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What is Morgellons disease, the mysterious and controversial condition Joni Mitchell claims she has?

What is Morgellons disease, the mysterious and controversial condition Joni Mitchell claims she has?

Joni Mitchell made her first-ever Grammys performance at the 2024 Grammy Awards on Sunday 4 February. The Canadian singer-songwriter, 80, has made only a handful of live performances after she suffered a brain aneurysm in 2015.

Following her hospitalisation in 2015, much attention was placed on Mitchell’s rare condition – which she has spoken candidly about in the past – known as Morgellons disease. The little-known skin condition is characterised by patients as having biting and stinging sensations under the skin. However, the controversial condition has raised eyebrows among the medical community, many of who believe that its symptoms are caused by a psychiatric disorder.

In 2010, Mitchell described her Morgellons disease symptoms in an interview with the Los Angeles Times. Mitchell described seeing “fibres in a variety of colours protrude out of my skin like mushrooms after a rainstorm: they cannot be forensically identified as animal, vegetable or mineral” and suggested the illness was “as if it’s from outer space”.

According to the Mayo Clinic, the few thousand people who have reported suffering from Morgellons disease characterised their symptoms as skin rashes or sores that can cause intense itching; crawling sensations on and under the skin, often compared to insects moving, stinging, or biting; and a belief that fibres, threads, or black stringy material is in and on the skin.

“I couldn’t wear clothing. I couldn’t leave my house for several years,” Mitchell wrote of her symptoms in her 2014 memoir, Joni Mitchell: In Her Own Words. “Sometimes it got so I’d have to crawl across the floor. My legs would cramp up, just like a polio spasm. It hit all of the places where I had polio,” said Mitchell, who was struck with polio at age nine.

Morgellons disease is believed to have been named in 2002 by Mary Leitao, who rejected a doctor’s verdict that her two-year-old son was suffering from delusions after he’d begun to develop lesions on the inside of his lip. She discovered the term “moregellons” in a letter by physician Sir Thomas Browne, who noted a similar illness in 17th-century French children.

However, there is limited research on Morgellons disease and studies that have been done have yielded conflicting results. In 2012, the Centres for Disease Control and Prevention (CDC) published one of the largest studies on Morgellons disease. The CDC analysed 115 people with self-reported Morgellons symptoms between 2006 and 2008. Of this population-based study, the majority of people reporting to have Morgellons were white women in their early to mid-50s.

The results showed that most of the fibres in the skin sores could be explained by repeated itching. Researchers also found some fibre samples were from cellulose, which is a component of cotton fibres found in clothing, while dyes were detected in some samples as well.

Ultimately, the study found “no common underlying medical condition or infectious source was identified, similar to more commonly recognised conditions such as delusional infestation”.

A subsequent case study was conducted in 2011 by the Mayo Clinic, in which researchers analysed 108 patients who believed their inflamed, itchy skin was the result of a bug infestation. The study concluded that the sores on many patients were caused by their scratching and picking at their skin. In a 2016 study, researchers collected fibres from a person with self-reported Morgellons disease and compared those with fibres collected around their apartment, such as human hair, pet hair, or plastic fibres. The study found that fibres in the Morgellons disease lesions were actually from the environment and not the body.

Meanwhile, a smaller study in 2017 analysed 35 Morgellons disease patients at the Royal London Hospital in the United Kingdom. Researchers discovered that participants exhibited common psychological conditions, with 48.2 per cent and 25.7 per cent having depression or anxiety, respectively. Current or past substance misuse was also reported in 14 per cent of participants. When a treatment plan focusing on both treating the skin lesions as well as addressing mental health was put in place, 40 per cent of participants showed significant improvement.

Due to the lack of understanding surrounding Morgellons disease, effective treatment options are still unknown. Nevertheless, sufferers have found support in groups such as the Morgellons Research Foundation. In a 2013 interview with The Star, Mitchell revealed she’s mitigated her Morgellons disease symptoms with the help of a physician, and addressed controversy surrounding the condition.

“I haven’t been doing much lately because I’ve just come through about seven years of a flattening kind of illness,” she said at the time. “I’m not cured but I’ve found a helpful physician way outside the box. Western medicine says this doesn’t even exist, it’s a psychotic disease. It’s not.”

The “Case of You” singer took to the stage during the 66th annual Grammy Awards to perform her 1966 song “Both Sides Now”. For the occasion, she wore a black velvet outfit embroidered with celestial motifs, and brought multiple attendees and viewers to tears with her moving performance.

You can find all of the 2024 Grammy winners here.