How to Die in Darkness: Washington Post misrepresents, marginalizes Lyme disease patients without remorse or recourse
Dear Editors of the Washington Post:
I have a serious concern as a Washington Post reader and as a lifelong resident of the Washington, D.C. area. My hope is that newspaper editors today retain an adequate attention span necessary to consider concerns vital to the public interest. If you do not have the time or interest, please delegate this to a competent and thorough staff member under your employ. As your reader and an engaged citizen, I have taken the time to write it and I hope you will respect this time and effort by considering these words.
If you are older than 35 years of age, you will recall the nature by which AIDS ravaged the nation in the early 1980s. The federal government and the media did not attend to the emergency. Both parties in fact contributed to the marginalization of HIV/AIDS patientsfor too long, and to the conveyance of hyperbolic and false information. According to RealClearPolitics, “Reagan did not even mention the word AIDS,” Washington Post columnist Richard Cohen wrote, “until the disease was impossible to ignore and his friend Rock Hudson had died from it.”
Ronald Reagan first said the word “AIDS” in 1985. When he said it, he made excuses for overlooking and diminishing the import of a rapidly spreading firestorm of infectious disease. From the New York Times:
President Reagan, who has been accused of public indifference to the AIDS crisis by groups representing victims of the deadly disease, said last night that his Administration was already making a ‘’vital contribution’’ to research on the disease within the limits imposed by ‘’budgetary restraints.’’
The New York Times went on:
His remarks appeared to be the first time he has publicly addressed the issue of the lethal disease that has claimed thousands of victims, primarily among male homosexuals, intravenous drug addicts and hemophilliacs whose condition requires frequent blood transfusions. Although the Department of Health and Human Services has declared AIDS its ‘’number one priority,’’ Mr. Reagan himself has been criticized by groups calling for more Government action on the disease.
Who these critical “groups” were is not described by the Times, and so that information is lost to history and can only be speculated 30 years later. With hindsight, what can be asserted with no uncertainty is that the spread of the HIV virus was bolstered by public opposition to those who contracted the virus and who developed AIDS. Even as people died in rapidly escalating numbers, the societal stigma, finger pointing, and denial of treatment, empathy, and human dignity to those whose bodies were broken down by opportunistic infections controlled the reactions of governmental oversight and news media and talk show depictions informed by pathological homophobia that hampered proper journalistic investigation and which together facilitated the spread of the disease.
As a result of suppression and denial and cruel treatment of HIV/AIDS patients, an activism group called AIDS Coalition to Unleash Power — ACT UP — was formed. These activists were loud. To many they appeared unhinged, too angry. Today, this group receives a great share of credit in having awaken the public to the HIV/AIDS crisis. Today we understand the passion of those who participated in the ACT UP movement.
During the same year, 1987, Randy Shilts authored a book called And the Band Played On, best known now as an HBO docudrama, which thoroughly documented the rise of the HIV/AIDS epidemic in the United States. Shilts wrote in the introduction:
“I would not have been able to write this book if I had not been a reporter at the San Francisco Chronicle, the only daily newspaper in the United States that did not need a movie star to come down with AIDS before it considered the epidemic a legitimate news story deserving thorough coverage.”
It’s a striking statement, isn’t it?
I hope it is striking to the editors of the Washington Post, which prides itself on being a news organization of record. The Post should have done better. The Post should have been more visionary and more reasonable.
What Shilts in 1987 described an epidemic we now know to be a pandemic, a global massacre by infectious disease. No one wanted to hear it. AIDS patients were untouchables even in 1987. Shilts further wrote:
“By the time America paid attention to the disease, it was too late to do anything about it. The virus was already a pandemic in the nation, having spread to every corner of the North American continent. The AIDS epidemic, of course, did not arise full grown from the biological landscape; the problem had been festering throughout the decade. There had been a time when much of this suffering could have been prevented, but by 1985 that time had passed. Indeed, by the time we learned that Rock Hudson was stricken […] hundreds of thousands were infected with the virus that causes the disease.”
How is this relevant in 2017?
I am going to ask you, as journalists and editors, to challenge your preconceived notions — and yes, even your egos — and tell you that your news organization is contributing to a replay of this disturbing historic event.
Your publication, the Washington Post, on June 15 published an egregiously biased, contextless and misleading story that is an affront to tens or perhaps hundreds of thousands of people who are living with complex, serious, life-affecting, disabling effects of tickborne illnesses including but not solely Lyme disease today are being dismissed and derided by both federal public health agencies and the press — by your colleagues — as AIDS patients were. This has got to stop.
On June 15, the CDC issued a Morbidity and Mortality Weekly Report that profiles five extreme case studies in which five patients suffered or died as a result of blood infections acquired from intravenous treatments for their diseases. The CDC’s conclusion based upon these five reports was that any medical doctor who treats Lyme disease patients with antibiotics for longer than 28 days is malicious and likely to kill patients.
This report profiled five isolated anecdotal incidents. The CDC then concluded as a result of these five incidents that “Systematic investigations would be useful to understand the scope and consequences of adverse effects resulting from treatment of persons with a diagnosis of chronic Lyme disease.” There is nothing inherently incorrect about this suggestion, although it implies that the five profiled instances reflect a common, general outcome of Lyme disease treatment. Washington Post National Reporter Lena Sun further exaggerated the inference, writing:
These incorrect diagnoses have existed for years. But public health officials and clinicians say they are alarmed because of the increasing severity and scope of some treatments in recent years, said Christina Nelson, a medical epidemiologist and author of a report released Thursday by the Centers for Disease Control and Prevention.
But based on information received in the past three years from state and local health departments, and from clinicians who have treated patients who have become very sick as a result of these treatments, “we really have a sense that both the treatment and scope are broadening,” [Christina] Nelson said.
“Health-care providers are seeing the fallout,” she said. “These treatments are really dangerous. This is just the tip of a very large iceberg that no one is talking about.”
Sun goes on to describe the anecdotal case studies, interlaced with arguably hyperbolic quotes from Christina Nelson, author of the CDC’s report. Lyme disease patient advocacy and education organization LymeDisease.org, it should be noted, in 2014 filed an ethics complained with the CDC based upon uncovered emails that Nelson had sent out specifically seeking information about cases of medical complications associated with Lyme disease treatment. Lorraine Johnson wrote on behalf of LymeDisease.org:
Dr. Nelson is asking for anecdotal evidence intended for a case report that, because it only requests risks, will necessarily over-emphasize and exaggerate the risks associated with treatment. The risk of treatment is extremely context sensitive. The question is whether the risks of treatment are warranted given the potential benefits, the availability of other treatment options, the severity of the patient’s presentation, and the risk tolerance of the individual patient.
By asking for an assessment of treatment risks only, Dr. Nelson is framing the issue such that it leaves out the other half of the equation in a risk/benefit assessment. She is also excluding a question critical to patients who suffer a profoundly diminished quality of life due to their illness, namely the risk of not treating.
Several years later, Nelson issued her report citing five cases, and the Washington Post conveyed the findings of that report and its author in a manner uncharacteristic of the venerable news organization, in what one reader in the comments section appropriately described as “press release reporting.” The entire basis of the story is the two-page CDC report and quotes from the report’s author. Sun performed no journalistic due diligence; the story reflects no research beyond the federal agency’s report and suggests that there is no valid counterpoint to the assertions. Worse, Sun retweeted a tweet from Washington Post Health Editor Laura Helmuth, whose impressive resume involves a degree in science writing and employment as a health writer or editor at brand-name publications including Smithsonian, National Geographic and Slate. Helmuth’s tweet amped up the one-sided dramatization of the CDC’s selective bias by editorializing that “quack medicine kills.”
Washington, We’ve Got a Problem
Despite the laurels associated with the Washington Post and the impressive-sounding background of its health editor, the June 15 story is strikingly poor — and worse, irresponsible — journalism.
To begin with, it is simply unreasonable to conclude that five cases of medical complications are cause for national panic and condemnation of all practitioners of a given medical discipline. The CDC estimates around 300,000 annual new infections of Lyme disease among the United States population. Five instances of medical complications, however severe, cannot be projected to reflect malpractice and negligence among an entire disease population.
From the CDC:
Central line-associated bloodstream infections (CLABSIs) result in thousands of deaths each year and billions of dollars in added costs to the U.S. healthcare system, yet these infections are preventable. CDC is providing guidelines and tools to the healthcare community to help end CLABSIs.
Neither the CDC nor Washington Post health reporters accuse healthcare providers of negligence, malpractice, or willful maliciousness in any case except Lyme disease treatment. This warrants investigation.
CDC also reports that over 41,000 blood infections are acquired from IVs managed by healthcare providers in hospitals annually, and a total of 721,800 hospital-associated infections, 75,000 of which killed hospitalized patients in 2011. The CDC reminds patients as it provides this information that healthcare providers do their best, are competent and caring — except in the five cases of Lyme disease treatment, which it suggests as evidence of sector-wide medical negligence.
Hours after the June 15 CDC report was issued, the Washington Post published its story, which essentially repackaged the CDC information, but which in a manner uncharacteristic to most Washington Post reporting thrust the information forth with a strong bias, without any counterpoint or any acknowledgment of the controversy and debate surrounding Lyme disease. The only information offered in the text and via an embedded video are from the CDC, essentially then making the Washington Post an outlet for federal agency communications.
In an era during which the federal government’s claims are constantly called into question, when the federal government itself has declared the press — and particularly the Washington Post — enemies of the state, it is unusual that the Washington Post would relate this information from a federal agency as if it is the agency’s public relations outlet, without any further consideration.
According to the American Press Institute:
Journalism should also attempt to fairly represent varied viewpoints and interests in society and to place them in context rather than highlight only the conflicting fringes of debate. Accuracy and truthfulness also require that the public discussion not neglect points of common ground or instances where problems are not just identified but also solved.
Journalism, then, is more than providing an outlet for discussion or adding one’s voice to the conversation. Journalism carries with it a responsibility to improve the quality of debate by providing verified information and intellectual rigor. A forum without regard for facts fails to inform and degrades rather than improves the quality and effectiveness of citizen decision-making.
The Washington Post’s story fails absolutely by these measures.
Helmuth, for her part, has a history of politicizing Lyme disease and mocking Lyme disease patients, having published a story in Slate in 2012 suggesting Lyme disease patients are foolish, “confused,” mentally ill victims who were being manipulated by the Mitt Romney campaign. Her tweet about that story read “Are you a chronic Lyme disease truther? Mitt Romney’s your man!”
If your inclination is to dismiss this, and you are a journalist, you have a responsibility to consider the aspect of fairness, of the effects of politicizing a health concern, and to reflect upon the recent history of the politicization and stigmatization of HIV/AIDS patients. To acknowledge, consider, and consider whether you believe it is appropriate that this individual is given editorial oversight for the Washington Post for health-related reporting. Even if you buy into the false notion that Helmuth has promulgated in her own writing that persisting Lyme disease is a mental illness and not a physical illness, as a journalist, do you believe that mocking, degrading, dehumanizing and maligning ill patients — whether physically ill or mentally ill — in this way is responsible?
This is from a Washington Post health editor. Imagine a professional working under the employ of one of the nation’s most notable news organizations saying such things about HIV or cancer patients. I ask you to take a moment and really think about that.
Here’s what it would look like:
Do you have “stage three cancer”? Trump’s your guy!
Are you a so-called ‘AIDS victim’? Sanders will feel sorry for you!
No. No no no. This would never happen. So how and why is it allowed from a Washington Post or Slate health editor? How?
If Democracy Dies in Darkness, the Washington Post through the reporting of Sun, Helmuth and like-minded health editors and reporters seems intent on relegating Lyme disease patient pleas for respectable investigation to dark accusations of madness and shining a spotlight on these individuals as they writhe in pain and insist it’s not all in their heads, as the health writers themselves slap the Washington Post brand on their mockery.
If the above sentence is hyperbolic, consider that a counterbalance to the Washington Post’s biased exaggeration of a single side of the Lyme disease debate.
For its part, the CDC itself states that Lyme disease is the most prevalent vector-borne infectious disease in the country, and the most rapidly spreading infectious disease in the country, with over 320,000 estimated new infections annually. The CDC recently updated its website to disclose — previously denied:
“Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and “auto–immune” responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter’s syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research. Clinical studies are ongoing to determine the cause of PTLDS in humans.”
The Washington Post story barely addresses ongoing scientific debates about what causes patients who are diagnosed with Lyme disease, treated with a short-term course of antibiotics as recommended by the CDC, and then experience continually worsening neurological, rheumatological, neuropsychiatric and other symptoms. Sun clinches her retelling of the CDC report with this statement: “All five patients developed serious complications; two patients died.”
What Sun doesn’t address, or even acknowledge as existing within our realm of reality, are the countless cases — anecdotal, as the CDC cases are — of patients whose lives improved and in many cases were saved with antibiotic treatment. Not a mention of these cases, whether they involve obscure, everyday people, or the many and increasing numbers of well-known people who include Avril Lavigne, Amy Tan, Yolanda Hadid, Alec Baldwin, Ally Hilfiger, Kris Kristofferson, George W. Bush, and just revealed within the past couple of months Kelly Osbourne, Shania Twain and Alec Baldwin, all of whom (with the exception of Bush) have publicly discussed the severity of their illnesses and difficulty of recovering, and several of whom have said they encountered resistance by medical professionals to diagnose them and to give them the treatment that ultimately saved their lives. Hilfiger was diagnosed with Lyme by mental health workers after having been hospitalized for mental illness; following treatment, her supposed insanity went away. An emotionally wrecked Lavigne cried on Good Morning America because “doctors tell you you’re crazy.” Tan has written that she could not tell whether her hallucinations were real or imagined — an effect of a neurological infection that was not imrpoved with psychiatric medications, but which resolved totally with antibiotic treatment.
Kristofferson was diagnosed with Alzheimer’s disease, a terminal condition, before he was treated for Lyme disease with antibiotics and his dementia went away.
And yet readers of the Washington Post would be led to believe that five cases of infected intravenous treatments condemn an entire practice, and none of these other cases — despite commanding magazine covers — even exist in this world.
What possesses health and medicine-sector reporters to assign judgment and to broadly condemn both physicians and patients who occur in great numbers? It is regarded as unethical for medical practitioners to issue diagnoses of individuals whom they’ve not examined, or to comment on the treatments of these individuals. What justifies journalists doing this?
The Morning Email
Wake up to the day’s most important news.
I want an answer to this question.
I have requested meetings with Sun, Helmuth and Washington Post editors to discuss Lyme disease in greater context. No one from the Post has acknowledged these requests.
At what point were reporters granted greater knowledge of individuals’ health and well being than those individuals have, living in their own bodies and navigating the healthcare system themselves?
I was taught in college that five principles guide ethical and reasonable journalism. They are:
- Truth and Accuracy
- Fairness and Impartiality
Truth and accuracy
The Washington Post story relayed CDC-issued information profiling five case studies and concludes: “Clinicians who call themselves ‘Lyme literate’ are often self-annointed [sic]; there is no special training program and no requirement to be board certified in infectious disease, Nelson said.”
In fact, the truth is that a medical association for Lyme and associated tickborne diseases exists, and while this organization does not certify medical professionals as specialists, it offers ongoing training and annual medical conferences about new and emerging research relating to these diseases.
In fact, while the CDC does not endorse the diagnosis and treatment guidelines of this medical association, the federal National Guidelines Clearinghouse — housed under the Department of Health and Human Services — offers these guidelines alone to medical practitioners for the treatment of Lyme disease, because the guidelines that the CDC continues to endorse were removed by the Clearinghouse for the reason that they were determined to violate the federal agency’s regulations for not having been reviewed against current science for over a decade, and review at least every five years is required. Nothing of this nature was reported by the Washington Post. As a news organization of record, it would be appropriate for the Washington Post to investigate this peculiar incident of the federal agency charged with public health — the CDC — continuing to promote and endorse healthcare guidelines that were de-listed by the federal clearinghouse for medical treatment guidelines. Will the Washington Post investigate this? Will any major news organization investigate this? Parties seeking parity and respectful treatment for Lyme disease patients have been asking for a year and a half and their requests have been met by silence. Meanwhile, health editors such as Helmuth who have displayed bias not only in favor of one side of an issue hotly debated even by scientific researchers, but bias against patients that, again, is a direct parallel to the cruel treatment of HIV/AIDS patients in the 1980s.
Does the Washington Post care? Evidently not, as my requests for a meeting have gone unanswered, and complaints by readers both in response to the article and via social media and direct e-mails likewise have gone unanswered.
This is the tip of the proverbial iceberg. The point here is that the Post story is untruthful and inaccurate by exclusion and by suggesting that physicians who practice according to the guidelines of the International Lyme and Associated Diseases Society are reckless, maverick-style malpractitioners. Readers would not know the difference, and for this reason the Post story fails the first basic tenet of ethical journalism.
I would ask you to compare the Morbidity and Mortality Weekly Report with the Washington Post story that describes it.
I would ask you to identify any aspects of the story, aside from hyperbole, that reflect independence from the CDC’s point of view.
I ask you to ask yourself and your colleagues whether this story reflects independent journalism, or if it in effect offers the Washington Post as a branded outlet for the dissemination of information from a federal agency. In light of so many questions surrounding the current presidential administration and other governmental considerations, is this a wise or ethical use of the news media, as a venue through which to relay information from a federal agency without context, consideration of third-party opinions, and via the lens of undisclosed bias on the part of reporting staff?
The Washington Post health editor’s diminishing treatment of the Lyme disease community — sick people who she has called “truthers” and told to vote for Mitt Romney — recalls a memory from my youth of Oprah Winfrey show audience members howling and jeering and booing and using epithets against a man who was dying from AIDS. Winfrey, some might say heroically and some might say acting on a basic level of decency, intervened and explained the nature of empathy to those people and, through her show, to the audience, if my memory is serving me.
I am not asking Washington Post editors or writers to become suddenly empathetic human beings if this is not their respective natures. People can’t be changed that way. I am demanding that the Washington Post as a journalism organization manage its staff adequately to temper their biases and report fairly and impartially. Not to be better people, but to behave more professionally than 1980s daytime talk show audiences. I think this is a fair request.
Fairness and Impartiality
The New York Times in 2012 published a collection of seven opinion pieces, each reflecting a different and nuanced opinion of the Lyme disease epidemic. The series “Room for Debate” included essays by a Lyme disease specialist, a reporter, a nonfiction author who published a book surveying the Lyme disease epidemic, Amy Tan, a well-known fiction writer who became disabled from Lyme disease and who subsequently recovered with effective treatment; a medical researcher; two Infectious Disease Society of America representative physicians who argue against diagnosing and treating persisting/chronic Lyme disease; and a CDC official.
The New York Times presented these essays side by side, allowing each individual to speak on his or her own behalf based upon their own experiences. The New York Times in this series displayed fairness and impartiality, not selecting opinions with which its editors agreed to position publicly as the unquestioned gospel. To the contrary, the Washington Post story displays contextless bias and it renders judgment on a broad swath of individuals without nuance or counterpoint. It devastates me to the depths of my soul not to have even a passing thought aligned with those of Donald Trump, but in this instance, the Washington Post is passing off personal bias as impartial journalism — in other words, “fake news.” That the Post has done this, and has not responded to any inquiry requesting open conversation about it, honestly makes me question the veracity of the news organization’s reporting about other concerns. In what instances is the Post objective, and in what instances is it relaying someone else’s selective opinion in such a way that unwitting readers would receive as the unquestioned truth? How many parents of children with Lyme disease, reading the Post’s single-sided presentation of Lyme disease, will tell their children to stop complaining about phantom pains as a potential infectious disease breaks down their bodies? There are real-world consequences to reporting with personal bias.
Where the New York Times exemplified the tenet of fairness and impartiality, the Washington Post exemplified BuzzFeed, Breitbart or Daily Mail-style selectivity and hyperbole, and the extremely worrisome recent trend of journalists repackaging press releases and other materials as their own stories without conducting any due diligence to determine where such information fits within the broader context, or if it is even entirely accurate.
From the Columbia Journalism Review:
Reshaping a press release into story form without adding any real context, pertinent information, or countervailing opinion isn’t journalism, appearances notwithstanding. It’s actually not all that different from what a Karen Ryan does — packaging PR so as it give it the imprimatur of editorial legitimacy.
The same applies to reshaping a short anecdotal report from a federal agency and adding a couple of quotes from its author. It’s still “packaging PR so as to give it the imprimatur of editorial legitimacy.” Aren’t you better than that, Washington Post?
My assumption here is that at least two forces were behind this: One, reporters taking for granted that any information issued from an agency such as the CDC is gospel, not to be questioned and with no additional research required or encouraged, and two, personal bias. I prefer substantiated opinion to assumption, but my requests for meetings with Washington Post editors and health writers to discuss Lyme disease have not been acknowledged in any way and so assumption is the only inference available to me.
To the first point, I find it peculiar that in 2016 the Washington Post reported revelations by the British Journal of Medicine that infections acquired at hospitals should be disclosed as the third leading cause of death within the United States, but that former CDC director Tom Frieden mandated that this information by kept from the public because it reflects poorly on the federal agency. RealClearPolitics was bolder:
Former President Obama’s CDC head, Dr. Tom Frieden, resisted requests from victims’ families for honest death certificates. Families urged him to recommend that certificates start documenting when infection caused or contributed to death. But Frieden did nothing. It’s true that it’s each state’s decision, but most follow CDC guidance. The agency and the states are guilty of a cover-up mentality. It’s time that death certificates tell the truth and hold hospitals accountable.
Given this, I find it odd that the Post one year later relayed information from the CDC about five case studies of medically acquired infection, applied to the entire arena of Lyme disease treatment as condemnation of the practice, and did not perform any further background research.
Is the Washington Post a dissemination outlet for federal agencies or a critical news organization that observes ethical journalistic practice? Please decide and practice consistently.
To the point of bias, I would again remind you that Washington Post health editor Laura Helmuth has in the past disclosed during her post as health editor at Slate that she does not believe in persisting Lyme disease because an acquaintance of hers committed suicide while undergoing treatment, and she believes the treatment is what drove her friend to suicide. While I sympathize with Ms. Helmuth’s loss, an inconvenient reality about Lyme disease is that, as with its close relative syphilis, the infectious agent that causes it manifests pathologically when not adequately treated as neuroborreliosis, an infection of the central nervous system, which can result in severe neuropsychiatric symptoms ranging from depression and panic disorders to obsessive-compulsive-type disorders, psychosis and dementia. Suicide rates are high among Lyme disease patients because psychiatric disorders can be caused by the Lyme disease infection itself, and because Lyme disease patients are routinely rejected by healthcare providers, and even mocked by them and by, yes, the media.
From the American Journal of Psychiatry all the way back in 1994:
Up to 40% of patients with Lyme disease develop neurologic involvement of either the peripheral or central nervous system. Dissemination to the CNS can occur within the first few weeks after skin infection. Like syphilis, Lyme disease may have a latency period of months to years before symptoms of late infection emerge. Early signs include meningitis, encephalitis, cranial neuritis, and radiculoneuropathies. Later, encephalomyelitis and encephalopathy may occur. A broad range of psychiatric reactions have been associated with Lyme disease including paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder. Depressive states among patients with late Lyme disease are fairly common, ranging across studies from 26% to 66%. The microbiology of Borrelia burgdorferi sheds light on why Lyme disease can be relapsing and remitting and why it can be refractory to normal immune surveillance and standard antibiotic regimens.
Despite this knowledge, or absent of it, an embittered Helmuth blames improper care for her acquaintance — who Helmuth unilaterally diagnosed as never having had Lyme disease — for her acquaintance’s depression and ultimately her suicide rather than considering the neuropsychiatric effects of the physical illness. Is Helmuth a physician? Is she a physician who examined and performed thorough differential diagnosis on this woman? In her position as health editor, what emboldens her — and what senior editors empower her — to apply her past traumas to single-sided reporting on a highly controversial and little-understood health condition?
“Journalists should do no harm. What we publish or broadcast may be hurtful, but we should be aware of the impact of our words and images on the lives of others.”
After I read Lena Sun’s article and Laura Helmuth’s derogatory tweet (and Sun’s retweet) yesterday, I contacted both Washington Post health writers and requested a face-to-face meeting through which to respectfully discuss (and debate if necessary) more than one perspective on Lyme disease. The facts are that this disease is controversial, and that federal agencies’, infectious disease specialists’, Lyme disease specialists’ and patients’ experiences are contradictory to the information purported by some but not all federal agencies, and that there is abundant medical research that fuels both sides of the debate with no conclusion about the cause or effective treatment of persisting Lyme disease symptoms. Neither writer replied. I petitioned them with evidence, as well as with appeals to their humanity and interest in journalistic accountability. Neither writer replied. What does the tenet of accountability mean to the Washington Post?
I then contacted a number of Washington Post editors, not knowing who is most appropriate. None has replied. And so through this letter, I am contacting you, hoping at least one individual at your respected organization will perform her due diligence.
The Washington Post always has been my primary and local news source, and I cannot overstate my disappointment in this article and in the lack of humanity or accountability that accompany it. This contrasts starkly, again, with the New York Times; earlier this year, I tweeted a criticism of a (non-health-related) story reported by the Times, and I was immediately contacted via Twitter by its author, who asked to speak with me via telephone. In that case, my concern was more of a personal political interest and I had not requested such a discussion; this longtime journalist told me via telephone that her due diligence as a journalist is to consider different perspectives, to hear the voices of her readers, and to question whether she is writing without bias. It was a strikingly impressive event from my perspective, and one that gave me great faith in the Times and its authors’ (and presumably its editors’) adherence to the values of good journalism.
It was a stark contrast to both the content and the (non-) response of the Washington Post‘s treatment of Lyme disease.
Lyme disease patient activists present themselves more and more as angry, embittered, demanding, sometimes unhinged. For anyone wondering why this is, I strongly encourage you to read Randy Shilts’s And the Band Played On and to look at the history of ACT UP, both of which were necessary — loud, angry, demanding and thoroughly annotated — to wake up the nation to the epidemic that was spreading despite their denial and condemnation of sick and dying people.
In closing, I want to draw your attention to legislation passed by the federal government of Canada in 2014. As you read this, note that this is federal Canadian law, not conspiracy theory or hyperbolic rants of a growing cohort of mentally ill people. It is a serious accusation and condemnation of United States policy and ethics, and it should be factored into any and all reporting on Lyme disease in the future.
An excerpt of the Federal Framework on Lyme Disease Act, S.C. 2014, c. 37:
Whereas recent research further demonstrates the persistence of Borrelia spirochetes after antibiotic treatment that follows the guidelines used in Canada (Embers et al., 2012) and indicates that current serology does not adequately describe the diversity of Borrelia bacteria existing in Canada and that the general understanding of, and practices for dealing with, Lyme disease are no longer sufficient or in line with emerging evidence of how the disease operates (Ogden et al., 2011);
Whereas the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness;
An excerpt of an article written by Washington Post health editor Laura Helmuth for Slate:
If you are a doctor who believes that the CDC and NIH have misrepresented carefully vetted clinical trial data about the diagnosis and treatment of Lyme disease, however, you might diagnose your patient with chronic Lyme disease and prescribe an intensive, long-term, side-effect-laden, mega-dose of antibiotics.
And who would be the biggest supporter of your and your patient’s right to pursue a worth-testing-but-found-wanting treatment? Mitt Romney and Paul Ryan…
Here’s a translation: Forget the science, just channel your legitimate fear of a dangerous disease and your misguided fear of the medical establishment into a vote for us…
Through these words, strong bias and an interest in using polarizing partisan politics to sway readers to question or even condemn the judgment of those who live with or treat persisting Lyme disease is evident. Helmuth went on:
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.
Listen up, Mitt Romney, Paul Ryan, and Bob McDonnell: Medical research and treatment save lives. Please do not perpetuate a mistrust of them in vulnerable, confused people.
Through this disclosure, which Helmuth added to the end of her essay to drive the point home, the journalist reveals a personal bias and emotional motivation to represent editorially her perspective on Lyme disease: That it is a mental illness, not a physical illness, and that her brother’s friend would not have committed suicide had she not been treated for Lyme disease.
Even more troublingly, the health writer twists this experience — undoubtedly traumatic, but not an excuse to project her trauma onto readers and a population of sick people — into rhetorical manipulation of readers who presuppose Republican party members to be entirely wrong about all things and, therefore, given stated concerns about Lyme disease, any reader who then does not agree with Helmuth’s view of Lyme disease is likewise wrong and harming “vulnerable, confused people.”
I acquired Lyme disease 20 years ago from the bite of a tick, not through malfeasance, not through immoral acts, and not through the manifestation of a mental illness as imagined physical symptoms. I was vulnerable and confused while I was experiencing late-stage symptoms of the insufficiently treated disease in my early 30s, made more vulnerable and confused by the dehumanizing attitudes of some medical professionals. I’ve been treated effectively, and I am neither vulnerable nor confused now, and I am disturbed by the ongoing, socially sanctioned marginalization of Lyme disease patients and the doctors who are doing their best to treat them given inadequate attention from federal agencies and tremendously inadequate independent federal research into this epidemic.
You have got to do better as a journalistic entity.
As a 39 year-old gay man who came of age at the height of the HIV/AIDS crisis, attended to the risk and internalized the stigma associated with the disease, I am telling you that the bias shown to Lyme disease patients today, and the lack of journalistic investigation into the ACT UP-style pleas of the Lyme disease community is stunning given that the AIDS epidemic is such as recent collective memory, and by most journalistic accounts, nothing was learned from that experience.
You have got to do better, to be more thorough, to fairly investigate what is going on with this disease, and to report in an ethical manner, not regurgitate advisories that skew and politicize reality.
I request and invite a meeting with health and any other relevant Washington Post editors at your earliest convenience.
Written in all sincerity,
David Michael Conner
Postscript: After I submitted this letter to Washington Post editors, three replied, two telling me last weekend that they would present these concerns to colleagues. Another, a deputy national editor, told me that Helmuth has a “stellar career” and that “a five-year-old tweet isn’t proof” of bias. I strongly disagree. If the tweet does not suggest bias, then the article it promoted certainly does. The article describes Lyme disease patients as “conspiracy theorists,” “vulnerable, confused people,” and in it, the author purports to know more about the health of individuals than they themselves or their physicians do. Diagnosing a deceased woman following her suicide in a nationally published anecdote as being “depressed” and not physically ill is irresponsible, and Helmuth herself discloses that she disregarded “ my own advice about not taking an anecdote as data,” and presents a personal anecdote to readers as if 1) it is representative of all Lyme patients and as if 2) her opinion about the woman’s health and ultimate fate constitute an informed medical opinion. That this story was published five years ago does nothing to excuse the egregiousness of it. If the Washington Post asserts that Donald Trump’s eager confession from 10 years ago about sexually assaulting women and Steven Bannon’s Islamophobic filmmaking career years ago are relevant today (they are) and lend insight into these individuals’ motivations and natures (they do), then certainly the article and the tweet, no matter how long ago they were written by its health editor, warrants investigation into whether stories about Lyme disease have been reported without bias.