Monday, December 30, 2013

Dr. Paul Offit on the Sense and Nonsense of Alternative Medicine

Things that seem to good to be true usually are, yet when it comes to alternative medicine far too many people put their faith in belief and testimonials rather than science. Dr. Paul Offit's must-read book, Do You Believe in Magic? takes on alternative medicine's producers and practitioners, explaining why their products and therapies are generally not better and certainly not safer than traditional approaches. Yet his approach is compassionate -- he understands that people want guarantees, hope, and sympathy, and will go elsewhere if traditional medicine can't provide those things. We talked with Dr. Offit about all these topics, as well as whether or not alternative approaches do have some legitimate benefits, and how his own thinking about alternative approaches changed while he was writing and researching Do You Believe in Magic?
 
TPGA: Many folks view the alternative medicine industry as a group of outlaw heroes, who give people safer and cheaper alternatives to the traditional medical industry. Do you think people understand that the alternative industries are not only hugely profitable industries, but have lobbied themselves into immunity from FDA [Food and Drug Administration] safety regulations? 

Dr. Offit: No -- I think very few people understand that these companies are under no obligation to support their claims or admit their harms. I think people assume that when they go into the General Nutrition Center or they buy something from Dr. Mercola, that supplements and vitamins are regulated industries. People assume that when it says 20 milligrams of selenium on the bottle, for example, that there's 20 mg of selenium in that tablet and nothing else -- and that's not the case. Ever since the Dietary Supplement and Health Education Act in 1994  -- which in the upside-down world of alternative medicine always means the opposite of what it actually says -- those industries can make claims broadly, and they don't have to tell you if the products are found to be quite dangerous. We've been hoodwinked! I think people don't realize that.

All I ask for in this book is that alternative therapies be held to the same standard as conventional therapies. And if scientific studies haven't been done, then we should insist they are done. We just assume that when one says 'alternative' or 'natural' or 'organic' that it's all good and can't possibly hurt us -- and that's not true.

What inspired you to write this book? You tend to stand up for science in areas where it gets muddied. Is this book continuing that tradition? 

I think all my books are the same, in many ways. They explore that area between science and belief. In previous books it's been the science that supports the safety or effectiveness of vaccines, and the belief that goes against that science, for instance the belief that vaccines cause autism despite all evidence to the contrary. That's always been something that interested me, and the same is true here. People hold onto [alternative medicine] like they would to religion.

The point of my book is that I think there's no such thing as alternative medicine. I think that if medicine works it's not an alternative and if it doesn't work it's not an alternative -- I think it's incumbent upon those people who are non-traditional healers to show us why in some cases their medicines might work.

Your book condemns quackery very strongly, yet you also allow that there is a place for alternative treatments. Why is that?

The book was originally titled Quacks, but I changed it because as I researched and wrote I learned there is something to be said for the placebo response. Acupuncture is probably the best example: there are a number of studies that show that it doesn't matter where you insert the needles, and it even doesn't matter whether you insert the needles -- studies with retractable needles show that acupuncture is of value. And so the question becomes "why?" Why is it that some people who undergo acupuncture clearly benefit, and feel less pain? And as you go further, you learn, for example, that people can learn to release their own endorphins, which are these chemical mediators that can relieve pain. So the whole mind-body connection is true! It's like the line that "the mind can make a heaven of hell and a hell of heaven." There's a therapeutic value to some of these non-conventional interactions.

Now, there's a big cautionary tale in this book, in that there are a number of places in which "alternative healers," if you will, cross the line into quackery -- the healer offers something that is presumed to be safe when it's not, or offers an alternative therapy in place of a conventional therapy that clearly does work, or when they take advantage of their patients financially -- which certainly I think in the autism world has been true. And then lastly there's this promotion of magical thinking -- when alternative medicine works, you don't have to look to magic or to the gods to explain why. Mehmet [Dr.] Oz said on his show recently that there's just some things we can't understand -- I don't think that's true! In the world of science and medicine you can understand it -- the issue is you may not understand it yet. But it's not because it's not understandable.

I really appreciated the story the end of the book, in which Dr. Albert Schweitzer was living and treating patients in Gabon, Africa in the early 20th century. He respected the local "witch doctor," because the witch doctor was fully aware of which patients he himself could treat -- those who mostly needed reassurance, those whose symptoms would resolve naturally -- and those he should send on to Dr. Schweitzer. It that the kind of line we need to be aware of in contemporary times? 

That chapter really represents, to me, coming full circle -- I did change my thinking in some ways in this book. I think that conventional healers, if you will, and conventional medicine brought this on themselves. There are many situations, for example, that we take care of diseases that are self-limited. We give cough and cold preparations that don't do anything but make you drowsy, and when you give them to children you can cause night terrors. So you could argue that giving something like a homeopathic remedy -- which will do nothing -- is certainly safe, certainly won't cause any problems. It's not going to make your cold get better any faster, but thinking that it might can help.

I think there's also no such thing as a mood any more -- everyone has an affective disorder that has to be treated with a pharmaceutical product. And we certainly injudiciously use antibiotics for viral diseases, which are self-limited. So I think in some ways we therapeutize too much with drugs that can be harmful and do have side effects and that are unnecessary. And in that case, one could argue, alternative therapies are going to be safer.

But then we have so many folks thinking anything natural or alternative is good, and anything associated with "Big Pharma" is bad. How do you think this black-and-white mindset develops? Do you think people want to be told what to do, and have decisions made for them? 

I think we want to believe there's something greater than ourselves. And you may be right -- maybe we don't want to think, we want to turn this over to somebody we see as "greater." If you look at the books that really sell well, books written by Deepak Chopra, Mehmet Oz, Andrew Weil -- the position that they all take is one of guru: "I'm going to tell you what to do. I'm not necessarily going to necessarily explain why it's important that this works." They don't say "here are the scientific studies that support whether it works." It's like the line "If you want to feed a man for a day, give him a fish, if you want to feed him for a lifetime, teach him how to fish." I think that these books give people fish and don't tell them where they got the fish from -- that's what seems to sell the best.

Take the New Yorker article on Dr. Mehmet Oz. The thing I thought was striking about that article is that Oz is just a hero, he's almost a Christ-like figure -- people just want to reach out and touch the hem of his coat. He's seen as this guru-like authority, and that's what people like -- they want to be told what to do by someone wise, who has been standing on top of a mountain for years -- I think that's the draw.

The kinds of books I write are never going to be like that. What I try to do is say, "Okay, how would you think about this? How would you reason through this? What kind of data would support one point of view or another?" I'm trying to engage into thinking about it, and I do it by telling a series of stories.

When you describe Suzanne Sommers and Jenny McCarthy shilling for quackery, it's not all that surprising since they are neither doctors nor scientists. But you also describe world-class doctors and scientists like like Mehmet Oz and Linus Pauling promoting alternative therapies, when they should know better! What do you think happens in the latter cases? 

One can only surmise. Linus Pauling was a brilliant, brilliant man, like Einstein; he is the only person ever to win two unshared Nobel prizes. But what happened to him, I think, is that he wasn't willing, at a certain point in his life, to admit that he could be wrong. I think that was his downfall. And so when he promoted megavitamins as being a cure for all things, including cancer -- and data became very clear that that wasn't the case -- he just simply refused to believe it. Which is not where he came from -- he came from rigorous science, rigorous data. But later in life, in his mid 60s, he … lost it.

With Oz, he clearly has an interest in being well known. And maybe, as part of that, he is appealing to what the masses like -- his show reaches millions of people every day. He's a brilliant cardiovascular surgeon, and a full professor at Columbia -- which you can't do without an enormous amount of intelligence. When his show started, I think he saw himself as someone who could show the masses how to think about medicine and science. But very quickly, his show devolved into being about better sex, better skin, living longer, increased energy -- the kinds of things people watching that show wanted to hear. And obviously alternative medicine is a huge industry, and he appealed to that industry. Certainly his wife, who is a Reiki master, I think influences him and is very much involved in his show.

Your book also features people like Rashid Buttar, who sells expensive "cures" for autism via chelation and other proprietary yet non-evidence-based approaches -- and how these people are able to rein in and hoodwink desperate parents with unproven treatments that can really be harmful. Can you talk about the dangers of using a treatment like chelation when it's not medically necessary?

Chelation is an important medical therapy for people who have been burdened with too much in the way of heavy metals, specifically lead and mercury. Chelation generally works by binding them [the heavy metals] and helping the body excrete them more quickly. But chelation doesn't only bind lead and mercury, it also binds elements like calcium which are important for the conduction of the heart, how one's heart beats. There have been a number of people reported by the Centers for Disease Control and Prevention who, when they've received chelation therapy, have essentially had heart attacks and died. It's a dangerous therapy, and when children really do have toxicity from lead or mercury, we do use chelation therapy under strictly controlled conditions -- we're monitoring their heart rhythm, and we're monitoring blood electrolytes so we can make sure we're not going to hurt the patient.

I guess what bugs me about people who claim [chelation] cures autism, and Rashid Buttar is one of those people, is that if it were the case, you'd think you'd be the first one to test it, to prove that it is what you claim it to be! But that's never the way it works. It's always based on testimonials, and people will likely shy away from studies that will prove that their intentions are ill-founded.

Yet Buttar absolutely refuses to test his "miracle anti-autism cream." I don't understand how people can put their faith in people like him. It's amazing to watch autism parents embrace quacks as "anti-heroes," people like Andrew Wakefield, or Mark Geier -- who recently lost his last medical license and can no longer practice medicine. It's really frustrating. Why do you think people support them? 

They successfully appeal to that sense of conspiracy that we all have, which is to say that there are those out there who mean to do us harm -- whether it's the government, or the pharmaceutical industry, or the medical establishment -- and they all use the same sort of appeal: What the government doesn't want you to know. What the pharmaceutical companies won't tell you. But I'm going to tell you, I'm going to be honest with you -- they are often an industry that is incredibly dishonest, because they don't admit their harms or support their claims. But they appeal to that entrez-nous, just-between-us sense of conspiracy. It sells, it has always sold, and it will continue to sell.

People who should know better, rational people, get taken in by this stuff. Do you think it's because it can be so hard to tell the legitimate science from the pseudoscience? Especially when it comes with charismatic guarantees? 

We want the magic medicine! We want to make it all go away. It's so easy to appeal to that, especially for disorders that are life-long -- people want to have that magic thing that makes it all go away. And it's such an easy appeal. I don't really blame the parents so much, because I see their frustration. I really blame the healers, because it's just so unscrupulous. There's a line in The Wizard of Oz, when the Tin Man wants a heart, and so the Wizard gives him this sort of heart-shaped clock, but tells the Tin Man that he doesn't know how lucky he is not to have a heart. And I feel like these alternative healer must not have hearts, because it's such a heartless thing to do.

Your book tells the stories of two Steves and their cancers -- Steve McQueen and Steve Jobs. Can you tell us how they both fell for alternative cancer treatments? 

One had a cancer for which medicine had little to offer, and one had a cancer for which medicine had much to offer. Steve McQueen had a mesothelioma that was fairly advanced. So that he would choose an alternative therapy, arguing -- reasonably -- that conventional therapy hasn't done much for this type of cancer, that you can understand.

That was not Steve Jobs's story. Steve Jobs had pancreatic cancer, but there are different kinds of pancreatic cancer. The one we all think about, the one that for example killed Michael Landon, was adenocarcinoma. But that's not what Steve Jobs had. Steve Jobs had a neuroendocrine tumor, and with early surgery he had close to a 100 percent chance of survival. But he chose not to have the early surgery that no doubt would have saved his life. Instead what he did is decide that he knew better, and he was going to treat himself with acupuncture, he was going to treat himself with bowel cleansings, with fruit and vegetable juices. And ultimately, by the time he finally did have the surgery that would have mattered, his tumor had metastasized and it was too late.

There's a perfect example of alternative medicine at its worst -- you take someone who could have been cured, and you make them much worse.

I live in Silicon Valley, so I see this a lot -- we have all these incredibly intelligent, methodical thinkers who think they understand science -- but they don't. They use case studies to "prove" their points with alternative medicines, without understanding that you can do a case study for any hypothesis you choose, and it proves nothing unless you've replicated the results. So people with engineering or technical science backgrounds are essentially putting their faith in testimonials. What do you think is responsible for this disconnect? 

I think what happens with people like Steve Jobs is that they suffer is the sin of hubris. He's typical of the people you describe in Silicon Valley -- smart, well educated people, usually at least college educated, often college and grad school educated, who generally have professional jobs where they have a fair amount of control. And I think they assume that because they have mastered their field, therefore they can be a master of any field -- even though they don't have the experience or expertise in a particular field. So in the case of Jobs, I think he believed that he could look on the Internet, read people's opinions on his particular cancer, and know as much as his doctor knew. I know he had a number of friends in the Silicon Valley area who pleaded with him not to do what he did. So it wasn't that he didn't hear what the right therapy was -- but he just knew better. He just knew more. You see the same kind of thing in the anti-vaccine community. It's the same kind of thinking, and it's the same kind of background -- it's the sin of hubris. They assume they are independent, and know more than the expert may know.

It's very difficult, particularly in the health care world, for people to call themselves experts, in some ways. You want the patient to be involved, you want them to be active in the decision-making process, and so at some level then you do cede your expertise. You're willing to say, "Let's make this decision together," even though arguably you're the one who should be making the decision. When I was little, my pediatrician (back in the days of house calls) would come over and tell my mother what to do, and she never dreamed of questioning him. Whatever he said, went, he was the doctor.

It isn't that way anymore, for good and bad. I had eye surgery recently, and the ophthalmologist said, "Look, we can do it medically, here's the medical option; we can do it surgically, here's the surgical option, what do you want to do?" Like he's a waiter in a restaurant! I mean, you tell me! You're the expert, you're the one with the experience. But he felt like, in order to have me buy in, he needed me to make the decision.

Your book also discusses the dangers of overusing vitamins, and this whole industry based on selling people vitamins they don't actually need. When can vitamins be dangerous to your health? 

I'd like to make a distinction between a multivitamin and a megavitamin. Vitamins are not something our body makes, but they're something our body needs, and we need to get them from food. Doctors and nutritionists have determined the necessary amounts of vitamins you need. Given how much vitamin supplementation there is in food, people who have a reasonable diet get everything they need.
Now the biggest surprise for me in writing this book -- and that's why the first couple of chapters are devoted to this topic -- is that megavitamins, meaning those with 150 percent or more of the RDA or Recommended Daily Amount -- can be harmful. I would have never predicted that, but study after study shows it. And I actually stopped taking vitamins after I did all this reading, because I became scared.

If you take excess vitamins A, E, betacarotene, and selenium, you definitely shorten your life, increase your risk of heart disease, and increase your risk of cancer. Because what you're doing is shifting the balance of oxidation and anti-oxidation in your body. Although oxidation certainly creates free radicals that can damage cell membranes, and damage DNA, you need oxidation for certain things like recognizing and killing microbes, and recognizing and killing cancer cells. If you actually blunt your oxidation response, it makes perfect sense that you actually could decrease your ability to kill new cancer cells -- which we probably make all the time and kill in our body all the time. That was the surprise for me.

The other surprise was why people don't know that vitamins are an unregulated industry. So I got into the politics of that, and the hearings where basically the industry was able to remove the FDA from regulation, much as the dietary supplement industry has done. People think that this gives them their health care freedom, but all it does is give them freedom from knowing about what they're using.

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A version of this interview was previously published at BlogHer.com.

Friday, December 20, 2013

Keep the Season Bright (Despite Being Light-Sensitive)

Emily Brooks
www.emilybrooks.com

Winter holidays are all about people. And as hard as that is for me as an adult with autism spectrum disorder (ASD) and anxiety disorders, that’s also why I love them! In the hope that other adults or teens with ASD can benefit from my mistakes and experiences, I’ve compiled my tips for dealing with the holidays.

Give When You’re Out of Money and Ideas

If you’re like many adults with ASD, you struggle with employment or finances. Try not to panic if you can’t afford expensive presents. When choosing and making presents for your loved ones, it’s keep in mind that gifts are less about the actual objects and more about showing people you care.

If you have a little money but you aren’t sure where to spend it, search through cheaper stores to find fun items. Used bookstores often have a dollar-book section and websites sell other people’s books and DVDs. Thrift shops, yard sales, stoop sales, and dollar or discount stores offer less expensive toys, clothes, and knick-knacks.

Or do it yourself! Homemade cookies in a plastic bag, collages, cartoons, paintings, music recordings, and poems are thoughtful, personal gifts. Even if you can’t draw a stick figure, you can recycle old magazines into homemade wrapping paper.

“Coupons” representing gifts of time or service -- completing somebody’s chores, walking somebody’s pets, taking somebody to a concert, fixing somebody’s computer, or teaching somebody a skill—are another classic. If you go with coupons, be sure that you follow through. There’s a saying when people fill their plates with twice as much food as they need: “Your eyes are bigger than your stomach.” Akin to that, I’ve had “Your heart is bigger than your brain” moments where I gave spectacular coupons but never ended up acting on them. Also, be sure that your gift isn’t something you’re already expected to do in everyday life.

A gift isn’t about us; it’s about the other person. If I’m unsure about what a relative likes, I ask them or someone who knows them well. With key information such as their favorite animal, color, and hobby, I can choose or make any number of crafty gifts that they will appreciate. My great-aunt loves birds, so this year, I’m painting her a bird on a blank book.

What do you get the person who doesn’t want anything you can afford or make? Be creative! Last Christmas, I gave one of my teenage brothers a charity greeting card. It represented manure to support families in developing nations with their farming needs. I filled the card with jokes and the gift was a success. (A caveat: This would not be an appropriate gift for anyone besides close siblings and friends.)

All bathroom humor aside, giving to charity is a nice gesture, and some sites have charity donation options as little as a couple of bucks. There are options to support wild and domestic animals, education, medical care, disaster relief, human rights, the environment, and disabilities! Try to choose something that aligns with your recipient’s belief system, not your own—a relative who avoids places of worship won’t want a gift of Bibles to kiddies, and Barack Obama’s biggest fan won’t appreciate a donation to a conservative group.

Charities often give you a free greeting card, but check whether you have to print it or if it will arrive via the postal service. To keep stress low, be sure to check the shipping time so your gifts arrive on time. Take travel plans into account. If I’m leaving on the 17th, it doesn’t matter if my gifts will arrive by the 23rd, since I’ll already be gone. I’d prefer to expedite shipping or have it sent directly to my parents’ house and order them not to open the package until I arrive!

Work the Holidays Without Working Yourself into a Dither

At the office, December is the month when interpersonal relationships skyrocket, which can be pretty scary while on the autism spectrum. Add holiday parties and the office politics of greeting-cards to “normal” workplace stress, and I’ll work myself into a dither.

I have a tendency to sometimes overshare, which is disastrous in employment situations. For instance, the nonprofit I work for was talking about donations, and it reminded me of the story of the card that I gave my brother last year, which in turn reminded me of what a good idea it would be to start a charity greeting card program at our company. Instead of simply explaining that we could link donations to holiday cards, though, I launched into the whole story, right down to the fact that the card I gave my brother represented a gift of manure to farmers. My workmates seemed shocked that I brought this up at a meeting and joked about how I must feel about my brother if I “gave him poop for Christmas.” Long story short? Make the long story short. If I had stuck to the point instead of going through all the details, I could’ve saved myself the embarrassment.

It is good etiquette to give a card to your bosses and people who help you out. That doesn’t mean you have to stress yourself out and write one for everyone in your neighborhood, town, school, day program, or company. Ask what holiday the person celebrates, or stick with something non-religious like “season’s greetings”, snowmen, or cute winter animals. Chanukah happened earlier this year than Christmas, but that doesn’t mean you can’t give people belated wishes. Stay appropriate with your greetings. You don’t need to say everything you think, especially if it involves wanting to be BFFs with your awesome coworkers.

Homemade holiday cards warm people’s hearts more than store-bought ones. Be aware of different levels of relationships and what sorts of cards they warrant, though. At a former job, I spent hours making all of my coworkers and bosses personalized cards for several holidays and occasions. I later realized that my team members did not care about me as a person, much less consider me a friend, so I no longer throw all my time into winning every acquaintance over through handmade greeting cards.

Realize you may be required to work holiday parties or events. As a representative of your company, you may need to talk to customers. I think out what to say and practice in advance. A script can help me to get through the initial fear of approaching customers. Also realize that you have to request days off in advance. That said, stand up for your rights -- calmly and respectfully -- if you feel your employer is breaking your contract or overscheduling you.

Don’t wear the same outfit twice because it’s considered bad hygiene. I recently realized that my team members can’t tell that I am wearing clean clothes when I wear the same hoodie every day, so I’ve taken to switching off my sweaters.

Travel When the Sleigh’s Jingle Bells are Too Loud

Transportation gets hellish around the holidays. Plan ahead, leave extra time, and don’t take the last possible train home, because if something doesn’t go right, you’ll be stuck. Making alternate travel plans is important. I learned the hard way that taxi cabs won’t save me from my executive dysfunctions if I am on time but forget to bring cash to pay the driver!

If there is any way possible to reduce your sensory issues on subways, trains, and buses, do so! I have a hard time when the subways and city buses get crowded. With more tourists exploring my city around the holidays, rush hour becomes a nightmare. Because there is too much stimulation, I sometimes panic and get off the subway or bus before my stop. During travel, I’m more sensory-comfortable when I wear noise-cancellation headphones, bring a pompom to fidget with in my pocket or a logic puzzle or word game to play, and remove my jacket before boarding a heated train car.

If you’re like me, you live somewhere that gets chilly in winter, yet you can’t rely on your sensory system to tell you if you’re hot or cold. The other day, I decided not to wear a hat outside. Then it snowed, and I was sorry. Wearing layers and keeping a hat, a scarf, and an umbrella in my messenger bag keeps me prepared for constantly-shifting winter weather.

Interact When Anxiety Flies Higher than Santa’s Reindeer

Family gatherings can provoke anxiety. We usually attend a giant after-Christmas party with dozens of aunts, uncles, and cousins, not to mention dogs and cats and clinking glasses and a piney tree and flashing cameras and television and music. How do I start a conversation with my cousins or end one with someone’s neighbor? What’s in that pudding and do I really want to eat it? And how can I have fun when I feel like hiding in the attic?

Yes, it’s a lot of sensory input and socialization, but the truth is, I love family reunions because I love my extended family. So I bring a bag of things to do -- a book, a journal and pen, a music player and headphones -- for when I need to chill out. If I get too overwhelmed, I take a walk in the cold air. When I take enough breaks to disengage, I can enjoy spending time together with large groups of relatives!

In general, I like to eat food and drink water before and during travel, work, and holiday events. Otherwise, a forgotten stomach can add to my anxiety. Bringing copious amounts of your favorite food to share makes you look like a generous guest while caring for your own needs.

Manage Issues So Decking The Halls is Fun

Managing anxiety is easier when I have more control. Because I get nervous when I don’t know what I’m doing, I use my schedule to plan out my holiday season. In your schedule, don’t just pencil in tough stuff like work or travel. Plan in fun, too! Whether it’s seeing your friend, researching your special interest, treating yourself to cocoa, or taking a hot bath, your version of “fun” belongs in your planner surrounded by smiley faces and exclamation points!

One of the hardest things for me to admit is also the biggest relief: No matter how hard we try, there will be something that goes wrong, and no matter how well we plan in advance, there will be something that throws us off. So give yourself permission to have your meltdown, but afterward, go with the flow! We can’t control what happens, and sometimes we will have to put up with uncomfortable situations.

When confusing and spontaneous things occur this holiday season, don’t blame yourself for having a brain that appreciates the subtleties of structure! Handle it in stride. You are competent and way more adaptable and holiday-savvy than you ever realized. And if the Christmas lights are too bright? Squint, hide under your hat, pull out your sunglasses, or look away. Everything is going to be okay.