have anything on paper in this planning at that level, but i had a conversation that he said that if they were going to expand, it wouldn't be in berkley. they might have branches around the country, and, again, this is, he didn't say it off the record, but he didn't say it with conviction that this is happening, you know, thinking way in the future, and the other idea they have in terms of education is not to reach forward in age, but reach backwards, to reach younger kids and establish islamic high schools or relationships with the islamic high schools, and there's a lot of those around the country. >> well, i am so grateful for all of you to be here and to ask me and have the questions and to listen to the reading.

i will be sticking around to sign books, if you'd like, and anyone who would care to may join at an establishment, the parlor on thompson street between 3rd and bleaker, and we'll be there shortly, all right? thank you very much, appreciate it. [applause] >> next, lori edwards reports on the over 133 million americans who live with a chronic illness which constitutes about three-quarters of all health care dollars. the author examines the obstacles the chronically ill face like the limits of medicine, skepticism about

illness, and criticism that many have diseases that could be prevented. this is about 45 minutes. [applause] >> hello, thank you all for being out here tonight. so much of the writing process takes place alone, or when the rest of the world is sleeping, so it's nice at this point in the process to be out and connect with rairds and see people, especially at such a great venue, nice to see it come full circle because when i was a graduate student at emerson, i was here all the time. it's really nice to be here. i'll talk briefly about the book itself, overall, and then read two passages, and then hopefully have good discussion and answer questions. two questions i get a lot lately are why this book and why now? quite simply, we can't afford to

ignore chronic illness. 133 million patients, as you heard, live with croppic illness, and by 2025, the number is expected to reach 164 million. it is responsible for seven out of every ten deaths as well as three-quarters of all health care spending, but it's so much more than that. so much more than the statistics and economics. chronic illness is not something that happens to other people. the numbers tell us it will happen to most of us or people that we love, and there is still underlying assumptions and misconceptions about it that are problematic. for example, there's still this idea that people who are sick are sick through their own fault. current examples of aids or type 2 diabetes get a sense of that. in this underlying idea that people with chronic illness are somehow weaker, and this is amplified in the way we treat

women in pain, for example, who are often told their pain is either in their heads or that they should simply push through it. scholar historian asserts that disease is as social -- is a social development no less than the medicine that combats it. this is true centuries ago. when disease was thought to stem from imbalance of human bodily fluids, when infectious plagues blamed on devine retribution. when people with tuberculosis were shipped off, or when diseases like multiple sclerosis were near -- nervous or hysterical disorders. there's origins of illness, the ways in which society responds to it, are not so far apart. in the kingdom of the sick is a social history of chronic illness in america because i found it was impossible to extra kate the experience of the living with physical illness from the competing forces of

culture, social norms, and technology that surrounds patients. this was a social history as activism as it is a social history of disease because it was equally hard to tease out advancements in treatment and research from the patients and advocates that taught tirelessly for them. it is a chronological book that focuses on post world war ii america, which was a time of, quote, irresistible progress, between antibioctoberrics and vaccinations, we had control over acute, infectious diseases and thought we were a step away from curing everything that ailed us. at this point, we were living long enough, we were not dying from commune diseases, that chronic disease emerged as a public health priority. as you heard in the introduction, i'm a lifelong patient myself, and these experiences informed the writing

of this book. i have a rare genetic respiratory disease, which is a mouthful, so people just say pcd, if they say it at all, as well as other chronic illnesses and teach writing for the health sciences at north eastern and told the title from a quote from an essay i forced my freshman to read, illness is the night side of life, more honors than citizen. everyone born holds dual citizenship in the congress dome of the well and sick. although we prerve to use the good passports, sooner or later we are abliged, at least for a spell, to identify ourselves as citizens of the other place. for me, writing this is a blurring of all the different divisions and crossovers as a health and science writer, as a health science writing instructor, as well as a patient, so that's a little bit about the book in the context of that, but from the first passage

i'm going to read is from chapter 4. as i mentioned, it's a cron loming call book, with brief background, picks up in the 1940s and 50s. in the early chapters, i explore patient rates, medical ethics in the various social justice movements of the 60s and 70s. the civil rights movement, the disability rights movement, and the women's health movement, and their influence on chronic illness in modern day doctor-patient relationships. of all themes in the book, the relationship perhaps is most compelling or resonant. the shadow lingers today in the it's all in your head mentality contributes significantly to delays, diagnosis in treatment of many croppic and auto immune disorders, particularly in pain conditions. i talkedded about this on fresh air in the robust response that continues to pour in shows just how many people are affected by

this. for example, women are three times more likely to develop auto immune diseases. two and a half more times likely to develop rheumatoid arthritis, four times likely to have chronic fatigue, and nine times likely to be diagnosed with fib bra myalgia, and not only develop pain, but more sensitive to it, and research shows women are likely to have their pain dismissed as emotional or psychogenic. when nay are treated, it's less aggressively than men, and women are likely to be prescribed an depressants where men are prescribed painkiller ifs symptoms. most books have an segment where patients have the context for the history and analysis to follow. i'll read now from chapter 4. in this passage from the women's health movement, you'll hear from a young woman with crones

disease, as well as melissa, another woman who suffers from chronic fatigue, fiebra myalgia, and other conditions, and dr. sarah whitman, a psychiatrist who works with patients with croppic pain, and dr. joe wright, an internist at beth israel who did a lot of research on the early aids movement, so, "she has a 28-year-old woman living with crones disease. when she first began her diagnostic journey, she was a middle school student with stomach pains. she underwent a variety of tests from x-rays, hopeful each step brought her closer to the answer. when the test and consultations initiated her into the world of

patienthood, they also signaled the start of an unfortunate, but all too common cycle. dealing with the dismiss sal of her persistent symptoms. she was told she had reflux disease, but when problems continued, so did the tension. as the years went on, the dismiss sal took on a problematic vent. as her physical symptoms were attributed to her emotional problems. at the time, my parents and i were told the symptoms were caused by stress. i heard this for years, right up until i was zigged with crones as an adult, and, in fact, i heard it suture that until last year, i was convinced i was making myself sick because i could not control my life, or worse, i was making up the symptoms for attention, she says. in story line evokes outdated images of emotionally raw women attenned to with salts and placed in darkened rooms, images in historical attitudes of

female patients, hysterical patients that originated from the word, histra, meaning womb, once believed it was caused by the womb wondering through the body. victoria attributed this to app imambulance of sexual organs and the brain. problems we regard today as associated with hormonal fluxuations were prominent in the diagnosis of hysteria. this belief reaches back much further in history. as we know, medieval perceptions of women painted them as weaker versions of men and monthly cycles were evidence they were leaky vessels, inferior to men physically and emotionally. this association between hormones and character is one that follows women well past medieval or premod earn times. the doubt about her symptoms

chipped at away at her confidence, combined with her age in the accompanied assumption that young people are not supposed to be sick, exacerbated the underlying problems. by the time she was in college, which is when she had is now now her true crones flair, she is experienced a worsening of the reflux disease. whenever i saw the university health center doctors about the pain and the abdominal pain, they focused just op the reflux, she says. i felt timid around doctors, particularly men, which they often were, and my fear is about my, quote, made up symptoms caused me anxiety when i needed to get checked out. usually, i min mize the pain because i didn't want to be perceived as whiney and weak. the fact i min mizeed it made it easier for doctors to dismiss it, she says.

melissa mclaugh lin, another patient, considers lack of confidence has been an instrumental part of the long and unproductive diagnose not tick journey. i was a shy and quiet 15-year-old who brought her mother into every appointment, she says. originally because the brain fog made concentrating and remembering difficult. they just didn't take me seriously in any wayings sme says. part of it is my age, being young, shy, and unsure of how to stick up for myself, i often found i leave app appointment in tiers feeling belittled. for years, it didn't occur i can argue with the results, even if they were contrary to what my body was telling me. i was a good girl, she says, a hard working, straight a student, and i was determined to be a good patient, to do everything they told me to do because this was my only shot at getting better. i said it was about six years

into things mid way through college i decided it was up to me and not up to them. something was making me worse, i could stop doing it, even if the doctors told me to keep doing it. if i could go back, i'd change that. the sense they had all the control, not me, she says, honing in op one of the most important elements of female party hood, the balance of power in the doctor-patient relationship. as a psychiatrist working with men and women in pain, dr. sarah whitman reminds us this imbalance of power ape skepticism has far reaching roots. historically, when women reported medical symptoms, these are not taken as seriously as when men describe complaints. for example, she says, research has shown when men and woman report equivalent cardiac symptoms, men receive more thorough evaluations, and for equivalent cardiac disease, men receive more aggressive and

definitive treatment. a woman reporting pain may be more likely to be dismissed or have her symptoms down played. there's symptoms unique to women, she adds, like pell vine pain disorders that are underresearched and difficult to find physicians with appropriate experience to treat them. the lack of training and clinical experience perpetuates the cycle. if women are not diagnosed correctly because their physicians don't know what to look for, the symptoms worsen, which can have profound emotional effects as well. from there, it is not a human leap to write their pain or symptoms off as hysterical or psych psychojeepic. when thinking about the issues with physicians, part is the process of struggling with the power relationship that happens

when we go to doctors. from the perspective of patients, they feel that, quote, i had social power until i walked into the room. we see physicians when we are sick and vulnerable and their assessment of what's wrong with us has the potential to validate or denigrate our experiences. after they questioned dynamics of what happens in the exam room, there's a real tension about what we want from the doctors and from medicine, dr. wright says. it's hard to make the individual experience political. it is about what people with disabilities did. it is what feminists did. it is what people with aids did when each of the people revised their relationships with their doctors. putting individual experience into a broader context enabling change to happen. >> the second passage shifts

gears a little bit this chapter 7, modern day in terms of chronology looking at technology and social media. we can look at the influence of research and better treem and more refined methods and better diagnostics, and all of these yielded significant and incremental breakthroughs with parties of chronic illness, but we can't overlook importance and impact of the internet and health 2.0 technologies, any social media, interpret platforms allowing patients to connect with one another and health care providers to exchange health care information. patients blog and connect with each other that way, share experiences and advice, advocate, and more and more, being able to share information immediately and have it spread virally sets up a division

between the old guard and establish a slow pace of research and publication versus the guard of social media. you imagine if you are the cdc working tirelessly to combat the association between vaccines and autism bringing bout medicine to prove there's no link imagine trying to compete with jenni mccarthy; right? the new guard; right? she has the loudest mouthpiece on the issue, so that is the challenge that we fashion in terms of accessing and sifting through what is good and bad information. this is from chapter 7, called "into the fray," dealing with patients in the digital age. materials of the longerrer scope of the book, as i mentioned, we started in world war ii americaing in the process era, had a little bit of hubris about medical science, really did believe it was on the cusp of

everything, the gold standard, telling us all that we needed to know to feel better. now there's a really compelling pendulum shift if you look in certain party circles where the science, itself, and the integrity of the intieps itself is questioned. in this chapter, i examine chronic lime disease and autism within the context of how social media and the internet altered the course of advocacy and what the examples illustrate in terms of the larger complexities of present day illness. now, as you can imagine, chronic lime and autism are complex topics, books and boxes have been written about each of them. i really did try to keep a narrow focus and look at how has the internet changed this, would we see this two decades ago without the tools? that was my purpose. i was not trying to retell the story or recast the story as it were. the following chapter, 8, looks

at the movement, empoweredded, e quicked, and engaged, and as a model for working for change in collaboration within the medical system how individuals are informed to help consumerred and advocate for themselves to have access to the health information when this chapter 7 is about how groups and patient advocacy groups use social media to work without -- without out of the medical system. it's within med sip, and so in this passage, you hear from jennifer crystal, a graduate student here at emerson, but can't be here tonight because she's in class, but working on a book about lime disease, and she has suffered from chronic lime for years, so this is a bit of the story and fits into the greater scope.

for jennifer kiss call, a 333-year-old woman living with lime disease and two of the coinfections, life changed dramatically with one tick bite in the summer of 1997. tick season right now, so relevant; right? it was the summer before her sophomore year, and she was working at a camp in maine. i remember everything changed that summer in camp, she says. i came into the dining hall after a long morning of life guarding. suddenly, the room started to spin. i got dizzy, shaky, and hands clammy. everything seemed very far away as if i were looking through a tunnel. they suspected hydration, but when they heard i was hydrated, it was a loy sugar reaction. that was the first of many, and soon i had high to glioseem ya.

i never heard it -- of it. it never made sense to me or the doctors why i suddenly developed it, but nobody was overly concerned with finding the answers, she says. there were years before tracing did back to the summer and tick bite, but that was not at all unusual when it comes to lime disease. the controversy surrounding the diagnosis of chronic lime and the schism caused between the patients who say they have it and the factions of the medical community who disagree with the diagnosis, the symptoms, and the treatment represents what is now a well-established pattern when it comes to chronic illness. patients who report symptoms that are hard to explain in a space opening up for questions and skepticism. because like many contemporary

illnesses, there is evidence of lime disease, except when there is not. it is more common than hiv and aids and as politically mired. it is the most common vector born illness in the country transmitted through a bite. between 1992 and 2006, reported cases of limb disease more than doubled topping 250,000. according to some estimate, up to 20,000 new cases are reported annually; although, patients and experlgts think the numbers are higher since lime is often mistaken for a croppic fatigue, rheumatoid arthritis, multiple sclerosis, and so on. its politics, patient advocate community adapted quickly, and collages to evidence based medicine make chronic lime a

revealing portrait. along with hotly debated topics like the association of autism and vaccines, they played out online for much of the past decade. comments and postings complimenting or replacing all together the protests of decades past. in the case of the conditions, it's not so much the research is just emerging, instead, often the research economists, but the strength of the science at issue, and they fuel criticism and analysis for better and for worse. in the 21st century, mobilization in protests take place virtually, technology unites people with like minds and like causes. the rapid shift to a digital world influenced how and where we work how we spend time and transform thoughts into action.

one's self mutilation in december of 2010 in response to a protest in tunisia sparked protests in egypt, libya, and syria. technology like facebook, twitter, and messager helped protesters organize, helped the movement spread the message, and helped the world gauge what was going on. while digital advocacy has not turned virtual collaboration into interperson protests in the dramatic ways the arab spring example show, there's enormous influence on changing how we find, use, and spread insertion. for example, 80% of internet users, keep in mind, three-quarters of all u.s. adults are regular internet users, searched online for information on any of the topics like a special disease or treatment. 34% of internet users utilized

blogs, websites, and online news groups to read commentary about other people's health experiences. as controversies over disease illustrate, we have come a long way from the mid-0th century hubris over medical science capabilities. rather than believing medicine and science can and will conquer what ails us, many of us question it. in turn the same parties face increasing scrutiny too. now, virtual collaboration in information sharing have groups that many benefit, but the spline side of the mobilization comes with the condition that the message must be accurate ind the information reliable. thank you. [applause]

hopefully there's time for questions at the end of the reading if nip has any. yes, do you have a question? >> do you believe men are medically stronger than women? >> that is a great question. i don't believe they are medically stronger -- >> repeat the question. >> question was do i believe that men are medically stronger; right? is that what ewe said? >> yeah. >> i believe that they are fizz logically different. i think our bodies are made differently, certainly, and that influences how med sips work, influences the diseases that we get, and that influences how people perceive us, but i don't think they are medically stronger, but that we have different needs and different problems. good question, very brave. other questions? yes? >> i think you made very clear the difficulty of having these

types of diseases diagnosed. i'm interested in, since you're a person who has what, what the day-to-day is like if you are chronically, consistently, not feeling well? >> okay, well, that's a good question, and i think i should say that question was what is it like day-to-day with live with something that's not going away; right? chronically not feeling well. i believe that the illnesses unit us more than disease specific symptoms divide us; right? if you're not feeling well because of the pain or you have overwhelming fatigue or because, you know, you're a diabetic and blood sugar is out of the control and there's sweaters on your teeth, but you're not feels well or participating in life the same way, so what makes croppic illness challenges is that it is this base where days you are more well, and other

days you are not at all, and from a societal stand point, that's hard to understand. how can you look okay today? how can -- you don't look sick; right? i mean, that's a big line that people who are chronically ill get, well, you don't look sick. i think that's part of the challenge, and i think that it is e question of negotiation, i think. i think few learn early on when you have a chronic illness you have to make choices, you're not going to have the same energy or stamina so pick and choose what gets the best from you every day, and some things slide. i think it's the waxing and wapping that is actually more difficult because most people, fortunately, i hope, are never miserable every minute of every day, and it's like wince you get the taste of feeling better that's it's harder to adjust to falling down again, so other questions? yes? >> in what ways do you foresee

medical facilities promoting the use of technology and improving the party experience in med sip overall? >> great question. that's about how the facilities utilizes technology and do you mean from a research stand point or from a social media? >> doctor-patient research, either way. >> i think there's a really good movement right now in collaborative care, and there's actually a rallying cry in the movement to have patient's help. i think there's an increased understanding of the need for collaboration so that the party is the best narrator of the symptoms, and you are seeing more of that, more engagement, you know, institutionally, and the cdc, for example, as an active twitter feed. hospitals are live tweeting surgeries, not all about twitter, but it's an example of this emerging interface, where they want to connect and share

research, and you're seeing a lot more actual research articles accessible online quicker instead of waiting months and months, the abstract at least are out early, and that democracyization of that information is huge, absolutely. i saw another hand. yes. >> to the same point, have you learned about any differences in training of the physicians or nurses or any schools that are taking on a more collaborative approach in training of the care providers? >> that's another great question. we are seeing a lot more emphasis on the patient voice, look at columbia, university, for example, a well established program in narrative medicine having all the medical students read patient stories and write their own stories because that really backs up the belief that if you can empathize with suffering, then you're a better

provider and able to get more from the patients so that's one example. if we look at, say, alternative medicine, which millions of americans use, but only 61% admit to their doctors that they use, there's been a big surge in schools training people to fashions to understand, even if the evidence based medicine is not what they would like it to be, acknowledge patients to do it and talk about it. social media training in general and how patients use that is on the rise and there's a great black just published about how physicians and health care providers can use social media for better care. it's just this past month that they published a book about that. there is a lot more understanding of the need in for collaboration. we're seeing it in mainstream media more, and that's a good

thing because that trickles down so if you look at, say, the new york times, that's usually about bringing in the patient voice, and from the front lines, and any time there's a great nursing anthology that came out, enand i wish i knew the name, but people talk about stories and empathy, it trickles down. it's about respect. it's respecting what the parties bring so medical and physiological expertise and lived experience of your own symptoms, so, yeah, any other questions? yes? >> do many people with chronic illness experience depression? >> yes, yes. it is -- it is, absolutely, and rates are higher in the sort of what they are called negligented

pain disorders so for women because if you don't know what's wrong with you and people don't believe you and not working because you're sick in bed and people say you're crazy, you get depressed. it's a vicious cycle. it's actually something e wrote about the other day. in may, there's a new diagnosis in the dsmb5, the diagnosis manual for mental health, and in the new diagnosis is is symptom disorders and if you're a patient with a physical symptom for six months coupled with heightened anxiety or hyperfocused on symptoms or hyperanxiety, you could have a mental illness. it's a big problem. what some people see as a natural reaction to a major life disruption could be characterized as mental illness. people have depression, but often it's as a result of the untreated ill bses. yes, question in the back.

>> chronic illness is not only mental, but neurological disorder. how it separated in this society neuroloming call, disorders of affecting chronic illness versus mental illness because some neurologists are usually, when you go to them, they rise like menial diagnose and neglect others. >> the question is about the distinction between neurological disorders and mental illness. i think that's a really tough line to navigate. i think there are many disorders that present with similar symptoms; right? it goes back to are you getting the appropriate diagnosis early enough to get appropriate care? working with people who are

committed to finding out what's wrong with you? challenge is if you talk about the staig ma with physical and mental illness is greater; right? that muddies of water too. yes? >> following up on the last point made in the dsm, people are going to be categorized as having a mental illness with chronic pain, but because they are not taken seriously, how is that a benefit to anyone? you know, how -- will they be more likely to seek treatment with diagnosis? >> if they have a diagnosis of -- >> of, like, a mental -- if they say i've been sick for six months, focused on it, and i'm hyper aware of it, and the dsm will have a category for that, saying you might have a mental illness, who does that benefit? >> well, no one really. i mean, i think it was well intentioned. the point behind it, and i spoke to a lot of people who were on the committee before critical of

that particular manifestation, and the point was to try to catch the people who needed mental health intervention, but the problem is the application of it, i mean, millions of americans, i forget, up to 7% of the population, stand to be potentially misapplied with the diagnosis so it is contentious, certainly, and i think there's a lot, for women who are told it's in their heads, it's a nightmare. >> exactly. >> yes? >> a financial benefit to the patient to have health coverage? >> well, it could be, but they could -- if they have a preexisting condition, it's diagnosed, that could also cause problems too. it can increase stigma in employment if their diagnosed as having a mental illness. a different kind of stigma, certainly, but yes? >> there's a risk with the new

zigs -- diagnosis of people with serious illnesses misdiagnosed with the mental illness. how many people would fall into, who say would have something, like, ms or heart disease or diabetes who might fall into -- >> yeah, that's a great question. any research that could show the potential danger of this misclatification? one failed study so far, and it has shown -- i think it was -- i forget the exact statistic, but 7% could be misclassified, but within the study, patients with heart disease and cancer were captured as having mental illness rather than physical conditions. there was one failed study, and i have a link to it in an article i wrote, but the exact break down of that i can't remember, but there were three conditions that were missed and

told they were mentally ill, not physically ill. yes? >> how does that affect conditions that are so difficult to diagnose like chronic fatigue? i mean, you could suffer from croppic fatigue for a long time before being diagnosed appropriately and even like myalgia and even lime disease if the doctor's not on top of it, so you could have that for a year, two years, and they might fall into that. >> well, and i think those are the patients at greatest risk, absolutely because they are hard to diagnose, lacking lab work for answers. they are already predisposed to not be taken at face value, and they are not responsible for the pain any way so they are at greatest risk. >> right now, is the impies way

to diagnose lime disease through a special blood test? >> well, that's actually not an easy answer as you would think. there is a blood test for it, the western blot, but what many parties say, and groups say the standard for the tests are not -- are not as complete and thorough as they need to be so it misses people who have it, plus, a lot of people don't get tested because you don't get the bull's eye rash. there is a characteristic rash that signals lime disease, but many people don't get it, and the symptoms are so diverse that, you know, you have sort of a warm joint, achy, tired, well, that can be a lot of things, so it is very complicated, and there's a lot of conflict of interest, things tossed around in terms of chronic lime and parameters of the testing too. it's controversial to treat

croppic lime because the standard line of treatment for chronic lime is long term iv antibiotic therapy, expensive and comes with risks and drawbacks so there are many people who will not treat or who are adversely in danger of losing medical licenses for long term iv treatment in patients so very contentious, absolutely. any other questions? okay, thank you so much for coming out. it was really great to see you. [applause] >> for more information, visit the author's website, loriedwardswriter.com.

>> up next, afterwards with guest hosts of the national defense university. this week, valley nasser and the book "the dispenseful nation," and in it, former adviser to richard holbrooke refeels plans by the former ambassador and hillary clinton were disregarded by president obama for political republicans arguing afghanistan policy weakened america's ability to shape policy in asia and the middle east. this program is about an hour. >> host: welcome to "after words," and welcome, especially, vali nasr, a treat to see you after a long time away, great to have you here, and i have to tell you, i end joyed the book for perhaps different reasons, but i'll go through that, but i

wanted to thank you very much for coming in today. vali nasr with us, dean of the school of advanced international studies at johns hopkins and the book "the dispensable nation: american foreign policy in retreat," which i have here, an iranian-american, political comem tear #* at a -- common at a timer, briefed congress, and many people, of he was born in 1960, and his family came to the united states having left iran after the revolution. he has a bachelor's, a master's degree from the fletcher school of law and diplomacy and urned a ph.d. in political science from mitt. well done. i won't go through the long lists of accomplishments, they are special, but i especially draw attention, a great part of the book, which is the time you spent working under richard

holbrooke, 2009-2011, as part of the special office, special adviser on pakistan and afghanistan. now, special adviser to the secretary of state. there always are other offices one discovers that do the same thing you do, and that's part of the problem as you lay out in the book which is fascinating. other works that you've done, sheer revival, i used in courses i've done, how conflicts in islam shape the future, forces of forchip, the rise of the new middle class and what it means for our world, and in these you tell certain great events that do come. ..