RR Phantom
Location : Wasted Space
Job/hobbies : Cayman Islands Actuary
 |  Subject: Idiots in science: officially, Morgellons disease doesn't exist, but thousands say it's horribly real  Sun Aug 02, 2015 12:02 am | |
| Freakish fibres looming from the skin, a crawling sensation, itching ... officially, Morgellons disease doesn't exist, but thousands of people say it's horribly real.
In the middle of an Adelaide day, the bedroom is dark, the curtains closed. Donna Staehr has removed her shirt and stands before me in a maroon singlet. Her skin is flecked with milky dots – scar tissue – and open pink sores. The 44-year-old former nurse assistant ties back her long black hair and picks up a digital microscope plugged into her computer. It looks like a tiny desk lamp and glows white in the dim light. As she puts the microscope to a lesion on her upper breast, it's like a moment of truth. Will it reveal the strange things she says are inside her?
Staehr says she has Morgellons, a rare disease that mainstream medicine claims is a delusion. Its most famous sufferer, legendary singer Joni Mitchell, 71, described it in 2010 to The Los Angeles Times as a "weird, incurable disease that seems like it's from outer space". Mitchell, who collapsed from a brain aneurysm in March, said: "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."
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.
Staehr moves the microscope from one sore to another, revealing the black, hair-like sticks, like tiny pieces of seaweed, underneath the skin's surface. Some are white. I put the microscope on a small sore on my arm. No fibres. Perhaps it is from her clothing? "No," says Staehr, putting the microscope on her shirt. "Clothing fibres look different." And so it seems.
In 2001, American lab technician Mary Leitao was in her Pennsylvanian home rubbing cream into her toddler's irritated skin when, she says, a fibre emerged from his skin. Her son, Drew, had been pointing to a sore near his lip and saying "Bugs". Leitao found more fibres and went from doctor to doctor for help. She had no luck, until one suggested Drew's problem was not bugs, not fibres, but his mother.
Undeterred, Leitao turned to the internet and blogged about her son's symptoms. She named his illness from a 1656 letter by the English scholar and author Thomas Browne, in which he writes of a skin condition afflicting French children "called the morgellons, wherein they critically break out with harsh hairs on their backs". By 2004, she'd set up the Morgellons Research Foundation. Its website united thousands of people all complaining about the same things: lesions, crawling sensations and weird fibres. By 2015, 14,720 families worldwide had registered with the foundation.
These sufferers, who sometimes refer to each other as "Morgies", also had many other common symptoms such as fatigue, itchiness, burning sensations, memory loss, muscle aches, joint pain and sleep problems. Convinced the medical establishment had forsaken them, Leitao and a group of like-minded sufferers and medical professionals successfully lobbied the US Congress and the nation's top health agency, the Centres for Disease Control and Prevention, to study Morgellons. But after $600,000 and six years, Leitao and Morgellons sufferers did not like the answer they were given.
The centre looked at 115 northern Californians who had Morgellons-type symptoms. It found most sufferers were middle-aged Caucasian women. The centre estimated that the Morgellons-like symptoms affected about four people in every 100,000. Half of the study subjects had a hair sample that tested positive for one or more commonly abused drugs and a third had a history of depression.
Most sores appeared to be from "chronic scratching and picking". Those fibres? Mostly cotton from clothing or bandages. The centre said it could not conclude that these symptoms were a new condition called Morgellons but they resembled "delusional parasitosis" – a psychosis that makes people think they are infested with imaginary parasites.
Sceptics say Morgellons is a disease of the internet age because, for the first time, sufferers of delusional parasitosis have been able to connect with each other.
It's difficult to know how many people claim to have Morgellons in Australia, but Peter Mayne, a GP and skin specialist well known in Morgie circles, says he sees one person a month with Morgellons symptoms, but in a recent week he saw five.
Back in the Adelaide suburb of Sturt, Donna Staehr picks up what appears to be a spacesuit lying on her bed. It's silver, body-length, padded, tatty at the neck. A power cord dangles. Sometimes she lies in it all day. It emits infrared radiation and is the only thing that heals the lesions on her skin.
Staehr traces her illness to 2008. She doesn't know exactly where or how she was infected, but has had recurring bullseye rashes, indicative of a tick-borne infection. In 2008 she was a slim, single mother who loved to paint. She'd hurt her back caring for the elderly, so wasn't working, but was "a very happy person". Then strange things began to happen.
She says it felt like someone had poured acid over her body. There were crawling sensations and skin started to peel off her swelling face. "Huge holes" appeared down her legs, like punctures. She could feel something "migrating" around her body, under the skin.
"You honestly feel like you are going crazy, your heart is palpitating," she recalls. Over several years it got worse: she had rashes and lumps, sinus and gum infections, her eyebrows, hair and many teeth fell out, her nails stopped growing, her brain got foggy, and she coughed up blood. "I don't have depression but I am depressed about how I am," Staehr says, now in her kitchen. "You can cry when you look in the mirror, you are a different person. When you are going through the worst of it, you wish you were dead."
Over in Perth, Leeann, 43, says she's battled Morgellons since February 2011. She remembers the beginning. "I had this sensation come over me, like human mange. I had all this itching, crawling, prickling on my skin. I felt like I was being eaten alive. The anxiety kicked in straight away." In 2010, Leeann moved back to a house she had rented out for two years. It was, she says, a flea-infested mess. She was bitten all over her legs. She had a few lesions and many blue and white fibres. "I could wipe my hand across my stomach and I would have blue fibres on my hand, especially if I was sweating."
Leeann spends a fortune on cleaning and skin treatment products; she chucked out her carpet, furniture, blinds, clothes and almost everything she owned, gassed the house with cedar oil and repeatedly washed the walls. She had a bobcat take away her yard's topsoil and shrubs.
Finally, she fumigated her yard and the lesions, itchiness and fibres stopped. Unfortunately, her symptoms returned a few months later. "Before all of this I kept a house, had one daughter, was a retail manager. I was very social. I don't do anything now. I don't socialise. I don't have the energy," she says.
In Mildura, in Victoria's far north-west, Gillian Penkethman, 47, says she has suffered Morgellons since the mid-1990s. Back then, though, it was a perplexing mystery. She had, she says, blue fibres, "black grit and sand and glass-type materials" coming out of her skin, lesions that appeared on her lower legs and spread up her body and profound memory issues. It was just a side-effect of anti-depressants, she had thought. Then in 2004, she "finally found Morgellons on the internet".
Penkethman has an eight-year-old son and openly admits she has struggled with her mental health in the past. Despite having been diagnosed with delusional parasitosis, she remains firm in her Morgellons belief. So, too, does her partner, John Musolino.
"Look, seriously, I have seen [the fibres] and I have seen her pull them out of her face," he says. "It's not quite like a piece of cotton, it's a lot thinner, finer." Says Penkethman: "It is so far-out weird it is not funny. You can understand why the medical profession says it is a delusion."
In the western Sydney suburb of Penrith, Jodie Donnelly is on a mission of almost evangelical fervour. She wants to educate people about contracting Morgellons and Lyme-like diseases through bird parasites (Lyme is most often spread by ticks and is caused by borrelia bacteria, which affect the body's skin, nervous and joint systems).
Donnelly is the full-time carer for her husband Brett, 53, a former computer program analyst who says he was struck down with Morgellons and Lyme in 2008. During a stint as a bus driver, Brett slept in a depot bed and was bitten many times by mites, fleas, ticks and lice; the parasitic "quaddy" as Jodie calls it.
These parasites were feeding on birds roosting above and around the depot, she says. Donnelly believes these parasites "activated their pheromones" in Brett, making him a target for further insect visitors and bites, like a walking parasite magnet. She says she's in contact with people who have suffered the same symptoms following close encounters with birds. (This may seem far-fetched, but a peer-reviewed study has recently found that many songbirds across Canada harbour ticks with Borrelia burgdorferi, a key type of bacteria responsible for Lyme. But the idea that parasites can leave a chemical trail on humans to attract other parasites is more questionable.)
Donnelly speaks for Brett most of the time because, she says, he has the reduced cognitive function or "brain fog" that affects many Lyme and Morgellons sufferers. Doctors, Donnelly says, have diagnosed Brett with chronic fatigue, fibromyalgia, suspected terminal cancer, gout, bursitis, arthritis, being delusional and "not being hugged enough as a child by his father".
There's a common belief shared by Staehr, Leeann, Penkethman and the Donnellys: that their Morgellons is a result of long-term Lyme or Lyme-like disease. Lyme is not officially recognised in Australia because the corkscrew-type bacteria that causes the American version (first recognised as a syndrome after a cluster of cases was discovered in the Connecticut town of Lyme in 1975), Borrelia burgdorferi, has not been found in Australian ticks.
This view is based on a 20-year-old study and there's a push by some scientists – at the University of Sydney in particular – to use updated laboratory techniques to see if some Australian ticks are carrying different types of borrelia that may be causing Lyme-like disease in Australia. (Lyme symptoms include rashes, fever, chills, body aches, joint pain and neurological problems, among others.)
One GP, who did not want to be named for fear of de-registration, is treating three patients who claim to have Morgellons; all tested positive to Lyme disease after the GP sent samples to a specialist laboratory in the US. "From what I have seen of Morgellons [symptoms] ... it is probably due to the Lyme," says the doctor. (It's important to note that the notion of long-term Lyme disease is also a controversial topic: according to mainstream medicine, you treat the borrelia with antibiotics and it goes away – there's no persistent infection.)
The GP believes that these patients face discrimination. They are often laughed at by doctors, told they are crazy or accused of being on drugs (ice users often itch and pick their skin). "I've had a patient before who was picking their skin," the doctor says. "But these ones I am seeing are not like that. They are not psychiatrically ill.
"I have got patients who can be seriously ill but won't attend casualty. Doctors and nurses notice the skin and they are diagnosed with a psychiatric condition and won't be listened to." This GP is not sure about the fibres, though. "I have seen little blue fibres on people's skin, different fibrous material, but I can't say what it is because I am not a pathologist."
Morgellons campaigners have been buoyed by recent scientific papers that appear to show a link to borrelia bacteria. This is important because scientists and doctors have not found an actual cause of Morgellons, leaving sufferers open to accusations of delusional parasitosis. The papers claim to have discovered borrelia in samples taken from four Morgellons patients and that the illness "may actually be an unusual manifestation of Lyme disease". These papers also assert that the fibres are composed of "the skin proteins collagen and keratin" (in other words, they are of the body, not cotton).
The papers have a number of issues, however. Their independence is compromised due to partial funding from the Charles E. Holman foundation, a US group dedicated to Morgellons awareness-raising and research. It is run by former nurse Cindy Casey-Holman, who says she became ill with Morgellons in 2005. Some of the papers' authors are closely connected to the foundation.
Australia's most dedicated Morgellons doctor, Peter Mayne, who in May retired from his practice on the NSW mid-north coast, is a paper author and medical adviser to the foundation. The papers are also published in journals that appear to have weak peer-review standards. The most recent paper, for example, is reviewed as "an exceptional article" by US psychiatrist Robert Bransfield, who is also on the foundation's medical advisory board.
A 2013 paper that connected Morgellons to borrelia drew a sharp online objection from respected computational biologist and computer scientist Steven Salzberg from Johns Hopkins University's School of Medicine. The article, Salzberg wrote, contained "very serious scientific flaws and should never have been published". He castigated the authors for relying on testing just four patients and said the results were weak and "dangerous pseudoscience".
Leading Australian dermatologist Rodney Sinclair has seen between 20 and 30 patients who complain of Morgellons. The University of Melbourne professor has an open mind on the topic. Up to a point, that is. "I often get referred patients who have seen five or six dermatologists and they want to see the professor and get the final answer."
Sinclair says he has tried treating them with penicillin on the assumption of a borrelia infection, but cannot recall any patient actually responding to it. He says that while he never finds parasites in samples patients bring along, the absence of proof is not proof of absence. "I am always careful not to confirm a parasite infection unless I actually see a parasite. Some patients come in with matchboxes full of fluff. I have a look at it and it's generally clothing fibres, the odd hair fibre.
"There are some things that medical textbooks don't explain, sometimes even get plain wrong," says Sinclair. "Junior doctors may find it very difficult to deal with these patients. Because the textbooks say the patients have delusional parasitophobia, they talk to them as though they are deluded. This condition does drive people mad, but they often function highly in all other aspects of their lives."
American medical sociologist Robert Bartholomew believes there are four things happening with Morgellons. He says many patients are suffering from delusional parasitosis. A second group appear to have the disorder cutaneous dysaesthesia, which creates the feeling that insects are crawling on the skin. "A third group appear to have sores from Lyme disease, while a fourth group are experiencing an array of ailments that have been redefined under a single convenient label: Morgellons."
It's not clear where Joni Mitchell fits within these groups, but her public comments about Morgellons have given much solace to "Morgies", who largely isolate themselves and can be suicidal. Before her brain aneurysm in March, Mitchell was considering giving up music to help sufferers gain recognition for the illness.
Donna Staehr has now dedicated herself to trying to help fellow sufferers. She talks to people on the phone and online. "I'm just trying to make them feel better. I think we need to come out of the Dark Ages and stop treating sick people the way they treat us." "Seriously," she says. "Who would make this up?"
http://www.smh.com.au/good-weekend/under-their-skin-the-morgellons-mystery-20150716-gidqmd.html#ixzz3hcvggMYx
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