Today, 1989 may be most associated with Taylor Swift: It is the album that won her a second Grammy for Album of the Year. Not only that, it happens to be the year Swift was born--such a long, long time ago!
People under 35 have no personal memory of 1980s pop culture, which is ironic since Swift's album in part pays homage to it. In the real 1989 (no offense to Swift and the 10 co-producers who made the album), all sorts of revolutions took place: Mr. Gorbachev tore down that pesky wall, for example. America's greatest antagonist, the Soviet Union, collapsed in 1989. Brazil conducted its first democratic presidential election since 1960. And so on.
Today, it's hard to say whether America's greatest existential threat may be Vladimir Putin or his Number-One American Fan, Donald Trump.
If the CDC is to be believed, it's the Zika virus. Two years ago (2014, the year Swift's 1989 came out), the CDC was most concerned about Ebola, to the extent that the U.S. public health agency was criticized for "roughing up" humanitarian aid workers who had helped to treat those with Ebola who were suffering abroad.
Way back in the early 80s, the CDC was criticized for doing too little about the emerging and little-understood AIDS crisis: Specifically, in 1982, the CDC cautioned the public that four groups of people had to worry about developing AIDS: homosexual or bisexual men, IV drug users, people with hemophilia, and Haitian people. (There was immediate backlash, as reasonable people questioned how having a background in a single small island nation--which shares its island with another, the Dominican Republic--could possibly fit within that cohort of risk groups.) By our target year of 1989, the CDC reported that the number of AIDS cases in the United States had reached 100,000. And not long thereafter, the "control" part of the Centers for Disease Control and Prevention was so aggressive that patients were "scared that the Reagan administration was going to put people with AIDS in internment camps."
In other words, public health authorities initially underestimated the public health threat and put out bizarre misinformation that defied common sense: to state that men who have sex with men and IV drug users are at risk has a certain sense of inherent logic, but to suggest that hetero, non-drug-using Haitian people are at similar risk suggests that the enigmatic infectious disease is consciously aware and respectful of geopolitical borders. Which is to say that that theory is and was so stupid, it's astonishing the CDC promoted it. And then the administration went from underreacting to overreacting, and terrifying those who were ill by propagating irrational fears.
What's important about this, notable in 2016, is that all of this--all of it--was the result of no one knowing enough about an emerging epidemic but acting as if they did.
Whether reasonable or not, both public health agencies and the news media have a pathological habit of identifying and promoting certain health concerns as dire--potentially devastating, possibly decimating. They don't always hit the mark: In the early 80s, the CDC seemed to have attempted to try to quell panic by suggesting that only small, specific groups of people were at risk. (This has been said to have inadvertently contributed to the spread of the HIV virus among those outside of those risk groups--particularly non-IV drug-using, non-Haitian heterosexual women, who were told they were not at risk.) And for every case of underestimated pandemics, there are at least 10 cases of imminent disasters that blow over with hardly a ripple: West Nile, swine flu, bird flu, SARS, and so on.
Do you remember SARS? From 2002 through 2004, SARS was an existential threat to us all. In May of 2003, the Washington Post like every other news organization published death-scare headlines. And then in July of 2003, the Post told us "SARS Appears Gone -- For Now." Credit to the headline writer for knowing when to use a cliffhanger.
According to the World Health Organization, the Zika virus has been around since 1947, and a major outbreak occurred in 2007 in Gabon. This year, the CDC has taken to spraying a potentially toxic pesticide called Naled over parts of the United States--in one case killing 2.5 million bees--to prevent the spread of Zika. U.S. authorities have been spraying Puerto Rico for years with this chemical, which a group of otherwise politically divided Puerto Rican mayors have decried as "environmental terrorism."
It's important and useful for a public health agency to recognize and alert the public to severe public health threats and emerging diseases. It's likewise important for the medical sector, including physicians, researchers, and health insurers, to acknowledge newly emerging and little-understood health problems. Yet, for every trending epidemic-to-be that headlines the news, there are multiple poorly understood diseases whose sufferers are turned away by doctors, who often tell patients that their problem is mental or emotional and not to be taken seriously.
This happened in 1989 to two people who suddenly came down with severe flulike symptoms and never fully recovered. One of these people was Susan Harris, creator of the iconic 1980s television show The Golden Girls. The other was Golden Girls character Dorothy Zbornak who, for the span of two episodes, mirrored the life of her creator, Harris.
In the "Sick and Tired" episodes of The Golden Girls, Dorothy falls ill--very ill. She sees her doctor and worries about the worst-case scenario. He runs "every test" and tells Dorothy the news is good: She's not sick at all. She tells him that's not right, that she is very ill, and he suggests that perhaps she should find a nice man to date, which will relieve her anxiety, and she will feel better.
In hindsight, this may sound to many like an old-fashioned type of feminist story by way of the 1980s, but being based on Susan Harris's life, that was not the point. The point is that she was sick--and she knew it, but the doctor didn't know, and the doctor didn't care.
The remarks made by Dorothy's doctor made her question her own sanity: Maybe I'm not really sick, she said. Yes you are, her mother Sophia assured her. Yes you are, her roommate Rose assured her. Dorothy was referred to another doctor. He ran more tests. He told her, "you're getting older, just like I am." He asks her if she has seen a psychiatrist. When she gives him letters from two psychiatrists attesting to her mental health, he asks, "What the hell do they know? Psychiatry is not a science. What you have is not scientific."
Being a sitcom, Dorothy lucked out, in a sense, and was within a two-episode story arc given a diagnosis that took much longer for Susan Harris to get: She was sick with an emerging condition called chronic fatigue syndrome. Contrary to the dismissive "what you have is not scientific"--an ironically dogmatic and antiscientific opinion--the next doctor was honest with Dorothy:
There are new disease arising all the time, things that we do not necessarily have tests for. BUt that does not mean that the disease does not exist. I think that you are sick. I think that you have something called chronic fatigue syndrome. It's fairly recent. There are many theories about it. Most of us believe it's a virus that has not been identified yet.
"So I really do have something real," Dorothy says.
"I would say you most certainly do," the doctor says, before telling Dorothy that the pathology is poorly understood. He compares it to multiple sclerosis: "Some people have 20-year remissions; others wind up in wheelchairs."
From a contemporary standpoint, the race-based humor assigned to the elderly Sophia character is distracting, but setting aside today's standards of political correctness, the episode is both instructive and alarming. Then and now, it's hard to watch Dorothy be told by such revered authority figures--who have all authority over the fate of her well being, as doctors do--tell her she is not sick when we, as the audience, have been clued in that she is sick. That that happens every single day today, almost two and a half decades later, is really shocking. Joke as you will about "very special episodes," looking back on why they were made and where we've come since the 80s and 90s is an incredibly important means of reference. We haven't come far at all when it comes to many enigmatic illnesses.
Chronic fatigue syndrome eventually was widely recognized as a "real" disease, although because of its variable presentation, there have always been doubters in the medical community, including those who still tell patients they are not "really" ill. 1989 was almost 30 years ago, and just a few months ago the U.S. news outlet The Daily Mail published an article headlined "Chronic fatigue IS a real condition." The definitive "IS" is there because blood tests suggest so. (Note that the doctor told Dorothy this in the 1989 Golden Girls episode--and we're still having the same debate.)
This 1989 episode of The Golden Girls is so, so important in 2016. It's important as a historic record of reality--the reality of a patient who lives with a chronic illness, and the reality of how dismissively she is treated by so many who would have her believe she is a madwoman with no physical illness.
Today, patients with chronic fatigue syndrome have a slight advantage over Dorothy Zbornak: the disease has been assigned the more official-sounding name of myalgic encephalomyelitis, which the Daily Mail states "remains unclear and sufferers are often dismissed as malingerers."
As the nation panics over Zika virus, and as public health authorities wage war against fear by spraying a neurotoxic pesticide over populations with or without their consent, countless people today are living in Dorothy Zbornak's fictional and Susan Harris's real 1989, living with debilitating chronic illnesses and told by the majority of doctors that they are either acting out their imaginations or else mentally ill.
These are patients with chronic Lyme disease. As hugely growing numbers of people contract Lyme disease and never recover, the CDC insists that all people who contract Lyme disease are fully cured with a short term of antibiotics, period, although the Center eventually came to admit that these people have a real condition which it calls post-treatment Lyme disease syndrome--not an active infection, the CDC says, but a phenomenon. The CDC's advice to these patients in 2016 could have been spoken by Dorothy's doctor in 1989:
Share your feelings. If your family and friends can't provide the support you need, talk with a counselor who can help you find ways of managing your life during this difficult time. As with any illness, Lyme disease can affect you and your loved ones. It doesn't mean that your symptoms are not real. It means that you are a human being who needs extra support in a time of need.
Medically sound, useful information indeed. Because my tone may be lost in type, let me be clear: That was sarcasm. The name is clearly dismissive ("post" means that the disease has been definitely cured), and other advice for the condition includes: "Check with your doctor to make sure that Lyme disease is not the only thing affecting your health." Just like Dorothy, most chronic Lyme disease patients see a dozen or more doctors before receiving a diagnosis--with everything else ruled out in the meantime. And despite the CDC's use of assignment of a name to the condition, which masquerades as acceptance of its existence, the CDC and other federal agencies are investing practically nothing in researching this enigma. This year, President Obama requested $1.7 billion in emergency funding to combat the Zika virus, which as of today has infected 3,176 Americans (all but 44 of which were contracted abroad); meanwhile, over 300,000 Americans contract Lyme disease every year, and the U.S. government dedicates an average $24 million per year to researching Lyme. By contrast, just over 2,327 Americans contracted West Nile virus in 2014, and NIH dedicates $42 million to researching it. In other words, we spend $18,000 person West Nile patient, $80 per Lyme patient, and have proposed approximately $535,000 per Zika virus patient.
Even given that governments and their ever-closer friends, corporations, place a greater value on dollars than on human beings, there is zero sense in the allocation of funds to research illnesses. It's utterly senseless, which only makes sense in that it's utterly political.
But besides the actual actions taken to help individuals who are ill and to address conditions as public health threats, by looking back at the 1980s, we can see that absolutely nothing has changed in the way most emerging diseases are treated. Nowadays, public health agencies and the news media tend to identify one single infectious disease--whether it's the Zika virus or Ebola or West Nile or SARS or swine flu--as the potential next AIDS crisis and dedicate all attention to those.
And at the same time, patients who are living with extraordinarily debilitating diseases such as CFS/ME and fibromyalgia are still often dismissed by doctors, either with a shrug or by sending them to therapists to be drugged up as mentally, not physically, ill.
It's not only bizarre on a sociological level, but from an objective public health standpoint. You'd be hard pressed to find any adult American who has not been told by his or her primary-care physician that, regardless of any fear or stigma, it is essential to be screened for sexually transmitted infections, from gonorrhea to HIV. Likewise, doctors regularly order, for example, strep tests when a patient has a sore throat, or chest X-rays when a person has cardiac-type symptoms. And yet, many physicians--following recommendations of the Infectious Diseases Society of America, which are endorsed by the CDC despite having been removed from a federal database of treatment guidelines because they have not been reviewed against current science for at least a decade--will not test patients for Lyme disease whether or not they have Lyme disease symptoms. A relative of mine who has lived with multiple sclerosis for many years, for example, has pets who have had Lyme disease and has found ticks on her body, yet despite a likely risk for having contracted Lyme, her doctor has refused on multiple occasions to order a Lyme disease test because he feels it is "wishful thinking." Although unnecessary based on common sense, I nevertheless contacted a national multiple sclerosis foundation to ask whether having multiple sclerosis protects any individual from contracting Lyme and therefore would rule out testing for Lyme when a patient may have been exposed; no, the foundation spokesperson told me, and because "multiple sclerosis is often misdiagnosed," "anyone who has been diagnosed with MS should certainly get a second opinion, especially from an MS specialist neurologist." Another replied that "having multiple sclerosis does not prelude a patient from contracting Lyme disease." And yet, the refusal to screen for infectious diseases seems to be more common than should be expected, based solely on a physician's confidence in his or her own diagnosis.
Patients with persisting Lyme disease (and in some cases those who have CFS/ME but who have not yet been diagnosed) are treated, to this day, exactly the way Dorothy Zbornak and Susan Harris were treated in 1989. The only differences are that 1) thanks to Harris, we have historic documentation to show us how misguided such an approach to patient care is--and to show us the shocking irony of a prejudiced, underinformed, aggressively ignorant and uncaring doctor telling a very ill patient that "what you have isn't scientific." In fact, there's a still poorly understood scientific basis for CFS/ME--and for persisting Lyme, by the way, even if there's no consensus at this time--and yet it is undeniably real. It is the perspective that the patient's experience is "unscientific" that is in fact unscientific.
In his bestselling and critically lauded book And the Band Played On, which documented the AIDS crisis and the governmental foibles and failings associated with it, Randy Shilts observed that:
But suddenly, in the summer of 1985, when a movie star was diagnosed with the disease and the newspapers couldn't stop talking about it, the AIDS epidemic suddenly became palpable and the threat loomed everywhere.
While many are quick to dismiss the value of 1980s-90s sitcom "very special episodes," there's no question that depicting Harris's experience through fictional Dorothy Zbornak helped the public to understand CFS and thereby forced the medical community to wake up to its reality. There's no question that similar episodes of the same show, or shows such as Designing Women, that depicted prejudices against AIDS patients and the real human toll of the disease did the same for it and the people who live with it.
Now, singer Avril Lavigne and reality TV star Yolanda Foster and her daughter Bella Hadid have brought attention to the devastating of Lyme disease, along with others such as author Amy Tan, musician Daryl Hall and fashion mogul Ashley Olsen.
Shilts wrote in And the Band Played On that the story of HIV/AIDS denial "is a tale that bears telling, so that it will never happen again, to any people, anywhere."
Yet the denial of certain diseases persists. As I was being investigated for multiple sclerosis years ago, and then like Dorothy Zbornak turned up mostly normal tests, a neurologist told me to "take a long beach vacation, and I'd be surprised if all your problems don't go away. If they don't, then you might want to look into counseling." Years later, I found out I (still) have Lyme disease--many years after my initial diagnosis in 1997. And yet an emergency room visit this year (after the urging of many people; after years of encountering dismissive medical care providers, I didn't want to go through it again, even with the potential of possibly keeling over dead at work) resulted in an immediate attitude shift from ER staff as soon as I revealed that I have Lyme disease: they simply didn't take me seriously from that point forward because this idea persists that Lyme is a collective delusion, not a real health problem. The ER gave me an EKG and then sent me away with a printout of a WebMD article about how to cure a stiff neck with stretching. (My complaints included neck pain, but primarily involved severe pain in my left arm, lightheadedness, chest pain and rapid heartbeat, and strange visual phenomena--hopefully, it was only a panic attack.)
Despite Shilts's noble effort to prevent this sort of dismissal from ever happening again, to any people, anywhere, medical prejudice, doubt, and dismissal persists. Even with celebrity involvement.
Musician Joni Mitchell is roundly revered, perhaps legendary in a contemporary sense, for her creative talents and her intelligence. And yet, her urgent public plea to take Morgellons disease seriously has resulted in a few headlines but has not changed anything insofar as Morgellons continuing to be denied as a real condition. Matter-of-factly and confidently, even Wikipedia describes Morgellons as "a self-diagnosed skin condition that is actually a form of delusional disorder in which individuals believe they are infested with inanimate material like sand, hairs, thread, or fibers, while in reality no such infestation is present." Wikipedia, while certainly not the most reliable source, is perhaps the most-read source of information on the Internet, and its absolute proclamation of Morgellons as not real would convince most people absolutely that it is not--just as Dorothy's doctors were convinced absolutely that she was not ill.
Interestingly, even unquestionable chronic physical illnesses are prone to total dismissal. Multiple sclerosis, for example, whose cause is a mystery to this day but certainly will not be forever, is (like Lyme, CFS/ME, fibromyalgia, Lupus/SLE) exceedingly difficult to diagnose, with diagnosis often being a matter of excluding other diseases from consideration. Because of its engimatic state, MS is frequently misdiagnosed: in a 2005 study, for example, of 281 patients referred to an MS specialists for suspected MS, only 33 percent were diagnosed with MS. "The rest had other neurological conditions (31.5%), probable psychiatric diagnoses (22.5%), or no clear diagnosis was made (12.5%)."
Severe psychiatric problems have been known for over a century to result from progressive syphilis--an infectious disease related to Lyme disease that can devastate the brain and central nervous system. New evidence has shown that other infectious diseases and autoimmune diseases such as Lupus and multiple sclerosis can cause similar severe mental illness. These mental manifestations are the result of physical illnesses and thus are symptoms of these physical illnesses and can improve or resolve completely with treatment. Yet, when MS, Lyme disease and other diseases that are very difficult to diagnose cannot be definitively diagnosed, many doctors today decide that patients' physical symptoms are the *result* of a mental illness, rather than neuropsychiatric symptoms coinciding with as-yet-diagnosed deteriorative physical illnesses. Doctors' tendency to give up on these patients and dismissing them as simply mentally ill can result in patients who have serious physical illnesses being "doped up" with psychiatric medications--which is not unlike giving an aspirin to someone who is feeling pain from stage-three cancer. It may, minimally, treat one of the many symptoms but it is only a Band-Aid on a bullet wound. Fortunately, psychiatric workers increasingly are learning that patients referred to them by other medical doctors for "suspected mental illness" often have physical medical conditions and are becoming better at differentially diagnosing patients who have, for example, Lyme disease versus bipolar or borderline personality disorder.
What concerns me is that 22.5 percent were, after evaluation by an MS specialist, diagnosed with "probable psychiatric diagnoses."
This is troubling because of the strange feedback loop of psychiatric conditions and chronic illnesses.
In 1989, Dorothy's doctor suggested she pursue psychiatric help for what he was certain was not a real illness; when she said she had pursued that and had been told by two psychiatrists that she is not mentally ill, he said "psychiatry isn't science." He had no faith in psychiatry--other than using it as a dumping ground for unknown illnesses in which he chose not to believe. Doctors do that all the time, and it's frankly frightening.
We know now that countless people were institutionalized in the past because they were ill and their illnesses were unknown and therefore thought to have been mental illness or even demonic possession. The language has changed, but the practice has not. And this despite knowing more.
For example, we know that infectious diseases including Lyme disease and syphilis can actually cause severe neuropsychiatric conditions, including what might be called full-blown insanity--in fact, psychiatrists can be helpful in diagnosing conditions that escape conventional doctors' screenings--as was the case with Dorothy Zbornak in 1989, and as was the case recently with Ally Hilfiger, whose father Tommy Hilfiger committed her to a mental institution when she "lost her mind," and where a psychiatrist recognized her psychiatric symptoms as possibly--which was then proved--to be due to Lyme disease. And yet even in the medical literature cited above, nearly a quarter of suspected MS patients (which means they presented with severe neurological symptoms) were ultimately and quickly relegated to the dumping ground of "probable psychiatric diagnoses."
Why can't we do better than this in 2016? When people are so sick that they cannot function, why are physicians so quick to dismiss them as head cases?
Why, in 2016, can science not reflect on the history of science and recognize that at no point in history--whether that history is today or 500 years from now in either direction--do we, did we or will we know all there is to know? A lack of understanding is the very driving force of scientific investigation. And yet proponents of an Orwellian movement that they call "science-based medicine" exists specifically to deny the existence of just about anything that is not already proven and to denounce it as "antiscience." The term "Orwellian" is overplayed, but it applies; in George Orwell's Nineteen Eighty-Four, "newspeak" was the common language of propaganda that intimidated and thereby eliminated critical thinking. So in this real-world application of "science-based medicine," science can be and very often is undermined. The scientific process is a process of asking often-outlandish questions and investigating those questions with an open mind and without any predetermined conclusions. Once a conclusion has been predetermined, the investigation of the question is compromised. Today, when a person asks, for example, "what is chronic Lyme disease," authorities {*cough*] such as Wikipedia state that the medical "consensus" have agreed that there is no persisting infection. In fact, if there were consensus of this sort, there would be no controversy, and beyond that, scientific fact is supposed to be based upon evidence and not upon scientific consensus. This point is illustrated clearly below in the discussion of Gary Marshall, a scientist who disagreed with the consensus, as Galileo Galilei did, at great risk to his career and reputation.
It's truly bizarre and difficult to understand how these physicians and political authorities at the CDC refuse to accept that anything that is little understood does not exist. Such a dogmatic approach to science isn't science, it's religious orthodoxy.
In the 1980s, a scientific researcher named Barry Marshall believed he had proven that a bacterial infection is the root cause of stomach ulcers. The scientific and medical world laughed at him, and then responded with the sort of aggressive denial that we've all been taught the church waged against Galileo when he suggested the Sun, and not the Earth, is at the center of our solar system. Science, these doctors and scientists told Marshall, had long established that stress causes ulcers, case closed, no more research needed or wanted. Marshall asked what makes more sense: emotional stress physically eating a hole in the stomach lining, or bacteria doing it? Shut up, they said. Marshall infected himself with Heliobacter pylori bacteria and then treated the infection with antibiotics. He developed an ulcer, and then he cleared the ulcer. In 2005, he won the Nobel Prize for medicine. Had he not been so bold as to infect himself, Marshall's credibility would have been ruined forever because of the collectively antiscientific perspective of scientists and medical doctors.
The story of Barry Marshall is interesting because Marshall is a modern-day Galileo. Galileo was imprisoned for his attempt to practice science in a scientific community. Marshall was only ridiculed and his career nearly ruined for doing the same...which is some kind of progress.
Dorothy Zbnornak was ridiculed in 1989 for saying she was sick when most doctors said she was not. I was ridiculed in 2010 for knowing my body was breaking down when a neurologist said I needed a beach party or a shrink. Avril Lavigne was told she needed to relax and that her problems were all in her head. Ally Hilfiger was committed to a mental institution where a psychiatrist was the key to unlocking her physical illness. Alohttps://en.wikipedia.org/wiki/International_Lyme_and_Associated_Diseases_Societyng the way, these scientific-medical prejudices are not only upheld but endorsed and promoted by medical authorities, in the case of Lyme disease often resulting in Galileo-like persecution of medical doctors who try desperately and bravely to help sick patients.
Randy Shilts wrote And the Band Played On in the hope of preventing these sorts of things from ever happening again--yet they've happened ever since, without interruption.
When we hear about the existential threats of the disease-of-the-years--which usually (fortunately) turn out to be hype, we should extend the what-if feelings of dire desperation that we are given by the news media and public health authorities to those who are already ill--including those who you are told are not.
What if, you may have panicked between 2002-04, my daughter catches SARS??
What if, you may have worried in 2009, my son gets the swine flu?!
What if, you may worry today, my kids catch the Zika virus at Disney World. Should we cancel our vacation? When is the vaccine coming?
Those who don't have difficult-to-diagnose illnesses may have difficulty understanding that those who do have such a hard time finding medical care--because between television commercials for drugs and doctors' eagerness to prescribe medications, it might seem that doctors are sometimes over-eager to provide care. But the reality is that whether or not you encounter your doctor's humane side may depend on what's wrong with you.
When I first presented at my doctor with such severe nerve pain that I couldn't walk for three days, and then one of my legs had become temporarily paralyzed, he was alarmed on my behalf. After running tests and getting no answers, he got rid of me--referred me to a specialist. That specialist, a neurologist, was concerned and compassionate, and then after running tests to screen for MS and ALS, he's the one who suggested it is probably all in my head. Years later, after losing half my hearing in my left ear and experiencing sudden vertigo attacks that caused me to vomit violently and need assistance to walk because I literally could not tell up from down, I again had brain scans and again was treated callously by a doctor, who made me feel I was wasting his time. He nevertheless referred me to an ENT specialist, who immediately diagnosed me with Meniere's disease, and then immediately upon diagnosis was compassionate. (An aside: The doctor told me some of the symptoms may improve if I take a diuretic and lower my sodium intake. After six months with no improvement, he took me off the diuretic and said that it was worth a shot, but that Meniere's rarely improves and almost always progresses to total deafness in the affected ear and sometimes renders people unable to walk due to imbalance. I was diagnosed with Lyme shortly thereafter, and after about six months on antibiotics, the hearing in my left ear restored to about 90 percent, tinnitus is less frequent and less severe, and I have not had a single vertigo attack. Which, to me, suggests that Lyme disease may have been mimicking Meniere's disease, and that that illness probably was misdiagnosed at no fault of the ENT specialist.)
As you're worrying about all these what-if scenarios, hundreds of thousands of people, and maybe more, are living with severe, sometimes disabling chronic health conditions that are roundly denied by those in whom we trust to preserve and protect our health. Tragically, if recent history from 1989 on is a reference, this isn't likely to change. But that doesn't change the fact that countless people live with very real, if scientifically mysterious and medically denied, health problems that cause great suffering and which are not treatable by cognitive-behavioral therapy or by Zoloft, Klonopin, or Seroquel. If you don't have any influence over science or medicine, that's OK. You can still do something: Treat these people with respect and compassion, and be a rebel like those who listened to Galileo in the 1600s, and unlike all those who didn't listen to Barry Marshall in the 1980s and 90s: Realize that science exists to understand what we don't understand. Through its sheer existence, science proves that we don't understand everything. But capital-S Science sometimes now being exactly what capital-C church was centuries ago--a financially motivated, with-us-or-against-us dogmatic organization that considers collective agreement to be truth, and questioning and pursuit of evidence to be war--it takes a brave person to suggest that maybe, just maybe, all these people who are spending countless hours and dollars pursuing medical care for severely life-affecting and sometimes disabling health problems are not doing it for attention. Maybe, just maybe, these people are doing it because they are sick enough to withstand degrading condescension from self-assigned authorities in their pursuits of wellness.
It's just a theory. Feel free to laugh.