We’re all bound by certain rules of reality that can’t be overcome by will.

A video from YouTube: “Baby Can’t Resist Knocking Over the Water.” We’ve all witnessed this–trouble-making toddlers, cats and other creatures who taunt responsible adults by threatening to topple over a glass or a vase or to push something off of a surface, sending it crashing to the ground. They do this to torture us, right?

In the case of cats, yes, they probably do it to torture us since that’s pretty much the job description of domestic cats.

In the cases of babies, everything they do is to learn. They’re fascinated by the rules of this strange new material world they’ve been conjured into, and they’re fascinated by the reactions of people. Eventually, the new fascination of watching things fall over is supplanted by newer fascinations, and these children assimilate the notion of gravitational force into everyday life, rarely ever thinking about it again until high school physics class.

This learning-through-doing process never stops. It’s part of life. Some would argue that it is life. Almost all adolescent dramas and traumas are the result of a kind of second toddlerhood that drives human beings to give all sorts of new things a try–especially things, as with the baby in the above video, that they are told not to do. Why do teens do these things, even against their parents’ warnings? Because unlike, for example, mathematics, we learn life lessons only through doing. Of course, some people learn vicariously from witnessing others’ behaviors; neither my sister nor I, for example, ever was tempted to puff on a cigarette because our parents smoked and we didn’t see the taboo allure, only the known health risks. On the other hand, as with all teenagers and college students, other thrilling experiences of youth taught me lessons that have since satisfied my curiosity and which I now have no interest in repeating.

One personal example of a lesson I learned the hard way only recently: Just as I learned about the limitations imposed gravity only by falling on my face as a baby a hundred times, I have finally come to accept that Lyme disease has created certain physical limitations that can’t be overcome by will.

As a child, I tried to will myself to fly–I don’t know how many times. Thousands, probably. (Maybe I still do once in a while, just in case.)

As a 36 year-old who was diagnosed with Lyme disease after years of increasing physical pain and quasi-disability, I had had years to come to accept that my physical body had taken a one-way trip toward failure. But then, suddenly, after five months of oral antibiotic treatment, so many of the aches and pains, the numbness, the cognitive problems, the dizziness cleared away. Suddenly I felt…well, compared to the average person I felt mildly ill, but compared to the average me of the previous five years, I felt like Pac Man after eating a power pellet. I was charged up, almost glowing with wellness. I was ready to get my life back.

As with many if not most Lyme patients, I almost certainly acquired Lyme because I was physically active outdoors. I used to bicycle a lot, 35-40 miles on most weekends for years. I spent about 90 minutes in the gym four to six days a week from about age 19 until age 33 or so, even though by age 30 I really should have stopped pushing myself. By then, after 30 minutes of cardiovascular exercise, my vision would blur or become double. Eventually, over the years, this was joined by Parkinson’s-like tremors, severe cognitive dysfunction and memory loss, breathing difficulty and hives. These persisted until my body cooled down. The symptoms escalated to the point at which I would have to send myself a text message with the number of the gym locker I had put my belongings into because no matter how hard I tried, I could never remember which locker I had used and I wandered aimlessly like an elderly person with dementia. I was a young person with dementia that waxed and waned.

So what did I do as soon as I began to feel better? I hit the gym, of course, and within a few days all my Lyme symptoms came back with a vengeance. They lasted for months and then slowly improved again.

What did I do as soon as the symptoms improved again? I hit the gym, of course. Hey, I wanted to feel good about myself and to look better than the lazy, sloppy person I had become after years of being trapped in a bed. Guess what happened. Yeah. All my Lyme symptoms came back with a vengeance. So I learned, finally, to take it easy. I came to realize that every time I felt better, I pushed my body beyond its limits, and then my body failed.

Finally, I had learned. I had to learn the hard way. Keeping activity moderate–I walk a mile and a half to work and a mile and a half home every day–tends to be the sweet spot that gives me some physical activity but doesn’t cause a flare-up of symptoms.

Of course, since I learned that I’ve had three or four episodes of thinking “that’s all in my head,” the correlation between working out and my Lyme symptoms revving up, and so I’ve tried different approaches. I bought an exercise bike. Surely moderate pedaling at home while watching TV couldn’t hurt. Guess what. You know what.

To bring back the baby metaphor, I have learned about the law of gravity, and I nevertheless continue to choose to take a nose dive from my high chair.

We learn a lot of lessons the hard way, and sometimes we continue to make the same mistakes over and over because of wishful thinking. Or because of a desire to make our lives better. Or because we want justice. And so after a thousand words, this brings me finally to my point. Well, one step closer to it, anyway.

I have worked in and studied communications all my life, and I’ve had the opportunity to explore a great variety of media and formats: I’ve edited books, booklets, newsletters, reports, academic journals, medical practice guidelines, reported articles, essays, you name it. I’ve written many of those, along with everything from speeches and scripts to ghostwritten executive communications of varying formats and lengths, etc. I have worked in nonprofit, scientific, medical, entertainment and publishing industries. I’ve studied the technical aspects of the English language, I’ve studied nonfiction and fiction writing, and I’ve studied the art and craft of storytelling in the media, both news and entertainment. And so on.

All that is to establish that I’ve got a little bit of experience in this field and I can’t not (Yep, a double negative: I’ve got a creative writing degree, which I consider a license to violate the rules of the English language that I spent so long studying.) make an observation-slash-plea.

Lyme disease is ravaging lives. If you are reading that, then you know this. I know it because I live it. But if I ever doubted whether this reality is “all in my head” as they say, writing about Lyme disease has taken away any modicum of doubt I ever had about what has been happening to my body, despite all outside influences and opinions. My experience is the experience of thousands of people whom I’ve met in person or who have emailed me, tweeted me, or contacted me through other means. Some have said, bizarrely, that Lyme is a disease imagined by “rich white women” (reasons for this are discussed in this excellent new Rolling Stone article about Lyme). Well, I am a 39 year-old gay man. I drive a beat-up 1997 Honda Civic. I am not rich. I’ve met men, women and children from toddlerhood into their 80s who are suffering terribly with Lyme disease.

It’s real. The only people who don’t believe it are people who have not encountered it personally.

And so, when people express doubt about Lyme disease, I understand when people who live with Lyme–or probably worse, when their children do–lash out and demand attention, respect, even apologies. I get it. I have done it myself when pushed too far.

But as a matter of course, having been immersed in communications all my life, I am making a plea to the Lyme disease community–all of us, from patients to parents and other family to healthcare providers and anyone else who gives a damn about human beings–to work with the rules of gravity and not to will it away.

What do I mean by this? The baby described above eventually got the lesson about what she can and cannot do with her will. She can challenge her mother’s admonishments and knock over the glass of water. She cannot push over the glass of water and will it not to fall. When it does fall, someone has to clean up the mess. For a while, she’ll keep pushing it over because watching her mother clean up the mess is no real hardship. But she will learn that eventually she’s not getting anywhere new with this little experiment, and there are consequences for it, and so she integrates everything learned through her testing of her mother’s patience and the laws of the natural world and moves on.

I hate to say this. I really hate to say this. But I have to say it: A lot of people are dubious about the severity and prevalence of Lyme disease. Right now, that’s a fact as real as gravitational force. And as much as you may hate me for saying this, a good amount of the good-faith efforts I see going into communicating about Lyme disease fall flat for lots of reasons–many presume that everyone in the world knows everything about Lyme and patient challenges; anything communicated to the average person under this assumption will go unheard. Many are delivered with passion, but that passion oftentimes is ill-tempered and frankly it can come across as aggressive, a little scary or sometimes even a lot scary. Many use medical jargon that others don’t understand and don’t include necessary context to explain what is meant. Many others use “Lyme slang” that comes across in a less-than-serious way–something like this:

Please watch the video. Please watch it, and then summarize in your mind what Ms. Palin meant to communicate. I’ve seen too many Lyme disease-related communications (particularly in comments sections and on message boards) that read like this. It’s what happens when passion overtakes any attention to content or delivery. It’s gobbledygook. It’s gibberish. It sounds a little crazy. Maybe more than a little crazy.

Communications can be taken for granted, but ranting with rhyming jargon and references that no one could possibly understand without explanation, and then expecting other people to understand is like knocking over a glass of water and expecting other people to clean it up for you and apologize to you, and on top of that to understand what message you intended to send by spilling water all over the place.

Bob Woodward, who is half the duo that broke the Watergate scandal that forced President Richard Nixon to resign, told The Atlantic recently that journalists who expect to get anywhere with investigation need to “be on the surface respectful, but never stop the inquiry.”

Knocking over the glass will get you attention, but it won’t make anyone listen to you.

Last week, the Washington Post published an article that relayed information from a two-page CDC Morbidity and Mortality Weekly Report profiling a small handful of case studies about chronic Lyme disease patients suffering extremely from intravenous treatment or mistreatment, and concluding with a recommendation that all chronic Lyme treatments be investigated systematically, and that all chronic Lyme treatment cease immediately because of severe risks posed to patient and public health.

The problems with the CDC report itself are many. A few important criticisms include:

  • The brief report, which credits 10 authors, defines Lyme disease as “a well-known condition caused by infection with the spirochete Borrelia burgdorferi (Bb) sensu lato.” (Note: Bb sensu lato is actually a group-complex designation that encompasses Borrelia burgdorferi sensu stricto, Borrelia afzelli, Borrelia garinii, and Borrelia valaisiana) Yet the CDC in 2016 reported that Lyme disease also can be caused by a newly discovered species, Borrelia mayonii. This omission seems minor, but it is significant because of concerns and questions raised by this recently discovered species: For example, B. mayonii is accepted by the CDC as a cause of Lyme disease, but B. mayonii is not detectable by CDC-endorsed Lyme disease blood tests; so, anyone with this infection will tests negative for Lyme and by virtue of that will fail to be diagnosed with Lyme. Failing a Lyme diagnosis via CDC-approved processes, the CDC not only does not accept but it denounces any claim of persisting Lyme disease symptoms. This is obviously problematic because if a person were to contract a B. mayonii infection and not be treated for it, B. mayonii would inevitably progress to be a neurological and multi-systemic infection that at some point many doctors would ultimately determine to be chronic or late-stage Lyme disease. But without CDC-positive blood tests and no current EM Lyme rash, the patient would be denied treatment according to CDC’s recommendations. I asked the CDC about B. mayonii last year and was told via email that “at this time, the evidence suggests that the distribution of B. mayonii is limited to Minnesota and Wisconsin.” The implication appears to have been that overlooked diagnoses probably are not common and thus not cause for concern. Yet this begs another question: Given that B. mayonii is so geographically specific, that it causes Lyme disease, and that it does not return positive CDC-recommended Lyme disease tests, and especially that it was only discovered last year, is it not possible that other species or strains of Borrelia exist, yet have not been discovered? If these species were correlates to the newly discovered one–not mentioned in last week’s CDC report–then they could be endemic to areas where Lyme disease complaints are common but where the CDC claims Lyme disease does not exist. This is the tip of an iceberg of questions, concerns and unknowns about this simple omission.
  • Most glaringly, the report profiles five extreme case studies that describe medical accidents or medical malpractice or negligence in the care of patients who had been diagnosed with chronic Lyme disease. The 10 authors then project these five cases onto the entire Lyme disease patient population of over 300,000 estimated annual cases, condemning the entire practice of treating patients based upon an insignificant number of unusual cases. There appears to be no record of CDC condemning the treatment of any other disease even when those treatments, even though the CDC itself reports that 71,900 bloodstream infections of the exact same nature profiled in the Lyme report were caused by healthcare providers treating other health issues in 2011. I contacted the report’s corresponding author to ask about this apparent discrepancy and have not received a response to date; nevertheless, this difference in addressing these issues is highly questionable and it suggests a specific bias against Lyme disease treatment. LymeDisease.org asks more relevant questions about the report here.
  • LymeDisease.org filed a complaint against the report’s principal author in 2014 alleging that she sent out widespread requests for extreme cases of injury caused by Lyme disease treatment to Infectious Diseases Society of America-affiliated (IDSA) medical doctors in an effort to find support for a predetermined and long-held bias by the CDC against physicians who treat chronic Lyme disease.
  • Microbiologist Holly Ahern here observes that the CDC report, issued three years following the solicitation for extreme cases of Lyme disease treatment failure, was timed to coincide with the review of IDSA Lyme disease treatment guidelines.
  • Ahern predicts that this CDC profile of five cases will be cited as evidence from a federal agency by the individuals who are reviewing the IDSA Lyme disease guidelines.
  • The CDC and the IDSA have a long history of citing one another’s and their own publications as substantiation for a shared perspective that excludes and ignores research that contradicts the shared perspective, and which was part of the basis for an unprecedented antitrust investigation into the Lyme disease treatment guidelines development process, as thoroughly described here. (Note: Rulings and commentary from the former attorney general of Connecticut were available via ct.gov earlier this year, but the page has since been taken down.)

These are only a few concerns about the CDC report.

Several hours after the CDC report was made live on the CDC website, the Washington Post published an article that re-presented the information in the report, along with several quotes from the report’s principal author. The Washington Post story did not include any additional context, dissenting evidence or points of view despite their existence. I petitioned the article’s author, Lena Sun, via Twitter to add context and nuance to her article given its limitations and potential misrepresentation of the Lyme disease patient and physician community through exclusion of necessary context. Ms. Sun did not acknowledge my request.

I then saw that Sun retweeted a promotion of Sun’s article by Laura Helmuth, who added “quack medicine kills.” This message carries several libelous implications: That doctors who treat Lyme disease patients are “quacks,” and that Lyme disease treatments “kill” patients. Again, while the CDC report does detail fatal complications of IV treatments provided to Lyme disease patients, 1) the sample of five patients cannot by any scientific or logical measure be interpreted to apply to all, most, or even many Lyme disease cases; 2) the report presents these cases as if they are uncommon and occur only among Lyme disease treatments, whereas in reality, the CDC in other materials reports that in 2011 there were 722,000 healthcare-associated infections of the same sort as the five reported in the alarming Lyme disease report, but for non-Lyme-disease-related treatments, and that of those about 75,000 patients died in hospitals from infections acquired in hospital facilities. Had this context been given by the CDC, its report would be regarded in its proper context–as a concern, but not as evidence of pervasive malicious malpractice among doctors who treat Lyme disease. And although it was not reported by the CDC, a diligent science writer should have sought out this information and reported it.

Via Twitter, I challenged Helmuth’s salacious “quack medicine kills” tweet and I requested a face-to-face meeting with Helmuth and Sun. I live in Washington, D.C. The Washington Post is my hometown newspaper. I live with Lyme disease, and my late-stage Lyme disease was effectively treated with antibiotics. The treatment, I am certain, saved my life.

Neither Helmuth nor Sun acknowledged my request.

I was curious whether Sun or Helmuth had ever addressed Lyme disease before, and so I did an Internet search for their names and for Lyme disease. The first result for Helmuth is a 2012 article she wrote for Slate called “Chronic Lyme delusion” when she was its health editor. In addition to referring to chronic Lyme disease as a “delusion,” in the article she calls Lyme treatment “quackery,” Lyme patients “conspiracy theorists” and “vulnerable, confused people.” As if we are intellectually disabled. Helmuth in her article assumes that everyone who has persisting Lyme disease is mentally ill, not physically ill, and that she understands the disease processes of our bodies better than we do, as we are all evidently so intellectually ill-equipped that we, as well people with emotional problems, are routinely duped into spending our savings on unnecessary and even harmful medical treatments. She promoted the article with a tweet calling people who have Lyme disease “truthers“–equating us with people who preposterously suggested President Obama is not American–and suggesting that Lyme patients support Mitt Romney. I am politically independent–I don’t affiliate myself with any party because I personally find groupthink to be intellectually limiting and oftentimes damaging–but my politics are generally progressive (allowing room for important departures from liberal norms, such as never questioning federal agencies–which by the way is a lesson learned only through difficult experience), and I’m appalled that anyone, much less a science/health writer would attempt to turn a serious health condition into a politically partisan and inherently divisive political issue. That’s shameful. It’s really, truly shameful.

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Equally shocking, the entire premise of the article hinges on Helmuth’s assertion that deluded Lyme disease patients are so easily manipulated that we will do the will of Mitt Romney as long as he tells us, falsely in Helmuth’s estimation, that we are legitimately ill.

Here, Helmuth not only presumes to diagnose everyone who has Lyme disease with something other than what their medical doctors–often after years of medical investigation–have determined, but also the states of our mental health and intellectual incompetence, and she–as a science writer and health editor, mind you–attempts to transform a medical condition into a partisan political concern.

Accomplishing all this in one short article is a certain kind of feat, but she’s not done. There are more assumptions to make when one has superior mental faculties:

Disregarding my own advice about not taking an anecdote as data, I have my own story about chronic Lyme disease. A friend of one of my brothers had been suffering for years from headaches, fatigue, a sense of despair, a belief that she wasn’t worthy of her job or her boyfriend. She was diagnosed with chronic Lyme disease and was treated with antibiotics, which were ineffective. What she wasn’t treated for, and could have been, was severe depression. She killed herself.

Helmuth’s inference and the implication she published is that her brother’s friend was not ill as a result of Lyme disease, but as a result of a mental health problem, and that her suicide was an indirect result of treating her for Lyme disease rather than treating the real condition. That Helmuth self-assigned the task of diagnosing an acquaintance, as a professional science writer, is something. That she used a national publication to do so is something else. It takes what would be simply unprofessional and arrogantly presumptuous and transforms it into an unethical scenario. On top of that, she also discloses two important points regarding the June 15 CDC report and the June 15 Washington Post article about the CDC report: 1) Anecdotes and case studies, particularly when only five are involved from among an approximate 300,000+ annual incidents of a disease, are not data and cannot be understood to bear the significance as data or to lead to the sorts of dramatic conclusions that the CDC report drew; and 2) Helmuth has admitted that she has allowed one incident relating to Lyme disease to inform her personal and professional opinions and writing about Lyme disease. Is this significant? This is significant.
On top of compromises of professionalism, ethics and basic human decency, the suggestion that treatment for Lyme disease contributed to the suicide she described is tenuous at best, and quite possibly even an inversion of what actually happened. In other words, just plain false.
A few days ago, Neuropsychiatric Disease and Treatment published n report called “Suicide and Lyme and associated diseases” that concludes:
Suicidality seen in LAD [Lyme and associated diseases] contributes to causing a significant number of previously unexplained suicides and is associated with immune-mediated and metabolic changes resulting in psychiatric and other symptoms which are possibly intensified by negative attitudes about LAD from others. Some LAD suicides are associated with being overwhelmed by multiple debilitating symptoms, and others are impulsive, bizarre, and unpredictable. Greater understanding and a direct method of acquiring LAD suicide statistics is needed. It is suggested that medical examiners, the Centers for Disease Control and Prevention, and other epidemiological organizations proactively evaluate the association between LAD and suicide.
In other words, depression and more severe mental health conditions that culminate in suicidal ideation, suicide and in some instances homicide can be the result of neurological infections from Lyme disease. Many people familiar with Lyme disease already know this, but now here’s a study that draws the conclusion. With the benefit of hindsight and an open mind, Helmuth might revisit her diagnosis from 2012 and consider whether her brother’s friend may have been mentally ill as part of her Lyme disease process, and that effective Lyme disease interventions potentially may have saved her life. We will never know, unfortunately.
But when we don’t know things, particularly about others’ health, we should perhaps be judicious about what we profess to know about their health. We should certainly refrain from making armchair diagnoses of any sort, particularly when writing about others’ health.
My inquiry to other Washington Post editors yielded a few replies. Two editors told me they would forward my letter for discussion. One sent this reply:
WashingtonPost

Reactions:

  1. I understand Ms. Grant’s protectiveness and defense of her colleague, and so I forgive the tone of the message.
  2. I am aware of the editor’s and the writer’s “stellar careers.” Both have prestigious credentials from prestigious universities, have worked for prestigious publications, and have received awards. According to the Washington Post‘s bio, Helmuth “legitimately can be called Dr. Helmuth” given a Ph.D. in neuroscience from the University of California at Berkeley. She has served as president of the National Association of Science Writers. She, in her own words according to the Post “has a sensitive B.S. detector.” The Post calls her science writing for Slate “imaginative.” I would refer you to the above article that denigrates Lyme disease patients as idiotic conspiracy theorists and Mitt Romney voters as an example of imaginative science writing.
  3. Steller as the credentials may be, I’d suggest boldly, at the risk of being reviled by all journalists everywhere, that credentials and accolades are not licenses to insert one’s personal prejudices into reporting of scientific information. Ever. Journalism is supposed to be guided by principles of ethics, and sticking to those principles generally but with exceptions based upon credentials is, pardon my French, shitty journalism. Also, it’s damaging.
  4. I neither stated nor implied that the Washington Post “colludes” with the CDC. I asserted two facts which I invite anyone to challenge: First, as the result of a Freedom of Information Act request, I discovered that the CDC has effectively killed stories that it did not want to be pursued by asking journalists to agree that “this isn’t a story,” and then reporting to colleagues via email that that journalist is “a friend of the CDC.” I noted this in my letter as acknowledgment that this does happen as a matter of practice, and said I hope that it will not happen in this instance. Second, I stated that the Washington Post story about the CDC report simply repackages the report findings as a Washington Post story, inserting a couple of quotes from the report’s principal author, and no additional research or reporting to lend context. This puts the Post in the instance of this story of serving a sort of public relations role for the CDC, not in fact-based, accurate reporting that adheres to the principles of journalistic ethics.
  5. Is a five-year-old tweet and a five-year-old story “proof” of editorial bias? I didn’t claim to have “proof,” but yes, it certainly is evidence of internal bias against Lyme disease patients. I, too, have a sensitive B.S. detector, and I sense B.S. by way of hypocrisy in this comment. The Washington Post reported in 2016 about Donald Trump’s comments from 2005 bragging about sexually assaulting women. As it should have, because those decade-old comments speak to Donald Trump’s nature, prejudices and predatory ways. The Washington Post in 2017 wrote that “You can learn a lot about Steve Bannon by watching the films he made” around 2004. Bannon’s films are evidence of his opinions about government and his biases against Muslim immigrants. This information from over a decade ago is relevant, as the Washington Post observed. So why, then, are tweets and articles written by a Washington Post editor in 2012 that involve marginalizing a patient community and politicizing a health issue not relevant in 2017 when that health editor presumably makes decisions about reporting on that health issue and that patient community today? My B.S. meter has reached its maximum level.
  6. “…write”?
  7. Yes, my authentic interest is in meeting for the sake of productive dialogue. I believe that I am following the advice of Bob Woodward to “be respectful, but never stop the inquiry.” I did not engage in name calling as this editor has accused me of doing; I am defending myself and the Lyme disease patient community against name calling by another editor, and about more discreet editorial bias.
  8. I confess I am bothered by the accusation in the end, which I feel is unwarranted. Nevertheless, as I stated, I can forgive the tone for the sake of furthering conversation and because I understand feeling defensive when presented with unpleasant accusations substantiated by evidence.
  9. My career is not likewise “stellar,” as I am a first-generation college student who attended public a Virginia university rather than an elite private institution, and my resume is not a veritable newsstand of glossy magazines. It’s true. And so my fair market value is lesser. But nevertheless, I am a human being, a lifelong reader of the Washington Post and a Washington, D.C. resident, and I’ve always thought that news organizations are supposed to represent the interests of their communities and not necessarily serve as pedestals upon which to showcase laurels and from which to broadcast misinformation. And boiling it down, yes, I observed what I feel are a lot of legitimate concerns, but I made only one request: To meet with editors of the Washington Post about Lyme disease in an effort to share a different side of the story than the ones its editor has presented in the past, and to ask for fair and accurate representation of people who live with persisting Lyme disease.

That said, now I’ve got some criticisms for the Lyme disease community.

This has become an epic, too, but if you’ve read from the beginning to this point, you’ll remember that I began this by talking about working with the rules of reality, and then I discussed communication. What I was leading to is that if we are ever going to make any progress and break through public communications, we are going to have to figure out how to communicate more effectively ourselves.

What does this mean?

To me, more than anything, it means we need to realize that other human beings who have no experience with Lyme disease and have no idea what we are talking about. Meaning that we need to acknowledge the bizarre circumstances of the bind we are in: It’s weird. It’s actually beyond imaginable for many people, if not for most people.

To say that we are ill and that it took years to find a diagnosis–OK, I think most people who hear that are surprised and compassionate. “That’s terrible. I’m glad you found help” is a typical response. That doesn’t mean that that person really gets it because if we are honest we have to admit that most of us are sympathetic to an extent, but not truly empathetic. Like every baby (and cat) who needs to discover how gravity works by pushing the limits, and like I had to discover the new rules of my body by pushing my limits with exercise after I began to recover from Lyme, all of us need to understand the limits of people’s empathy. Parents and children of a person will likely truly empathize with the struggles of a serious health concern. Some siblings may, some may not. Friends, colleagues and extended family probably will sympathize, but everyone has their own lives, and very few people are going to immerse themselves in the experience of another person, and so we need to understand there’s a limit to what we can expect in the way of understanding.

With this in mind, public messaging about Lyme disease–that is effectively explaining this tortuous and truly Twilight Zone-esque condition to perfect strangers–is tricky. It needs to be done with care and tact.

The Washington Post includes a section for reader comments following its stories, and the Lyme story to date has generated 187 comments. Many of these comments are from Lyme patients, and they relate typically devastating stories about devastating health problems, years of misdiagnosis, difficulty finding treatment, and many discuss how well treatment has worked for them. These comments are impassioned and most reasonably challenge the Washington Post story and urge the Post to be more representative of Lyme patients’ experiences and the full body of science, not only the side favored by the CDC.

And then there are comments like this:

Free Book on Cryme Disease, and how it is related to the Autism Pandemic, mainly by the CDC crooks, themselves:

and

Think about it.
It all makes sense if you ask the simple question.
What is OspA? How did it cause the same disease we know of as Chronic Lyme?
The answer is, “WHAT IS IT?”

This is also the answer to all the lies and scandal by Yale, IDSA, ALDF.com, the CDC, the NIH, the HHS.gov,…

Asking the simplest and first question, “What is OspA and how did it cause the same disease as Chronic Lyme?” (which is the same question), explains Shapiro’s mystery of the 2 diseases, one not causing a classic, autoimmune, chronic inflammatory bad knee disease.
But who is competent to asking it?
Not a single person with “MD” after their names except for the ones you’ll find in PubMed, discussing what goes on with triacyl lipoproteins in humans.
There is no excuse at this point in time.
In the late 1990s, yes, there was not much information out there about Pam3Cys or TLR2/1 agonists and what they are/do, but in 2017? No way.

And on and on.

Now, if I were going to devise a communications strategy that set out to discredit someone with a viewpoint that opposed mine, this frankly would be my absolute dream. These and many other comments, including comments that denigrate doctors who treat Lyme disease, are written by the same individual who is “trolling” the comments section, responding to the majority of commenters. In the above two selections alone, this person:

  1. Promotes a personal product, a “free ebook”;
  2. Points fingers and engages in name calling;
  3. Uses strange terminology that has absolutely no meaning to any average reader, which then has the effect of giving apparent credence to people who refer to those who live with Lyme disease as a “cult” (really, to me, these comments read like a Scientology handbook);
  4. Says “it all makes sense” if you ask a “simple question.” Asks a question about something about which readers will know nothing–outer-surface protein A, without explanation–and then answers the question with a question in ALL CAPS (which is read online as SCREAMING), and no answer is given. This, I’ll say bluntly, looks like the rantings of a person with a serious mental illness;
  5. Mentions Shapiro (Who?);
  6. “bad knee disease”?
  7. “In the late 1990s, yes, there was not much information out there about Pam3Cys or TLR2/1 agonists and what they are/do, but in 2017? No way.” <–This means absolutely nothing to the average person. And that is not the fault of the average person, yet this commenter in other comments blames both other commenters and anyone reading his/her comments for being ignorant, referring readers to his/her website, where all the answers are disclosed. Yes, this reads like an invitation to join a cult. It just does. It is supremely damaging, undermining and overwhelming comments made by other people.

I am judgmental about this sort of thing because if not the exact comments, then at least the tone of the comments, unfortunately is not uncommonly seen in online posts. Regardless of how justified a person feels in asserting his or her truth, if Lyme patients are going to be regarded and depicted respectfully, then we’ve got to communicate with reasonable adults. It’s not even a matter of being respectful; it’s just a matter of not undermining our own messages. For example:

  • Using “clever” misspellings such as “Crymes” as shorthand for unnecessarily cutesy and abundant slang like “Lyme Crymes” is distracting and will be received by many people, and probably by most, as immediate evidence that the person writing those words has no credibility. Why do this? If you want to say that human rights violations have been committed against Lyme patients, why not just say that in plain language? Making such a bold statement if you feel this way is inherently shocking. Trying to figure out what “Crymes” an Internet troll is talking about, including why the word is capitalized and spelled with a Y and what those “crymes” are is distracting and confusing. Your message is lost.
  • Promoting your products is a guaranteed way to destroy all your own credibility for most readers and audiences. It tells people “I’m here for personal benefit,” not “I’m here with an important message.”
  • Calling people names, whether you are calling the reader stupid/ignorant, or you’re calling third parties evildoers without any evidence, is just name calling. It is juvenile and it doesn’t prove any point or advance debate.
  • Likewise, mentioning “all the lies and scandals” of various organizations, by acronym only, doesn’t tell most readers anything at all. People within the Lyme disease community often appear so insular that they assume everyone in the world, or everyone who matters, understands the full context of the disease and all of the participants. Guess what? If you’re commenting on a national news story that doesn’t discuss any of those things, your comment is making no point whatsoever for readers. So are you ranting for the sake of ranting, or are you ranting for the sake of informing readers about something they need to know?
  • What does saying things like “the CDC crooks” accomplish? Really, what does it accomplish? Describing what you believe the CDC has done, with evidence, would give readers an opportunity to understand what was left out of the news story, and based upon the information given, readers then would be equipped to make judgments about the agency. Name calling does not give any information to anyone, except that the person writing the comment engages in name calling and therefore may have questionable judgment.
  • Who the hell is Shapiro? If you mention Shapiro (or anyone) by name–particularly by last name only–and don’t explain who this person is or why this person is relevant, then you’re not making any sense at all. That is not the readers fault; it’s the fault of the commenter. Is the reader expected to Google “Shapiro” and discover a world of evidence? Think about what information you are giving, and what the reader will take from that information or will be equipped to do with that information.
  • Even if discussed in a context that made sense to an average reader, “Pam3Cys or TLR2/1 agonists” is not for the average reader. According to The Economist, President Obama’s State of the Union Addresses were written at the eighth-grade level–and this is speech that has been regarded as elitist and showoffy by many American voters. And “experts recommend writing documents intended for the general public at the 9th-grade level, health and safety information at the 5th-grade level.” Fifth grade. These recommendations are based upon necessity; they’re based upon communication’s equivalent of the law of gravity: You might wish that the public’s reading comprehension and intellectual curiosity were greater, but they are not, just as you may wish to fly. If you convince yourself you can defy the laws, you’ll fall on your face. No one gets hurt but you.

What is evident in these sorts of communications, which are not limited to the individual who wrote those comments, is anger and a poor consideration about the real message that you want to send, the audience to whom you’re sending it, and what you want to come of it.

I don’t write this to insult or to offend anyone. I’m asking people who are doing necessary work of raising awareness about Lyme disease to put some thought into your communication style and content. Consider your audience. Who are you speaking to, and what do you want them to take from what you’re telling them? If they’re not already familiar with Lyme disease, it’s your responsibility to avoid shorthand and to provide necessary context so that these people will be able to make sense of what you are saying. If they can’t make sense of what you are saying, not only will your message be lost and your time and effort wasted, but depending upon what you say and how you say it, that person will be likely to misconstrue your intention and decide that you either are attempting to spread a false conspiracy theory, or potentially that you may not be capable of making sense at all. The urgency of your messaging may be miscontrued as aggression. The passion may be misunderstood as cultlike fanaticism. None of this will convince that person that your health complaints are true; instead, it may convince him that your critics are correct. If that were to happen because of poor communications, then the outcome would not be the audience’ fault. It would be the fault of the person delivering the message. If you are well versed in technical medical language, use that fluency to read and interpret medical information, but don’t use it when delivering messages to people who don’t understand it. Your message won’t mean anything, and the person will not be impressed that you’re competent with scientific language; she’ll just be bewildered and probably bored. If you want to refer to a researcher or anyone else by name, use the full name and explain who that person is, and cite that person’s research or, if speaking orally, offer to provide that research to substantiate what you are saying. If you’re angry, that’s understandable, but if you act like an angry person, understand that your anger is distracting, potentially scary, and probably will distract from your message depending upon the time and place. Learn to tailor both the tone and the content of your message to the setting and the audience. If you are at a political rally designed to get people’s attention, by all means be loud and flashy. There, your anger will draw attention if you’re among a group that has clearly organized for a specific purpose. If you carry that same energy to a one-on-one conversation, though, you will come across as threatening and, well, crazy. If you’re at a rally and that rally has developed slogans and so forth, then cool, use those slogans. But if you use those slogans in place of actual, real words on online message boards, understand that you will be seen as an Internet troll and understand that people do not read what Internet trolls write expecting to learn something from them, or to buy their products and services.

Bob Woodward’s advice is far more verbally economical than my words are: “Be on the surface respectful, but be persistent.”

“Respectful” is not part of the equation simply for the sake of being nice. You won’t get anywhere when you point fingers at people and call them names except, probably, push back. When I saw that a health editor called me, as someone who lives with Lyme disease, a “conspiracy theorist,” a “truther,” a “vulnerable, confused person” and a Mitt Romney voter (Uh, no.), and suggested that my illness is a mental illness and that I am too mentally incompetent not to understand the truth about my health that she professes to understand, guess what? It didn’t convince me she’s right. It motivated me to be even more persistent in getting to the bottom of why these abuses are being committed against so many people who are so ill, but to do so respectfully.

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