Monday, March 17, 2014

Nearly 50% in US Believe in Medical Conspiracy Theories

This is too good not to share. As I read this, the word "whack-a-doodle" popped into my mind. Now why could that be?

Nearly 50% in US Believe in Medical Conspiracy Theories

By Rachael Rettner, Senior Writer | March 17, 2014

About half of Americans agree with at least one medical conspiracy theory, a new study suggests.

The study surveyed more than 1,300 Americans to see whether they agreed with six popular medical conspiracy theories — such as the discredited link between vaccines and autism, or the belief that water fluoridation is a cover-up to allow companies to dump dangerous chemicals into the environment.

Nearly half, or 49 percent, of those surveyed agreed with at least one medical conspiracy theory, and 18 percent agreed with three or more theories. [Top Ten Conspiracy Theories]

The most commonly endorsed theory was the belief that the Food and Drug Administration is "deliberately preventing the public from getting natural cures for cancer and other diseases because of pressure from drug companies." More than a third of Americans, or 37 percent, agreed with this statement.

Twenty percent agreed with the statement: "Health officials know that cell phones cause cancer but are doing nothing to stop it because large corporations won’t let them." The vaccine-autism link was supported by 20 percent of participants.

Study researcher Eric Oliver, a professor of political science at the University of Chicago, said he was not surprised by the findings. Studies of American's belief in political conspiracy theorieshave yielded similar results.

"We see that Americans have conspiracy theories about a lot of things, not just about politics, but also about health and medicine as well," Oliver said.

Why we believe


Belief in conspiracy theories is not necessarily a sign of a psychological condition such as paranoia, Oliver said. Rather, in cases of uncertainty, people have a natural tendency to assume that malevolent forces are behind the "unknown," Oliver said.

"These narratives seem like very compelling explanations for complicated situations," Oliver said.

Humans may have evolved to think this way, Oliver said. "If you hear a noise in the bush, it's much more adaptive to believe that there's a predator there than not," he said.

Public health implications


However, this widespread belief in medical conspiracy theories may have implications for pubic health.

Participants who supported medical conspiracy theories were less likely to get flu shotsand use sunscreen, and more likely to say they got health information from celebrity doctors, than those who did not endorse these theories.

Doctors should be aware that patients who endorse medical conspiracy theories may be reluctant to follow medical advice or comply with medical treatments, Oliver said.

Oliver suspects that overturning such beliefs would be difficult.

"People are attaching themselves to these narratives for psychological reasons, these narratives are providing them with feelings of certainty," Oliver said.

Oliver noted that science embraces a lot of uncertainty, which may not be intuitive to some people. But improving education, particularly about science and medicine, may help people better understand scientific information, he said.

The study is published in the March 17 issue of the journal JAMA Internal Medicine.

Follow Rachael Rettner @RachaelRettner. Follow Live Science @livescience, Facebook & Google+. Original article on Live Science.

Editor's Recommendations

Søren Brier - Cyber[bio]semiotics: Through Bateson, Luhmann, & Peirce





In this talk from University of Oregon Conference on Biosemiotics and Culture, Søren Brier, Professor of Culture and Communication Studies, Copenhagen Business School, gives a presentation on the development of cyber(bio)semiotics. You can read more of his papers on Academia.edu.


What is Cybersemiotics? 
What makes Cybersemiotics different than other approaches attempting to make a transdisciplinary theory of information, cognition, and communication, is its combination of four approaches:
1. A physic-chemical scientific paradigm based on third person objective empirical truth and mathematical theory but with no conceptions of experiental life, meaning and first person embodies consciousness and therefore meaningful linguistic intersubjectivity. 
2. A biological and natural historical science approach understood as the combination of genetic evolutionary theory with an ecological and thermodynamic view based on the evolution of experiental living systems as the ground fact, engaged in a search for empirical truth, but with no theory of meaning and first person embodied consciousness and thereby linguistic meaningful intersubjectivity.  
3. A linguistic-cultural-social structuralist constructivism that sees all knowledge as constructions of meaning produced by the intersubjective web of language, cultural mentality and power, but with no concept of empirical truth, life, evolution, ecology and a very weak concept of subjective embodied first person consciousness, but taken conscious intersubjective communication and knowledge processes as the basic fact to study (the linguistic turn).
4. A phenomenological (Husserl) or actually phaneroscopic (Peirce) first person point of view taking conscious meaningful experiences before any distinction between subject and object as the ground fact, on which all meaningful knowledge is based, considering all result of the sciences including linguistics and embodiment of consciousness as secondary knowledge. This includes an intersubjective base in that Peirce considers all knowledge as intersubjectively produced through signs only emotions are Firstness.
The integrative transdisciplinary synthesis is done in two steps: The first one is to accept two major but insufficient and very different transdisciplinary paradigms as both legitimate:
1. The second order cybernetic and autopoietic approach of Luhmann’s triple autopoietic system theory of social communication  
2. The Peircean phaneroscopic, triadic, pragmaticistic, evolutionary, semiotic approach to meaning, which is leading to modern biosemiotics, based in a phenomenological intersubjective world of partly self-organizing triadic sign processes in an experiental meaningful world.
In the final step the two are integrated in the Peircean framework by inserting the modern development of information theory and self-organizing emergent chemo- biological phenomena as an aspect of semiotic evolution creating the Cybersemiotic framework, where sign process and evolution become the ground reality, on which our conceptions of ourselves, action, meaning and the word are built.
Interesting stuff . . . .

Cyber[bio]semiotics: through Bateson, Luhmann, & Peirce


Søren Brier, Professor of Culture and Communication Studies, Copenhagen Business School, gives a presentation as part of the University of Oregon Conference on Biosemiotics and Culture. This conference, organized by Visiting Professor Wendy Wheeler and Molly Westling, focuses on the cultural dimensions of this new interdisciplinary field that explores meaningful relationships and communication throughout the living world. This communication includes the whole range of behaviors from intracellular code exchanges to interspecies communication and human language and culture. This new field has enormous potential for reintegrating cultural studies with the life sciences and opening new perspectives on the evolution of language and the arts.

Exploring Therapeutic Effects of MDMA on Post-Traumatic Stress (LA Times)

It's nice to see a major paper like the Los Angeles Times covering the developments in using MDMA (Ecstasy) for post-traumatic stress and other anxiety disorders. This is NOT new research, despite the way these stories are typically run. There has been research underway since the late 1990s, which was curtailed considerably during the Bush presidency and has been supported much more by the Obama administration.

Here are some resources on the use of MDMA for anxiety disorders like PTSD:
There have not been any serious negative results in the literature. The only real concern seems to be the serotonin depletion in the days following use of MDMA, but that can be ameliorated with 300-600 mgs of alpha lipoic acid an hour or so before taking the MDMA.

I would love to be able to use this with some of my clients.

Exploring therapeutic effects of MDMA on post-traumatic stress


Researchers and some independent therapists are studying whether banned drug MDMA — found in Ecstasy — may help those with PTSD.


By Alan Zarembo
March 15, 2014

MDMA
MDMA, the active ingredient in the illegal party drug Ecstasy, is currently being studied in a series of clinical trials to see if the drug's ability to strip away defensiveness and increase trust can boost the effectiveness of psychotherapy.

It costs about $2,000 to buy an ounce of the illegal drug, the therapist said — enough for roughly 150 doses. She pays her longtime dealer in cash; he gives her a Ziploc bag of white powder.

Back home, she scoops the contents into clear capsules. She calls it "the medicine"; others know it as MDMA, the active ingredient in the party drug Ecstasy.

MDMA has been banned by the federal government since 1985 as a dangerous recreational drug with no medical value. But interest is rising in its potential to help people suffering from psychiatric or emotional problems.

A loose-knit underground community of psychologists, counselors and healers has been administering the drug to patients — an act that could cost them their careers.

"I do what is morally right," said the therapist, who lives in Northern California and did not want to be identified. "If I have the tools to help, it is my responsibility to help."

A series of clinical trials approved by federal drug authorities is now underway to see if the drug's ability to strip away defensiveness and increase trust can boost the effectiveness of psychotherapy.

One of the key studies focuses on MDMA's effect on military veterans suffering from post-traumatic stress disorder.

Farris Tuma, head of traumatic stress research at the National Institute of Mental Health, said he's skeptical because there is no plausible theory so far about how the drug's biochemical effects on the brain could improve therapy.

"They're a long way between where they are now and this becoming a standard clinical practice," he said.

A surge in Ecstasy-related deaths at raves has reinforced the compound's destructive reputation.

But some of those who have given MDMA to patients are optimistic.

The therapist said she became a believer in the late 1980s after it helped her deal with her own trauma. She has since conducted roughly 1,500 sessions with patients, leading them on four-hour explorations of their feelings.

She uses only the purest MDMA — in contrast to street Ecstasy, which is typically contaminated — and none of her patients has ever experienced an adverse event, she said.

The therapist said she knows roughly 60 professionals in her region who use MDMA in their practices — and the number is growing.

"We are responsible therapists doing respectable work," she said.

::

MDMA — or 3,4-methylenedioxy-N-methamphetamine — was first synthesized a century ago by chemists at Merck & Co. Inc., which patented it as a precursor to a blood-clotting medication.

Toxicity experiments secretly conducted for the U.S. Army and later declassified have fueled speculation that the military was interested in MDMA in the 1950s as a chemical weapon or truth serum.

Then in 1976, Alexander Shulgin, a former Dow Chemical Co. researcher who devoted his life to research and self-experimentation with psychedelic drugs, synthesized MDMA and tried it.

"I have never felt so great, or believed this to be possible," he later wrote about the experience. "The cleanliness, clarity, and marvelous feeling of solid inner strength continued through the rest of the day, and evening, and into the next day."

The following year he gave the drug to Oakland psychologist Leo Zeff, who was so impressed that he came out of retirement and began introducing it to therapists across the country.

By some estimates, as many as 4,000 therapists were using MDMA in their practices before federal authorities banned the drug.

"We lost a major tool that was really growing," said Dr. Phil Wolfson, a San Francisco psychiatrist who used the drug in his practice when it was legal.

MDMA's chemical mechanism remains unexplained beyond the broad effect of raising levels of serotonin and oxytocin — brain chemicals related to well-being and social bonding — and triggering the amygdala, a region of the brain involved in processing memory and emotion.

Therapists say MDMA can put patients in an emotional sweet spot that allows them to engage difficult feelings and memories.

Bob Walker, a 69-year-old Vietnam veteran from Chico, tried Ecstasy on his own after hearing it was being used to treat PTSD.

A few weeks after his first Ecstasy trip, he took it again and had his girlfriend drive him to a therapy appointment. His therapist had no experience with the drug but had agreed to the session.

Walker said the experience released him from haunting images of seeing a friend killed in a helicopter crash and watching a young Vietnamese boy die in a truck accident. "I didn't lose any memory of what happened," he said. "I lost the anxiety."

The therapist, who did not want to be identified, said Walker seemed to open up. "This barrier that had been there was suddenly gone," she said.

Despite worries that she was risking her career, she agreed to conduct two more three-hour sessions over the next several months.

"Once his soul was open, it didn't fully close again," she said. "Each time, I feel that he was closer to his truest nature."

Tim Amoroso, a 24-year-old Army veteran, was tormented by memories of looking for body parts after a suicide bomber killed five U.S. soldiers in Afghanistan. He said antidepressants and anti-anxiety pills prescribed by doctors at the VA provided little relief.

Now a student at the University of New Hampshire, Amoroso bought Ecstasy at a music festival last summer and later took the drug with a friend watching over him.

"I feel like I found meaning again," Amoroso said. "My life wasn't as bad as I thought it was."


::

The new research into MDMA's therapeutic potential largely stems from the efforts of Rick Doblin, a former hippie who earned a doctorate in public policy at Harvard University to help his quest for drug legalization.

Doblin's nonprofit Multidisciplinary Assn. for Psychedelic Studies, which runs on donations, has sponsored all research into clinical uses of MDMA. Doblin hopes the drug follows the same path as marijuana, whose approval for medical purposes led to broad public acceptance.

In 2004, South Carolina psychiatrist Michael Mithoefer launched a clinical trial involving 20 patients suffering from PTSD — mostly female victims of sexual violence who had unsuccessfully tried other therapies.

Ten of the 12 who received MDMA during two sessions improved so much that they no longer qualified for a PTSD diagnosis. Patients who received a placebo fared worse. A follow-up study published in 2012 found that, for the most part, the patients who improved continued to do well.

Mithoefer is now conducting a study looking at whether MDMA has a similar effect on veterans, firefighters and police officers afflicted with PTSD.

One participant is a 57-year-old retired Army major who has struggled with memories of a young soldier killed in an ambush in Iraq. The major hadn't been able to talk much about it in earlier sessions without the drug.

"The kid, he'd shown me pictures of his young kids and wife and all that," the soldier said in a videotaped therapy session. "To get to know someone and trust him, and now you know he's dead — it's tough."

In subsequent testing, the severity of the major's PTSD declined, the researchers said. The study's full results on 24 subjects are expected late next year.

Among other studies, a trial set to begin at Harbor-UCLA Medical Center will test MDMA's ability to combat social anxiety in high-functioning autistic adults. Bay Area researchers also are planning to conduct a study of whether MDMA can reduce anxiety in patients facing deadly illnesses.

Experts not involved in trials said they haven't seen enough data to draw conclusions. They noted that in a Swiss study funded by Doblin's group, the drug did not significantly reduce symptoms of PTSD.

With a budget of $2 million a year, Doblin's group doesn't have the money to pay for the wide-scale trials needed for scientific clarity and FDA approval. His hope is that the government will step in with funding.

Doblin has met with officials at the Pentagon and the Department of Veterans Affairs, but so far the government has kept its distance.

"Ecstasy is an illegal drug and [the] VA would not involve veterans in the use of such substances," a spokesman said in an email.

alan.zarembo@latimes.com

Special correspondent L.J. Williamson contributed to this report.

Who You Are is an Interactive Process (Big Think)


For years, I have argued both here and elsewhere that our notions of self, identity, and consciousness are misguided. We typically think of them as nouns, as objects we can study and measure. I believe, however, based on my experience as a Buddhist and as a student of neuroscience, that who we are is not a noun, not an object.

From the Buddhist Abhidharma:
Here (in the the Dhammasangani), the human mind, so evanescent and elusive, has for the first time been subjected to a comprehensive, thorough and unprejudiced scrutiny, which definitely disposes of the notion that any kind of static unity or underlying substance can be traced in mind.
Here is more on the Abhidharma from the Stanford Encyclopedia of Philosophy:
The mature Abhidharma thus assimilates the analysis of phenomena-in-time-as-constituted-by-consciousness with a highly complex description of the consciousness process, dissolving the causal relations between ordered successions of consciousness moments into the activity of perception.
We are verbs, we are process. It's slightly humorous that it has taken the West almost 2,500 years to catch up with these ancient ideas, but even now this is still a fringe perspective in the neuroscience community.

Last year Virginia Hughes' Only Human blog covered a couple of then-new research findings about consciousness, and concludes that "consciousness, too, is a process — a very slippery one."

Allan Combs has written about Consciousness as a Self-Organizing Process (An Ecological Perspective). In that paper, he offers this definition of consciousness, which is one of the best I have seen anywhere:
Consciousness is perhaps best understood from an ecological perspective in which the ongoing events that structure it are seen as a rich interacting complex of informing cognitive, perceptual, and emotional information subsystems analogous to the interactive energy driven metabolism of a living cell. The result is an organic, self-generating, or autopoietic, system constantly in the act of creating itself.
YES! Consciousness is constantly in the act of creating itself. But we are not aware of this process happening unless we have spent some considerable time in meditation watching the mind. So why is this? Again, Combs:
Informal introspection reveals the overall fabric of conscious experience at each moment to be constructed of a variety of undergirding psychological processes such as memory, perception, and emotion (e.g., James 1890/1981; Combs, 1993b; Combs, 1995b). This idea is consistent with Tart's (1975, 1985) view that states of consciousness, including dream and non-dream sleep, various drug-induced and ecstatic states, as well as ordinary waking consciousness, are formed of unique patterns of psychological functions, or processes, that fit comfortably together to make something like a gestalt. We may suspect that this comfortable gestalt represents an energy minimum from the brain's point of view.
Anyway, all of this is simply food for thought - as is the article below.

Perhaps if we did not see our self as fixed and unchanging, we might more easily change the dysfunctional patterns that disrupt our lives.

Who You Are is an Interactive Process

by David Shenk
December 23, 2013


We study savants - you know, Rainman and people like that - and we think there’s obviously evidence of innate gifts because these guys are obviously born with different sorts of brains. They’re born with these gifts that enable them to remember every calendar date going back to the year 1200 or whatever.

When you actually look at what is going on yes, these people are born with birth defects if that is what you want to call them. Their brains are certainly wired differently. There is no question about that, but it turns out that the actual skills that they acquire then come after that and that we can actually manipulate our own brains.

The word is plasticity. Everyone has heard the term plasticity. There is a difference in quantity between what these savants are born with and what we can do with our own brains. There isn’t really a qualitative difference. We can alter our own brains but we don’t actually develop the skills to do what the guy in Rainman did or these other amazing savants do. Those differences are already in place. It’s the process of developing these skills, not just being born with the skill or the gift.

I'm trying to help people understand that the old notion of innate, the old notion of giftedness, the notion that we are born with a certain quantity of intelligence or a quantity of talent really isn’t there. We’re all born with differences, no question about that. We have genetic differences, but how those genetic differences actually lead to differences in traits - that’s a dynamic process that we are all very much involved with on the family level, as parents, as kids ourselves, culturally, in terms of nutrition and the environment. Everything we do and everything we are is an ongoing interactive process, which affects how those genes are then subsequently going to be turned into the traits that work for us and against us.

In Their Own Words is recorded in Big Think's studio.
Image courtesy of Shutterstock


by David Shenk

Sunday, March 16, 2014

Have Physicists Finally Detected Gravitational Waves? (via io9)

From the io9 Space page, the has been an announcement of an impending announcement, i.e., today it was announced that there will be a press conference tomorrow by the Harvard-Smithsonian Center for Astrophysics. The speculation is that they may announce having discovered gravitational waves (the last predicted by unseen element in Einstein's General Theory of Relativity).

Have physicists finally detected gravitational waves?


Mika McKinnon

The Harvard-Smithsonian Center for Astrophysics has news so big it announced that it would announce something. The press conference will stream live tomorrow at noon, but cosmologists everywhere are gossiping about what that news could be. The leading theory: Scientists have detected gravitational waves, in what would be a landmark discovery for the field of physics.

Gravitational waves are the last chunk of Einstein's General Theory of Relativity that was predicted but not yet observed. If gravitational waves have been observed, it most likely was done by the Background Imaging of Cosmic Extragalactic Polarization (Bicep) telescope at the south pole. It stared at the cosmic microwave background radiation from 2003 to 2008, but it takes a long time to process and analyze the data when looking for a faint signal in a lot of noise.

2007 photograph of telescopes at the Dark Center at the Amundsen-Scott South Pole Station. From top to bottom, the partly-buried AST/RO, QUaD, Viper, and finally BICEP and SPT at the bottom. Image credit: Robert Schwarz
The Bicep mission page describes anticipated gravitational waves as faint, polarized, and distorted by gravitational lensing of objects between us and the cosmic microwave background radiation. They released a video of their observations in 2008. The colour scale adjusts throughout the movie to highlight temperature fluctuations of both the cosmic microwave background radiation, and the galactic plane:


Why look at the cosmic microwave background radiation for signs of gravitational waves? Because an infinitesimal moment after the universe started — 10-34 seconds after the big bang — we think it went through an inflationary period. If it did, that inflation could have amplified gravitational waves to such an extent that we can actually detect them. This would not only fill in that last missing chunk of things predicted by General Relativity that we haven't seen yet, but also offer a glimpse into the primeval universe. They won't be insta-proof that inflationary theory is correct, but they would rule out some cyclic theories for the origin of the universe.

Some pre-announcement articles are already mixing up very common gravity waves with gravitational waves. To differentiate, I'll pass things off to an exasperated Dr. Katherine Mack:

Katie Mack @AstroKatie GRAVITY WAVES are a fluid dynamics thing; we see them all the time: http://en.wikipedia.org/wiki/Gravity_wave … GRAVITATIONAL WAVES are ripples in spacetime. 
15 Mar  

People use "gravity waves" to mean "gravitational waves" constantly, so probably any clarification is a lost cause, but had to say it.

Gravity waves are common phenomena in both the ocean and the sky, as seen in this MODIS image. Read more about them at the Earth Observatory.
As for the press conference, I'm already bracing for disappointment. "Breaking news! We'll have breaking news for you on Monday!" announcements produce so much hype that the actual discovery probably won't live up to expectations. I'm not the only one feeling that way — the Guardian ran an entire piece interviewing cautiously excited cosmologists warning that the observations would need to be highly robust if they're going to be momentous.

Alain de Botton, "The News: A User's Manual" | Talks at Google

Alain de Botton's new book is The News: A User's Manual (2014) and was at Google recently to talk about the new book and about how we can more judiciously consume "news" media.

I used to be an avid news consumer, and back in the day I had a blog called Raven's View in which I was actively involved in local and state politics and was deeply tied to the 24-news cycle. It made me angry, bitter, and depressed, so I stopped, and it made a huge difference in my life.

Alain de Botton, "The News: A User's Manual" | Talks at Google

Published on Mar 13, 2014


The news is everywhere. We can't stop constantly checking it on our computer screens, but what is this doing to our minds?

We are never really taught how to make sense of the torrent of news we face every day, writes Alain de Botton (author of the best-selling The Architecture of Happiness), but this has a huge impact on our sense of what matters and of how we should lead our lives. In his dazzling new book, de Botton takes twenty-five archetypal news stories--including an airplane crash, a murder, a celebrity interview and a political scandal--and submits them to unusually intense analysis with a view to helping us navigate our news-soaked age. He raises such questions as Why are disaster stories often so uplifting? What makes the love lives of celebrities so interesting? Why do we enjoy watching politicians being brought down? Why are upheavals in far-off lands often so boring?

In "The News: A User's Manual", de Botton has written the ultimate guide for our frenzied era, certain to bring calm, understanding and a measure of sanity to our daily (perhaps even hourly) interactions with the news machine.

The Itch Nobody Can Scratch - Disease or Psychosis?

In this lengthy by riveting article from Matter, Will Storr investigates morgellons, a syndrome that is either a terribly infectious disease involving itching and lesions, or it is a form of psychosis called delusions of parasitosis (DOP). Storr is the author of The Unpersuadables: Adventures with the Enemies of Science (2014), from which this is an excerpt.

The itch nobody can scratch

A new disease is plaguing thousands, but experts are in conflict over its origins—and whether it exists at all.

Will Storr in Matter

IT BEGAN THE WAY IT SO OFTEN BEGINS, so those that tell of it say: with an explosion of crawling, itching and biting, his skin suddenly alive, roaring, teeming, inhabited. A metropolis of activity on his body.

This is not what fifty-five-year-old IT executives from Birmingham expect to happen to them on fly-drive breaks to New England. But there it was and there he was, in an out-of-town multiscreen cinema in a mall somewhere near Boston, writhing, scratching, rubbing, cursing. His legs, arms, torso — God, it was everywhere. He tried not to disturb his wife and two sons as they gazed up, obliviously, at Harry Potter and the Order of the Phoenix. It must be fleas, he decided. Fleas in the seat.

That night, in his hotel, Paul could not sleep.

“You’re crazy, Dad,” said the boys.

It must be ticks, mites, something like that. But none of the creams worked, nor the sprays. Within days, odd marks began to appear, in the areas where his skin was soft. Red ones. Little round things, raised from his skin. Paul ran his fingertips gently over them. There was something growing inside them, like splinters or spines. He could feel their sharp points catching. Back home, he told his doctor, “I think it’s something strange.”

Paul had tests.

It wasn’t scabies. It wasn’t an allergy or fungus. It wasn’t any of the obvious infestations. Whatever it was, it had a kind of cycle. The creeping and the crawling was the first thing. Then the burrowing and then biting, as if he was being stabbed with compass needles. Then the red marks would come and, inside them, the growing spines.

One evening, nearly a year after his first attack, Paul’s wife was soothing his back with surgical spirit when she noticed that the cotton swab had gathered a bizarre blue-black haze from his skin. Paul dressed quickly, drove as fast as he could to Maplin’s, bought a microscope and placed the cotton beneath the lens. He focused. He frowned. He focused again. His mouth dropped open.

Dear God, what were they? Those weird, curling, colored fibers? He opened his laptop and Googled: ‘Fibers. Itch. Sting. Skin.’ And there it was — it must be! All the symptoms fit. He had a disease called Morgellons. A new disease.

According to the website, the fibers were the product of creatures, unknown to science, that breed in the body. Paul felt the strong arms of relief lift the worry away. Everything was answered, the crucial mystery solved. But as he pored gratefully through the information on that laptop screen, he had no idea that Morgellons would actually turn out to be the worst kind of answer imaginable.


Morgellons was named in 2002, by American mom Mary Leitao, after she learned of a similar-sounding (but actually unrelated) condition that was reported in the seventeenth century, in which children sprouted hairs on their backs.

Leitao’s son had been complaining of sores around his mouth and the sensation of ‘bugs’. Using a microscope, she found him to be covered in red, blue, black and white fibers. Since then, experts at Leitao’s Morgellons Research Foundation say they have been contacted by over twelve thousand affected families. Educational and support group The Charles E. Holman Foundation claim there are patients in “every continent except Antarctica.”

Even folk singer Joni Mitchell has been affected, complaining to the LA Times about “this weird incurable disease that seems like it’s from outer space . . . Fibers in a variety of colors protrude out of my skin . . . they cannot be forensically identified as animal, vegetable or mineral. Morgellons is a slow, unpredictable killer — a terrorist disease. It will blow up one of your organs, leaving you in bed for a year.”

Since Leitao began drawing attention to the problem, thousands of sufferers in the US have written to members of Congress, demanding action. In response, more than forty senators, including Hillary Clinton, John McCain and a pre-presidential Barack Obama, pressured the government agency the Centers for Disease Control (CDC), to investigate. In 2008, the CDC established a special task force in collaboration with the US Armed Forces Institute of Pathology, with an initial budget of one million dollars. At a 2008 press conference, held to update the media on the agreed protocol for a scientific study, principal investigator Dr Michele Pearson admitted, “We don’t know what it is.”

So, it is new and it is frightening and it is profoundly peculiar. But if you were to seek the view of the medical establishment, you would find the strangest fact of all about the disease.

Morgellons doesn’t exist.


I have met Paul in a Tudor-fronted coaching inn, in a comfy executive suburb west of Birmingham. He arrived in a black Audi with leather seats, his suit jacket hanging on a hook over a rear window. There is chill-out music, a wood-fired pizza oven and, in the sunny garden, a flock of cyclists supping soft drinks from ice-clinking glasses. Paul is showing me pictures that he has collected of his fibers. A grim parade of jpegs flicks past on his screen — sores and scabs and nasal hairs, all magnified by a factor of two hundred. In each photo, a tiny colored fiber on or in his skin.

“Is it an excrement?” he asks. “A byproduct? A structure they live in?” A waitress passes with a bowl of salad as he gestures towards an oozing wound. “Is it a breathing pipe?” He shakes his head. “It’s just like something from science fiction. It’s something that you’d see in a movie or in a book on aliens from another planet. It’s out of this world.”


I nod and scratch my neck while Paul absentmindedly digs his nails into a lesion just below the hem of his khaki shorts. They visibly pepper his legs and arms — little red welts, some dulled to a waxy maroon, older ones now just plasticky-white scar tissue.

Paul has seen an array of experts — allergy doctors, tropical-and infectious-disease specialists, dermatologists. He has visited his doctor more times than he can remember. None of them have given him an answer that satisfies him, or offered an end to the itching. His most recent attempt was at a local teaching hospital. “I thought, Teaching hospital! They might want to do a study on me. Last week, I took them some samples of the fibers on a piece of cotton wool. But they discharged me. They said there was nothing they could do.”

Everywhere Paul goes, he carries a pot of alcohol hand-gel, which he has spiked with a traditional Middle Eastern parasite-killer called neem oil. In between his four daily showers, he steam cleans his clothes. The stress of it all leaves him exhausted, short-tempered. He has difficulty concentrating; applying himself at work. “It affects my performance a bit,” he says.

“What does your wife think?” I ask.

His voice cracks.

“Frustrated,” he says. “Sick of me being depressed and irritated. She wants her normal life back. And sometimes, without any progress coming along, I get depressed. Very depressed.”

“When was your lowest moment?”

He breaks eye contact.
“I don’t want to go into that.”
He stares into his half of ale, scratches his wrist and says, eventually, “Pretty much feeling like ending it. Thinking, could I go through with it? Probably. It’s associated with the times the medical profession have dismissed me. It’s just — I can’t see myself living forever with this.”

“Have you mentioned these thoughts to your doctor?”

“No, because talking about suic—” He stops himself. “Things like that . . .” Another pause. “Well, it adds a mental angle.”

Paul is referring to the pathology that clinicians and Skeptics alike claim is actually at the root of Morgellons. They say that what people like him are really suffering from is a form of psychosis called delusions of parasitosis, or DOP. He is, in other words, crazy.

It is a view typified by academics such as Jeffrey Meffert, an associate professor of dermatology at the University of Texas in San Antonio, who has created a special presentation devoted to debunking Morgellons that he regularly presents to doctors and who told the Washington Post, “Any fibers that I have ever been presented with by one of my patients have always been textile fibers.”

It is thought that it is spread, not by otherworldy creatures but by the Internet. As Dr Mary Seeman, Emeritus Professor of Psychiatry at the University of Toronto, explained to the New York Times, “When a person has something bothering him these days, the first thing he does is go online.”

Dr Steven Novella of The Skeptics’ Guide to the Universe agrees: “It is a combination of a cultural phenomenon spreading mostly online, giving specific manifestation to an underlying psychological condition. I am willing to be convinced that there is a biological process going on, but so far no compelling evidence to support this hypothesis has been put forward.”

But Paul is convinced. “It is absolutely a physical condition,” he insists. “I mean, look!”

Indeed, the evidence of his jpegs does seem undeniable. Much thinner than his body hair, the fibers bask expansively in craterous sores, hide deep in trench-like wrinkles and peer tentatively from follicles. They are indisputably there. Morgellons seems to represent a mystery even deeper than that of homeopathy. Its adherents offer physical evidence. Just for once, I wonder, perhaps the Skeptics might turn out to be wrong.

In an attempt to find out, I am traveling to the fourth Annual Morgellons Conference in Austin, Texas, to meet a molecular biologist who doesn’t believe the medical consensus. Rather, the forensic tests he has commissioned on the fibers point to something altogether more alien.


IN THE SPRING OF 2005, Randy Wymore, an associate professor of pharmacology at Oklahoma State University, accidentally stumbled across a report about Morgellons.

Reading about the fibers that patients believed were the byproduct of some weird parasite, but which were typically dismissed by disbelieving dermatologists as textile fragments, he thought, “But this should be easy to figure out.” He emailed sufferers, requesting samples, then compared them to bits of cotton and nylon and carpets and curtains that he had found about the place. When he peered down the microscope’s dark tunnel for the first time, he got a shock. The Morgellons fibers looked utterly different.

Wymore arranged for specialist fiber analysts at the Tulsa Police Department’s forensic laboratory to have a look. Twenty seconds into their tests, Wymore heard a detective with 28 years’ experience of doing exactly this sort of work murmur, “I don’t think I’ve ever seen anything like this.” As the day wound on, they discovered that the Morgellons samples didn’t match any of the 800 fibers they had on their database, nor the 85,000 known organic compounds. He heated one fiber to 600°C and was astonished to find that it didn’t burn. By the day’s end, Wymore had concluded, “There’s something real going on here. Something that we don’t understand at all.”

In downtime from teaching, Wymore still works on the mystery. In 2011, he approached a number of commercial laboratories and attempted to hire them to tease apart the elements which make the fibers up. But the moment they discovered the job was related to Morgellons, firm after firm backed out. Finally, Wymore found a laboratory that was prepared to take the work. Their initial analyses are now in, but the conclusions unannounced. More than anything else, it is this that I am hoping to hear about over the coming days.


It all begins an hour south of Austin, Texas, in the lobby of the Westoak Woods Church convention center. Morgellons sufferers are gathering around the Continental breakfast buffet. From the UK, Spain, Germany, Mexico and 22 US states, they dig greedily into the sticky array — Krispie Treats, Strawberry Cheese-flavor Danish pastries, and Mrs Spunkmeyer blueberry muffins — as loose threads of conversation rise from the hubbub:

“I mix Vaseline with sulfur and cover my entire body to suffocate them”; “The more you try to prove you’re not crazy, the more crazy they think you are”; “The whole medical community is part of this. I wouldn’t say it’s a conspiracy but…” At a nearby trestle table, a man sells pots of “Mor Gone gel” (“Until There Is A Cure… There Is Mor Gone”).

Many of the attendees that are moving slowly towards the conference hall will have been diagnosed with DOP, a subject that possesses a day-one speaker, paediatrician Greg Smith, with a fury that bounces him about the stage, all eyes and spit and jabbing fingers.

“Excuse me, people!” he says. “This is morally and ethically wrong! So let me make a political statement, boys and girls.”

He dramatically pulls off his jumper, to reveal a T-shirt: ‘DOP’ with a red line through it.

“No more!” he shouts above the whoops and applause. “No more!”

Out in the car park, Smith tells me that he has been a sufferer since 2004. “I put a sweatshirt I’d been wearing in the garden over my arm and there was this intense burning, sticking sensation. I thought it was cactus spines. I began picking to get them out, but it wasn’t long before it was all over my body.” He describes “almost an obsession. You just can’t stop picking. You feel the sensation of something that’s trying to come out of your skin. You’ve just got to get in there. And there’s this sense of incredible release when you get something out of it.”
“What are they?” I ask.
“Little particles and things,” he says, his eyes shining. “You feel the sensation of something that’s trying to come out of your skin.” He is pacing back and forth now. He is becoming breathless. “You feel that. And when you try to start picking, sometimes it’s a little fiber, sometimes it’s a little hard lump, sometimes little black specks or pearl-like objects that are round and maybe half a millimeter across. When it comes out, you feel instant relief. It’s something in all my experience that I had never heard of. It made no sense. But I saw it over and over again.”

Sometimes, these fibers can behave in ways that Smith describes as “bizarre.” He tells me of one occasion in which he felt a sharp pain in his eye. “I took off my glasses and looked in the mirror,” he says. “And there was a fiber there. It was white and really, really tiny. I was trying to get it out with my finger, and all of a sudden it moved across the surface of my eye and tried to dig in. I got tweezers and started to pick the thing out of eyeball. I was in terrible pain.”

I am horrified.

“Did it bleed?”

“I’ve still got the scar,” he nods. “When I went to the emergency room and told the story of what had been going on — they called a psychiatrist in! I was like, “Wait a minute, what the heck is going on here?” Fortunately, he didn’t commit me and after another consultation with him he became convinced I was not crazy.”

“So, it was a Morgellons fiber?” I say. “And it moved?”

‘Of course it was a fiber!’ he says. ‘It honest-to-God moved.’

Smith tells me that a Morgellons patient who finds unusual fibers in their skin will typically bring a sample to show their doctor. But when they do this, they’re unknowingly falling into a terrible trap. It is a behavior that is known among medical professionals as ‘the matchbox sign’ and it is used as evidence against them, to prove that they are mentally ill.

“The matchbox sign was first described in about 1930,” he says. “They say it’s an indicator that you have DOP. This is something that infuriates me. It has absolutely zero relevance to anything.”

Back in the UK, of course, Paul received his diagnosis of DOP after taking fiber-smeared cotton to his dermatologist. I tell Greg Smith that, were I to find unexplained particles in my skin, I would probably do exactly the same.

“Of course!” he says. “It’s what anyone would do if they had any sense at all. But the dermatologist will stand ten feet away and diagnose you as delusional.”

“But surely they can see the fibers?”

“They can if they look. But they will not look!”

“And if you try to show them the fibers, that makes you delusional?”

“You’re crazy! You brought this in for them to look at? First step — bang.”

“But this is madness!” I say.

“It’s total madness! It’s inexcusable. Unconscionable.”

We speak about the CDC study. Like almost everyone here, Smith is suspicious of it. There is a widespread acceptance at this conference that the American authorities have already decided that Morgellons is psychological and — in classic hominin style — are merely looking for evidence to reinforce their hunch. Both Smith and Randy Wymore, the molecular biologist who arranged the forensic examination in Tulsa, have repeatedly offered to assist in finding patients, and have been ignored.

“Have you heard of the phrase “Garbage In Garbage Out”?” he says. “It doesn’t matter what conclusion that study comes to, even if it is totally favorable to the Morgellons community. It’s not well designed. It’s trash.”

As he speaks I notice Smith’s exposed skin shows a waxy galaxy of scars. Although he still itches, all of his lesions appear to have healed. It is a remarkable thing. Skeptics believe that Morgellons sores are not made by burrowing parasites but by obsessive scratchers eroding the skin away. If Smith is correct, though, and the creatures are responsible for the sores, how has he managed to stop those creatures creating them?

“I absolutely positively stopped picking,” he tells me.

“And that was it?”

“Sure,” he replies, shrugging somewhat bemusedly, as if what he has just said doesn’t run counter to everything that he is supposed to believe.


That evening, the Morgellons sufferers are enjoying a celebratory enchilada buffet at a suburban Mexican restaurant. Over the lukewarm feast, I have a long conversation with a British conventioneer — a midwife from Ramsgate named Margot.

Earlier in the day, when I first met Margot, she said something that has been loitering in my mind ever since, wanting my attention but not quite sure why or what it is doing there. We were at a cafe, waiting for the man to pass us our change and our lunch. He dropped the coins into our hands and turned to wrap our sandwiches. As he did so, Margot sighed theatrically and gave me a look as if to say, ‘Unbelievable! Did you see that?!’

I had no idea what she meant.

She rolled her eyes and explained, “He touches the money, then he touches our food…”

Tonight, Margot describes a scene which ends up proving no less memorable: her, sat naked in a bath full of bleach, behind a locked door, wearing times-three magnification spectacles, holding a magnifying glass and a nit comb, scraping her face onto sticky office labels and examining the ‘black specks’ that were falling out. Perhaps sensing my reaction, she tries to reassure me: “I was just being analytical,” she insists.

When bathing in bleach all night didn’t help, Margot brought her dermatologist samples of her sticky labels. Shaking his head, he told her, “I can’t tell you how many people bring me specimens of lint and black specks in matchboxes.” She was diagnosed with DOP. Her employment was terminated. “I’m a midwife,” she says, in her defense. “I take urine and blood samples — specimens. So I was taking them a specimen. And that’s what wrecked my life and career.”

As I am talking with Margot, I notice Randy Wymore, the molecular biologist I have been desperate to speak with, sitting at a nearby table. He is a slim, neat man wearing a charcoal shirt, orange tie and tidily squared goatee. When I sit with him, I find him to be incorrigibly bright, light and happy, even when delivering wholly discouraging news.

The first two samples that Wymore sent to the laboratory were not from Morgellons patients, but test fibers gathered from a barn and a cotton bud and then some debris from the filter in an air-conditioning unit. When the technicians correctly identified what they were, Wymore felt confident enough to submit the real things. And, so far, he says, ‘We have not yet exactly replicated the exact results of the forensics people in Tulsa.’

Indeed, the laboratory has found Wymore’s various Morgellons fibers to be: nylon; cotton; a blonde human hair; a fungal residue; a rodent hair; and down, likely from geese or ducks.

“That’s disappointing,” I say.

He leans his head to one side and smiles.

“It is for the most part disappointing,” he says. “But there was a bunch of cellulose that didn’t make sense on one. And another was unknown.”

“Really?”

“Well, they said it was a ‘big fungal fiber.’ But they weren’t completely convinced.”

 
Image courtesy of Charles E Holman Foundation

The next day, nursing practitioner Dr Ginger Savely — who claims to have treated over 500 Morgellons patients — leads an informal discussion in the hotel conference room. Around large circular tables they sit: the oozing and the itchy, the dismissed and the angry. “I’ve seen a fiber go into my glasses,” says one. “I’ve seen one burrow into a pad”; “One of my doctors thinks it’s nanotechnology”; “Check your clothing from China for nematodes”; “Never put your suitcase on the floor of a train”; “I was attacked by a swarm of some type of tiny wasps that seemed to inject parts of their bodies under my skin.”

I am writing the words ‘tiny wasps’ into my notepad when a furious woman with a terrifying itch-scar on her jaw says, “I have Erin Brockovich’s lawyer’s number in my purse. Don’t you think I’m not going to use it.”

“But who are you going to sue?” asks a frail elderly lady two tables away.

We all look expectantly at her. There is a moment of tense quiet.

“I don’t know,” she says.

In a far corner, a woman with a round plaster on a dry, dusty, pinkly scrubbed cheek weeps gently.

Ten minutes later, I am alone in the lobby, attempting to focus my thoughts. My task here is straightforward. Has Paul been failed by his medics, or is he crazy? Are these people infested with uncommon parasites or uncommon beliefs? Over at the reception desk, a conventioneer is complaining loudly, hammering her finger on the counter.

“It’s disgusting! Bugs! In. The. Bed. I’ve already been in two rooms. I had to drive to Walmart to buy fresh linen at 5 a.m. There’s this white stuff all over the counter…”

When she has gone, I approach the desk and ask the receptionist if the weekend has seen a surge in complaints about cleanliness.

“Oh yeah.” She nods towards the conference room. “And they’re all coming from those people.” She leans forward and whispers conspiratorially. “I think it’s part of their condition.”

Satisfied, I retire to the lobby to await my allotted chat with Dr Savely.

“So, what do you think,” I ask her, “about these tiny wasps?”

“Hmmm, no,” she says. “But I haven’t totally dismissed the whole genetically modified organisms thing. Something may have gone amuck.”

“Nanotechnology?” I ask. “Some defense experiment gone awry?”

“If something like that went wrong and got out to the public…”

I decide to confess to Dr Savely my conclusion: that these people are, in fact, crazy.

“These people are not crazy,” she insists. “They’re good, solid people who have been dealt a bad lot.”

A woman approaches the vending machine behind the doctor. Between her palm and the top of her walking stick, there is a layer of tissue paper. We sit there as she creaks slowly past us.

“There’s definitely an element of craziness here,” I say.

“But I truly believe it’s understandable,” she says. “For people to say you’re delusional is very anxiety-provoking. Then they get depressed. Who wouldn’t? Hello! The next stage is usually an obsessive-compulsive thing — paying attention to the body in great detail. But, again, I feel this is understandable in the circumstances.”

Not wholly convinced, I slip back into the conference room, where Margot is using her $1,100 WiFi iPad telescope to examine herself. Suddenly, I have an idea.

“Can I have a go?”

Pushing the lens into my palm, I immediately see a fiber. The group falls into a hush. “Did you clean your hand?” asks Margot. She fetches an anti-bacterial wet-wipe. I scrub and try again. I find an even bigger fiber. I wipe for a second time.

And find another one. Margot looks up at me with wet, sorry eyes. “Are you worried?” She puts a kind, comforting hand on my arm. “Oh, don’t be worried, Will. I’m sure you haven’t got it.”


Back in London, I find a 2008 paper on Morgellons in a journal called Dermatologic Therapy. It describes Morgellons patients picking “at their skin continuously in order to “extract” an organism”; “obsessive cleaning rituals, showering often” and individuals going “to many physicians, such as infectious disease specialists and dermatologists” — all behaviors that are “consistent with DOP” and also consistent with Paul. (For treatment, the authors recommend prescribing a benign anti-parasitic ointment to build trust, then topping it up with an anti-psychotic.) After finding fibers on my own hand, I am satisfied that Morgellons is some 21 century genre of OCD that’s spread like an Internet meme, and the fibers are — just as Dr Wymore’s labs are reporting — particles of everyday, miscellaneous stuff: cotton, human hair, rat hair and so on.

I am finalizing my research when I decide to check one final point that has been niggling maddeningly. The itch. Both Paul and Greg’s Morgellons began with an explosion of it. It is even affecting me: the night following my meeting with Paul, I couldn’t sleep for itching. I had two showers before bed and another in the morning. All through the convention — even as I write these words — I am tormented; driven to senseless scratching.

Why is itch so infectious?

For background, I contact Dr Anne Louise Oaklander, an associate professor at Harvard Medical School and probably the only neurologist in the world to specialize in itch. I email her describing Morgellons, carefully acknowledging that it is some form of DOP. But when we speak, Dr Oaklander tells me she knows all about Morgellons already. And then she says something that stuns me.

“In my experience, Morgellons patients are doing the best they can to make sense of symptoms that are real. These people have been maltreated by the medical establishment. And you’re very welcome to quote me on that. They’re suffering from a chronic itch disorder that’s undiagnosed.”

To understand all this, it is first necessary to grasp some remarkable facts about itch. In 1987 a team of German researchers found itch wasn’t simply the weak form of pain it had always been assumed to be. Rather, they concluded that itch has its own separate and dedicated network of nerves. And remarkably sensitive things they turned out to be: whereas a pain nerve has sensory jurisdiction of roughly a millimeter, an itch nerve can pick up disturbances on the skin over seventy-five millimeters away.

Dr Oaklander surmises that itch evolved as a way for humans to automatically rid themselves of dangerous insects. When a mosquito lands on our arm and it tickles, this sensation is not, as you might assume, the straightforward feeling of its legs pressing on our skin. That crawling, grubbing, tickling sensation is, in fact, a neurological alarm system that is wailing madly, begging for a scratch.

This alarm system can go wrong for a variety of reasons — shingles, sciatica, spinal-cord tumors or lesions, to name a few. It can ring suddenly, severely and without anything touching the skin. This, Oaklander believes, is what is happening to Morgellons patients.

“That they have insects on them is a very reasonable conclusion to reach, because, to them, it feels no different to how it would if there were insects on them. To your brain, it’s exactly the same. So you need to look at what’s going on with their nerves. Unfortunately, what can happen is a dermatologist fails to find an explanation and jumps to a psychiatric one.”

Of the obsessive investigations that Morgellons patients conduct on themselves, Oaklander says: “When you feel an itch, what do you do? You look. That’s the natural response. They may become fixated on the insect explanation for lack of a better one.”

But, she adds, that is not to say there aren’t some patients whose major problem is psychiatric. Others still might suffer delusions in addition to their undiagnosed neuropathic illness. Nevertheless, “It’s not up to some primary-care physician to conclude that a patient has a major psychiatric disorder.”

If Oaklander turns out to be correct, it makes sense of the fact that Greg Smith’s lesions healed when he stopped scratching. If the fibers are picked up by the environment, it explains how I found them on my hand. And if Morgellons is not actually a disease, but rather a witchbag of symptoms that might all have nerve-related maladies as its source, it squares something that Dr Savely said she is “constantly perplexed” about: “When I find a treatment that helps one person, it doesn’t help the next at all. Every patient is a whole new ballgame.”

Thrilled at this development, I phone Paul and explain the itch-nerve theory. But he doesn’t seem very excited.

“I can’t see how that relates to my condition,” he sighs. “I’ve got marks on my back that I can’t even reach. I’ve not created those by scratching.”

It is a good point, perhaps, but one that I quietly dismiss. It now seems so likely that Paul is either delusional, or has some undiagnosed itch disorder, that I judge that he is merely looking for reasons not to believe this elegant and compelling solution.


Weeks later, I receive an unexpected email from a stranger in east London. Nick Mann has heard about my research into Morgellons and he wonders if I might be curious to hear about his experiences. When I arrive at his house, on a warm Tuesday night, and settle in his small kitchen with a mug of tea, I am doubting the wisdom of my visit. Probably, I think, I am wasting my time.

But Nick doesn’t appear to be the kind of conspiracy-fixated, talking-too-fast, fiddling-with-their-fingers individual who usually gets in touch. Rather, he is a calm and friendly father of two who, he tells me, went for a walk a couple of years ago in the grounds of Abney Park Cemetery, just down the road from his home, when something unsavory took place. It had been a sunny day and he had been wearing shorts and sandals. That evening, his legs began itching. Marks sprang up on his body. ‘I was convinced something was on me,’ he tells me. ‘Something digging into my skin. Burrowing.’

Over the coming days, lesions began to open up on his skin. Running his fingertips over them, he could feel something inside: spines or fibers. He stripped naked in his kitchen and tried to dig one out.

“I stood there for three or four hours, waiting for one to bite,” he says. “As soon as it did, I went for it with a hypodermic needle. There was one on my nipple.” He pales slightly. “You know, I can’t get that out of my head. It was so painful. I dug the needle in and felt it flicking against something that wasn’t me. And I just carried on digging and scooping.” He carried on like this for nearly four hours. “At one point my wife came in and saw blood dripping down from my leg and scrotum.”

By the end of the day, Nick had dug three of the ‘things’ from his body. They were so small, he says, “You could only see them when they moved.” Tipping them from a Rizla paper into a specimen jar, he showed his wife, Karen. She peered into the pot. She looked worriedly at her husband. Karen could see nothing.

I put my pen down and rub my brow. Poor Nick Mann, I think. Just like Greg Smith, madly attacking his own body, trying to remove bits of fluff. And just like Paul — so convinced by the illusion of his own itch response that he became fixated on the fantasy that he had been invaded by invisible monsters. To get some general sense of how unstable this man could turn out to be, I try to discover a bit more about him.

“What did you say you did for a living?” I ask.

“I’m a GP,” he says.

I sit up. “You’re a GP?”

“Yes,” he says, brightly. “I’m a doctor. A GP. At a practice in Hackney.”

“Right,” I say. “Okay. Right. So then what happened?”

“I took the three mites I’d caught to the Homerton Hospital in east London,” he says. “A technician there mounted one on a slide, put it under a microscope and said “Beautiful.” Everyone gathered around saying, “Ooh, look at that.” They had no idea what it was. They sent it over to the Natural History Museum, who identified it within a day. It was a tropical rat mite. What they do is go in through the hair follicles and find a blood vessel at the bottom. That’s where they sit and that’s what the fibers are — their legs folded back.”


It is astonishing. It seems to explain it all — the sudden itch, the fibers, even the lesions in unscratchable places. I discuss with Nick the sorry experiences that Paul had trying to get anyone to take him seriously. Nick admits that he was only able to have his samples examined by experts because he was acting as his own doctor. And if that hadn’t happened, he says, “I would have received exactly the same treatment that he did. Delusions of parasitosis.”

“Paul had the impression that his doctors were working from a kind of checklist,” I say, “and if his symptoms weren’t on it, he was just dismissed as crazy.”

“I’m afraid that’s true,” says Nick. “If none of the medical models fit, they’re dismissed. The immediate conclusion is “medically unexplained symptom”, which is a euphemism for nuts. It’s a sad indictment of my own profession but I’ve experienced it first-hand. There used to be a culture of getting to the bottom of the problem. There isn’t that now. I find that really sad. And the idea that people with Morgellons are nutty — I really did nearly go mad with the itch. It was disturbing my sleep, there was barely a minute where I wasn’t having to scratch or resist the urge to scratch. It’s this constant feeling of being infested. It freaked me out.”

As for the weird reasons that patients come up with for their condition — the nanotechnology, the tiny wasps — Nick is unsurprised. “Of course, you look for answers, don’t you?” he says. “We need to find explanations for things.”


WE NEED EXPLANATIONS. We need certainty. And certainty is precisely what I have been seeking over the last few weeks. Are Morgellons sufferers mad? Are they sane? Are they the one? Or the other? I never considered the possibility that they might be both. And, in this, I wonder if I can detect another clue, another soft point in our faulty thinking about beliefs and who we are.

This compulsion to separate everyone into absolute types is the first lesson of Christianity that I can remember learning: kind people go to heaven, unkind people go to hell. There will come a day of judgment and that judgment will be simple, sliced, clean, merciless. In boyhood, the law of the playground dictates that you mentally divide your cohorts into people that you like and people that you don’t — in-groups and out. This doesn’t change much in adulthood. The Skeptics that I met in Manchester thrived on this kind of binary division — and the combative homeopaths did, too. They both told their story, and cast each other as villain. We are a tribal animal. It is who we are and it is how we are.

The urge is to reduce others to simplified positions. We define what they are, and then use these definitions as weapons of a war. Nobody enjoys the restless unpleasantness of doubt. It is uncomfortable, floating between poles, being pulled by invisible forces towards one or the other. We need definitions. We need decisions. We need finality if we are to heal the dissonance.

When my father told me that I had misunderstood faith — that it was not a matter of certainty, but a journey — I was instinctively hostile to the idea. Perhaps it suited me better to think that Christians are foolishly convinced by childish beliefs; that they are stupid. It is a reassuring story that I told myself because, according to the models of my brain, Christians are Bad.

Journalism, too, encourages just this kind of certainty. Facts, assessed and checked. Liars exposed, truth-tellers elevated. Good guys and bad guys. The satisfaction of firm conclusions, of nuance erased, of reality tamed. In my younger years, I was driven to the ends of my own sanity by the desire for this form of truth — an unthreatening, finished article that is cauterized and stitched and does not bleed. Does she love me? Is she faithful? Will she love me next week? Next year? Did she love him more? Does she desire him more? Will we stay in love for ever?

In my mid-twenties, I attended weekly group therapy sessions in north London with people who were much older than me. One evening, a woman in her mid-forties was talking contemptuously about her father, a university lecturer who, she said, had ‘a crush’ on one of his teenage students. I was scandalized.

“But he’s married!” I said.

She looked baffled. What was my point?

“I mean, doesn’t he love your mum any more?” I said. “Are they getting a divorce?”

The adults around me shared a moment. Glances were exchanged. Sniggers were muted. As I write this, I can tell you that the shame is still alive. I can feel it slithering out from underneath the memory and into my skin.

I used to hold a fierce belief in binary love, of the kind that is promised in music, film and literature. You are in love, or you are not. They were absolute modes of being, like Christian or non-Christian, right or wrong, sane or insane. Today, my marriage is happy because I understand that true love is a mess. It is like my father’s belief in God: a journey, sometimes blissful, often fraught. It is not the ultimate goal that was promised by all those pop songs. It lacks the promise of certainty. But it is its very difficulties that give love its value. If you didn’t have to fight for it — if it was just there, reliable, steady, ever-present, like a cardboard box over your head — what would be its worth?

I used to expect love to be solid, sure, overpowering, decided. That is how we declare ourselves. When we get married, we promise faithfulness for ever. When priests talk about God, they say, “He exists.” When the Skeptics talk about homeopathy, they say, “There is no evidence.” When the medical establishment talk about Swami Ramdev’s pranayama, they say, “It doesn’t work”; when they judge Morgellons sufferers, they say, “They are delusional.”

But what if pranayama works like homeopathy works, by brilliantly triggering various powerful placebo effects? What if these Morgellons sufferers are crazy, but they have been driven to these ends by itching caused by a variety of undiagnosed conditions and rejection by lazy doctors?


As I leave the home of Dr Mann, he kindly offers to see Paul so that he can check if his is an infestation of tropical rat mite. After their meeting, a few weeks later, Nick emails me to say that he found no evidence of it, but that “he’s certainly not delusional.” He sends some fiber pictures and one of Paul’s videos to the experts at the Natural History Museum. They reply, “It is our opinion that the fiber is a fabric fiber and it is only its curvature, and consequent variation in focus, that makes it appear to be arising from under the skin. The specimen in the video does look like a mite. It is not clear enough to be certain, but the most likely candidate is a member of the suborder Astigmata, for example, a species of the family Acaridae or Glycyphagidae. These mites are typically found in stored foods, but also occur in house dust.”

Theirs is a conclusion that will be echoed when the CDC study is finally published.

“No parasites or mycobacteria were detected,” it reports. “Most materials collected from participants’ skin were composed of cellulose, likely of cotton origin. No common underlying medical condition or infectious source was identified, similar to more commonly recognized conditions such as delusional infestation.”

Commenting on the work, Steven Novella writes, “The evidence strongly suggests that a psychological cause of Morgellons is most likely, and there is no case to be made for any other alternative . . . It is entirely consistent with delusional parasitosis.”

And Paul is back where he began.


The last time I speak with him, he sighs deeply down the phone.

“Are you all right?” I ask.

“Pretty crap actually. I’ve been forced out of my job. They said it’s based on my “engagement level” and that’s down to the lack of energy I’ve got at work. I can’t sign myself off sick because Morgellons is not a diagnosis. There’s no legitimate reason for me not to be operating at full speed. But, you know, I’m a fighter. I’m trying to rally against it but it’s . . . quite upsetting, really.”

“How are you coping?”

“Well . . . lurching along the parapet of depression, I suppose. But I’m all right. You can put another line in your book — my job is another thing that has been destroyed by this disease. And all because Morgellons isn’t supposed to exist.”

//.

This is an excerpt from The Unpersuadables: Adventures With The Enemies of Science by Will Storr. If you’d like to purchase the entire book, it’s available on Amazon.