Roman Mars: This is 99% Invisible. I’m Roman Mars.


Roman: Since the early 1500s, when Sir Thomas Moore coined the word “Utopia” and probably well before that, people have been thinking about how to design their ideal society. Maybe it’s one that doesn’t use money. Or one that drops the traditional family structure in favor of raising children collectively.

Delaney Hall: One, two check.

Roman: That’s producer Delaney Hall getting ready to visit a sort of utopia. And before she left, she packed her bag, tested her recording equipment, grabbed a few extra packs of AA batteries. And–

Delaney: I’m just gonna fill-up this tub of water.

Roman: And then thoroughly washed every item of clothing that she was bringing with her.

Delaney: I have a box of baking soda. Just dumping some of it in this tub of water. To be more specific, I soaked my clothes in a tub of baking soda for 48 hours and showered with Dr. Bronner’s unscented soap for two weeks before I left. I got an old pair of jeans. I’m putting them in too.

Roman: Delaney reports for the show State of the Re:Union. Every episode is about a different place. So, she travels a lot. But she doesn’t usually go to these kinds of extremes to get ready.

Delaney: But this is an unusual reporting trip I’m about to go on. I’m headed to an isolated community in Eastern Arizona on the outskirts of a small town called Snowflake. And the people who live there, have given me very special instructions for how to get ready.

Roman: Because for some people in Snowflake, utopia just means not being physically sick. A community of people who live just outside this small, rural town have a medical condition called MCS, Multiple Chemical Sensitivity. It means they are seriously intolerant to laundry detergent, perfume, cigarette smoke, car exhaust, commercial cleaning products.

Delaney: And Snowflake is a community designed around keeping that sort of stuff out. People who have MCS can be seriously affected, sometimes disabled by migraines, muscle pain, rashes, nausea, and fatigue.

Roman: But most scientific studies have not shown a strong connection between chemical exposures and symptoms. There’s no real medical consensus about what causes the illness. And doctors disagree about whether the symptoms are physiological, psychological, or both.

Delaney: That means that people with MCS are often dismissed as, well, hypochondriacs. Many find themselves without sympathetic medical care, access to services that people with recognized disabilities might have. There are a subset of doctors who believe in MCS and treat it. But most mainstream physicians avoid the diagnosis. And so a lot of people with the illness fall back on trial and error: designing their diets, habits, and environments to try and make themselves feel better.

[background noise]

Delaney: It’s my first morning in Snowflake. And this is really an incredible landscape, very flat, very dry. You can see a long way in every direction, and the sky is very blue. The houses out here are all built in a really simple style. They look like, they have sheet metal walls, pitched roofs. They’re generally pretty small.

Roman: Delaney didn’t go to Snowflake to find out whether or not MCS was “real”. She went to learn how people have built new lives and homes designed to fit their very particular needs, out there on the remote grassy plateau.

[door knock]

Delaney: Hi.

Susan Malloy: I hope you’re Delaney. [laughs]

Delaney: I am. Yeah.

Susan: Hi.

Delaney: Susan Malloy has short, curly hair and a wide grin. It’s below freezing, but all the windows in her small house are open. For people with MCS, their home is the only environment they can really control. I’m suddenly very aware of my smell. I’m worried, I didn’t prepare well enough. Susan offers me a cup of coffee.

Susan: Would you like milk in it?

Delaney: Sure.

Susan: Okay.

Delaney: And then just like I worried.

Susan: I smell cigarette.

Delaney: What would you like me to do?

Susan: I’m not quite sure.

Delaney: Okay.

Susan: I’m going to get close to you for just a sec, okay?

Delaney: Sure.

Susan: It’s the blouse, maybe.

Delaney: Okay.

Susan: Do you mind if I give you something else to wear?

Delaney: No. Not at all.

Susan: Okay. I do have guest clothes.

Delaney: Okay.

Roman: Delaney is not a smoker. But this is the level of Susan’s sensitivity.

Delaney: Susan is at the heart of this community. People have described her to me as a fairy godmother and the queen. She works with curious outsiders like me. She also attends conferences on disability rights and spends hours each week answering phone calls from people who are sick. She’s healthier than lots of her neighbors. But, that hasn’t always been the case.

Susan: For me, it was just real fast. I felt this just bizarre feeling in my head. And my sinuses and the palette of my mouth and my throat all sort of closed.

Delaney: Susan was living in San Francisco when she first got sick back in the early 90s. Her sensitivities began to cascade which is pretty typical for the illness. Her allergy to chemicals grew into a sensitivity to food and clothing then electricity, telephones, computers, kitchen appliances. Pretty much everything became toxic to her.

Susan: Furniture had to go. The rugs had to go. I had two girlfriends come over and take my clothes. Just got rid of almost everything right way.

Delaney: Susan slept on friend’s porches, in her car, and at her parents. At her sickest, she couldn’t even drink chemically treated tap water. And her Mom put buckets in the yard to gather rain. Then a friend with MCS invited her to visit Snowflake, a rural, high-altitude community with good, clean air. He’d discovered it a few years before, driving around the country, trying to find a place where his symptoms wouldn’t be so severe. And when Susan visited–

Susan: For me, the improvement was so radical. You get out of the car, you feel better. You can walk. You don’t need the oxygen tank. Your speech is clear. I didn’t exactly want to move here, but my body said, “Yes. We’re moving here.” [laughs]

Delaney: For Susan, the move felt like a passage, like a journey between two different worlds.

Susan: Like in the old days, for someone to get on a ship and go to the United States from Ireland. They didn’t really want to leave, it’s they weren’t able to make it anymore. And so they took this huge risk and got on a ship. I think it felt a little bit like that to me.

Roman: Gradually, more people moved to Snowflake. They came from all over; an engineer from Denmark, a marketing director from Toronto, a chef from the Philippines, a teacher from San Francisco. Now, there are about three dozen households scattered across this area, all united by this illness.

Delaney: And they’re not the first people in history to move because of sickness.

Susan: Forever, there have been people who’ve had to relocate because of particular medical problems or health reasons.

Delaney: In fact, the history of medical migration to this part of the country goes back a long ways.

Roman: A hundred years ago, doctors encouraged people with tuberculosis to head west for the same clean, dry air that brought Susan here. So many patients ended up in Arizona, that tent cities sprouted up across the State. And locals gave them a nickname, lungers. Because of the hacking cough that characterize the illness.

Susan: So this is not an uncommon experience for human beings. It’s just right now, it’s our turn for it. We’re the new guys.

Delaney: But the complicated thing about this illness is that it’s so unknown. Some doctors would argue that this place isolates people, pushes them deeper into their sickness. All the talk about diets and remedies and building techniques, only reinforces what might be better treated in other ways. But Susan told me, this place saved her life.

Susan: The kitchen’s the same as the bedroom, which is the same as the living room. I mean, I basically live in one big room.

Delaney: Susan built this house herself with help from friends.

Roman: The people here in Snowflake might be the closest thing there is to a MCS think-tank. And they’ve developed building techniques that helped manage their sensitivities. That means using “safe materials”, like ceramic tile or concrete floors instead of carpeting which traps chemical odors.

Delaney: Susan also used foil-lined Sheetrock which covers her walls giving the whole inside of her house a silver sheen.

Susan: I just couldn’t afford to risk paint. If you get the wrong kind of paint, you’re whole house is unlivable maybe forever or maybe at least for several months or a couple of years.

Delaney: But maybe the most striking thing about this house is the way that Susan has isolated most of her electronics in a separate room which she can completely shut off from the rest of the house. That’s because many people with MCS also experience sensitivity to electricity.

So, you designed it pretty strategically with that room in mind? The room at the front of the house is the one where you–

Susan: All the electricity comes in to one corner of the house. It all comes in right over there. And the rest of the house doesn’t have to be as affected by it.

Delaney: She keeps her television and a VCR in a separate room. And she’s constructed a thick window to watch TV through while keeping the equipment isolated.

Susan: The television is an ancient one, I mean, by today’s standards. And it’s really nothing special other than it’s old. I don’t want to have new chemical emissions in my house from plastics and so forth, if there’s any way around it. This one is old and aired out. This glass sheet in front of it, is to keep the fumes in that room. I can open the front door, and let the fumes go out without contaminating the inside of my house.

Delaney: The house is modest. But you can tell how much it means to Susan. She shows me every corner and every adaptation. It’s her safe haven. And there are lots of people who are desperate to move out here to live in a little place just like this.

[phone ringing]

Delaney: When Susan’s phone rings, it’s usually not a good sign.

Susan: I don’t get calls from people for whom everything is going great, you know? Hello.

Joan Robinson: Hi, Susan. This is Joan Robinson. How are you?

Susan: Hi.

Joan: Do you know if Carol’s place is unavailable, because I um, could not be doing worse. And I’ve got to get out of here. My skin is literally burning and bleeding from the pollution.

Delaney: Susan gets a few calls like this a week from runners, people who are moving from place to place trying to find somewhere that feels safe. Snowflake isn’t the only community of its kind. But it’s one of the largest and most established. Still, that doesn’t mean there’s room for everyone.

Susan: I’m sorry. But there is someone living there.

Joan: Someone is living there?

Delaney: Susan tracks limited housing in Snowflake. And she breaks the bad news when she can’t help out.

Joan: — weeks? I don’t know. You never know. I’m waiting for a miracle to happen. I need a miracle. Seriously, this is so horrible.

Susan: I don’t have any miracles. I wish I did.

Joan: I need to go. I know you’re not asking me to get off. But I need to go, because I’m too emotional right now.

Susan: I’m afraid that’s what a typical call is like. People who are real sick where they are and need to be in another kind of housing, and there isn’t any.

Roman: Over the years, enough people with MCS have come to Snowflake that the wider community has adapted to them, at least a little bit.

Delaney: There’s a real estate agent who helps people find MCS friendly properties. There’s an organic food store which is kind of unusual for a rural town of 5,000. The owner there will sometimes shop for people with MCS, and leave the groceries outside for them to pick-up, so they don’t have to come in to the store which smells like incense. And then, there’s the dentist.

Melissa: And my EI patients usually come in through the back door. They wait in their cars. And we have a separate entrance right here.

Roman: EI is short for Environmental Illness, another term for Multiple Chemical Sensitivity.

Delaney: Melissa is a hygienist here at Sierra Dental. Sierra Dental regularly sees about 40 patients with MCS. And they’ve adapted their practice to make it friendly to people with sensitivities.

Melissa: And I usually tend to see them at 8:00 in the morning because I haven’t wiped my room down with chemicals, because I did it the night before. So, I don’t have to worry about them smelling the CaviCide Wipes, which is what we use in the dental office.

Delaney: Melissa also shuts down the x-ray machine, opens the windows, and turns off the fluorescent lights if patients request it.

Melissa: As far as polishing teeth, I use plain pumice stone, so they aren’t getting the chemicals. The other thing we do here in the office is, we don’t use fabric softener. I actually use a natural laundry soap we use, a lot of us do. No sprays, no smelly lotions, things like that. So, like I understand it. A lot of them, they’re really sick because of chemicals and electronics and all sorts of things. So–

Delaney: Lots of people are skeptical when they first hear about the illness. But, Melissa just kind of rolled with it. She did research. She believed her patients complaints. She even sympathized a little bit.

Melissa: I remember as a kid, I spent in Vermont. We went to the Yankee Doodle Candle Factory. And it was my only experience with a migraine headache was smelling all of those– the smells. And I don’t have chemical sensitivities but being around all of those smells all day long was the worst headache of my life. So, I equate that with all the time with these poor people.

Delaney: We’re back on Susan’s porch. And she’s looking out over the landscape. She knows that this community depends on the tolerance and accommodation of people like Melissa.

Susan: All it takes is, one family building a gas station out there on the road and a lot of us would have to move.


Delaney: In a little while, Susan has a date with another friend in the community. She’s going to read them a book which means she’ll stand outside his house, hold the book up to his window, and turn the pages. He’s too sensitive to let her or even the book itself inside. It makes life here in Snowflake seem so precarious.

Susan: It is fragile. And I know it. And I treasure it for being here at all. So, I am hyper vigilant about always hoping that nothing is going to happen to us. Always hoping that we’re going to keep getting away with this life that we’ve built here.


Roman: 99% Invisible was produced this week by Delaney Hall from the public radio show, State of the Re:Union. If you like great stories about places and the communities that people create. And I’m guessing you do. SOTRU, is the show for you. Find out more at

Our show is produced by Sam Greenspan, Katie Mingle, Avery Trufelman, and me, Roman Mars. We are a project of 91.7 local public radio, KALW in San Francisco and produced out of the offices of Arcsine in beautiful downtown, chemical-free, Oakland, California.



This story was reported and produced by Delaney Hall. It was adapted from a piece that originally aired on the show State of the Re:Union. Featured image by Ken Lund. Thanks to filmmaker Drew Xanthopoulos who is working on a documentary film, set partly in Snowflake.


“Boreal Forest Opper” — Caribou
“The Crass” — Flim
“Mori” — Fennesz
“Kae” — Fennesz
“Are you Scared?” — Melodium
“The Unfinished” — Eluvium
“Are You Happy?” — Melodium
“Fire Made of Bones” — Tape
“X Portions of a Whole” — Set in Sand

  1. Luke

    Todd Haynes made an excellent fiction film with Julianne Moore titled “Safe” that does a great job grappling with this issue. Definitely worth a watch.

    1. Dina Wilson

      Yes, except doesn’t it become pretty judgmental toward the end? If I remember correctly, it starts out sympathetic, and then the ill characters are portrayed as deeply nuts by the ending. Iw as so disappointed.

    2. It’s a really great movie. It’s been a long time since I’ve seen it but, as I recall, the ending is somewhat ambiguous.

  2. steve

    I haven’t seen the movie but why would you assume the characters aren’t deeply nuts?

  3. Allen

    These people sound like they could benefit more from therapeutic/psychiatric help more than anything.

  4. I’m so disappointed….
    These people have mental issues. There’s no real “debate” about this condition – it’s psychosomatic. Research after research shower there is no relation between what they feel and what chemicals actually exist. They are sensitive to normal vegetables and not to organic – although organic have chemicals as well. Everything is chemicals… It’s done kind of panic from the modern life. And by the way – no one can feel electricity. The human body has no way to feel it.
    This show was mainly encouraging them in their delusions – and that’s not the way to help sick people. Shame on you.

    1. Maybe Me

      The show didn’t encourage the beliefs, it purposefully declined to get into any medical or psychological arguments. 99% invisible is about design, and this episode was how do people organize and build their lives without the slightest trace of modern life (literally). This episode won’t encourage anyone (and to be blunt, I doubt any of the people who this story is about will even listen to this podcast).

      You’re talking about people who were willing to leave their friends, family, jobs, homes, possessions, everything to go and live in the middle of the desert. You literally cannot pay people to do that. this episode is not going to be a deciding factor in the lives of anyone willing to go to those measures.

  5. Mike007

    My heart goes out to these people. They’ve been sold a false diagnosis by naturopaths and other alt-med practitioners, when in fact their illness is psychosomatic. They need talk therapy, help with anxiety issues, antidepressants, or all three. They need actual science, not intuition and anecdotes. Their lives are so limited by this false diagnosis. Psychosomatic illnesses are REAL illness that cause REAL suffering, but the cause is the chemistry of the brain, not the chemistry of the air and water. The stigma against mental health issues (“it’s all in their heads”) forces people to seek more “real” culprits in the environment, whether they exist or not, and the alt-med community only fans the flames. Shame on them. These are good people on pain who deserve real help.

    1. velouria

      It’s cool how people (especially those who don’t have a condition/experience a syndrome/have the same problem) just say “it’s all in your head.” Men used to say that about menstrual cramps and PMS. I’ve heard people say this about sexual harassment. Funny. You want to believe it’s not real for some reason. So therefore, they made it up.

      Sure. You’re really helping.

  6. matt kime

    I certainly believe that these people have real pain and real problems. however, that does not mean they have correctly identified the cause of their pain.

    I’ve worked through my own difficult to diagnose medical issues – you must be prepared to be wrong repeatedly before arriving at the correct answer. it can be very very hard to discern signal from noise.

    count me among those disappointed to see this getting attention.

  7. Wow. All these comments are disappointing. There are medical doctors that specialize in Environmental Medicine that diagnose this illness. Those who do not know the reality sufferers face, should educate themselves, not spread their lack of awareness.

  8. I typically enjoy 99 Percent Invisible very much, but this strikes me as a very wrong story idea for the show. It’s not my show and I don’t get a vote, so to speak, but I wanted to mention why I found it inappropriate

    This episode isn’t really about design. It’s about people who most of us see as mentally ill are indulging their mental illness together. I’m very sympathetic to them, because I’m certain they’re hurting and that they believe in the diagnosis they’ve found. But to treat this as a real illness makes no more sense than doing an episode on the design of tinfoil hats.

    This is about mental illness, not about design, IMO, even though that will outrage some people who are willing to believe whatever some well-meaning website says about this alleged illness.

    1. Maybe Me

      I felt like this episode was very much about design. How do you design a society without any of the basics of modern society? (electronics, artificial chemicals, soaps, perfumes, cleaning products, etc). Yes it is about a medical condition, but medical conditions have a huge impact on how you organize spaces conditions

      If you say this episode isn’t about design because it is about a medical condition, you might as well say “Deaf Space” isn’t about design, it’s about Deaf people, or the episode about the handicap symbol was not about design, it was about accessibility, or the toothbrush episode wasn’t about design, it was about dental hygiene.

      And as a note, saying that it is physiological still makes it a real illness, anorexics believe they are fat even when they are skin and bones, but interviewing them about how they view their body is not saying their assessment is accurate. And for me personally, i love public radio because it gives people who would never has a platform in any other medium to talk bout how they experience the world: you don’t have to agree with them.

      Sorry, I’m not picking on you, I just loved this episode and am surprised at the negative reaction.

  9. Kay

    Wow.. I didn’t actually listen to this or whatever, but you guys have really closed minds (the comments). MCS is not a mental illness. I suffered for a long time before I realized what problems I had – and it was sheer good luck that I realized which chemicals, etc. I had problems with (because someone else pointed out to me that when I was away from various things, I didn’t have various symptoms.)

    So yeah… it makes perfect sense to get away from the crap in order to live a more normal life. Living with migraines and stomach upsets and your throat closing up and skin rashes and lethargy is no picnic, let me assure you.

    Do y’all think that people with coeliacs or lactose intolerance are mentally ill as well?

    1. Mike007

      No, celiac disease and lactose intolerance are totally different. There is robust, replicable evidence for these conditions, and the mechanisms for how they work in the body are well understood. Someone with celiac has a vigorously unpleasant gut response to gluten whether they know they are eating it or not, and vice versa. Folks with MCS, wifi allergies, etc, experience symptoms when they BELIEVE they’re around harmful chemicals/signals, even if they’re not. This doesn’t mean they aren’t suffering from a disorder that deserves compassion and medical care – they are and do! But the science points to a psychological cause rather than an environmental cause. This is no less valid an illness, and it deserves help based on careful science, not theories that “make sense” on an intuitive level.

    2. ABetterWorld

      I was sympathetic to her story until she said she is sensitive to electricity. No one has on earth has proven to be that. This would be a simple experiment to conduct, having a room wired up and randomly run current through to see the results. The chemical off gassing reactions is plausible though.

  10. TheTruthDoesntCare

    Apparently everyone that commented is a self-appointed expert on chemical intolerance.

    It amazes me how those that know nothing about something claim to know everything about anything.

    Homosexuality was once thought to be a mental illness; cigarettes were once claimed to be completely safe, by doctors; and the majority scoffed at the idea that prolonged exposure to x-ray radiation was harmful.

    While much has changed since those misconceptions, one thing that certainly hasn’t is the ignorance and short-sightedness from which they were derived and the arrogance with which they’re asserted.

    Case in point.

    1. You’re mixing issues.
      Homosexuality was always a real thing – just wasn’t accepted. We’re talking about a condition that isn’t real. That’s something comletely different.
      There is no mechanism by which a human body can feel electricity. I’ll repeat – there is NO SUCH MECHANISM.
      Case in point.

    2. TheTruthDoesntCare

      I’m mixing nothing; it’s called an analog.

      Re: EMF Sensitivity, I’m quite curious to know what credentials qualify you to make such a statement.

    3. TheTruthDoesntCare

      ymoran00: Come to my house; I’ll dunk your hand in water, then shove your fingers in an electrical outlet while you tell me there’s ‘no mechanism by which a human body can feel electricity.’

    4. Mon

      I went to an indoor pool once 5 years ago. 30 min swim…I felt very bad throat, fatigued, worse headache…right away. I thought I had a cold…it went away after several days. The same next time I went to indoor pool weeks later. I had no more access to that pool but years later I went to an indoor hotel pool. Same again. I saw a pattern. I continued with normal life but each time I went to downtown Chicago I will develop bad headaches. I thought it was because walking all day…? Then in a hotel stay I developed sore throat, fever, bad headeache and fatigue…there was bleach residue all over the room, bathroom. I was sick for one week. I continued with normal life but one day I was forced to spray ammonium chloride because covid. Each single hour and in the same room 25 more people spraying and that day I got fever, sore throat, fatigue, nausea, itchy eyes, skin. There was no ventilation in the room. Spraying continued for days. I got much worse and suddenly I would get so sick in the workplace parking lot, anxiety attacks in the public bathroom…and I would feel so sickening strong odors of the perfumes, lysol, febreeze from other people. Suddenly, I would smell what it was far and unseen but I know who was doing what. One day I smelled strong gas leak in the hallways in my condo building. I contacted manager. No other person in the building smelled anything. I insisted days later. Nicor company came and didn’t detect anything. One night it was superstrong and manager and nobody smelled anything yet but nicor was able to come back and found a kitchen gas leak 4 units away from hallway. THIS IS NOT MENTAL. it is real. I got sick before I realized what was making me sick. I smell and get sick from stuff around. I was forced to quit my well paying job with good benefits and insurance, had to leave my condo and put it for sale because neighbors laundry, car fumes in garage, pesticides in all building…stopped my social life, stopped traveling what was my dream and used to travel abroad 4 times a year. Now I live like a low income person who struggles with this life. NO, it is not mental and this can happen to anyone overnight. Remember when the cigarrettes were proven to be healthy by scientists?

  11. It is real. There are doctors, MDs that confirm it is real. It is covered by the ADA. Just because you do not understand the condition, does not make it unreal. In fact, your lack of willingness to have compassion or understanding is the very reason why people with this condition or forced to live like this, die from this, lose everything, face homelessness, etc. I hope for your sake, you or anyone you love, never falls ill with this condition and has to live with the horror and exclusion that comes with it. I wouldn’t wish that on anyone, even those that deny and and judge those with this incredibly awful disability.

    1. Mike007

      I’m conflicted about the disclaimer in the podcast that its aim wasn’t about whether the illness is “real” or not. It strikes me as weasel words but I trust 99pi and believe they produce podcasts as honestly as they can. I think the big disconnect here for me is that I simple cannot put the true causes of MCS aside to ponder the associated design issues. The injustice of a community of people living in extreme isolation based on an unproven, unscientific diagnosis is a hundred times more important that the logistical challenges of watching TV without getting too close to one. I just can’t put one issue aside to talk about the other.

    2. TheTruthDoesntCare

      Evidently you haven’t heard of an experiment known as ‘Pavlov’s Dogs.’

      Scientists would feed a set of dogs, and measure their salivation (a reflexive process, not under conscious control). They would then routinely ring a bell, then feed, and make the same measurements.

      Eventually, the dogs in the experiment salivated at the sound of the bell alone.

      By your logic, the food never existed.

    3. Ignorance and skepticism are your privilege. Feel lucky you have that privilege. Unless you are trained in the field of Environmental Medicine, or are dealing with the condition you have no knowledge or experience to judge or form opinions. Nor is it your business. In case you do not know, the ADA is the Americans with Disabilities Act. People with MCS are covered under this act and we legally have the right to sue those who discriminate. So keep it up. Say it to someone’s face with the condition or deny someone access. Get to know someone who is facing this and get out of your head. It is real because it is real. Not because it is too hard for you to face the reality. The conversation never ends for those of us who actually deal with reality.

  12. TrollKing

    Most doctors are not scientists or researchers. They are essentially body technicians. Just because a doctor decides he or she is going to assert a label on something they cannot measure, does not make the condition real. It’s like fibromyalgia. For the longest time it was a word that meant “you have pain I don’t understand”. Before an established set of mechanisms that define what caused it were found it was just a word that means “you have pain I don’t understand”. MCS is similar. If mechanisms exist, it is real. Until they are found to exist, it is just a word that means “you have symptoms caused by something I don’t understand”.

    1. TheTruthDoesntCare

      Trollking: I find your remarks to me immensely more reasonable, and your description of doctors accurate. History is full of similar examples. Science is about continually unlearning and relearning.

      Just because a precise mechanism of injury has eluded the mainstream who by admission are dismissive, doesn’t mean that one doesn’t exist.

      Absence of evidence is not evidence of absence.

  13. To what end pain, whether Mental or physical, should be withstood because we can’t understand Everything is a really mystery. The idea that one could consider not wanting to surround ourselves with toxins in ANY WAY pathological is absurd.

    Regardless of root causes, to walk away from something that causes pain is a survival instinct. That is not insanity.

    Pouring poison on food? Clear cutting? Fracking? Debate the causes and since behind disease? Have at.

    Rip people to shreds personally for seeking health? Not ok.

  14. Mike007

    Wikipedia isn’t perfect but follow the first link in the podcast intro above to the Wikipedia page for MCS. You’ll see a long history of lack of evidence for, and good evidence against, MCS being caused by environmental factors. When double blinded placebo controlled trials keep showing MCS sufferers react the same to placebos as the chemicals they blame, you’ve got to take that seriously. To ignore it is to deny these people the best care science can offer.

  15. I get migraines from fabric sheets. Doctors offer me proactive. I don’t use dryer sheets. Where does that make me pathological?
    Science offers psychiatric medication. That’s IT. Reason would suggest that if something makes us feel sick we would avoid it. This is not in any way irresponsible. The brain, neurological elements not psychology or mind, causes dysfunction on many levels which we have yet to come close to understanding. Kids with autism often have sensory issues. Forging them to “get over it” backfires and causes psychological harm. Adaptations include dialing back toxicity and sensory harm. It’s just kind.

  16. Whathappened

    1. This episode had nothing to do with design.
    2. As many have stated, these people clearly have mental, not physiological issues.

  17. Werdna

    I appreciated and enjoyed this episode, and felt that it was relevant to design. Design doesn’t have to be orchestrated through an iterative process or by any other order of development — it can simply come to be from a single seed, through the combined efforts of individuals, as was the case in Snowflake’s community. This was an intentional community, one with set parameters for how these people may remain comfortable in their lives. The major design constraint is their shared illness, and the cause of this illness is beside the point of the show — this is social design. It has allowed these people be comfortable and receptive to each other’s difficulties, whether the issue is psychological or physiological can be left to medical experts.

  18. Peter

    If this were the first 99 Percent Invisible episode I’d heard, I’d never listen again. So I hope there are no more like it in the pipeline. If you want to tell stories about how people respond to psychosomatic illness without offering a shred of critical thinking, then you’re way off your mission to tell stories about design, and you’re just demonstrating that maybe you can’t be trusted on other matters.

  19. Clint

    I feel like this was an attempt at putting out an interesting story by the weekly deadline. I’m still a faithful fan, but I call for a return to the basics! Let’s see the everyday design!

  20. stacey

    I’m a new listener and am frustrated by all these comments debating on whether or not mcs is a mental illness or a real one. This isn’t the space for such a debate. I will say that i enjoyed the episode, in fact i had wished it was longer and i could’ve heard more about how these people had designed their lives accordingly. I was pleased that Delaney (the reporter) was able to be so impartial and treated Susan (the woman she interviewed) in a courteous and respectful manner, as i would hope anyone who is granted an interview would treat their subject. i thought its was well done, interesting, and out of the ordinary. good job gang

  21. kris

    I completely agree that theses people are suffering from mental illness and it is disappointing that the show is kinda encouraging their mental illness and wanting to make us feel a certain way with the phone call and how they are talking about it. But it does have to do with design, she designed her home to keep away the things she feels will hurt her

  22. You know what, guys? Even Wikipedia has recently updated its originally dismissive article about MCS with recent clinical trial information.

    Also, skeptics and sufferers alike should read Discover Magazine’s November 2013 article about MCS/TILT. It’s very helpful, and the ensuing discussion among readers is even livelier. With plenty of naysayers to keep the skeptics happy.

    Here’s my contribution from the I-have-MCS camp: I cannot smell most of what I react to. Which is a problem, because there’s nothing to warn me before I start having the symptoms.

    From my personal experience, it’s real, it’s extremely difficult to manage and still have an involved, satisfying life, and this constant scoffing is probably responsible for the fact that I had the problem for 30 years, saw a gazillion doctors, and not one thought to suggest this line of investigation.


    Good luck to everyone who knows from personal experience that it’s all too real and is taking steps to build a positive, productive life around the many, many limitations.

  23. TheTruthDoesntCare

    The same was thought of fibromyalgia, until one day, they discovered its mechanism of injury and confirmed it was NOT imaginary nor psychosomatic.

    The audacity of a such a supposition. To claim that millions of people must be mentally ill simply because YOU don’t fully understand how the dots connect.

    I realize now that most in the comments are speaking out of fear. They are afraid. They beleive that to acknowledge the existence of such a dreadful illness opens themselves up to ‘suddenly’ becoming afflicted. The sad truth is that if they merely educate themselves and fosterd the spread of information rather than disinformation they would know this not to be the case.

    There’s a name for this behavioral deficit. It’s called cognitive dissonance, and I hope that you all seek mental help.

    1. SayWhat?

      Are you being deliberately ironic? Because the last sentence of this post is either the work of a lunatic or a comic genius!

  24. Google “Toxic Induced Loss of Tolerance (TILT)”. What happens is that the total exposure of the body to chemical and electrical toxins produces extreme sensitivity to the same. It is not all in their heads, and, contrary to one of the first posters, research is increasingly showing that the TILT and NCS phenomena are not psychosomatic.

    1. SciencePlease

      Can you please tell me what an ‘electrical toxin’ is? Some links to peer reviewed medical journals would be greatly appreciated.

  25. sengis

    Yikes. As a person with disabilities who focuses on helping other PWDs who have been conned by the alternative medicine industry, I couldn’t bear to listen to this. This is enabling and creepy, and in really poor taste.


    There’s a double blind placebo trial on people with MCS. It’s either hypersensitivity that hasn’t been demonstrated for any reason scientifically, or psychological.

    I don’t expect the extra crunchy podcast that I like, 99pi, to handle this objectively, but I wish they would have had some expert talk about the disorder, it felt like a much shorter than usual episode and it was more like a report that Chelsea Clinton would have done, than anyone I have enjoyed at 99pi.

  27. Kim

    Fascinating to think about these issues from a design perspective! Thank you for this story.

  28. JH

    It’s almost definitely the case that the lady in the first instance was psychosomatic. Allergic to electricity? Not a chance that’s a real thing. At the beginning she mentions smelling cigarettes on the interviewee’s blouse. Don’t buy it and it could be tested.

  29. manitobamark

    I’m as big a skeptic as anyone, I think, but part of that is critical thinking and I’m not seeing much of that in these comments. I know that I’ll start sneezing if I walk past a perfume counter at a department store. If that’s true, then why not sensitivity to laundry detergent? Or cigarette smoke? Or gas fumes? And if mine is just a minor sensitivity, couldn’t others have something more hard-hitting? Oh, I’m sure some of these folk will be having psychosomatic illnesses; but ALL of them? I think not. I’m keeping an open mind on this one.

    As for sensing electricity, ever stood under a large pylon? Or out in a thunderstorm? Yes, sensitivity to smaller charges sounds unlikely, but I doubt it’s absolutely impossible.

    BTW – I think 99% does a great job of tackling issues like these (the prison SHUs is another that springs to mind) in a thought-provoking way that takes a neutral view yet still makes a point. I think the balance is just right, and don’t ever change it guys!

  30. oaklandnative

    Chemical free Oakland, California? I have to say, I agree with many comments before me that 99pi treads a tricky line to report on this town without “entering the fray” of discussing the validity of the condition. Especially when you make light of it in your closing credits.

  31. Formaldehyde Hater

    I’ve been listening to 99PI for years & as a suffer of MCS I found this episode especially interesting.

    The quick version of my story:

    When I was in high school, my family was living in a brand new house. After living there a couple years, I started getting migraines every day. I got tested for everything from a brain tumor to thyroid problems, but everything came up negative. I’d had the same doctor since birth and he knew me well and could tell something was wrong with me, but had no idea what it was. Finally a family friend suggested that maybe something in our (new) house was making me sick, and after moving out I felt better almost immediately. I only got migraines when I hung around my family’s house for too long.

    I noticed a trend of getting migraines any time I spend time in new buildings or around construction. Spending more than about 15-20 minutes in IKEA or near a construction site would give me a horrible migraine & I’d start shaking & sometimes throw up and then sleep for sometimes 24 hours straight. But the worst was when I went in to a cadaver lab with a sign warning about formaldehyde on the door—it hit me like a wave & I immediately got sick. It turns out formaldehyde isn’t just used for cadavers but is also used in pretty much all synthetic building materials.

    So for nearly 15 years I’ve been doing everything I can to avoid formaldehyde. I’ve dropped college classes when they were held in too new of buildings. I’ve had to quit jobs when they decided to do building upgrades. I’ve lived in old apartments where I’m glad that no upgrades have been done in years. Etc.

    In the last couple of years, synthetic fragrances have started to really bother me too. I had these sores for about two years on my ears & in my nose that wouldn’t go away no matter what the dermatologist prescribed. And I was sneezing all the time—several times a minute all day long—despite taking allergy medicine daily. As soon as I switched my shampoo, lotion, deodorant, etc. to more natural fragrance free varieties, the sores magically healed & I stopped sneezing.

    Honestly, hearing this episode just made me grateful that I don’t have MCS any worse than I do. I’m still able to live a fairly normal life.

    Think what you will about me & other people with MCS being crazy. I would think the same thing if I hadn’t experienced it firsthand. I’m not much of conspiracy theorist, but I’ve read some things about lobbyists from chemical companies doing everything they can hold back research on MCS & push the psychosomatic angle, and I wouldn’t doubt it. But I know I’m not crazy.

  32. M P

    I’m also disappointed that your story didn’t report at greater length on the scepticism surrounding this condition. Whether its symptoms are purely psychosomatically induced, or there is a real chemical sensitivity issue that simply hasn’t been discovered yet, the fact is that its sufferers would be better off being monitored by a physician rather than living in isolation out in the sticks and trying homebrewed recipes like sequestering their electronics and using “aired-out” (!) TVs.

  33. Linda

    Psychosomatic?? Some of us have endured grueling testing before being diagnosed. Results are completely reproducible. No amount of talking or counseling or positive thinking stops them from happening every single time there is an exposure to the specific chemicals that are a problem.
    No I don’t live in Snowflake and no I am not fixated on the condition, but I do protect myself since there isn’t a known cure YET. In spite of having this hideous condition, and being debilitated by it, I probably lead a more productive life and do more far reaching good in the world, in another subject, than many of the naysayers who are spouting off as if they actually knew something.

  34. Angela

    To those who think it’s all in our “head!” I just hope you don’t have to go through what so many of us are going through. I developed chemical sensitivities after working in formaldehyde and other horrible chemicals. I was a normal person before this. It has messed up my whole life from my breathing to eating. You should be thankful that you are fine and not like us. Don’t make fun of or accuse until you’ve lived one day like we with chemical sensitivities have to.

  35. Alanko Donnet

    ‘Snowflake’ seems an oddly apt name for this settlement. I can only imagine each citizen is a very special snowflake. I would love to see a breakdown of the demographic in Snowflake. They lost my sympathy when I heard that they all sit in their cars waiting for the dentist. The levels of EMI and RFI in a car must be quite high, so the woman who keeps her electronics all sealed off must have a whale of a time sitting there. The plastic dashboard and trim, and the pollutants from the exhaust don’t affect these people?

  36. Carolyn Talley

    The World Health Organization just officially recognized MCS and electromagnetic sensitivity as diseases and are encouragingiindividual nations to do the same. New research on EMF sensitivity seems to showa relation between these individuals and degree of breakdown of the Myelin Sheath ……which would explain why their nervous system is more sensitive to emf …….never judge just because you don’t expedience it or even because it isn’t proven yet ……

  37. Brian

    Here’s an article with quite a bit of detailed breakdown against the “MCS is psychological” viewpoint:

    Many here obviously don’t understand how science works, or how easy it is to design a study to prove any perspective.

    “When reviewing the references of the ACOEM and AAAAI position statements on MCS it became apparent to me that both missed hundreds of peer-reviewed articles on MCS, which support its organic etiology. The position statements make no reference to Pall’s latest works. Also strangely absent from these position statements is any reference to Heuser’s and others’ recent work in brain imaging.”

    “Most skeptics rely on the data from Herman Staudenmayer, who did a double blind chamber study of persons alleging to have MCS. His study has come under very unfavorable review by Ashford and Miller (1998) for alleged flaws in methodology, masking, waiting periods, and other problems. Even the Interagency Draft Report (1998) is somewhat skeptical of his data.”

    “There are seven major studies that are used to show MCS is a psychogenic condition. Dudley (1998) provided a devastating critique of these studies. In these seven studies, there were a total of 334 patients studied. However, no more than thirty-three of these patients actually had MCS. In five of the studies, none of the patients had MCS. Of the remaining two, in one study, eighteen out of forty-one had MCS, and in the other study no more than fifteen out of fifty-three had MCS. The studies have nothing to do with MCS, since it was not studied.”

    Sensitivity to EMF: it looks like some people do not realize that all of the molecules in every one of our cells are bound by electrical energy, or that electricity flowing through a conductor produces a field around the conductor. Also what of the young kids in classes who became ill exactly at the time that the school enabled wireless systems for school computers/television/etc.? This has happened at many schools, where the students were completely unaware of the wireless systems.

  38. gary

    i have had allergies since i was a child. i never developed chemical allergies/sensitivities. i became a member of a chicago area (mcs) multiple chemical sensitivity / allergy support group, because of my allergies. while i was a member, a lady in her 20’s died from multiple chemical sensitivities. a few years later, a man in his mid 30’s died from multiple chemical sensitivities. shame on those of you who are skeptics. if you were friends with these 2 people who died, would you still be a skeptic? there’s a lot in life that science does not know.
    slowly, people are waking up that mcs is real. & yes, there are people who have emotional issues & think that they have mcs (maybe the studies tested these patients)…. maybe the testing protocol was flawed (as too many studies are flawed)… but there are definitely patients who have mcs. & my heart goes out to mcs sufferers & all people with any medical condition….

  39. Jamie Bronstein

    This was a ridiculous and poorly-conceived episode, and I think it was exploitative to treat the clearly-mentally-ill people of Snowflake like sideshow freaks. What’s next–cardboard housing design for the mentally-ill homeless population?

  40. Trevor M

    Allergies to chemicals? Okay, that’s possible.

    When someone claims an allergy to electricity, the credibility is gone.

  41. Anonymous

    I think that chemical sensitivity’s are real. But I’ve gotten horrible rashes where it burns to move my mouth even slightly from anxeity. So I think it’s a mix of physiological and mental illness. But you know I’m not even remotely a doctor or specialist.

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