Dumler Quotes from IOM Workshop
16:04- Dumler
"..frankly intimidation from what I've heard.."
"... which I would include the disease pathogenesis and in second category drugs, treatment regimens and adjunctive support, but I've been told that is off bounds so I will not discuss that further today."
"...don't want to increase the incidence of false-positives..."
53:39- Dumler
"I'll be very frank about this and those people who know me know I've been quite intimidated by some of the causative responses directed toward me as a result of my participation in the IDSA guidelines preparation..."
".... who cares about patients who wants to be certain good data is put out there."
"I reviewed these very carefully. I agree largely with the comments, but I am always open to discussing these things. If I'm proven wrong I'm willing to go forward to do do that as well..."
"But what I'm not willing to do is to participate when I'm when my my when my reputation is besmirched and I'm am accused of having conflicts of interest that don't exist, I'm accused of being in the back pocket of insurance companies and things like that- those are not conducive to me being able to function along side patient advocates and other clinicians. I think many people out there that I've talked with... but I don't want to get into a position where I'm feeling continously intimidated .... but it is an overall feeling that sometimes we get out of this... I would prefer not to have that."
"See if we can't actually figure out how to fix those things together. I really do believe an ACTG -like clinical group would really facilitate our coming together it would bring a critical mass of patients together to try to solve these issues together, but the intimidation, the negative comments have really got to stop."
http://www.tvworldwide.com/events/iom/101011/default.cfm
Dumler Quotes
Dumler- recording, start at 16:04
"I'll be very frank about this and those people who know me know I've been quite intimidated by some of the causative responses directed toward me as a result of my participation in the IDSA guidelines preparation...
.... who cares about patients who wants to be certain good data is put out there.
I reviewed these very carefully. I agree largely with the comments but I am always open to discussing these things.
If I'm proven wrong I'm willing to go forward to do do that as well...
But what I'm not willing to do is to participate when I'm when my my when my reputation is besmirched and I'm am accused of having conflicts of interest that don't exist, I'm accused of being in the back pocket of insurance companies and things like that... those are not conducive to me being able to function along side patient advocates and other clinicians I think many people out there that I've talked with...
But I don't want to get into a position where I'm feeling continously intimidated.... but it is an overall feeling that sometimes we get out of this....
I would prefer not to have that.
See if we can't actually figure out how to fix those things together. I really do believe an ACTG like clinical group would really facilitate out coming together it would bring a critical mass of patients and it would bring a critical mass of patients.. together to try to solve these issues together, but the intimidation, the negative comments have really got to stop."
53:39
"..frankly intimidation from what I've heard.."
"... which I would include the disease pathogenesis and in second category drugs, treatment regimens and adjunctive support, but I've been told that is off bounds so I will not discuss that further today."
"...don't want to increase the incidence of false-positives..."
IOM Speaker Panel
http://www.tvworldwide.com/events/iom/101011/default.cfm
“As a laboratorian, I like to think that I diagnose infections,” says J. Stephen Dumler, MD, professor of pathology and associate director in the Division of Medical Microbiology, Johns Hopkins Medical Institutions. “But with Lyme disease I am helping clinicians confirm their clinical impression.”
“One thing that continually harasses me is requests from clinicians for PCR for Lyme disease,” Johns Hopkins’ Dr. Dumler says. “There is a general belief that PCR is a panacea, but our best data now say that PCR in plasma, blood, or CSF is a very insensitive test for Lyme disease.”
“After 30 days the specificity of the IgM immunoblot as a single assay alone is very poor,” Dr. Dumler says. “It is more likely to be false-positive than true positive.”
“My personal opinion is that, because of reservations due to the specificity issue, more testing will be required,” he says. “The last thing we need is a lot more people out there with a misdiagnosis of Lyme disease."
***
"The complete spectrum of Lyme disease is still not known. Suspected chronic Lyme disease is not proven in many patients
who are treated empirically on the basis of highly nonspecific clinical findings that could be easily attributed to multiple etiologies. Long-term therapy under these uncertain circumstances can lead only to uncertain conclusions."
http://www.journals.uchicago.edu/doi/pdf/10.1086/516164
QUOTE- "“chronic Lyme disease.” This term is used by a small number of practitioners (often self-designated as “Lyme-literate physicians”) to describe patients whom they believe have persistent B. burgdorferi infection, a condition they suggest requires long-term antibiotic treatment and may even be incurable. Although chronic Lyme disease clearly encompasses post–Lyme disease syndrome, it also includes a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection." Source
QUOTE- "When physicians who diagnose chronic Lyme disease obtain laboratory tests to provide support for their diagnoses, they often rely heavily on “Lyme specialty laboratories.” Such laboratories may perform unvalidated in-house tests that are not regulated by the Food and Drug Administration, or they may perform standard serologic tests interpreted with the use of criteria that are not evidence-based.1" Source
QUOTE- "Antibiotic therapy can cause considerable harm to patients treated for chronic Lyme disease or post–Lyme disease symptoms." Source
QUOTE- "Although anecdotal evidence and findings from uncontrolled studies have been used to provide support for long-term treatment of chronic Lyme disease,18-20 a response to treatment alone is neither a reliable indicator that the diagnosis is accurate nor proof of an antimicrobial effect of treatment." Source
QUOTE- "It is highly unlikely that post–Lyme disease syndrome is a consequence of occult infection of the central nervous system." Source
QUOTE- "dditional evidence against the hypothesis that chronic symptoms are due to persistent infection is the fact that antibodies against B. burgdorferi in many of these patients are undetectable, which is inconsistent with the well-established immunogenicity of the spirochete's lipoproteins." Source
QUOTE- "Although B. burgdorferi can develop into cystlike forms in vitro under certain conditions that can be created in the laboratory,50 there is no evidence that this phenomenon has any clinical relevance." Source
QUOTE- "How should clinicians handle the referral of symptomatic patients who are purported to have chronic Lyme disease? The scientific evidence against the concept of chronic Lyme disease should be discussed and the patient should be advised about the risks of unnecessary antibiotic therapy. ... If a diagnosis for which there is a specific treatment cannot be made, the goal should be to provide emotional support and management of pain, fatigue, or other symptoms as required. Explaining that there is no medication, such as an antibiotic, to cure the condition is one of the most difficult aspects of caring for such patients. Nevertheless, failure to do so in clear and empathetic language leaves the patient susceptible to those who would offer unproven and potentially dangerous therapies. Additional advice to clinicians is included in the Supplementary Appendix, available with the full text of this article at www.nejm.org." Source
QUOTE- "Physicians and laypeople who believe in the existence of chronic Lyme disease have formed societies, created charitable foundations, started numerous support groups (even in locations in which B. burgdorferi infection is not endemic), and developed their own management guidelines." Source
QUOTE- "Chronic Lyme disease is the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections. Other examples that have now lost credibility are “chronic candida syndrome” and “chronic Epstein–Barr virus infection.”57,58 The assumption that chronic, subjective symptoms are caused by persistent infection with B. burgdorferi is not supported by carefully conducted laboratory studies or by controlled treatment trials. Chronic Lyme disease, which is equated with chronic B. burgdorferi infection, is a misnomer, and the use of prolonged, dangerous, and expensive antibiotic treatments for it is not warranted." Source