Patients have the right to object to those who trivialize their disease

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To the Senior Editors and Ombudsman, New York Times (6-25-01), By Unknown

``A recent article in the Sunday Times Magazine, 06/17/01, "Stalking Dr. Steere Over Lyme Disease" apparently escaped your fact-checking process and apparently any editorial consideration whatsoever.

In fact the article expressed so many inaccuracies, distortions, and deliberate errors in reporting that it should be considered to be a Hoax and should be retracted, with apologies and explanation in print, and a reprimand issued to the author.

It was reprehensible to see the Times manipulated into going against legitimate exercise of Freedom of Speech, whereas normally a newspaper of this stature would have been the first to defend that exercise.

I am asking that Senior Editors and the New York Times Ombudsmen review this article for accuracy specific to the following 64 points, and print retractions of all information which was untrue, with specific apologies to all individuals mentioned.

The overarching fault with this article is that the legitimate exercise of First Amendment Free Speech rights of patients to object to those who trivialize their disease and to support their doctors and educate the public at events, was distorted, instead, to be a crime of "stalking." Many of the educational events were unrelated to Dr. Steere whatsoever!

Too, in falsely portraying actions and maligning patients within the context of "stalking" there is legal basis for court challenge for punitive and compensatory damages and this avenue is being explored.

I direct your attention to the following 64 points which require correction. Please convene an editorial review board to reconsider the veracity of this article in light of accepted journalistic principles and the obligation of the NY Times to print the truth.

"Deconstruction of Lyme Disease Sunday Article"

NY Times 6/17/01 - Sunday Magazine: "Stalking Dr. Steere Over Lyme Disease:" by David Grann


1) "but the ones who had started to call his office, threatening him"

Stalking is a very specific crime and when it is occurring, it merits criminal investigation and criminal charges. The correct procedure is to report it to police.

If it is occurring by phone on any repetitive basis, an inexpensive recorder can be attached to the phone to document this occurrence, no overly sophisticated measures are even necessary!

AT NO POINT ANYWHERE IN THIS ARTICLE is there any indication that this "stalking" occurred. In fact, this article is a hoax. The solitary Internet "threat" Steere refers to occurred long ago, on March 4, 2000 and was simply the entire single line printed in the article, "Steere has been scheduled for termination," and nothing else.

It was written by a fellow from the Netherlands who was known for biting European humor, of which this may have been an example.

Police are readily able to ascertain the truth in these matters and on basis of evidence can usually track down any "stalker."

In all instances involving patient rallies, private security and city or federal police were present. No stalking charges were ever made. If there were such charges or incidents on record, why did Grann not report them?

In the instances of these referenced events, press coverage was always actively invited and was usually present from a variety of venues. This solicitation would hardly have occurred if stalking were going on - inviting witnesses to document!

Why did Grann not report that less than 50% of patients' rallies were about Steere or even mentioned him? Patient rallies were more frequently in support of Lyme-friendly doctors or for citizen/patient/doctor/professional education purposes.

2) "a strand of the ordinarily more modest infection that they believed slipped into the bloodstream undetected and remained there for years, causing joint pain, chronic fatigue, suicidal depression, paralysis and even death"

No one has claimed or believes that chronic Lyme disease is caused by a different "strand" or organism than that which causes the "more modest infection" or that it "slips into the bloodstream undetected."

In most, but not all, cases the Lyme disease is detected at some point in diagnosis. As the illness continues and is not resolved, an individual may become seronegative and current state of testing is such that often Lyme disease can not be detected in blood and urine in later disease, simply because apparently the infection has gone into deeper tissue, heart, organs, and/or brain, all of which are not sampled.

Upon death when some Lyme disease patients were able to be autopsied. culture-positive Borrellia were found in organs, particularly heart, and in brain. All of the above has been documented in literature.

How many physicians did Grann consult to present a balanced and accurate picture of what Lyme patients "believe?"

3) "Affirming their diagnoses were a growing number of patient advocacy groups, practitioners and psychiatrists who argued that the disease had become a full-scale epidemic, a modern-day plague crippling thousands of Americans."

No individual diagnoses were affirmed or confirmed in that manner, most were done by practicing MD's using clinical diagnoses often supported by laboratory testing, recognizing the limitations and inaccuracies of laboratory testing on urine and blood.

Medical doctors and laboratory testing affirmed diagnoses and not advocacy groups; that is not the function of an advocacy group.

4) "As the world's foremost expert on the illness, however, Steere did not believe many of them had Lyme disease at all, but something else -- chronic fatigue or mental illness or fibromyalgia -- and he had refused to treat them with antibiotics."

And so Steere refused to treat them on the basis of his belief? The wording is vague, and it is arguable by many that Steere is the foremost expert on Lyme disease.

The illnesses mentioned have specific and recognizable criteria which do not account for the total cluster of symptoms experienced.

Steere did not refuse to treat all Lyme disease patients who are unhappy with him, the vast number he has never interacted with. The problem lies with perceptions of "gatekeeping" keeping patients from receiving treatment from other physicians.

5) "Many doctors and insurance companies had followed his lead, and in turn, hordes of patients had started to stalk him."

Hordes??? First Amendment Free Speech exercise is hardly stalking. Actions such as attending Steere's public lectures, picketing, or supplying educational materials on Lyme disease for the general public at functions he was scheduled to attend is hardly "stalking." Any legal expert can frame the criteria for "stalking." If there had been stalking, there would have been arrests.

At Steere's honorary Astute Clinician lecture at NIH, Bethesda, MD., there were 6 carloads of Federal police and one truckload, plus security within the building where the lecture was being given, even in the female restrooms. No arrests were made.

At each function, no arrests have been made. These are free speech exercises protected by law.

In New York, Gettysburg, and Philadelphia at educational or doctor-support events in fact, police approved, attended and permitted these rallies with documented paperwork for the permits which were obtained. They erected barriers to guide pedestrian traffic and were in attendance at all times. They arrested or warned no one about any stalking activities.

At NIH no permit process existed. The NIH rally took place on City of Bethesda public property, although NIH security personnel oversaw it as referenced above. No arrests were made. The majority of the demonstrators attended Steere's open public lecture. No arrests were made there either.

At a hotel in California, where Steere spoke, the Hotel approved rental of a room next to the site of Steere's lecture as a Lyme Disease hospitality suite for a group of patients. This was done and was open to patients and to conference attendees with the full knowledge of the hotel and medical conference personnel. No stalking was observed or charged.

In Alabama, conference organizers invited Lyme disease patients inside, to attend the lecture by Steere. This is certainly was not viewed as stalking. If anything, patients are curious and open-minded about wanting to hear specifically from this doctor who acts as "self-appointed gatekeeper" to longer-term Lyme disease treatment which has benefited so many. There is an understandable curiosity to see him and hear what he says and why.

6) "Early on, he tried to explain why, based on the science, he didn't believe many of them had Lyme disease and, even if they did, why long-term antibiotics might not help."

This is being expressed in very vague and inaccurate terms. Pay attention to qualifying term "might not help." Generally with other diseases which have such serious effects, even if a treatment "might not" help, if there is a chance that it will, it is allowed.

At no time did Steere appear to his detractors, at any of these events, and attempt to explain why long-term antibiotics might not help.

In Philadelphia at the Rheumatology conference, in fact, he turned down an offer to speak through a reporter, and cancelled the remainder of his two-part talk, which was to have resulted in Continuing Education credits for attendees.

Patients outside of this event distributed peer-reviewed literature on Lyme disease, patient symptom lists, and similar material to conference attendees, rheumatologists and passers-by, in addition to visual displays.

Steere did not express to patients that they did not have Lyme disease and he did not test any of them who are being referred to as "stalkers" or attendees at activist events so he would have had no basis on which to address what they did or did not have.

7) "Egged on by advocacy groups, they infected his sterile world, trying to destroy his reputation and career."

Patients and their relatives and friends chose to attend advocacy events. Less than half of these events were directed specifically at Steere.

The majority were educational events to raise the level of knowledge about Lyme disease among doctors, health practitioners and the general public or to affirm support for doctors who treat Lyme disease and are being targeted with harassment and medical board legal actions which stand beyond the scope and purview of the Medical boards as charged in their set-up.

The intent of all gatherings, whether any focus was on Steere or not, was

a) to promote the Message that Lyme disease is not cured in 30 days for many,

b) that chronic and persistent Lyme disease does exist,

c) that long-term antibiotics do significantly benefit many and enable them to come out of hospitals, out of wheelchairs and off of walkers, out of beds, achieve some degree of recovery, and more normally participate in some type of a better life than before and finally,

d) to affirm that the Lyme disease community will not allow our doctors to be harassed for adequately treating Lyme disease any longer.

The intent of advocacy is those 4 goals, and not specifically to destroy anyone's reputation or career.

It should be noted that the "Treating Physician Doctrine" is one that has been upheld in Federal law and is focumented in appeals in Federal courts.

This doctrine states, summarizing, that all things being roughly equal, in a decision making situation, the opinion of the Treating Physician takes precedence because this is the physician that is more familiar with the patient, his/her history and manifestations of illness, and the specifics of the case.

Lyme disease patients simply assert for the right of their Treating Physician to dictate the course of their treatment.

8) "a woman in the basement of the hospital who once protected local scientists from the Unabomber, investigating potential risks and screening unidentified packages with a bomb squad, spent hours each week monitoring the threats"

I am mystified as to why scientists who work at this hospital apparently arouse such ire as to require this measure. "Hours" monitoring threats is vague - 2 hours or 40?

What is the record of threats being reported to police, again, these are criminal acts being referenced and easily traceable whether Internet or mail is used as a vehicle.

What are the statistics on numbers of arrests and convictions? One would assume none or they would have been mentioned.

In point of fact, in an entire article about stalking, not one example of true stalking was ever provided. Only one single phrase was given as an example. No reports of police involvement or arrests were mentioned. This article is a Hoax.

9) "Now, as Steere sat at his desk, he read a computer message posted by someone named Frank that said "Steere Has Been Scheduled For Termination."

a) This contradicts the previous paragraph, which states "On the Web, in virtual worlds Steere did not know or understand."

b) Arguably, this "threat" is Vague. It could have referred to Steere's employment status. In fact, that particular statement, thought to be a joke, was posted 14 months prior to the article and no more recent examples of "stalking" occurred or were referenced when the reporter was interviewing.

At the time, Lyme disease patients on the referenced Internet forum chided "Frank" publicly and privately at his known Netherlands location that this behavior was not acceptable.

c) What transpired as far as tracing "Frank" after this "threat" appeared against Steere? "Frank" often posted his identifying information and even his address and should have been easy for authorities to reach and charge if there was a chargeable offense.

10. The scientific "feud" referred to involving Hungarian physician Ignaz Philipp Semmelweis advising washing of hands is not an appropriate parallel to what is occurring with Allen Steere.

In the first instance, Semmelweis was advocating something that would save lives. In this instance Steere is advocating a restricted treatment which has proven in many treating circumstances to destroy health, increase or prolong infection and result in serious manifestations of Lyme disease, most particularly cardiac manifestations, one of the two leading causes of Lyme disease fatalities.

11) "The disease, which once consumed patients, has now consumed doctors."

The only doctors who have been consumed by this medical controversy have been the ones who are treating Lyme disease adequately, that is to say for as long as symptoms manifest. Not doctors from the Steere "camp."

Doctors who are performing research, landing large grants, testifying against patients on behalf of insurance companies for $500 or more per hour and - as bragged by one doctor, $11,000 a day, have not been consumed by this medical controversy. They have been enriched by it.

Doctors who patent the various strains of Borellia, who assume key positions for drug companies, and who patent tests and vaccines funded in part by government funds, have not been consumed by this controversy.

Only those physicians desperately sought for adequate treatment of Lyme disease patients have been consumed.

12 "And perhaps no man has been more ravaged than Allen C. Steere, the scientist who first identified the disease in the United States 25 years ago."

a) Then again, perhaps not. Joseph Burrascano, Dr. Horowitz, and many other physicians who have had actions and sanctions taken against them by state medical boards, insurance companies, and HMO's arguably have been far more ravaged, than Dr. Steere, who retains all income streams including LymeRix vaccine profits, his research positions and is able to continue to treat Lyme disease without sanction, should he choose.

b) Dr. Perry Orens, and Dr. Natole, who lost their license to practice medicine, arguably have been more ravaged than Dr. Steere.

c) Dr. Steere did not first identify this disease. Polly Murray identified the occurrence of this phenomenon, the cluster of patients, and thoroughly documented the many cases.

13. Grann's doctor father, "despite negative tests" [on his sister, was told] she "probably had an acute form of juvenile rheumatoid arthritis and might die." [The treating physician] "recommended that my father admit her to the hospital and treat her with high dosages of steroids. But still unsure why her tests were negative, my father decided to wait."

How many parents, facing potential death of a child, are arrogant enough to risk that and simply not treat or not admit to a hospital as recommended. by a specialist from Yale? Does this not sound questionable? Validity of the child memory of the reporter is questioned.

14. "That night, he searched his medical books, trying to find out what she had.."

"While my father conducted his own search,.."

Does this not sound like what Lyme patients are being criticized for doing, desperately conducting their own search, via internet and other means, to try to find out what they have? Yet it is not such a terrible thing when Grann's father is doing it.

15. the "Holy Grail of medical research" is generally thought to be a solution to a problem and not simply identifying problem originally identified by someone else.

16. "Transmitted in all likelihood by a tick, it was, as his later studies uncovered, one of the great impostors of medicine, taking on the form of other diseases depending on where the infection was in the body. As a result, the symptoms varied wildly: one person might suffer headaches or joint pain while others, with severe cases, might endure cardiac and neurological abnormalities, including memory loss and facial paralysis."

Yet later, Steere was more inclined to focus on arthritic symptoms as being Lyme-disease related and has discounted a broad range of symptoms as pointing to a figment of the patient's imagination, mental illness, etc.

17. "In most cases, he and his team concluded after subsequent studies, the illness could be effectively treated with one or two courses of antibiotics."

At this time, this was without extensive studies, and the qualifying word "most" is an important one. The long-term damage from Lyme disease is simply too severe to treat with what studies show may be effective for "most."

18. "my sister's disease had already subsided on its own, as it would in many, but her affliction now had a name -- Lyme," after the town in Connecticut in which it was discovered."

This diagnosis on the basis of clinical symptoms is precisely the kind of thing Steere disputes. Indeed, there is no certainty that Grann's sister ever had this disease based on this article and the limited accuracy of tests at this time.

It appears no tests were performed on the sister or results obtained since the disease was left to go away on its own. Arguably this syndrome experienced by Grann's sister could have been a number of other diagnoses, including simple "tick paralysis." No mention is made of evidence of a tick bite, either; arguably it wasn't even tick-related. And no mention is made of mental illness.

19. "The explosion [of cases] made Steere one of the most powerful forces in medicine."

A simple proliferation of cases does not bestow power on a doctor. Nor were his actions those of positive change for the course of this disease. He simply defined it and acquired statistics. This is gross exaggeration due to a misperception on the author's part and perhaps childish infatuation for doctors since his own father was a doctor.

20. "more patients were being told they had something called "chronic Lyme disease," an unyielding infection that ravaged the body."

Patients themselves experienced this very real phenomenon then and continue to do so now. No one has had to "tell them" anything, it is their own experience that the illness, with its severe manifestations, continues. This is not a case of mass hypnosis.

21. "In response, a small but growing number of clinicians were prescribing long-term intravenous antibiotics, sometimes for up to two years, believing that the spirochete was hiding somewhere deep inside the brain or tissue where it resisted ordinary treatment."

In fact, autopsies have revealed this to be true, and this is documented in the literature, including in patients who were seronegative to testing in blood and/or urine.

22. "Certain that something was amiss, Steere did what he always did -- he tested his hypothesis. His research soon showed what he had suspected: that, at least according to his tests, more than half of the patients who had been given a diagnosis of Lyme disease and had been referred to his clinic in the last four and a half years didn't have it at all."

Usually a scientist will wait for results of testing before forming a hypothesis on what might be occurring and not vice versa. The key phrase here is "at least according to his tests" and speaks to the accuracy of testing at that time (poor) as well as the issue of variability of labs in their ability to detect Lyme disease.

This is why the CDC promotes that Lyme disease is a clinical diagnosis based on symptoms and not just a diagnosis based on available testing.

Even today accuracy in testing is widely variable from lab to lab, test to test, and is thought to be often dependent on the "phase" of the disease a patient is in.

More recently identified forms which the Borrellia can take, such as the cyst form, are not detectable by current testing. The proteinaceous coating on the Borrellia prevents the Osp A on the "branches" of the Borrellia from being available to test.

23. "Instead, he believed they had something else, perhaps the pain syndrome fibromyalgia or chronic fatigue. (The latter two are poorly understood illnesses that may in some cases have been triggered by the original infection; they share similar symptoms but are impervious to antibiotics.)"

These diseases in fact have specific criteria for diagnoses. It is arguable that they are not responsive to antibiotics since some patients in those categories have in fact also responded to long-term antibiotic treatment similar to Lyme disease patients, and some have even tested positive for Lyme disease after years of suffering with a different diagnosis.

24. "He began to speak out, warning that Lyme had become a kind of junk disease -- a loose diagnosis used by a growing number of practitioners, patients and advocacy groups as an alternative to other afflictions that still had no known causes or treatment."

In point of fact, the "loose diagnosis" was actually a clinical diagnosis recognized by CDC. It was used by a growing number of practitioners as doctors who were treating Lyme disease regularly on a wide variety of patients, not just in studies where some patients were eliminated by prescreening, were finding that a number of patients' conditions persisted beyond initial courses of antibiotics.

Indeed patients, after extended antibiotics treatment, may still test positive for active infection. However, due to inaccuracy of testing and preference of Borrellia for deep tissue, many often do not test positive and must be clinically diagnosed instead.

25. "little-known practitioner from Long Island named Joseph Burrascano Jr. Unlike Steere, he had never done scientific research, but he informed the committee that he had seen over 1,000 Lyme patients and that his protocol had been translated into three languages."

This does not sound like Burrascano was "little known" and particularly with the mention of the gallery full of his supporters wearing green ribbons. Little known to whom? The research world of Dr. Steere or the everyday world where Lyme disease patients sought adequate treatment to alleviate their symptoms.

26. "As Steere looked on, the young doctor began a tirade against the medical establishment. He warned that many researchers were deliberately playing down the severity of chronic Lyme disease. He did not say Steere's name, but it was clear to everyone in the room whom he was talking about.

"There is a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight," he said. "Unfortunately, many of them act unscientifically and unethically. They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own." "

As Grann was not in attendance, the use of the word "tirade" is obviously a shaded interpretation from someone else, i.e. hearsay. Documented taping of the hearings would seem to indicate differently, that Burrascano merely gave testimony to a dignified body.

If Dr. Burrascano did not say Steere's name, how is it clear whom he was talking about, again, obviously a shaded interpretation from someone else. Too, note that the reference is to a "core group" and not to one individual.

The remainder of the quote seems to accurately summarize shared feeling about Lyme disease researchers who act indifferent to patient suffering.

At that time Dr. Burrascano and other doctors were being discredited, harassed, and put out of business for treating Lyme disease in methods other than those prescribed by Steere.

27. "As if to dramatize his allegations, which Steere and other researchers vehemently denied, a young boy in a wheelchair appeared."

This young boy was Evan White, and eventually his damage due to Lyme disease was very great for a number of years. Long term antibiotic treatment by Dr. Burrascano saved this young man's life, brought him back to health, out of the wheelchair and today he is pursuing a college education. He also appeared at a patient rally in November, 2000 in support of Dr. B. and attributed his recovery to long-term antibiotic treatment.

28. "Steere later told a reporter that in his 17 years of research he had never seen a Lyme case like the boy's."

This is probably true for that time and so it is questionable for Steere to reach any conclusions regarding this boy or others similar to him in health challenge.

29. "gallery began to shout: "He's wrong! He's wrong!" It was the most telling sign that there was something happening outside the ordinary circles of medicine, that in frustration a parallel universe was being created -- a universe in which there were now hundreds of Polly Murrays, self-taught medical experts armed with their own doctors and research."

Again, First Amendment Free Speech exercise is deliberately misinterpreted and given a sinister connotation. This is inflammatory language and is grossly inaccurate. "Creation of a parallel universe" is something one would expect to read about in a Science fiction novel and not in the context of patient free speech.

The derogatory attitude toward Polly Murray is unwarranted. She is actually the one person most responsible for discovery of the repeating occurrence of the syndrome that came to be known as Lyme disease. She had accurate and detailed documentation. If there were no Polly Murray, there would be no prominence for Allen Steere.

The term "self-taught medical expert" is inaccurate for Polly Murray then and now. She was simply an astute woman who observed a disturbing medical phenomenon repeating itself in a number of young individuals and staunchly asked the NIH for help, rather than making any diagnosis of her own. The reporter's description is not valid here.

30. "Though Steere maintained the support of most of his medical and scientific colleagues ("In the scientific community there is no controversy," he liked to insist), Burrascano wielded a growing army of patients and their support groups."

Burrascano also was joined by a growing number of doctors who reached the same conclusion as he did, that Lyme disease quite often persisted in patients. This was not simply a movement of patients and support groups.

The movement and the support groups sprung up in the absence of adequate and widely available treatment and in response to patient illness. Physician's growing recognition was based on observation and evidence.

31. "it [Lyme Disease community] seemed to go even further, trying to discredit the existing research and come up with its own. The most powerful of these organizations, the Lyme Disease Foundation, created its own scientific publication, the Journal of Spirochetal and Tick-Borne Diseases; organized its own scientific conferences; financed its own research; and trumpeted its own medical experts with their own treatments."

All of this is actually quite admirable, and occurred as a result of lack of medical response, including from Dr. Steere.

This attempt to illuminate has also occurred with other diseases, with positive public recognition and commendation. Willy Burgdorfer himself is a frequent attendee at these events. The foundation was started by a grieving mother who had lost a child. She works without pay to facilitate recognition and education for progress with the disease.

Incidentally Karen Forschner, at no time, has had any involvement with any of the so-called "stalking" (educational or advocacy) activities the author charges. The public education events, doctor support rallies, and advocacy events have been organized by groups of patients and not the Lyme Disease Foundation or Karen Forschner.

32. "Even Polly Murray turned against Steere, saying he was doing to other patients what the medical community had once done to her. "I don't know why he's doing it," she told me. "I've tried to talk to him, but he won't discuss it."

Given the opportunity for dialogue, Steere rejected it, even with someone who admired him and who had facilitated his career by "discovering" the disease pattern and handing this "Holy Grail" over to him.

33. [his public relations firm's spokeswoman said] "He's been getting death threats," she said. "These people won't leave him alone."

Again, threats such as those claimed would be grounds for a criminal investigation, and if there was a border crossed, i.e. threats from another state or thru the mail or Internet across a state line, would be grounds for an FBI investigation as well.

What was the documentation presented by the spokeswoman of these death threats? What were the results of related investigations, or more accurately, Why were none performed if this is occurring?

Why did Steere not present the reporter with examples of more recent threats than March, 2000 if there were any?

34. "Steere's lab and private office were in their own section of the hospital, tightly guarded by bolts and alarms."

This is standard security procedure for most chemical, biological, drug and research labs, where dangerous chemicals, drugs or and microorganisms are being utilized or investigated, and especially in a hospital, where one would not want for there to be easy access to biological agents which could cause harm.

Additionally laboratories must comply with Federal regulations on "laboratory quality assurance" which include stringent security measures.

On its own, this setup described is not significant for Dr. Steere as a measure of security afforded solely on the basis of his own perceptions of danger to himself. It is routine laboratory security.

35. "he told me that every time someone had done an article, the media had botched the facts and that he had simply given up trying to illuminate them."

This sounds familiar. Isn't this Steere's reaction to Polly Murray, to refuse to illuminate her despite their relationship. Also, isn't the theme of others being wrong and him needing to be the one who says what is right a familiar theme?

36. "he invited me to sit in on several consultations the next morning."

Did Grann tell the patients in consultation that he was writing an article critical of Lyme disease patients? Did they, knowing this, agree for him and Steere to breach their medical confidentiality for that purpose?

37. `` "Doctors can't say what they think anymore." ''

Isn't the problem more like patients can't say what they think anymore, without being "misdiagnosed" as stalkers? And that Doctors who do say what they think, if it is in opposition to Dr. Steere, are denounced, harassed, reported to medical boards, fined, and in some cases forfeit their licenses to practice.

Shouldn't an accurate quote read more like "Doctors other than me can't say what they think anymore?"

38. "If you quote me as saying these things, I'm as good as dead."

Did the reporter not recognize this as a gross exaggeration?

Did the reporter not inquire as to whom Steere had reported this endangerment of his life to and with what results?

Did the reporter not question why he was as good as dead and by whom?

39. "He sat next to me and pulled out a letter, dated June 26, 1999. He said this was typical of many patients who now receive "diagnoses" of Lyme disease, and he began to read it aloud."

Again, this references an event two years prior to this article. Was this sincere communication pleading for understanding one of the "stalker" activities in Dr. Steere's mind?

Was patient's permission given for Steere to breach confidentiality to Grann and in the NY Times? In point of fact, it was not.

I am acquainted with this patient and she is highly upset that her most private thoughts about her medical condition were shared and her confidentiality breached in one of the nation's leading newspapers by a doctor whom one would expect to understand medical ethics and privacy issues relating to patients.

How is Steere able to generalize as to what is "typical" of most patients who now receive "diagnoses" of Lyme disease? Was this a sensitive thing to do, coming from a supposedly sensitive man who likes music, etc.?

Did the reporter consult any Lyme disease symptom lists or diagnosing criteria for comparison against the symptoms this patient was reporting? In fact this broad pattern of symptoms is very characteristic of Lyme disease and there is ample evidence in the literature of just such manifestations.

In soliciting a "diagnosis" from the reporter, of whether "this sounds like" Lyme disease to a lay person, where did Grann derive his idea of what constituted Lyme disease in reaching his conclusion - from a broad range of references, solely from Allen Steere or from his sister's experience?

40."We have a lot of tests for Lyme disease," he continued. "Not just blood tests" -- which his critics say are far more unreliable than he admits -- but tests for neurological damage."

What did the reporter discover when he followed this observation up. Where is the information on the unreliability - even today - of Lyme disease testing including those tests for neurological damage?

41. "If a spirochete had damaged her brain, he said, the tests would show lesions."

Again, what did the reporter discover when he followed this observation up in more detail about what MRI's would show.

Some feel there is a period of "lag" of 6 - 9 months before MRI's show neurological damage, and conversely, that this lag also exists following extended treatment. It is thought there is a 6 - 9 month "lag" before neurological damage disappears, if it does, from MRI's as the brain attempts to recover.

42. Steere continues to quote from the patient letter, where she forthrightly speaks of common experience that people with Lyme disease have, namely the breakup of marriage, financial problems, challenged health, inability to hold job, and often hampered by continuing responsibilities to care for others.

Did Grann follow up on these themes and seek out the similar or common experiences that this patient describes? Are these experiences not in fact common to others with other chronic diseases who are not mentally ill?

43. ``"What I suspect is that she doesn't have Lyme disease but some kind of psychiatric illness," he said. He paused, as if already anticipating the impact of his words. "That does not mean I don't care about her or what happens to her." In fact, he said, he would be hurting her if he treated her for something she didn't have. ''

a) If Steere really cared about this patient, would he knowingly ridicule her words, breach her confidentiality, and make light of her condition, including labeling her mentally ill with no proof other than a letter, in a national publication?

b) Isn't diagnosis without solid basis something Steere is railing against when other Lyme disease doctors do the same?

c) Which would be a worse fate, "overtreatment" with routinely used antibiotics or undertreatment resulting in loss of health, job, marriage, financial stability, and prospects of a normal life as mentioned?

These are not experimental drugs with unknown side effects, medical regimens which bankrupt insurance companies, or the types of prohibitively expensive treatments that many AIDS patients require and which are, in most cases, routinely covered by Insurance and HMO's.

In Lyme disease medicine the dangers of undertreatment far outweigh the medical dangers of overtreatment. Common antibiotics are used for routine long-term treatment of simple conditions such as acne without a second thought.

44. "Many companies often will not help mentally ill employees or those with poorly understood disorders like fibromyalgia; worse, insurance companies still don't want to pay for long-term psychiatric care."

In fact, long-term treatment and care for Lyme disease is often more difficult to obtain than long term psychiatric care, care for mental illness diagnoses, or other poorly understood disorders as mentioned.

Treatment is more readily available for lupus, MS, fibromyalgia and others. This may be due to the fact that political implications for both doctors and patients are far less for these diagnoses than those for Lyme disease.

Did Grann check with any of the insurance companies or employers to see if the above characterization was correct or, again, did he simply accept hearsay as gospel, unquestioningly, from those proponents of Steere's philosophies.

The article states this was the opinion of "other doctors on his [Steere's] side."

Did he check out the opinions of Lyme disease treating physicians from the "other" (not-Steere) side in order to provide more balanced coverage?

Did Grann check with any patients of any of these diseases or with Lyme disease patients concerning difficulties in obtaining treatment?

Fair and balanced coverage would dictate that these views would have been sought and presented.

45. "As a result, they say, there is now a movement to treat other illnesses -- including chronic fatigue syndrome and fibromyalgia -- as Lyme disease and to attack doctors when they don't. Says one doctor in Steere's camp: "There is now a cult out there -- these advocacy groups - that says to people: 'This is not depression. This is not your fault. You have a spirochete in the brain. You should sue your doctor."

Did Grann talk to anyone from this so-called movement or cult? I am personally not familiar with a single group that fits that description and neither are any other Lyme disease patients I consulted, and I am familiar with almost all Lyme-related groups.

But if there were truly such a group to advocate for those patients in that manner, they would be advocating for "treatment" and not for financial awards. Suing a doctor is a doctor-related concern and is not ordinarily on the mind of a sick patient. A sick patient is more concerned with finding adequate and effective treatment.

Did Grann find or check with anyone who is involved in any such suit, either doctor or patient? If it is a cult and a movement, there should be many. What did they say?

With respect to spirochetes in the brain, again, this condition is documented in medical literature as is ample evidence - including patient MRI's - of brain damage directly attributed to Lyme disease.

Did Grann obtain any of this literature or question doctors who treat neurological manifestations of Lyme disease? This literature is easily obtainable on-line, in print, or in consult with Lyme disease physicians.

46. "What's more, we'll be your expert witness."'

I've not heard of advocacy groups acting or being judicially accepted as expert witnesses in lawsuits against doctors, nor have I ever heard of defendant doctors' attorneys who accepted advocacy groups as expert witnesses.

Generally expert witnesses are other physicians. This expert witness testimony is more common among physicians in the "Steere camp" and one such doctor is documented to receive upwards of $550 an hour for testimony in New Jersey.

Did Grann seek out any cases where Lyme disease advocacy groups acted as expert witnesses or ask for referrals from the doctors who gave him that insight? What did they say?

47. [they are told of] "their [patients'] right to be well, and they should be angry if the medical profession doesn't make you well."

This is opinion presented as fact, Dr. Steere hypothesizing on what might be in patient's mind. It is more likely that patients simply and understandably desire to be well, and want the right for their doctors to treat them as they see fit in order to achieve that, and in a manner which demonstrably has resulted in more wellness for other patients.

Patient anger is directed toward other doctors who intentionally disrupt that process and their recovery. Did Grann talk to any patients who expressed that in America everything should be curable? I have not heard that opinion from any Lyme disease patients or patients with any other illness or disease, it rings false.

48. "The consequence, he and his supporters say, was not just that doctors like him were being intimidated, but that patients, like the one in the letter, were being tempted by hazardous cures."

In light of the severity of unchecked Lyme disease, or other diseases with serious and devastating consequences, the decision to pursue a cure which may be "hazardous" - and even that terminology is controversial, is a patient decision. It is medical arrogance for any physician to remove that choice from the reach of an individual on that basis.

The Hippocratic oath charge to doctors is "First, do no Harm." Withholding antibiotics is harmful to patients who need them and who can improve on them.

How many doctors besides Steere, "like him," see themselves as being intimidated, or "stalked," by patients? When Grann talked to them, did they share Dr. Steere's perceptions of patients? What did other doctors, such as dermatologists say about "hazardous cures" of long term antibiotics, which are in fact prescribed for many conditions?

49. ``years of antibiotics, which studies have consistently shown can cause liver complications, severe infections and the emergence of bacterial strains resistant to antibiotics that leave people highly vulnerable to other diseases. "I'm not against them feeling better if it were a sugar pill, but what they're being given is a dangerous medicine," ''

Did Grann talk to any patients who developed other diseases as a result of bacterial strains resistant to antibiotics as a consequence of Lyme disease? And again, why is long-term antibiotic treatment considered a "dangerous medicine" for Lyme disease and not for other medical conditions which have not been so politicized?

50. "He cites a recent case in which a 28-year-old woman, whose illness had been misdiagnosed as Lyme, died of an infection that she contracted during years of intravenous antibiotic therapy."

Did Grann get a copy of the literature on this case from this doctor? It is readily available, did he seek it out? Is this an accurate portrayal of the circumstances of the patient's death or could the fall from the table, as well as other patient circumstances, have had something to do with clot formation or complications which arose?

51. ""You can't just put chronic intravenous lines in people without having serious complications."

Did Grann check with anyone who routinely inserts intravenous lines to see what the experience generally is, as far as the level of incidents or "serious complications" occurring?

This is, in fact, a fairly common hospital procedure for patients routinely performed in the hospital in addition to in outpatient treatment settings. Statistics and anecdotal evidence should be available, what did it reveal?

52. "In a final attempt to control standards of treatment and rein in the Lyme lobby, state medical boards have started to investigate doctors across the country for prescribing months and even years of antibiotics."

Did Grann check with any state medical boards to see if this is their function, first of all, to "control standards of treatment and rein in the Lyme Lobby?"

It is far outside of the purview of medical boards to decide treatment standards and certainly to try to sanction doctors in an attempt to control the so-called "Lyme Lobby."

Did Grann check with any members of the "Lyme Lobby." Is there such a thing as the "Lyme Lobby?" In point of fact there is not.

Did Grann check with any medical boards who are acting against doctors to ascertain for what reasons they are created, empowered by state government, and under what conditions they charged are to act? Which states did he consult and what did they say.

In point of fact what is described is beyond medical board authority and the result of medical board functions being warped by a very different Lobby.

53. "One prominent Lyme physician I spoke with estimated that 80 percent of the medical community, if not more, agrees with Steere, particularly when it comes to antibiotics."

Again, balanced coverage requires checking with more than one physician, particularly in the other "camp."

Did Grann check with any other physicians, including any from the so-called "Lyme Lobby?" If over 80% of physicians agree with this philosophy as claimed it shouldn't be too hard to obtain others' opinions.

If 80% of physicians agree on something, does that make it correct, particularly if it is outside their medical specialty, their routine treating experience, or if in fact they have very little experience in consistently treating a particular condition. Isn't this simply a matter of a perception?

Would you like to have brain surgery performed by someone who had little experience in that particular specialty but in fact had "opinions" that agreed with 80% of other physicians about how you should be treated - without taking into consideration your unique case, presenting symptoms and severity?

54. "But to my surprise, Burrascano, in contrast to the doctors in medical lore who were devastated by feuds with the medical establishment, seemed unafraid."

Is Burrascano really feuding with medical establishment? Who defines medical establishment?

Instead, is "Medical Establishment" perhaps feuding with Burrascano? Wouldn't that be more accurate? Doesn't the acrimony in fact arise from the so-called "Medical Establishment" (reporter's term) against Dr. Burrascano?

Has Dr. Burrascano tried to dictate or limit the treatment behaviors of any of the "Medical Establishment" or act against any of their practices or licenses? In point of fact, he has not. Thus, who is feuding?

55. "Denouncing Steere, they carried signs that read "Ticked Off" and "Leave Our Doctors Alone." Some sat in wheelchairs; others leaned on canes."

Are these the dangerous "stalkers" Dr. Steere is referring to? What were their threatening actions? Shaking canes?

Did Grann physically see or hear of any manifestations of stalking while he was there attending the doctor rally in Albany?

Is this the threatening rhetoric that concerns Steere so much? "Ticked Off" and "Leave Our Doctors Alone?" Where would most rate this rhetoric in comparison, say, to an MTV Video?

56. "When they learned that I was doing an article on Steere, they began to give me their testimony, one after the other, on how he had refused to treat them,"

This statement is false. Most of the patients who appeared at the New York Lobby Day event were there in support of Dr. Burrascano. A minimal number of them were actually Steere patients or former Steere patients, if any.

Their acrimony to Steere is based on his insistence that there is no chronic or persistent lyme disease, despite ample documentation in literature worldwide, and based on his antibiotic guidelines which have influenced other doctors, not Steere, from treating them.

57. "other doctors on his side, had ridiculed them and dismissed them and called them nuts."

Isn't this behavior in fact borne out by Steere's comments about mental illness of patients in the article?

58. "Not long after, the latest and most extraordinary threat appeared in cyberspace: "[W]e still do URGENTLY need MORE of the following bonafide Letters of Complaint regarding Dr. Steere . . . in order to prompt an immediate . . . investigation."

What is extraordinarily threatening about asking for bonafide Letters of Complaint being sent to authorities?

Patients were not being solicited for "bogus" letters or to lie. Patients were being encouraged to submit legitimate complaints and go through the state process and procedures which had been set up for this purpose. How is this an "extraordinary threat" in Grann's mind or in the editor's?

If there is no basis to these complaints then why would anyone, especially Steere, regard them as an extraordinary threat, regardless of where the solicitation appeared?

Isn't the use of the term "cyberspace" a little extreme? The solicitation appeared on a well-respected Internet scientific discussion group for Lyme Disease patients.

59. "One letter, which I obtained, said: "I regard Allen Steere . . . as the antichrist. . . . I

owe what is left of my life to Dr. Joseph Burrascano."

How was a confidential letter to a medical board able to be obtained in this manner? Was this letter obtained or quoted with the patient's consent?

60. ``So far, the board has closed seven complaints from former patients, concluding that "there was no basis for disciplinary action." But John Coughlan, director of the Massachusetts Lyme Disease Coalition, says that there are more coming in: "There will be a day of reckoning." ''

More complaints are in fact in existence, and have already been filed with the board for some time now. Grann only stated the number of complaints which had been dismissed and not as a portion of the total.

Did Grann inquire as to how many complaints had been received by the Massachusetts medical board thus far and still remain under consideration? These are deliberate and critical omissions

61. ``In response to the complaints, an associate of Steere's wrote a letter to the board, saying: "A few online individuals obsessed with Lyme disease are denouncing him, stalking him at meetings, issuing vague threats and posting libelous nonsense." ''

Isn't this article claiming, in fact, far more than just a few individuals stalking Steere and thus the title? Wouldn't the premise of the article be at odds with this associate's statement characterizing "a few online individuals?"

Isn't "denouncing" in fact a First Amendment protected right of expression? Again, if stalking at meetings had been occurring, isn't this a criminal offense punishable by law? Were any charges filed or substantiated? Did anyone or any authorities observe any stalking?

Isn't "libelous nonsense" in fact a contradiction of terms - either something is libelous - or it is recognized as nonsense - and thus there is no damage done. Isn't libel an offense punishable by the courts? Has any attempt been made to file charges for libel?

What would constitute "vague threats?" Only one was mentioned in the entire article, i.e. "Steere has been scheduled for termination." Could that not in fact have varied meanings? What was the result of the investigation of this particular threat?

What are some of the other threats and why were they not mentioned? What about the "vague threats" - were they really a concern if they were merely "vague?" How were they worded, exactly? Patient's letters have been quoted, why not threats? Those are hardly confidential.

62. ``For our last interview, I was supposed to meet Steere at his house, where he was holding a small concert, but he changed his mind at the last moment, saying that he didn't want his family embroiled in the controversy. "The fear is, all it takes is one ... " he said, letting his thoughts trail off. ''

In the continuing descriptions of Steere by the reporter, many readers have commented on obvious paranoia. Do you suppose that this, and other described behaviors of Steere might in fact indicate the same mental illness he accuses patients of?

Who comes off in the article as sounding more psychiatrically challenged, Steere, or referenced patients concerned for their health and welfare as a consequence of physical illness for which they can not obtain adequate treatment.

63 . "Steere spoke about the possibility of using what he has learned from them to unravel the mystery behind other diseases that still have no known cause or cure."

Does this mean that we can expect in the future that victims of other diseases with no known cause or cure to be similarly acted against, labeled mentally ill for imagining that they are sick, deprived of needed treatment which has improved health for many - and that a new range of doctors in new disciplines will begin to experience harassment and threats to licenses - all due to Allen Steere broadening his scope of activity?

64. The 64 Million Dollar Question: Why would a newspaper of the stature of The New York Times publish an article which presented such biased, inaccurate, poorly documented and unbalanced coverage portraying patients exercising legitimate First Amendment Free Speech constitutionally guaranteed rights and title the article "Stalking" and label that exercise of free speech a crime?

At the beginning of the article, Grann states "hordes of patients had begun to stalk him." At the end of the article, Grann states "A few online individuals obsessed with Lyme disease are stalking him at meetings."

Which is it - a few - or hordes? And why are Grann's First Amendment Free Speech rights to make glaring errors, such as this one, protected and those same rights of Lyme disease patients to publicly object to the trivialization of their disease and denial of treatment - NOT? ''

Background by

``As we all know, David Grann's article on Allen Steere, MD [NY Times 6/17/01 - Sunday Magazine: "Stalking Dr. Steere Over Lyme Disease:"] and the politics of Lyme disease was calculated to achieve a certain end and is outrageous beyond words. Looking at the contents of the article in disbelief, likely most of us asked -- so, who is this David Grann?

As someone posted earlier, David Grann is a political writer. NONE of the articles Grann has written that can be found online at The New Republic website or at the New York Times website have anything to do with health, medicine or even science.

Described as a "senior editor and writer in Manhattan for the New Republic" in his New York Times wedding announcement (July 2, 2000), Grann's beat has been Washington politics.

Since graduating in 1996 from the Fletcher School of Law and Diplomacy at Tufts University, Mr. Grann has been Executive Editor of The Hill, a tabloid-size political weekly based in Washington and is now contributing editor for the New Republic --- another political magazine.

Go to the search engine at and type in "Grann." You will find that for his bread and butter Grann writes about the likes of Bill Clinton, Al Gore, Newt Gingrich, John McCain, Bill Bradley, George W. Bush, Bob Packwood, Mike Espry, Rick Lazio, Hillary Clinton, John Ashcroft, Lenora Fulani -- oh, and then there was an odd piece about a basketball star, Leon Smith.

That's about as far as he strays from his political beat. During 1997, his column for the New Republic was entitled "Washington Diarist."

You will find nothing on the New Republic website that would lead you to believe that Mr. Grann has the capacity to write a complex piece on the politics of Lyme disease.

Grann's educational background described in his NY Times wedding announcement is as follows: "A graduate of Connecticut College, he received master's degrees in international relations from the Fletcher School of Law and Diplomacy at Tufts University and in literature from Boston University."

How is it that a newspaper of the New York Times' stature allows someone with no background in science or medicine to undertake a critique like this? Is this ethical journalism? How did Mr. Grann obtain this assignment? ...

I think we should not only vigorously object to the content of his piece, but strenuously object to the fact he was assigned to write the article in the first place.''

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