Morgellons is claimed to be a new form of skin disease by its sufferers but has been largely ignored by the medical community and some have claimed it is, in reality, a psychotic syndrome akin to delusional parasitosis.
Outraged by the accusation that their symptoms may be a result of mental illness, proponents are producing fibrous outgrowths from their troubling skin lesions as evidence of its reality.
Although previously just a fringe concern, in the last few weeks Morgellons has gained a huge amount of publicity, with TV reports, magazine articles, newspaper stories and posts on some of the internet’s most popular sites.
Nevertheless, Morgellons challenges more than just the ability of the medical community to make sense of physical symptoms, and is a classic example of a syndrome on the borderlands of medicine.
The only peer-reviewed article on Morgellons indexed by PubMed, the international database of medical research, was published this January in the American Journal of Clinical Dermatology. It defines the condition as “characterized by fiber-like strands extruding from the skin in conjunction with various dermatologic and neuropsychiatric symptoms” and goes on to describe a coherent theory, but no conclusive evidence, for its existence as a genuine skin condition.
The paper was co-authored by biologist Mary Leitao (left) and funded by the Morgellons Research Foundation, an organisation Leitao founded after she became concerned about a rash on her son that seemed to contain fibres, subsequently dismissed by the doctors she consulted.
In contrast, after concerns about the disease were first widely broadcast in the media, Duval County Health Department investigated a series of cases and concluded in their report that those reporting Morgellons in fact suffered from delusional parasitosis, a form of limited psychosis diagnosed as a subtype of delusional disorder.
Interestingly, the fact that self-reported Morgellons is associated with mental illness is not in dispute. Both sides of the debate find evidence that sufferers have significant levels of psychological, and sometimes, neurological disorder.
What is at stake is cause. The debate is over whether pre-existing mental disorder is leading people to believe that they have been infested with parasites, or whether these parasites cause so much distress as to cause a mental or neurological disorder.
However, the medical community has many reasons to doubt the existence of Morgellons as a new form of previously undetected parasite or infection.
The first is that medicine is very good at detecting specific pathogens – infectious organisms that cause disease or illness. They can be measured, quantified, analysed and give a definite indication whether the person has the disease or not.
Mad cow disease, and its human equivalent, is a classic example of this. Cases of the disease were relatively rare, produced non-specific neurological symptoms, and turned out to be caused by prions, a form of infectious protein virtually unknown until a few years before. Despite these hurdles, the disease was recognised and quantified very quickly.
Further Morgellons research is underway, however. Randy Wymore, a professor of Pharmacology and Physiology at Oklahoma State University, might yet find a conclusive pathogen for Morgellons, but the fact that no widely accepted findings have been forthcoming, especially from something that supposedly produces such visible symptoms is bound to cause suspicions about a psychological cause for the disorder.
Secondly, the symptoms of Morgellons are indeed consistent with delusional parasitosis, even down to finding fibres in the skin.
Producing dubious evidence of the supposed infection is so common in delusional parasitosis as to be used one indication of the diagnosis (known as the ‘matchbox sign’ as people often bring such fragments in small containers such as matchboxes).
Psychiatrist Alistair Munro, author of one of the only books to specifically address delusional disorder, notes that patients with delusional parasitosis may dig into their flesh and retrieve small fibres – most likely to be the ends of peripheral nerves that form a network under the surface of the skin.
Other fibres such as trapped hairs, or even keratin, a fibrous protein recently found to be a component of normal human skin, might be found by those examining skin lesions in detail and used as evidence for a Morgellons-like infection.
Indeed, some people claiming to have Morgellons produce such a wide range of fibres as evidence that it is hard to believe that they could all come from a single infectious disease, especially when the majority resemble man-made fibres (right) and human tissue.
However, there is an important discrepancy between the delusional explanation preferred by the medical profession and the presentation of people who claim to be affected by the condition.
Delusions are defined as false, fixed beliefs, not held by members of the person’s culture or subculture. Although online subcultures of psychotic individuals are not unknown, the fact that there is a well-organised Morgellons community, and that cases seem to peak with media interest, suggests that not everyone who believes they have Morgellons is frankly psychotic. Of course, there may be sufferers who are, but cases of people who have delusions of HIV infection do not causes HIV doctors to doubt their diagnoses.
Morgellons seems to be a disorder on the borderlands of medicine – what is being increasingly called a ‘medically unexplained symptom’. Here, the interplay between belief and the body is thought to be key, as the mind has long been known to produce genuine physical symptoms, a process known as somatisation.
At the time of writing, exactly such a disorder is sweeping Portugal. Large numbers of school children are reporting physical symptoms of a mysterious condition. Curiously, the symptoms mirror those suffered by characters in a recent edition of a soap opera, where a life-threatening virus caused an outbreak in a school.
This is not an unknown situation, and has been extensively studied by sociologist Robert Bartholomew who has reported on numerous occasions where physical symptoms spread through populations, only to disappear without trace when the social concern subsides.
Sometimes this can take quite a dramatic form, famously with koro, where sufferers believe they are afflicted with a life-threatening disorder which causes the penis to shrink into the body.
Often, the interaction between belief and symptoms is far more mundane and relatively commonplace. A recent study estimated that about 50% of consultations to hospital outpatients departments have no associated disease. One difficulty with such problems is that doctors have traditionally dismissed them as ‘all in the mind’ – implying that they are no concern to busy physicians.
More recently, however, there has been an acceptance that belief plays an essential role in the course of illness, whether they have been traditionally classified as ‘physical’ or ‘mental’ disorders.
The famous distinction between mind and body is seeming increasingly redundant, and disease-related disability is now being widely-treated with psychological therapies as well as physical medicine.
The beliefs at work are not just those of the patient, however, and the conclusions and thoughts of the people around them, including medical professionals are also known to influence how symptoms progress.
The common belief that ‘symptoms must have a definite physical cause’ is one of the strongest of such beliefs, and is often played on by drug companies aiming to market seemingly simple fixes for simple causes. The virtually evidence-free claim that depression is ’caused’ by low-serotonin in the brain, is one of the most notorious examples.
The fact that the array of symptoms attributed to Morgellons could be caused by a range of factors which could differ between individuals, such as media-inspired worry, other skin conditions, psychosis, and yes, even a new form of parasite (however unlikely), seems counter-intuitive to those holding the belief that ‘symptoms must have a definite physical cause’.
Until science finds otherwise, Morgellons seems to be an example of this process at work. Only believers seem to find conclusive evidence of it as a physical infestation. Of course, this makes it no less disturbing to those who suffer from it, but leaves medicine at a loss of how best to help those distressed by their self-reported condition.