STEVE JACKSON* wants to know what is going on in his body. For years he has been finding tiny blue, red and black fibres growing in intensely itchy lesions on his skin. 鈥淭he fibres are like pliable plastic and can be several millimetres long,鈥 says Jackson, an officer in the British army. 鈥淯nder the skin, some are folded in a zig-zag pattern. These can be as fine as spider silk, yet strong enough to distend the skin when you pull them, as if you were pulling on a hair.鈥
Jackson is one of thousands across the US, Europe and Australia who are reporting similar symptoms. 鈥淚鈥檝e had lesions containing black fibres all over my arms, legs, ears and face, with itching, crawling sensations,鈥 says Pamela Winkler from Maryland. 鈥淚t feels like something is biting you everywhere.鈥
The biting, crawling sensations and itchy fibres make sufferers suspect that a parasite is involved. Yet anti-parasitic medications don鈥檛 seem to have any effect. 鈥淚鈥檝e spent a fortune on dermatological creams but nothing worked,鈥 says Julia Ormerod from Devon, UK. Ormerod has had her house checked for infestation, hoping to find the cause of the lesions and the itchy, pepper-like black specks that she keeps finding on her skin. Nothing was discovered.
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Fibres are only part of the problem. Sufferers are also affected by chronic muscle and joint pain, severe fatigue and cognitive problems. 鈥淚 walk into rooms and suddenly forget what I鈥檓 doing there,鈥 says Sarah Jones* from Somerset, UK. 鈥淢y words get jumbled when I talk.鈥 As the condition progresses, paranoia and depression become common, in some cases leading to suicidal tendencies.
Ask Jackson, Winkler or many others with similar symptoms what is wrong with them and they will tell you that they have something called 鈥淢orgellons disease鈥 (pronounced with a hard 鈥済鈥). Yet mainstream doctors recognise no such condition and say that Morgellons is just a new and unhelpful name for a well-known psychiatric illness. Research into the condition, meanwhile, routinely produces more questions than answers, and now the US Centres for Disease Control, based in Atlanta, Georgia, has stepped in to sort out the mess. What is going on?
The Morgellons mystery was sparked back in 2001 when Mary Leitao of Pittsburgh, Pennsylvania, suspected that her 2-year-old son Drew had scabies. After treating him with a cream she found tiny bundles of fibres emerging from his skin. She contacted doctors but felt that none took her seriously. 鈥淪everal physicians concluded that the fibres were coming from either my son鈥檚 clothes, or my clothes,鈥 she says. After searching for information, she found a monograph by the 17th-century author Thomas Browne describing 鈥, a long-forgotten illness characterised by black hairs protruding from the skin. She appropriated the name and set up a non-profit organisation, the (MRF), in the hope of attracting advice or help from scientists. To her surprise, she began receiving thousands of emails from people claiming to have the same thing. To date, more than 10,000 families have registered on the site.
Yet on presenting typical Morgellons symptoms to doctors and dermatologists, people consistently find themselves being told that it is all in their heads. Rather than suffering from a mysterious infection or parasite, doctors say they have a well-documented psychological disorder called delusional parasitosis (DP).
DP is characterised by an unshakeable belief that sensations of itching and crawling on or under the skin are caused by parasites such as lice, fleas or worms 鈥 even in the face of incontrovertible evidence to the contrary. The condition usually occurs in people with other psychiatric conditions such as bipolar disorder, paranoia or schizophrenia, and in cocaine and amphetamine abusers.
Matchbox sign
鈥淚 was told that the sensations were being caused by my nervous system,鈥 says Ormerod. 鈥淒ermatologists took a small biopsy of my skin but said they didn鈥檛 find anything. They just told me to stop scratching myself and the itching would go away. It didn鈥檛.鈥 Jones鈥檚 appointments with doctors similarly came to nothing. 鈥淭hey sent fibre samples to a lab for testing. All they would tell me was that nothing abnormal had been found.鈥
What doesn鈥檛 help is that Morgellons patients often develop psychological symptoms such as depression and paranoia 鈥 hallmarks of DP. They also have a tendency to bring in small containers of fibres to their doctor as evidence of a parasitic infestation. This, too, is a classic symptom of DP, known as the 鈥渕atchbox sign鈥. 鈥淲hen you look at them, the [DP patients鈥橾 samples inevitably turn out to be skin, lint, scabs, or household debris or fibres,鈥 says Lynn Kimsey, director of the Center for Biosystematics at the University of California, Davis.
Most experts have little doubt that Morgellons is actually DP. 鈥淐laiming Morgellons disease is a case of people making a connection where there isn鈥檛 one,鈥 says Kimsey. 鈥淭hey are advocating some unknown disease, but these are the same kind of symptoms that we see with DP sufferers.鈥
And the lesions? Likely to be self-inflicted, says Jennifer Biglow, a dermatologist at Skin Specialists, a private clinic in Minneapolis, Minnesota. Many DP patients, says Biglow, are neurotic excoriators, creating the lesions themselves because of a constant need to pick and scratch at their skin. 鈥淲hen they pick, they get temporary emotional relief,鈥 Biglow says. The broken skin attracts household fibres, and exposes bundles of collagen and elastin from under the skin. To someone with DP, any of these can easily take the appearance of a parasite.
鈥淭o my knowledge there is no evidence presented so far that convinces me that Morgellons patients are infected with any organism known to western science or related to anything or any parasite we currently know,鈥 says Noah Craft, a dermatologist at the University of California, Los Angeles.
Spurious cases
Some experts are even concerned that the Morgellons Research Foundation and its made-up disease are having a negative effect on public health. 鈥淚ndividuals with DP are very sick psychologically and badly need help,鈥 Biglow says. 鈥淲hen they read about Morgellons disease they get emotional comfort and temporarily feel better about themselves.鈥 The result, says Biglow, is that many DP cases are missing out on the treatment that could really help them: antipsychotic drugs.
Others worry that they will be inundated with spurious cases. 鈥淎s more and more of our patients discover [the MRF website], there will be an ever greater waste of valuable time and resources on fruitless research into fibres, fluffs, irrelevant bacteria and innocuous worms and insects,鈥 wrote Caroline Koblenzer of the University of Pennsylvania in Philadelphia in a stinging commentary in the Journal of the American Academy of Dermatology ().
Mystery solved? Not according to the handful of researchers who believe the DP explanation for Morgellons leaves too many questions unanswered. Randy Wymore, a pharmacologist at Oklahoma State University (OSU) in Tulsa, is one of them. About two years ago, Wymore chanced upon the MRF and was struck by how many people claimed to have the fibres. 鈥淚 thought it would be easy to determine whether the fibres were real or not, and what they were.鈥
Wymore contacted MRF to say that he would be willing to examine some samples, but secretly expected none to arrive. 鈥淲hen you ask a DP patient to show you physical evidence of fibres they commonly make excuses such as: 鈥極nly someone who has it can see them,鈥 or: 鈥業f I post them to you they will disappear in the mail.'鈥
Within days, however, samples were pouring in. What surprised Wymore was that, under the microscope, fibres from different people looked remarkably similar to each other and yet seemed to match no common environmental fibres.
Wymore asked his colleague Rhonda Casey, a paediatrician, to examine some patients. Using a dermatoscope 鈥 a microscope used for examining skin 鈥 Casey clearly saw fibres. These were not just embedded in lesions but were also visible under the surface of unbroken skin and could be removed with tweezers. She observed nothing like them in a control group comprising both healthy patients and those with other dermatological conditions. Wymore and Casey are now working on a case study to submit to a peer-reviewed publication.
They also took samples to the Tulsa police forensic science team. On first inspection, the forensics experts agreed that the fibres were not from clothing, carpets, towels or bedding. Using spectroscopy they were unable to match the fibres to any of the 880 compounds commonly used in manufacturing commercial fibres. Dye-extracting solvents released no colouration.
Finally, they tried gas chromatography, gradually heating the fibres to around 370 掳C and recording which compounds vaporised off. Save for giving off a small amount of carbon dioxide, however, the fibres remained intact. 鈥淎ny organic material should normally be vaporised and the inorganic components reduced to ash by the time you get to the top temperature,鈥 Wymore says. 鈥淏ut all that happened was that the fibres darkened. We were shocked, and the forensics team were completely blown away.鈥 The team say they will submit their findings to a journal once they have an idea of what the fibres are, rather than what they are not.
One researcher who believes he already knows is Ahmed Kilani, director of Clongen Laboratories, a private research organisation in Germantown, Maryland. Kilani says that he managed to break down two fibre samples sent to him by a Morgellons sufferer using protein-digesting enzymes and extracted DNA from them. When he sequenced the DNA, he found that it belonged to a fungus. This makes sense, Kilani says: many fungi embed a root in their host and send out long filaments called hyphae. 鈥淭his is what the fibres could be,鈥 he says. Clongen has not charged the patient for its services and now plans to apply for a government grant to carry on the work.
However, at Stony Brook University, part of the State University of New York, biochemist Vitaly Citovsky has another idea. He found that Morgellons lesions contain Agrobacterium, a genus of bacterium that causes tumours in plants. Control groups test negative. In 2001, when he knew nothing of Morgellons, Citovsky discovered that Agrobacterium, which is used commercially to produce genetically modified plants, is 鈥 under laboratory conditions, at least 鈥 able to insert its DNA into human cells. This is the only recorded example of trans-kingdom DNA transfer ().
Could Agrobacterium be causing a new human disease? 鈥淲e don鈥檛 yet know,鈥 Citovsky says. 鈥Agrobacterium could just sit there in a lesion, like an opportunistic infection. Or it could genetically transform the host, as it does in nature with plants. The next stage will be to infect mice with Agrobacterium and see if we can recreate the disease.鈥
Meanwhile, Robert Bransfield, associate director of psychiatry at Riverview Medical Center in Red Bank, New Jersey, has tried treating Morgellons patients with antibiotics and has seen significant dermatological and psychiatric improvements. 鈥淚f it was placebo, anything you gave them would help. But only certain antibiotics work.鈥
It鈥檚 not just the identity of the fibres and the possible infectious agent that is attracting attention. A handful of psychiatrists are also starting to question the assumption that Morgellons is simply DP in disguise. 鈥淏efore the onset of their illness, these patients鈥 mental status appeared to be quite representative of the general population,鈥 says Bransfield, who has reviewed MRF鈥檚 database of 3000 patients. 鈥淢any are high-functioning professionals. Their symptoms are not compatible with substance abuse or other recognised causes of delusions. What confuses it is that in the later stages, some Morgellons patients do become paranoid and delusional. But it doesn鈥檛 start out that way.鈥
There鈥檚 also the question of Leitao鈥檚 son. Is it possible for a 2-year-old to suffer from DP? 鈥淪ince entering medical school in 1968, I don鈥檛 recall seeing a single case I would diagnose as delusional parasitosis in a child,鈥 says Bransfield. Even Biglow is doubtful. 鈥淚n my opinion a child of two years of age would be too young to suffer from DP,鈥 she concedes, though she points out that parents with DP can believe their children are infested.
Bransfield also has a hypothesis for the cause of the mental symptoms: they are caused by the body鈥檚 reaction to a real parasite. The process is triggered when a parasite invades a host and the host鈥檚 innate immune system unleashes an inflammatory response, mediated in part by protein messengers called cytokines. Cytokines also produce symptoms in the host. 鈥淭he fever, aches, pains and fatigue that you feel when you have influenza are not a direct result of the virus,鈥 says Bill Harvey, a doctor based in Colorado who has seen about 75 patients claiming to have Morgellons. 鈥淭hey are generated by your cytokines defending you.鈥
In the short term the reaction works fine, but if an infection persists, the continuing action of cytokines can have a 鈥渇riendly fire鈥 effect on the nervous system, resulting in psychological illness. In some diseases, including hepatitis C and Lyme disease, the body鈥檚 reaction to infection is known to produce mental illness. Could Morgellons be the same?
It鈥檚 hard to say. Most of the ideas and research have yet to be formally published, leaving believers and sceptics to slug it out on websites such as and Wikipedia. Where Morgellons does appear in the peer-reviewed literature it is mostly as an awarness-raising exercise from one side or the other. Last year Leitao herself, in collaboration with two sympathetic medics, published a paper describing the condition ().
Formal investigation
As the research process grinds into gear, more and more people are coming forward. Wymore, who recently set up the at OSU, gets more than 70 emails per day from people asking for help or information. 鈥淚 can鈥檛 even answer my office phone any more 鈥 there are too many Morgellons calls,鈥 he says. 鈥淥ne guy drove 1600 kilometres from California just to ask me to examine his fibres.鈥
鈥淥ne guy drove 1600 kilometres just to ask me to examine his fibres鈥
The ever-increasing number of people clamouring for answers, coupled with requests by doctors for help in dealing with this condition, has led the US Centers for Disease Control to announce last month that it will launch a of the condition. If nothing else, this will increase the amount of research into Morgellons. It may even produce some answers.
Bransfield predicts that the medical establishment will soon come to view Morgellons as a genuine disease. 鈥淲henever a disease is unknown, it is often considered delusional. It is only when you have a clear, solid explanation that people recognise the physical basis to it. You see this with any emerging disease throughout history.鈥
In the meantime, many sufferers just wait and hope. 鈥淚鈥檝e taken it as far as I can with doctors,鈥 says Jones. 鈥淣one of them want to know. They just look at you as if you are off your trolley.鈥
*These names have been changed
