a relatively new phenomenon in the dermatologist’s office, she said, fueled by media reports and the Internet. People who believe they have this disorder commonly report crawling, stinging, and biting sensations. Some claim that fibers emerge from intact skin (Psychiatric News, December 15, 2006).
While all symptoms demand a careful workup, Kestenbaum said, “patients with such complaints whom I have seen appeared to have a delusional parasitosis.”
Meanwhile, a multidisciplinary task force at the Centers for Disease Control and Prevention (CDC) is developing an instrument to investigate the symptoms these patients present. “There is no credible evidence at present to implicate any pathogen in Morgellons disease,” CDC spokes-person Dan Rutz told Psychiatric News. Several different mechanisms may account for patients’ distress, he said.
Writing in the November 2006 Journal of the American Academy of Dermatology, Philadelphia dermatologist/psychoanalyst Caroline Koblenzer, M.D., suggested that “Morgellons syndrome” may be a more apt name for this symptom complex than “Morgellons disease.”
So, it seems that the term “Morgellons” may in fact eventually enter the official medical lexicon, but meaning different things to doctors and patients. A “rapport enhancing term” for a complex of symptoms that includes a degree of mistaken belief in some parasite or pathogen.
It seems unlikely the CDC wil report before 2008. But in the meantime, the above article (read the whole article), is probably the most accurate reflection of the medical establishment’s position on “Morgellons”
Windshields and Morgellons
People are ill, people have various real physical symptoms, and people are not all getting cured. Nobody denies this. Nobody is suggestion that people are “imagining” sores or “imagining” pain. The symptoms are real.
But, the fundamental question is: can the symptoms be explained by existing conditions, or is there evidence of a new disease, called “Morgellons”?
If you have a car, you will at some point in your life get a ding in your windshield. Suppose thousands of people got these dings, is this evidence of anything? It’s possible to believe so:
http://www.historylink.org/essays/output.cfm?file_id=5136
On April 15, 1954, Bellingham, Seattle and other Washington communities are in the grip of a strange phenomenon — tiny holes, pits, and dings have seemingly appeared in the windshields of cars at an unprecedented rate. Initially thought to be the work of vandals, the pitting rate grows so quickly that panicked residents soon suspect everything from cosmic rays to sand-flea eggs to fallout from H-bomb tests. By the next day, pleas are sent to government officials asking for help in solving what would become known as the Seattle Windshield Pitting Epidemic.
Obviously windshield dings are real and nothing new. But what causes people to suddenly notice them, and believe that something new is happening? The article concludes:
The Seattle Windshield Pitting Epidemic of 1954 did indeed become a textbook example of collective delusion, sometimes mistakenly referred to as “mass hysteria.” To this day, sociologists and psychologists refer to the incident in their courses and writings alongside other similar events, such as Orson Welles’ Martian invasion panic of 1938, and supposed sightings of the “Jersey Devil” on the East Coast in 1909.
The Seattle pitting incident contains many key factors that play a part in collective delusion. These include ambiguity, the spread of rumors and false but plausible beliefs, mass media influence, recent geo-political events, and the reinforcement of false beliefs by authority figures (in this case, the police, military, and political figures).
This combination of factors, added to the simple fact that for the first time people actually looked “at” their windshields instead of “through” them, caused the hubbub. No vandals. No atomic fallout. No sand-fleas. No cosmic rays. No electronic oscillations. Just a bunch of window dings that were there from the start.
With Morgellons, people are sick for all the usual reasons. Then they look at their skin, and see the normal things you find on anyone’s skin, but because this is the first time they have closely examined their skin, they see specks and fibers. Then they self-diagnose with Morgellons. Sure, maybe Morgellons is a new distinct condition, but there is no more evidence to suggest this than there was evidence to suggest that H-bomb fallout was pitting windshields in Washington, back in 1954.
Clarification from Vitaly Citovsky
Professor Citovsky asked me to post the following note:
I would like to clarify the involvement of my research group in the Morgellons studies. We are biochemists and cell and molecular biologists who study fundamental and diverse biological processes, such as genetic transformation, intercellular transport, and chromatin remodeling, using plants as experimental systems. Because one of our model organisms, Agrobacterium, is capable of genetically transforming not only plants, but also other eukaryotic species, including human cells, we were contacted by Dr. Stricker and MRF to investigate potential presence of Agrobacterium in biopsies from Morgellons patients. A limited number of anonymous samples provided by Dr. Stricker were tested by PCR for the presence of different families of Agrobacterium genes. Control reactions included samples from healthy donors provided by us. Only Morgellons, but not healthy subjects tested positive in these studies. This observation does not imply that Agrobacterium causes Morgellons or that Morgellons is indeed an infectious disease. However, it does encourage future studies to determine (i) statistical significance of our data, (ii) whether or not Agrobacterium is not only present extracellularly, but also causes genetic transformation of the infected tissues, and (iii) whether or not infection of laboratory animals with Agrobacterium can recreate at least some symptoms of Morgellons. These are the immediate goals which may or may not be pursued, depending on the available research funding which is currently non-existent for Morgellons.
Vitaly Citovsky, Ph.D.
Professor of Biochemistry and Cell Biology
NPR Morgellons
This NPR piece just tells the story of Morgellons:
http://www.npr.org/templates/story/story.php?storyId=6685822
It’s reasonably well done. Of interest is that the CDC expects their investigation to “take six months and cost hundreds of thousands of dollars”. Which means you probably won’t be hearing anything from the CDC until sometime late 2007.
Still, it looks like the medical profession is forging ahead – again in the story is a mention of simply taking the name “Morgellons” and making it synonymous with Delusions of Parasitosis. Overall, I feel the discussions surrounding Morgellons will eventually lead to the development of better ways of treating people with DOP, as well as some investigation into various physical triggers for DOP/Morgellons.
Psychiatric News
A couple of interesting articles:
Strange List of Symptoms Perplexes Patients, Doctors
http://pn.psychiatryonline.org/cgi/content/full/41/24/19
Psychiatric Arsenal Has Weapons Against Morgellons Disease
http://pn.psychiatryonline.org/cgi/content/full/41/24/19-a
The latter puts to rest the belief that doctors always dismiss patients automatically as delusional without examining them:
Caroline Koblenzer, M.D. […] a clinical professor of dermatology at the University of Pennsylvania and a psychoanalyst, has treated dozens of delusional parasitosis patients over the years and several dozen morgellons patients during the past six months.
“We do biopsies, we do blood tests, all those things that would rule out the extrusion of any foreign material, whether it be living or nonliving.“If a patient came to me, I would make sure that he or she had an evaluation by a dermatologist to make sure that there wasn’t any.. .infestation by an organism,” Gerard Gallucci, M.D., said. ”
“I would recommend [doing] some testing to make sure that the patient does not have a skin infection,” said William Meehan, M.D., Ph.D., a University of Massachusetts psychiatry resident who co-wrote a paper about delusional parasitosis in the March Archives of Dermatology. “I would also want to rule out any other problem that might lead to a sensation of bugs crawling on the skin—for example.. .using cocaine or.. .certain endocrine problems, such as thyroid and liver disease.”
Imagination
“How can thousands be experiencing the same DOP at the same time? That does not make sense.”
That’s a good question, because it’s a point often used by people who believe they have “Morgellons” to “prove” that it’s real.
Dismissing things because they “don’t make sense”, is an “argument from a lack of imagination“, which is somewhat ironic, since the one thing that Morgies do not seem to lack is imagination. They believe in several things that do not make sense, but they believe them because they seem to fit their view of the world.
So, how can thousands of people have the same condition? Obviously that’s the wrong question right there, as nearly every medical condition has thousands of sufferers.
No, the question being proposed is “how can thousands of individuals have the EXACT SAME DELUSION”?
This question actually has two complementary answers. 1) Easily, and 2) They don’t.
Let’s be clear about the delusion. A delusion is fixed false belief, held contrary to the evidence. The Morgellons delusion is not that people have sores, which they obviously do. It is not the fibers themselves, as there are clearly fibers everywhere. It is not the itching, since itching is a subjective experience. No, the Morgellons delusion is that the fibers are somehow connected to the sores and itching.
(1) How can people share this same delusion? Easily. People itch for a lot of reasons, some scratch a bit too much, forming blisters and sores. Sores are wet and sticky, they get debris in them, people think the debris (fibers, dirt, etc) is what is causing the sores, so they try to pick them out. Later they hear of Morgellons, and think “that’s it!”
(2) How can people share this same delusion? They don’t. They all have different delusions. They all have different experiences with their symptoms. Their physical illnesses are varied. Their theories are varied. Even the fibers are different. Compare Anne Dill, Greg Vigil, Stan Skoumal, Andrew Leitao, Mister X, Ever Hopeful, Cindy Casey. There’s a lot of variety there. They don’t all have the same thing.
People are ill. People are genuinely ill. They deserve compassion and they deserve treatment. Some of them have a lot of imagination. I just wish they could use that imagination to try to imagine the possibility that they might have been mistaken in some of their beliefs, and imagine the possibility that their lives might be a little better if they let go of Morgellons.
CDC Latest
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.
Morgellons and Dermatologists
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.
Hystorical Context
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.