Bullying Borrelia

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Bullying Borrelia

Post by duncan » Sat 12 Jan 2013 21:59

No, Henry, you are wrong. A patient's experience with, and intimate vantage of Lyme is far from irrelevant. Your mistake is worsened when you factor in the acquired expertise some of these patients have accrued from years of dedicated research, privy to the same studies and research as any professional, exposed to the same theories and counter-theories. But that cannot be said of the researcher or clinician as it pertains to their appreciation of the patient - their insight is usually one-sided, and as such cannot boast the same depth of understanding. You might know more about the science; you might not. But you certainly do not know the experience first-hand of being victimized by a system you seem intent on defending. You cannot appreciate the illness itself. Or the artificial stigma contrived by a few that adheres to many. If you wonder at diminished public faith in so-called relevant experts, it is in part the apparent disdain those same individuals, at least as a group, hold for many of the sufferers they have promised to help.

Lorima
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Joined: Mon 29 Oct 2007 20:47

Re: Bullying Borrelia

Post by Lorima » Sun 13 Jan 2013 1:04

Good explanation, Duncan. I concur. The current fad in medicine, of ignoring the patients' experience, amounts to throwing out half the evidence. Henry, I suggest you study Jerome Groopman's How Doctors Think, for an overview of common cognitive errors in medicine. There are a lot of them, including that of ignoring the actual patients in favor of oversimplified diagnostic algorithms. 

Regarding Auwaerter's and Melia's accusations, I don't really see how they can claim the "culture of science" is under attack, by those of us criticizing the bad science of the Lyme disease establishment. Science thrives on criticism and rigorous thinking. The hierarchical culture of medicine is another matter. I think that is really what is threatened by the patients' protests. But that's all to the good, if medicine is serious about becoming "evidence-based".
"I have to understand the world, you see."
Richard Feynman

RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: Bullying Borrelia

Post by RitaA » Sun 13 Jan 2013 1:56

Lorima wrote: Henry, I suggest you study Jerome Groopman's How Doctors Think, for an overview of common cognitive errors in medicine. There are a lot of them, including that of ignoring the actual patients in favor of oversimplified diagnostic algorithms.
Lorima,

I would recommend that anyone interested in the topic read "How Doctors Think". I bought the book soon after it was published, and found it a very enlightening read.

Here's a pretty good recap, with many individual reviews that follow:

http://www.goodreads.com/book/show/1858 ... tors_Think
On average, a physician will interrupt a patient describing her symptoms within eighteen seconds. In that short time, many doctors decide on the likely diagnosis and best treatment. Often, decisions made this way are correct, but at crucial moments they can also be wrong -- with catastrophic consequences. In this myth-shattering book, Jerome Groopman pinpoints the forces and thought processes behind the decisions doctors make. Groopman explores why doctors err and shows when and how they can -- with our help -- avoid snap judgments, embrace uncertainty, communicate effectively, and deploy other skills that can profoundly impact our health. This book is the first to describe in detail the warning signs of erroneous medical thinking and reveal how new technologies may actually hinder accurate diagnoses. How Doctors Think offers direct, intelligent questions patients can ask their doctors to help them get back on track.

Groopman draws on a wealth of research, extensive interviews with some of the country’s best doctors, and his own experiences as a doctor and as a patient. He has learned many of the lessons in this book the hard way, from his own mistakes and from errors his doctors made in treating his own debilitating medical problems.

How Doctors Think reveals a profound new view of twenty-first-century medical practice, giving doctors and patients the vital information they need to make better judgments together.
Edited to add:

For those who may not be able to buy the book, there's an interview with Dr. Groopman, as well as an excerpt of the book here:

http://www.npr.org/templates/story/stor ... Id=8892053

Joanne60
Posts: 110
Joined: Mon 13 Feb 2012 15:49
Location: Guildford Surrey UK

Re: Bullying Borrelia

Post by Joanne60 » Sun 13 Jan 2013 10:53

Henry the research by the James Lind Alliance was conducted on published research JLA are funded by National Institute for Health research. This was also supported by Dept of Health and HPA who oversaw the process. You might not like their findings but I am sure many with accept their findings - that there are many uncertainties.
http://www.lymediseaseaction.org.uk/wha ... /research/

To switch from discussing that to my own personal experiences is somewhat unscientific. I won't waste my time defending my position but Duncan's words are appreciated.

Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: Bullying Borrelia

Post by Henry » Sun 13 Jan 2013 15:15

A careful reading of the Auwaerter and Melia paper reveals that, no matter how attentive a physician may be about "listening" to the patient's, symptoms and feelings -- which are not unique and specific for Lyme disease-- that alone is not sufficient for making a valid diagnosis of Lyme disease. Other objective evidence, derived from approved laboratory tests, are essential to make an accurate diagnosis. Some erroneously feel that all of this is just a matter of "clinical judgement" that includes only the former without the need for laboratory tests. However, valid clinical judgements are based on the results of evidence-based research and clinical practices that are generally accepted by the medical community'; clinical guidelines serve a useful purpose in that regard. In the absence of laboratory test data and based on symptoms alone, there is no definition of Lyme disease as a distinct clinical entity, i.e., a minimal definition that would enable one to distinguish Lyme disease from other non-infectious conditions with SIMILAR symptoms (e.g. fibromyalgia etc.). There is no such thing as seronegative Lyme disease, just as there is no such entity as a seronegative cholera infection. So, just because one "believes and feels" that they have Lyme disease and all of the relevant laboratory tests are negative, it doesn't mean that the tests are "no good"or that your physician isn't "listening" to you. It simply means that you have a medical condition that requires attention and proper care; however, it may not be due to Lyme disease and other possibilities should be explored to determine the basis for your symptoms. Doesn't that make sense?

duncan
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Joined: Wed 5 Sep 2012 18:48

Re: Bullying Borrelia

Post by duncan » Sun 13 Jan 2013 15:43

Really? And who is being condescending? Not to mention off track. Brings to mind the IDSA video about chronic lyme that is more or less dedicated to discussing cases that were never Lyme.

Ok, just a few quick observations, all merely my opinions, a patient:

1) Stop with assumptive closes. Please.
2) Stop indulging in what IMO appears to be incurable circular reasoning. Please.
3) What is "generally accepted" has been known to change, as to which our "evidenced-based" history amply attests. Just go ask Dr. Steere.
4) To which medical community are you alluding?
5) Remind me again who determines what a valid diagnosis is, and why that hasn't been challenged. Oh, wait...
6) Remind me again: There is no debate as to what constitutes a positive test, e.g. number of IgG or IgM bands, from a negative?
6) Weren't you just the other day busy conveying how accurate TT is? So, then am I to assume it does have limitations?

Now, do I still get a lolly pop? I believe and feel I deserve one. Are you listening?

Bagge
Posts: 596
Joined: Wed 19 Oct 2011 19:49

Re: Bullying Borrelia

Post by Bagge » Sun 13 Jan 2013 16:29

duncan wrote:Really? And who is being condescending? Not to mention off track. Brings to mind the IDSA video about chronic lyme that is more or less dedicated to discussing cases that were never Lyme.

Ok, just a few quick observations, all merely my opinions, a patient:

1) Stop with assumptive closes. Please.
2) Stop indulging in what IMO appears to be incurable circular reasoning. Please.
3) What is "generally accepted" has been known to change, as to which our "evidenced-based" history amply attests. Just go ask Dr. Steere.
4) To which medical community are you alluding?
5) Remind me again who determines what a valid diagnosis is, and why that hasn't been challenged. Oh, wait...
6) Remind me again: There is no debate as to what constitutes a positive test, e.g. number of IgG or IgM bands, from a negative?
6) Weren't you just the other day busy conveying how accurate TT is? So, then am I to assume it does have limitations?

Now, do I still get a lolly pop? I believe and feel I deserve one. Are you listening?
Spanky needs to come back and take on this nonsense. Please?
.

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: Bullying Borrelia

Post by Lorima » Sun 13 Jan 2013 17:05

I think it's a lot easier to understand Auwaerter, Henry, and the Lyme establishment in general, if we keep in mind that they have been trained in the "hidden curriculum" of medicine (as have all MDs, and many PhDs who work closely with MDs, like Barbara Johnson, Phil Baker, etc.) For MDs, the training is harsh and coercive, and happens when its subjects (medical trainees) are young and impressionable. (For example, read the full article cited, below, or search PubMed for "abuse of medical students" or "hidden curriculum".) 

Of course there are many individual doctors who overcome it, but none of them are found within the core Lyme establishment. Much of academic medicine, in general, is hobbled intellectually by this set of professional mores. 

The presentation in this article by Haidet and Stein seemed the most clear to me, but there are abundant references to choose from that document these beliefs, in books and journal articles. 

I think it's important for the general public to thoroughly understand this set of biases, because even those of us who have reason to know better, tend to fall for medicine's exaggerated self-image as "science-based".

I admit I'm inclined to judge this "curriculum" harshly. I'm a laboratory scientist who performs well-controlled experiments. It really irks me that people (like the Lyme establishment and its followers) who are obviously obeying this set of social rules instead of the requirements of real science, keep throwing around the word "science" in an attempt to co-opt its hard-won reputation for skepticism and accuracy. Many of these social beliefs are inimical to the conduct of science. If Auwaerter and colleagues can't comprehend this, they should be quiet and study, until they can understand the distinction. 

Ironically, however, this curriculum itself disables the ability to do that. Since it is instilled in very young adulthood, and constantly reinforced by professional peers, questioning its value in later life is unlikely, and would bring alienation from one's peers. 

The exceptions would be compelling personal experience that reveals it as a shared belief system, rather than "the way things are". Jerome Groopman's failed back surgery is an example. 

I've highlighted, below, the features that seem to me most incompatible with doing good science. The most important, with regard to Lyme disease science errors, is the avoidance of uncertainty and complexity, the obedience to hierarchy, and the assumption that subspecialists "outrank" generalists, even with regard to a slow, multisystem disease.
The Hidden Curriculum

Premise 1: Doctors must be perfect. 
Assumptions/messages: 
    1a) Doctors do not make mistakes.
    1b) The death of a patient represents failure by the doctor. 
    1c)  You can know everything if you just try hard enough.  

Premise 2: Uncertainty and complexity are to be avoided. 
    2a) There is always one right answer to any problem. 
    2b) Doctors never admit to not knowing something. 

    2c) Solving social and personal problems is not a primary goal of medicine. 

Premise 3: Outcome is more important than process.
    3a) It is OK to be rude when you are doing something really important.
    3b) You do not have to attend class to be a successful student. 
    3c) Communication skills are nice to have, but not essential.

Premise 4: Medicine takes priority over everything else. 
    4a) Doctors are married to medicine.
    4b) Medicine represents a higher calling than other professions. 
    4c) Leaving the hospital (to eat, sleep, etc.) is a sign of weakness. 

Premise 5: Hierarchy is necessary. 
     5a) You must not question doctors more senior than you. 

     5b) Nurses should not question the doctor's orders. 
     5c) Subspecialist care is better than generalist care. 

Adapted from:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1484835/
J Gen Intern Med. 2006 Jan;21 Suppl 1:S16-20.
The role of the student-teacher relationship in the formation of physicians. The hidden curriculum as process.
Haidet P, Stein HF.
Source
Houston Center for Quality of Care and Utilization Studies, Michael E. DeBakey Veterans Affairs Medical Center, Department of Medicine, Baylor College of Medicine, Houston, TX, USA. phaidet@bcm.tmc.edu
"I have to understand the world, you see."
Richard Feynman

Bagge
Posts: 596
Joined: Wed 19 Oct 2011 19:49

Re: Bullying Borrelia

Post by Bagge » Sun 13 Jan 2013 17:53

Lorima wrote:It really irks me that people (like the Lyme establishment and its followers) who are obviously obeying this set of social rules instead of the requirements of real science, keep throwing around the word "science" in an attempt to co-opt its hard-won reputation for skepticism and accuracy.
Henry wrote: ... no matter how attentive a physician may be about "listening" to the patient's, symptoms and feelings -- which are not unique and specific for Lyme disease-- that alone is not sufficient for making a valid diagnosis of Lyme disease. Other objective evidence, derived from approved laboratory tests, are essential to make an accurate diagnosis.
If you disagree with Henry's statement above, then licensed physicians practicing as medical intuitives using Autonomic Response Testing (ART), kinesiology, Chinese pulses, or zappers and Reiki would also be considered as being appropriate and accurate diagnosticians. Unless of course, one does consider such techniques and practitioners as science-based, as is depicted in the film unfortunately.
.

Henry
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Joined: Thu 10 Nov 2011 18:49

Re: Bullying Borrelia

Post by Henry » Sun 13 Jan 2013 18:40

Ah yes, I see. If you think that you have Lyme disease, then you actually have it. Keep shopping around for doctors until you find one willing to say that "you have IT". Don't trust the experts and those physicians who have treated hundreds of patients with Lyme disease. What do they know anyway. They are just part of a conspiracy and/or an establishment that make a lot of money off of Lyme disease -- strangely enough, by prescribing short term generic oral antibiotics, the total cost of which is about $40. Can't really get rich that way, can you. Compare that to the costs of some of the treatment recommended by LLMDs.

Forget the tests. Lyme disease is such an individualized disease; only those who have it can tell you how if effects them personally and how to treat their very own, personal case of Lyme disease. There are no general rules or assumptions. No proof of therapy is needed, as long as SOMEONE -- perhaps due to a placebo effect-- says that some wacko therapy cured them. Just " go for it" and believe it works. If someone suggests a new therapy and claims -- with no evidence-- that it works, go for it. And what is scientific proof anyway? Who needs it when ignorance is bliss..........

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