Not wearing any perfume?

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My raw throat is closing, my heart racing, and my head fuzzy from the fumes emanating from my dear friend.  She knows I’m very sensitive to chemicals.

“I stopped wearing perfume a long time ago after I found out that it makes some people sick,” she says.

What do I say?

What I’m thinking is this:

The fragrance in your laundry products is just as toxic as any perfume you would spray on.  In fact it can be even more problematic because there is no way to control the amount of fragrance that ends up on your clothes and it is very difficult to ever get it to wash out.  All of your clothes and linens are now drenched in it, so there is no way for you to decide to be “fragrance free” for a day so you can come visit me without making me ill.  The companies that sell laundry products have been progressively ramping up the amounts of fragrance in their products because they know that it is not how well the product works that sells it, but how it smells.  As a result, the products we have now are far more toxic and irritating than they were in the past.  But this has gone practically unnoticed by people like you because you have become so accustomed to living in a cloud of chemical fumes that your sense of smell has become dulled.  So you can’t tell that at this very moment your clothes are outgassing enormous amounts of the sick-making fragrance that you think you are not wearing.  And now I’m sick.

What I say is: “Oh well, everything makes me sick now.  Don’t worry about it.”

Because I love my friend.

But the truth is that my friend is putting herself at risk.  Just because she does not have obvious symptoms as soon as she smells laundry detergent or other chemicals does not mean they are not affecting her.  She has chronic health problems that could very well be related to the toxic personal care and cleaning products that she uses, but she will never be able to discern that this is the case unless she purges her home of all toxic chemicals so that she knows how it feels to breathe clean air.

So how loving is it of me to avoid telling the truth?  I avoid it to keep the peace.  But meanwhile my friends suffer and I suffer.  So here it is.  The truth:

Laundry detergent and fabric softener is not harmless.  Neither is anything else that has chemical fragrance added to it.  You may not have sprayed perfume on this morning, but that lotion on your hands is pungent.  And your hairspray even more so.  Your fabric softener-impregnated clothes compete with your lotion and your hairspray to create a toxic soup that makes me choke.   And it’s terrible for you too.  Now you know.

Next comes the inevitable question: then what can I use?   Everything has fragrance.  Well no, not everything.  Most things.  Yes, it’s hard at first to switch to a more natural and non-toxic lifestyle, but it can be done.  And once you’ve got your routine down, it becomes second nature.  Following are some links to guides on how to choose healthier products:

Environmental Working Group’s consumer guides:  consumer guides

Debra Lynn Dadd’s list:  Debra’s list

Wellness Mama’s tips and recipes for a non-toxic home:  Wellness Mama

 

 

 

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Dear Normals

By Joel Montez de Oca via Flickr Creative Commons

By Joel Montez de Oca via Flickr Creative Commons

Dear Normals,

I used to be one of you.  So I get it, I do.  I wore perfume and l loved it when men wore cologne.  I used hairspray, perfumed lotion, heavily scented deodorant, and my clothes smelled “fresh” from the laundry detergent I used.  My car smelled like artificial cinnamon from the air freshener I hung.  I ate and drank what I wanted – mounds of pasta, fast food, desserts of all kinds, candy, sodas, espresso every day…and I loved it all.

If someone had tried to stop me then with facts about how I was harming myself, I imagine I would have resisted.  It would have been hard to imagine life without junk food and chemicals.  In fact, I didn’t even think of it in those terms.  I had no idea where fragrance came from.  I think I must have imagined somehow that it came from plants and flowers.  And I knew I felt bad if I ate too much junk food, but a little now and then?  Come on now!  What could be so wrong?

But then I became ill, and everything I’d taken for granted about my life was up for reconsideration.  I didn’t like feeling sick, so I started to read.  I found some things out that I think I would rather have not known.   It began to dawn on me that there was a sinister reality which had been until now hidden from me: the world is not as friendly a place as I had assumed, and remaining healthy in it would require me to buck the tide, to be different.

For many years I fought hard against the contraction of my world.  I love to belong.  I love freedom.  So I often pretended that I was fine, that I was not being harmed by my choices or the choices of other people.  I forced my body to get my attention with the worst kind of health crisis before I would listen to it.  By that time, my world had contracted to the size of my bed by no choice of mine, something that may not have happened if I had voluntarily contracted my world a bit by eating healthier, avoiding unmitigated stress, and staying away from toxins.  My insistence on total freedom in a toxic world essentially stripped me of all freedom for a time.

So dear normals, I do get it.  I have not always been the strange, food allergic, chemically sensitive person you see before you now.  I  know what it’s like not to want to give up the things I like.  I know what it’s like to want to look the other way when confronted with evidence about the harm my choices are causing.  I know what it’s like to want to question the validity of that evidence because it just seems too awful to be true.  But I can assure you now that it is true.  My sick body is living proof.

Sincerely,

One Who Knows

The Evidence:

Dr. Martin Pall on MCS

Dr. Anne Steinemann on Fragranced Laundry Products

EWG: What the Chemical Industry Doesn’t Want You to Know

MCS Under Siege, by Dr. Anne McCampbell

Scent of Danger: Are There Toxic Ingredients in Perfumes and Colognes? – Scientific American

Semi-Sweet: Americans Should Cut Sugar by More Than Half, Says AHA – Scientific American

In Defence of Food, Michael Pollan

Also, see Recommended Reading

Canaries in the Coal Mine: Multiple Chemical Sensitivities, Myth Vs. Reality

Photo by Majd Mohabek via Flickr creative commons

Photo by Majd Mohabek via Flickr creative commons

When people find out that I am sensitive to the chemicals in everyday products, I almost invariably find that they believe one or more of the many myths surrounding MCS. First, what is MCS?  I’m constantly surprised by the fact that almost no one knows what I’m talking about when I use that acronym.  MCS stands for Multiple Chemical Sensitivity.  The Chemical Sensitivity Foundation defines it this way:

Multiple Chemical Sensitivity (MCS) is a medical condition characterized by a heightened sensitivity to chemicals. People who have MCS become ill when exposed to a variety of chemicals, many of which are commonly encountered in everyday life. Some people have only mild chemical sensitivities, while others have a more severe form of the illness called MCS.

Now that you know what it is, I imagine some of you are probably thinking, “Ooooh, I think I know somebody with that problem”.  With a lot of help from some of my fellow MCS sufferers, I have identified some of the more common myths associated with the disorder:

Myth #1:  People who say they have MCS really have chemophobia (fear of chemicals), anxiety, or depression and probably need psychiatric help (medication).

Most people who have MCS didn’t have any idea that everyday chemicals could be dangerous or cause life-long problems until they became ill.  Many didn’t find out what was making them ill for a long time, going from doctor to doctor looking for a solution.  Much of the time, it is not until a person begins to avoid chemicals that they begin to see the connection between their symptoms and the chemicals they had been exposed to.   It is possible that some people with MCS develop chemophobia, but it’s usually long after they have had many bouts with chemical-induced illness.

Some people with MCS do suffer from depression, but evidence suggests that the depression usually occurs after the onset of the illness, which would also suggest that it often results from the misery and social isolation of chemical sensitivity, and not the other way around.

Also, MCS causes physical illness.  It is known that physical illness is very often accompanied by mental illness.  The brain is a physical organ which, like any other organ, can be affected by toxins and disease processes.  Many of the toxicants which make us ill are known neurotoxins, which could also explain much of the anxiety and depression experienced by people with MCS.

Because of liver-function abnormalities often seen in people with MCS and a general hypersensitivity to many different chemicals, psychiatric medications are often not well-tolerated and are most definitely not a cure-all solution to this problem.

Myth #2:  People with MCS should just take antihistamines or allergy shots so they can live more normally and not have to avoid contact with common chemicals.

Standard allergy treatments often fail with MCS.  That is because the disease mechanism appears to be different from what happens in allergic illness.  In a true allergic reaction, the immune system begins to tag harmless substances as harmful invaders.  That sets off all the classic symptoms of allergies: sneezing, runny nose, coughing, hives, etc.  Many people do react in that way to chemicals, in which case allergy treatment may be beneficial.  But many others react in ways that are not typical of an allergic reaction.  Often, neurological symptoms such as pain, dizziness, brain fog, slurred speech, and tremors  are dominant.  These types of reactions will often not respond to common treatments for allergies.

Myth #3:  Common personal care and household products are mostly harmless and people with MCS are just hysterical.

Environmental Working Group would beg to differ.  They have created several databases including the Skin Deep Database which exposes not only the ingredients of common products, but also their potential toxicity to humans.  Many of the most commonly used household and personal care products listed received an F on a scale of A to F, F being a “fail”, or most dangerous. – Test your knowledge of cosmetics safety: 8 myths debunked

Myth #4:  People with chemical sensitivities just have a strong sense of smell and are bothered by odors. 

People with MCS can often react to odorless chemicals, so it’s not about the smell.

“… It should be clear … that chemicals in MCS are not acting on the classic olfactory receptors (15,16), but rather are acting as toxicants. This is opposite many published but undocumented claims that MCS is a response to odors. There is additional evidence arguing against the view that MCS is a reaction to odors. MCS sufferers who are acosmic, having no sense of smell, people who have intense nasal congestion and people whose nasal epithelia have been blocked off with nose clips can all be highly chemically sensitive (1,4). This does not necessarily mean that MCS never impacts the olfactory system. It simply means that MCS is not primarily an olfactory response.”

~ Martin L. Pall

Myth #5:  MCS is a rare disorder.

 Possibly up to 25% (depending on the study you read) of people in the US report symptoms of chemical sensitivity.  It’s likely that most of the statistics on MCS prevalence are shots in the dark, as many people who suffer with MCS go undiagnosed.  Many others who are sensitive to chemicals simply don’t know what it is that’s making them ill. – MCS statistics

Myth #6:  MCS is controversial. 

Dr. Ann McCampbell, in her article Multiple Chemical Sensitivities Under Siege, had this to say about it:

“Like the tobacco industry, the chemical industry often uses non-profit front groups with pleasant sounding names, neutral-appearing third party spokespeople, and science-for-hire studies to try to convince others of the safety of their products. This helps promote the appearance of scientific objectivity, hide the biased and bottom-line driven agenda of the chemical industry, and create the illusion of scientific “controversy” regarding MCS. But whether anti-MCS statements are made by doctors, researchers, reporters, pest control operators, private organizations, or government officials, make no mistake about it – the anti-MCS movement is driven by chemical manufacturers. This is the real story of MCS.”

The controversy surrounding MCS is not real.  It is manufactured by chemical industry leaders with a profit-driven agenda.

Myth #6:  “If I can’t smell it, it’s not there.”

If you put it on, ever, it’s there.  Often we cannot smell our own odor because of something called olfactory fatigue .

Myth #7:  The dose makes the poison.

Many people assume that “just a little won’t hurt”.  But check out what Philip and Alice Shabecoff had to say about it in their book, Poisoned for Profit: How Toxins are Making Our Children Chronically Ill:

“Chemicals capable of disrupting endocrine hormones… are now understood to be a different kind of toxin.  None of them follow “the dose makes the poison” dictum.  Even at tiny doses they can alter the way the immune and endocrine systems operate, leaving the body vulnerable to sickness or developmental damage.  Pthalates, bisphenal-A, dioxins, flame retardants, and some pesticides as well as long-banned chemicals persisting in the environment, such as DDT, are major hormone disruptors.”

Incidentally, pthalates are found in many fragrances, which also means that it’s found in many if not most fragranced products.

Myth #8:  MCS is just an excuse to “opt out of life”.

I have spoken to and read about many people who have MCS, and not one has ever seemed happy about their isolation.  In fact, what I hear most is despair approaching desperation.  Nobody wants to be shut out of life.

Myth #9:  People with MCS behave in contradictory ways.  Sometimes they say they react and sometimes they seem fine.  This must mean they are not telling the truth about their symptoms.

Symptoms of chemical sensitivity can wax and wane depending what level of health the sufferer is experiencing at the time.  When a person with MCS is feeling particularly strong, perhaps because of their efforts to heal their body, they may not have such obvious reactions to chemicals.  On the other hand, if the person is feeling run-down, it’s possible that their reactions will be more severe and long-lasting.  Things that affect sensitivity levels include stress, sleep, nutrition, and whether or not they have been able to breathe clean air in recent days.

Or…maybe they don’t want to tell you every time they start feeling ill because they are tired of be told that it’s all in their head.

Myth #10:  People with MCS just need to stop thinking about chemicals and symptoms and they will be fine.

It’s true that thoughts can be very powerful.  But as I mentioned before, most people with MCS didn’t even know that they were being made ill by chemicals at first.  Obviously, thinking about chemicals could not have played a role in the etiology of their illness if they didn’t even know to think about them in the first place.

Myth # 11:  “Normal” people shouldn’t have to worry about the products they use if there are “safe” areas set aside for those with sensitivities. 

It might seem like a good idea to provide an area set aside for people with chemical sensitivities at social events such as religious services, conferences, conventions, and concerts, but there are a couple of problems with it.  We all would like to participate fully on social occasions.  Segregation does not feel good.  It’s frustrating and disheartening.  Also segregating people with MCS away from others in a group tends to give people a false sense of having done the right thing.  They often feel that because those with sensitivities have their “safe” area, that it won’t matter how much fragrance they use or what the building is cleaned with.   It is very difficult to keep a small area of a building completely free of scent when the rest of the building is full of it. This is often due to common ventilation systems and the opening and closing of doors. It’s similar to the absurdity of setting aside non-smoking sections in restaurants.  The non-smoking section may be slightly less noxious (or not), but it will never be completely free of the presence of smoke or tobacco residues.

Myth # 12:  If my scents were making people ill, they would tell me.

People with MCS have often encountered so much skepticism and ridicule from family and friends about their symptoms that they may give up trying to talk about it.  We sometimes find ourselves having to choose between educating the public about the reality of MCS and keeping our friends.  Some of us suffer in silence. Others choose to try to quietly escape a toxic situation without making a scene.

Some cases of MCS are so severe that a reaction goes far beyond what might be considered typical.  It is possible for a reaction to cause so much brain fog that the sufferer finds it difficult to articulate thoughts and may not be able to tell you that you are making them sick.  Some reactions can include hearing loss, temporary blindness, and may even progress to the point where the sufferer actually physically collapses.  This is extremely frightening for the sufferer and for those standing by.

Myths and Facts About Chemical Sensitivity

Myth # 13:  Everyone should not have to change just to help a small minority.

The American Academy of Environmental Medicine had this to say in their Position Paper on Chemical Sensitivity:

It is believed that these chemically vulnerable modern-day “canaries in a coal mine” have an important lesson to teach us, if we would but listen – namely, that the hyperreactivity manifested by those with chemical sensitivity is an early warning sign of the alarming potential for eventual poisoning of our entire population by the numerous man-made chemical pollutants to which we are being continuously exposed. In other words, the fact that chemically sensitive individuals demonstrate exquisite vulnerability to toxic injury should serve to alert us to the disturbing reality that our modern industrial society, despite its many advantages, may ultimately compromise the health of us all.

As noted earlier, MCS is not rare.  And many of the people who are suffering from it are unaware of what it is that is making them ill, so the actual number of sufferers is likely to be much higher than the numbers that are published.  Also, many of the chemicals to which people are reacting are known human toxicants, many of them carcinogens.  We would all do well to avoid them.

It can be much easier to change our cleaning, washing, and beauty routines than many people assume.  Check out EWG Consumer Guides for help in finding non-toxic products.

Myth # 14:  People with MCS seem to get sick from every little thing.  They are over-reacting and need to loosen up.

Toxic chemicals truly are ubiquitous in the modern world.  They are nearly impossible to escape.  People with MCS are not getting sick from “every little thing”, they are getting sick from human toxicants. Often, symptoms are so severe that they cannot simply “lighten up”.  They have to protect themselves from the consequences of toxic exposure. It sometimes happens that people with MCS will go on a trip to the ocean or mountains, breath fresh, clean air, and begin to feel almost 100% better.  What does that indicate about the nature of this disorder?  What does it indicate about our society that we should have to travel many miles away from population centers in order to experience normal health?

Conclusion

The truth is that MCS is a scary, cruel, and relentless thief of health, relationships, careers, and even lives.  Yes, people really have died from it.  It should be taken as seriously as any other chronic, possibly fatal illness.  But it’s not.  And most of that seems to have to do with the greed and political meddling of powerful corporations.  It’s the story of Big Tobacco all over again.  But this time it’s worse.  Imagine what it would have been like if tobacco companies had found a way to weasel their cancer causing ingredients into so many commonly used products that it was nearly impossible to avoid them without educating yourself.  That is what we have now with artificial fragrances and other toxic chemical ingredients.

Some people with MCS have been able to get better.  But many others, in spite of persistent efforts and lots of money spent on healthcare, still suffer and must strictly avoid chemicals.  But whether they are able to recover their health or not, most of them will never be the same.  It’s like going through the looking glass into a bizarre world where nothing is as it should be.  They will never forget what they have experienced, or the people in this world who are still suffering.  To those people, I dedicate this post.  And I pray for their recovery and for the world to awaken to this disaster.

Additional Reading:

 Amputated Lives: Coping with Chemical Sensitivity

Multiple Chemical Sensitivity, A Mysterious Malady, Awake magazine

When Chemicals Make You Sick

Helping Those With MCS

Extreme Chemical Sensitivity Makes Sufferers Allergic to Life, Discover Magazine

Multiple Chemical Sensitivity: Toxicological and Sensitivity Mechanisms

Related Posts

Behind the Mask

Use Safer Products

Behind the Mask

OLYMPUS DIGITAL CAMERA

“We think caged birds sing, when indeed, they cry.” – John Webster

I’m very, very sensitive to chemicals; not just the ones everybody knows are dangerous, but the ones people use every day on their bodies and in their bathrooms and kitchens and on their sofas and in their yards. And what happens to me when I am exposed to those chemicals is not trivial. The sore throat and headache and heavy chest were uncomfortable, but not enough to stop me from living my life.

What stopped me was when I began to lose my mind. I don’t mean that I become overwrought and anxious.  I literally lose my mind when I’m exposed to chemicals. I mean, I lose IQ points. I become stupid. I also lose my ability to function normally due to exhaustion and pain.  Neurological symptoms such as numbness and tremors are also part of the mix. That’s not okay with me, and that’s why I avoid triggering chemicals.

The social implications are enormous. It’s not just that I have to be careful about what I use in the shower, or what I use to clean the toilet, although that’s part of it. It means I have to avoid other people who use the things that I can’t use. I can’t go into their homes or be close enough to them to hold a comfortable conversation. Public areas like places of worship and schools are very difficult places to be.

It seems like some people think, if they are aware of chemical sensitivity at all, that it takes a special kind of crazy to be this way. Because of the skepticism I’ve encountered and because I do not want to be defined by illness, I don’t like to talk about this.  In spite of that, I often find myself doing it anyway, feeling all the while like I’m treading on thin ice.  If I talk too long, eventually something will slip out that sounds like slap on the wrist:

“Yeah,  fabric softener really does me in.  I think it’s worse than some perfumes.”

My unfortunate victim looks away, searching for a graceful escape.  “Oh really?” she says, “I didn’t know that!” all the while thinking, What a loon!  I use fabric softener every day and I’m fine.

My face reddens as I quickly change the subject, mentally slapping my own wrist for creating an uncomfortable moment.

I have not had to stop meeting at my place of worship, the Kingdom Hall.  This is because I am allowed to sit in a back room with my air purifier and my family.  Behind a wall of windows, I am able to see and hear the meeting.  It is a blessing.  But I always wish I could be on the other side of the glass.

Sometimes I wear a mask to keep me well in toxic situations.  It gives a measure of freedom.  Without that little piece of carbon and fabric, driving our new-smelling car, exhaust fumes pouring in through the vents, would be out of the question. Using a fragranced public restroom would be a nightmare.  Even visiting some of my friends is sometimes made possible by the mask, but that is something I rarely do.  I’ll tell you why.

I hate the mask.  We all wear masks.  But the difference between the mask I wear and mask you wear is that yours is probably socially acceptable.  In his book The Love We Share Without Knowing, Christopher Barzak wrote that “nothing is more real than the masks we make to show each other who we are.”  The way we dress, the way we do our makeup or hair, and the expressions we wear on our face are all masks.  Sometimes they reveal who we are, and sometimes they conceal, if that is our intention.  But when I wear my mask, the only message I project to the world is one of fear.  The mask says, “I’m afraid.  The world is a dangerous place.”  But that is not what I want to say.

“When we know Love, fear has no value in our presence.  There is no pressure to perform and mask our humanity.” – E’yen Gardner

I don’t want to mask my humanity, I want to reveal it.  Oliver Wendell Holmes said that ” without wearing any mask we are conscious of, we have a special face for each friend.”  I want to reveal the special face I have for each of my friends.  I want my friends to understand just how happy I am to see them.  And just like I want to be able to look into the face of a friend and read his or her emotions and intentions, I would like for my friends to be able to see my face and read me as well.

“Masks were used to alienate and silence prisoners in Australian jails in the late 19th century. They were made of white cloth and covered the face, leaving only the eyes visible.” – Wikipedia, Mask

I would fit in here

I would fit in here

Masks tend to frighten us, and for good reason.  Faces reveal intentions.  We cannot read a masked face, and for that reason we associate masks with bad intentions.  Villains wear masks: Phantom of the Opera, Jason, Hannibal Lecter.  I frighten children when I wear my mask.  There is nothing worse than looking into a child’s eyes, seeing fear, and knowing that I am the cause.  That alone is reason enough for me to leave the mask in my purse.

What is the first thing that comes to mind when you see someone wearing a mask in public?  The first thing that comes to my husband’s mind is that the person is a thief or a terrorist.  He becomes very uncomfortable if he has to be seen in public with me in my mask, and I don’t blame him.  I’m uncomfortable being seen in public in my mask. Others have told me that their first thought upon seeing a masked person is that the person may have cancer or AIDS and needs protection from germs.  I don’t want people to think that about me.

And as if all that were not enough, carbon filter masks just don’t work very well.  They’re somewhat helpful for nuisance-level pollution, but they’re worse than useless in a truly toxic situation.  I once thought that I could enter a feed store as long as I had my mask on.  I was mistaken.  The mask was no match for the overpowering pesticide fumes.  I was sick for weeks, and it all could have been avoided if the mask had not given me a false sense of security.

When I forgo social opportunities that my mask might afford,  it is not because I like to be alone.  Something that has become more clear to me than ever before is that I love people.  Forced isolation has taught me that.  You tend to appreciate things far more when they are rationed.  If I were I dog, I’d be Dug from the movie Up:

“My name is Dug. I have just met you, and I love you.”

But just like Dug did not like his “cone of shame”, I do not like my mask of shame, and I long for the day when I will never have to wear it again.

I don’t want to be this way.  I’m not trying to make a political statement about chemicals.  My body does that for me.  I am an unwilling “canary in the coal mine” .

In my day-dreams I imagine myself surrounded by people: all my closest friends, my family, and new faces too.  On my face there is nothing but a smile and between me and my friends there is no glass.  I am free.

Helping Those With MCS, Awake! 2000

Good Health For All – Soon!

My Story

Photo by Patrik Jones

Photo of canary by tanakawho

 

 

 

 

 

 

 

 

Unsafe – The Truth Behind Everyday Chemicals

http://www.linktv.org/video/9214/unsafe-the-truth-behind-everyday-chemicals

This video may seem scary, but if it motivates you to toss the toxic products in your home, it’s worth watching. Toxic chemicals effect all of us, not just the ultra sensitive. But you can dramatically reduce your exposures. High exposure levels are not unavoidable.

MCS Under Seige by Dr. Ann McCampbell

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“Movies like Erin Brockovich and A Civil Action depict the true stories of communities whose members became ill after drinking water contaminated with industrial waste. Their struggles clearly show how difficult it is for people to hold corporations responsible for the harm they have caused. Whether individuals are injured by exposures to contaminated air or water, silicone breast implants, cigarettes, or other chemicals, their quest for justice is usually a David versus Goliath battle that pits average citizens against giant corporations.

When confronted with the harm they have caused, corporations typically blame the victims, deny the problem, and try to avoid responsibility for the harm caused. The corporate response to people with multiple chemical sensitivities (MCS) has been no different. People with MCS are made sick from exposures to many common products, such as pesticides, paints, solvents, perfumes, carpets, building materials, and many cleaning and other products. But the manufacturers of these products would rather silence the messenger than acknowledge the message that their products are not safe.

To that end, the chemical manufacturing industry has launched an anti-MCS campaign designed to create the illusion of controversy about MCS and cast doubt on its existence. What has been said about the tobacco industry could easily apply to the chemical industry regarding MCS, that is, “the only diversity of opinion comes from the authors with … industry affiliations (1).” “

Read the rest of the article: http://annmccampbell.com/publicationswritings/publication-1/#