Morgellons

In 2002 Mary Leitao took the word for a condition she believed her two-year-old son had. He had developed sores under his lip and complained of bugs; examining them with his toy microscope, she reported finding red, blue, black and white fibres. She had taken him to at least eight doctors who found no disease or allergy.

What the doctors who examined Leitao's son found

Fred Heldrich, a Johns Hopkins paediatrician with a reputation for solving mystery cases, examined the boy and found nothing abnormal about his skin. He wrote to the referring physician that Leitao would benefit from psychiatric evaluation and support, and recorded a concern about her use of her son.

An unnamed Johns Hopkins infectious disease specialist declined to see the child after reviewing his records, suggesting that Leitao might have Munchausen syndrome by proxy. Leitao's own account confirms the pattern: she described growing accustomed to being doubted, and said doctors told her they were not interested in seeing him because she had that syndrome.

Those are hard sentences and they are in the record. This entry states them because a catalogue that reports what the sources hold cannot report only the comfortable half.

How the Morgellons Research Foundation reached the CDC

Leitao began the Morgellons Research Foundation informally in 2002 and registered it as a non-profit in 2004. She has said she initially hoped scientists or physicians would contact her with an explanation. Instead thousands of other people wrote describing sores and fibres, along with neurological symptoms, fatigue and muscle and joint pain.

The Foundation claimed self-identified reports from all fifty United States and fifteen other countries, and contact from more than twelve thousand families. It coordinated a mailing campaign that sent thousands of form letters to a task force at the Centers for Disease Control and Prevention, which first met in June 2006.

That is the mechanism worth noting: a condition that entered federal investigation through a letter-writing campaign rather than through a clinical finding.

What the CDC found when it investigated Morgellons

Twelve people ended up on the task force:

• two pathologists and a toxicologist
• an ethicist and a mental health specialist
• specialists covering infectious, parasitic, environmental and chronic disease

The CDC opened its investigation in November 2007, working with Kaiser Permanente in Northern California, the United States Armed Forces Institute of Pathology and the American Academy of Dermatology.

The results were published in January 2012. No parasites and no mycobacteria were detected in any sample, and most material collected from participants' skin was cellulose, most likely cotton. The participants themselves were characterised as follows:

• fifty-nine per cent showed cognitive deficits
• sixty-three per cent had evidence of clinically significant symptoms
• fifty per cent had drugs in their systems
• seventy-eight per cent reported exposure to solvents, which are potential skin irritants

The conclusion was that the condition is similar to more commonly recognised conditions such as delusional infestation.

Where medical consensus places Morgellons

Morgellons is described as a form of delusional parasitosis, with the distinguishing feature that the person believes inanimate objects are present in their skin lesions rather than living organisms. The sores are typically produced by compulsive scratching, and the fibres, when analysed, are consistently found to originate from cotton and other textiles.

An active online community disputes that account, holds the condition to be infectious, and proposes an association with Lyme disease. Publications reporting spirochetes, keratin and collagen in skin samples from small numbers of patients come, in the material's own phrasing, largely from a single group of investigators, and are contradicted by the much larger CDC work.

The case for it as a new disease reached a scientific journal in 2006, in the American Journal of Clinical Dermatology, in a review whose co-authors included people from the Foundation. A San Francisco Chronicle article the same year reported that there had been no clinical studies of it.

How Morgellons spread through television and newspapers

May 2006 brought a CBS segment in Southern California, and the Los Angeles County Department of Health Services issued a statement the same day: no credible medical or public health association had verified the existence or diagnosis of the condition, and there was no reason to panic over unsubstantiated reports. Segments on CNN, Good Morning America and The Today Show followed in June and July, and ABC's Medical Mysteries in August.

ABC's Nightline covered it on 16 January 2008 and it was the cover story of The Washington Post on 20 January 2008. Joni Mitchell said she had the condition in the Los Angeles Times on 22 April 2010. Australian Broadcasting Corporation radio covered it on 13 June 2011 with the Mayo Clinic professor Mark Davis among the guests.

The Morgellons Research Foundation closed in 2012 and directed future enquiries to Oklahoma State University.

What about Morgellons is not in dispute

The sores are real. The itching is real. The distress of people who have spent years being disbelieved is real, and so is the harm of scratching. What the analysis has consistently not found is anything in the fibres other than the textiles they came from.