More PR from Wormser

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

More PR from Wormser

Post by Lorima » Wed 31 Dec 2014 0:51

More repetitive PR from Wormser:

http://www.ncbi.nlm.nih.gov/pubmed/25482091
Expert Rev Mol Diagn. 2015 Jan;15(1):1-4. doi: 10.1586/14737159.2015.989837. Epub 2014 Dec 8.
Lyme disease: diagnostic issues and controversies.
Aguero-Rosenfeld ME1, Wormser GP.
Author information
1Department of Pathology, New York University School of Medicine, New York University Langone Medical Center and Bellevue Hospital Center, New York, NY 10016, USA.

Abstract
The diagnosis of Lyme disease is a controversial topic. Most practitioners and scientists recognize that Lyme disease is associated with certain objective clinical manifestations supported by laboratory evidence of infection with Borrelia burgdorferi sensu lato (the etiologic agent). There are others, however, who believe that patients with Lyme disease may have a wide variety of entirely nonspecific symptoms without any objective clinical manifestation and that laboratory evidence of infection by B. burgdorferi is not required to support the diagnosis. In reality, this perspective is not evidence based and would inevitably lead to innumerable misdiagnoses, given the high frequency of medically unexplained symptoms, such as fatigue and musculoskeletal pains, in the general population. Although those espousing this viewpoint do not believe that a positive laboratory test is required, nevertheless, they often seek out and promote alternative, unapproved testing methods that frequently provide false-positive results to justify their diagnosis. Herein, we provide a brief overview of Lyme disease testing, emphasizing current usage and limitations. We also discuss the use of nonvalidated procedures and the prospects for a reduction in such testing practices in the future.
KEYWORDS:
Lyme disease; controversy; diagnostic issues; misdiagnosis; misinformation

PMID: 25482091 [PubMed - in process]
"I have to understand the world, you see."
Richard Feynman

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: More PR from Wormser

Post by duncan » Wed 31 Dec 2014 10:27

I wonder how this qualifies as Science.

I think you hit the nail on the head, Lorima: This has the feel of PR about it.

The abstract to me reads more like a pitch for a group of Sponsors. Did it perhaps come from Advertising Age?

I find the last sentence particularly disconcerting: "We also discuss the use of nonvalidated procedures and the prospects for a reduction in such testing practices in the future." Sounds like it could be a talking point at a business strategy seminar on how to hobble the competition. Or, it could pass as part of a course description for a community college business course.

As I read the abstract, I couldn't help but be reminded of the old SNL bit: "Pepsi! No coke!"

dlf
Posts: 294
Joined: Sun 7 Apr 2013 15:36

Re: More PR from Wormser

Post by dlf » Wed 31 Dec 2014 15:20

Well, not so much an advertising piece as another "Editorial" from the IDSA Lyme advocacy group.

The full text is available from: http://informahealthcare.com/doi/pdfplu ... 015.989837

I include a snip from the full text which I found to be interesting. Also as predicted there is considerable reference made in the piece to both Advanced Labs and to the results of testing performed at “Lyme Specialty Laboratories” which outlines some of the material presented in the Fallon study pointing to the high number of positive results found among the healthy controls by testing at IGeneX. Needless to say, this group will use any and all information available to divert attention from any responsibility they might have with regards to poor testing and towards any suspect information being used or promoted to Lyme patients.

<snip>
A recent study conducted to assess the use of B. burgdorferi serology in the USA revealed that more than 3 million tests from 2.4 million patients were performed at large commercial laboratories in 2008; two-thirds of the tests were performed using the recommended two-step testing algorithm [10]. The overall cost of such testing was close to half a billion dollars. One of the conclusions of this study was that B. burgdorferi antibody testing is overused. Only about 12% of the tests yielded a positive result. In a recent survey on the experience of US healthcare providers with Lyme disease and other tickborne illnesses, it was found, contrary to recommended practice, that about 75% of providers would order antibody tests for Lyme disease when a patient presents with an EM skin lesion, and only 18.7% would initiate treatment without using antibody tests [11]. Thus, this study revealed that there are knowledge gaps on the diagnosis and treatment of Lyme disease by healthcare providers in the USA. Although two-step testing has been recommended for nearly two decades, healthcare providers at large have many misconceptions on its use. Many
believe that western immunoblots can be used independently of the first step; as stated above, this practice might lead to erroneous results and should be discouraged. Others interpret the presence of any band as a positive result. However, most if not all B. burgdorferi antigens are cross-reactive; therefore, immunoblot interpretation is dependent on the number and type of immunoreactive bands that are found. It should be further emphasized that the IgM immunoblot seropositivity is only of diagnostic use during the first month of early disease and should not be used to support the diagnosis in patients with a prolonged illness who are IgG seronegative. These misconceptions and misinformation may be reinforced by the results of testing performed at “Lyme Specialty Laboratories” (see below).
I leave the rest for you to read for yourselves. I would however like to point out that the CDC changed the diagnostic criteria for laboratory confirmation to include the use of single-tier IgG Western blots (that conform to the accepted Dearborn criteria) back in 2011.

I am also still very peeved that the Fallon study did not provide full disclosure regarding the banding information that would have been available from the testing for both the patients and "healthy" controls. That would have allowed for an understanding of the testing problems that need to be addressed within the specialty laboratories. So, unfortunately, at least some people trying to aid the Lyme community are providing lots of ammunition for these editorial rants.

duncan
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Joined: Wed 5 Sep 2012 18:48

Re: More PR from Wormser

Post by duncan » Wed 31 Dec 2014 17:29

These individual enjoy the press's ear. Certainly, they will have distorted the concept of ILADS and the good things it represents. It's hard to wrestle away that relationship, to open up the eyes of certain key medical journalists to the possibility they haven't been told the entire story.

We should have an independent patients' advocacy that focuses precisely on these sorts of issues. Building better relationships with the press by supplying them with proper information. Educational kits that document in concise fashion the sketchy maneuvering by some of the Old Guard. A brief history delineating where things went south. Seminal studies that run counter to the prevalent talking points usually embraced by IDSA types. The prospect of tens of thousands of patients infected with TBD's being tossed out into the cold for lack of reliable diagnostics,and unconscionable hurdles to obtaining a Lyme diagnosis. And the treatment failures...

If a proper balance were struck between opposing positions as those positions are represented in media, the patients' cause could only benefit. Right now, that isn't being done, certainly not as regularly or aggressively as it could be.

That would take a deliberate team to generate the material, and to disseminate it to the major media outlets. Phone calls, emails, etc. A team such as that would be point guard to a whole new approach to getting TBD information to the public through mainstream media.

This would not be a maverick physicians group. Instead, it would approach the Lyme Wars from the victims' vantage. It would tell the story of the patients.

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

Re: More PR from Wormser

Post by Lorima » Wed 31 Dec 2014 19:01

Thanks for the link, Dif.

Here's the fun summary of conflicts of interest:
Financial & competing interests disclosure
GP Wormser has received research grants from Immunetics, Inc., Rarecyte, Inc., and bioMerieux SA. He owns equity in Abbott; has been an expert witness in malpractice cases involving Lyme disease; is an unpaid board member of the American Lyme Disease Foundation; has been an expert witness regarding Lyme disease in a disciplinary action for the Missouri Board of Registration for the Healing Arts; and was a consultant to Baxter for Lyme disease vaccine development. ME Aguero-Rosenfeld has provided legal consultation on litigation involving Lyme disease. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.


Think these authors might be just a tad motivated toward maintaining the status quo? I especially like the last sentence, "The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed." As if it could get any worse than participating in malpractice cases, and involvement with the ALDF.
"I have to understand the world, you see."
Richard Feynman

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: More PR from Wormser

Post by duncan » Wed 31 Dec 2014 22:10

Everybody here is familiar with phrases like "sickness behavior" and "healthcare-seeking behavior." These terms, as well as other, are derived from a biopsychosocial school of thought that tries to portray many individuals with illnesses like chronic Lyme or PTLDS as not being sick at all. Instead, we suffer from functional disorders, or somatoform disorders. If we have sick children, they invoke Munchausen by proxy. In the old Soviet Union, they used to paint political dissidents with the psych label, and have them forcibly institutionalized, despite the resonating sanity of all those dissidents.

This sort of framing, of forced perspective, leaves me wondering if this is being placed on the table for us by these...doctors.

In effect, as it mentions in the IDSA Guidelines, we suffer nothing more than the aches and pains of everyday life. The implication is we are catastrophizing. Indeed, I had one US health agency official confirm her belief to me that that assessment was correct, at least in her opinion.

Take a look at the last paragraph of this editorial. It reads, "Until the cause of the ailments that afflict patients seeking attention for what they believe is Lyme disease..." Seeking attention? Why not just have said, "Until the cause of the suffering that afflict patients is determined conclusively..." But they had to throw in "seeking attention"? Wording is very important, and mark mine, that last paragraph was carefully crafted.

This is the sort of strategy that for me denigrates patients. Articles like this seem to promote the cause of a certain block of researchers/clinicians on the backs of the patients they purport to represent. I believe they have no problem whatsoever trying to jettison us into the psych dust bin, even when their own tests fail to support that label, and even when the numbers of sick people could run into the tens of thousands. Those people deserve better. We deserve better. And that this is even possible should be revealed to every newspaper publisher with integrity, and TV newsteam with a hunger for meaningful stories about the dark side of medicine.

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

Re: More PR from Wormser

Post by RitaA » Thu 1 Jan 2015 11:38

duncan,

Words and medical/scientific terminology do matter, and I believe that multiple definitions and the use of certain words and phrases may contribute to ambiguity and misunderstanding.

As an example, I view the use of “seeking attention” in the following context to be synonymous with seeking medical attention, seeking medical advice, or seeking medical help –- all of which are commonly-used phrases. Adding the word “medical” may have seemed awkward or superfluous to the authors or a copy editor, but that’s just a guess on my part.
Until the cause of the ailments that afflict patients seeking attention for what they believe is Lyme disease is better understood and managed, the controversy will likely continue.
“Sick role” was coined by a sociologist, and I don’t believe it wasn’t intended as a derogatory term at the time. Wikipedia does a pretty good job of summarizing both the origin and criticisms of a term that is used primarily (but not exclusively) by medical sociologists.

http://en.wikipedia.org/wiki/Sick_role
Sick role is a term used in medical sociology regarding sickness and the rights and obligations of the affected.[1] It is a concept created by American sociologist Talcott Parsons in 1951.

Parsons was a functionalist sociologist, who argued that being sick means that the sufferer enters a role of 'sanctioned deviance'. This is because, from a functionalist perspective, a sick individual is not a productive member of society. Therefore this deviance needs to be policed, which is the role of the medical profession. Genuinely, Parsons argued that the best way to understand illness sociologically is to view it as a form of deviance-which disturbs the social function of the society.

The general idea is that the individual who has fallen ill is not only physically sick, but now adheres to the specifically patterned social role of being sick. ‘Being Sick’ is not simply a ‘state of fact’ or ‘condition’, it contains within itself customary rights and obligations based on the social norms that surround it. The theory outlined two rights of a sick person and two obligations:

Rights:

The sick person is exempt from normal social roles
The sick person is not responsible for their condition

Obligations:

The sick person should try to get well
The sick person should seek technically competent help and cooperate with the medical professional

There are three versions of sick role: 1. Conditional 2. Unconditionally legitimate 3. Illegitimate role: condition that is stigmatized by others

Criticisms:

Rejecting the sick role.

This model assumes that the individual voluntarily accepts the sick role.
Individual may not comply with expectations of the sick role, may not give up social obligations, may resist dependency, may avoid public sick role if their illness is stigmatised.
Individual may not accept ‘passive patient’ role.

Doctor Patient relationship.

Going to see doctor may be the end of a process of help seeking behaviour, Freidson (1970) discusses importance of 'lay referral system'- lay person consults significant lay groups first.
This model assumes 'ideal' patient and 'ideal' doctor roles See- Murcott (1981), Sacks (1967), Bloor & Horobin (1975).
Differential treatment of patient, and differential doctor patient relationship- variations depend on social class, gender and ethnicity. See- MacIntyre & Oldman (1984), Buchan & Richardson (1973), Sudnow (1967).

Blaming the sick.

‘Rights’ do not always apply.
Sometimes individuals are held responsible for their illness, i.e. illness associated with sufferers lifestyle. (See Chalfont & Kurtz: 1971, on alcoholism).
In stigmatised illness sufferer is often not accepted as legitimately sick.

Chronic Illness.

Model fits acute illness (measles, appendicitis, relatively short term conditions).
Does not fit Chronic/ long-term/permanent illness as easily, getting well not an expectation with chronic conditions such as blindness, diabetes.
In chronic illness acting the sick role is less appropriate and less functional for both individual and social system.
Chronically ill patients are often encouraged to be independent.
The term “sickness behavior” was apparently first introduced in the 1980’s, and it was intended as scientific/medical shorthand for physiological and behavioural responses to infection in both animals and humans. Unfortunately, the term may lend itself to misuse by those who like to imply there may be a maladaptive psychological component to something with a very clear biological basis.

http://www.ncbi.nlm.nih.gov/pubmed/3050629
Neurosci Biobehav Rev. 1988 Summer;12(2):123-37.

Biological basis of the behavior of sick animals.

Hart BL1.


Author information
1Department of Physiological Sciences, School of Veterinary Medicine, University of California, Davis 95616.

Abstract

The most commonly recognized behavioral patterns of animals and people at the onset of febrile infectious diseases are lethargy, depression, anorexia, and reduction in grooming. Findings from recent lines of research are reviewed to formulate the perspective that the behavior of sick animals and people is not a maladaptive response or the effect of debilitation, but rather an organized, evolved behavioral strategy to facilitate the role of fever in combating viral and bacterial infections. The sick individual is viewed as being at a life or death juncture and its behavior is an all-out effort to overcome the disease.

PMID:
3050629
[PubMed - indexed for MEDLINE]
The following article abstract contains a definition of sickness behavior. It also hints at a proposed treatment approach for what is now considered “inappropriate, prolonged activation of the innate immune system” in certain medical conditions.

http://www.ncbi.nlm.nih.gov/pubmed/17088043
Brain Behav Immun. 2007 Feb;21(2):153-60. Epub 2006 Nov 7.

Twenty years of research on cytokine-induced sickness behavior.

Dantzer R1, Kelley KW.

Author information

1Integrative Immunology and Behavior Program, Laboratory of Integrative Immunophysiology, Department of Animal Sciences, University of Illinois at Urbana-Champaign, IL 61801, USA.

Abstract

Cytokine-induced sickness behavior was recognized within a few years of the cloning and expression of interferon-alpha, IL-1 and IL-2, which occurred around the time that the first issue of Brain, Behavior, and Immunity was published in 1987. Phase I clinical trials established that injection of recombinant cytokines into cancer patients led to a variety of psychological disturbances. It was subsequently shown that physiological concentrations of proinflammatory cytokines that occur after infection act in the brain to induce common symptoms of sickness, such as loss of appetite, sleepiness, withdrawal from normal social activities, fever, aching joints and fatigue. This syndrome was defined as sickness behavior and is now recognized to be part of a motivational system that reorganizes the organism's priorities to facilitate recovery from the infection. Cytokines convey to the brain that an infection has occurred in the periphery, and this action of cytokines can occur via the traditional endocrine route via the blood or by direct neural transmission via the afferent vagus nerve. The finding that sickness behavior occurs in all mammals and birds indicates that communication between the immune system and brain has been evolutionarily conserved and forms an important physiological adaptive response that favors survival of the organism during infections. The fact that cytokines act in the brain to induce physiological adaptations that promote survival has led to the hypothesis that inappropriate, prolonged activation of the innate immune system may be involved in a number of pathological disturbances in the brain, ranging from Alzheimer's disease to stroke. Conversely, the newly-defined role of cytokines in a wide variety of systemic co-morbid conditions, ranging from chronic heart failure to obesity, may begin to explain changes in the mental state of these subjects. Indeed, the newest findings of cytokine actions in the brain offer some of the first clues about the pathophysiology of certain mental health disorders, including depression. The time is ripe to begin to move these fundamental discoveries in mice to man and some of the pharmacological tools are already available to antagonize the detrimental actions of cytokines.

PMID:
17088043
[PubMed - indexed for MEDLINE]
PMCID:
PMC1850954
Free PMC Article

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: More PR from Wormser

Post by duncan » Thu 1 Jan 2015 12:46

Good finds, RitaA. Perhaps I should have written "embraced by the biopsychosocial school..", instead of derived.

Ambiguity should be anathema to scientific efforts. Precision matters. When scientists engage in equivocation, we need to ask why. Sometimes there is an agenda. Sometimes it is inadvertent. If it is inadvertent, then one can only hope that the scientists who acted carelessly when reporting their findings, took more care in exercising the scientific method that generated the data and inferences reported.

Terms like sickness behavior can be used by different medical disciplines and imply different things. Agreed. All the more reason to object to their usage in grey areas like chronic or disputed diseases. The fact that the phrase has been hijacked by the psychs can not be ignored precisely because of this. All one needs to do is looking at the English health care system to see where that or similar terms can take any given group of patients. Same with health-care seeking behavior. A problem I have with their use in contested diseases is that I'd wager most authors - because of the very nature of the diseases in question, that they teeter on the edge of no-man's land - most of such authors are very aware of the double meanings. Accordingly, if authors did not support the biopsychosocial model, they would avoid phrases like those. However, if the authors supported the school, those phases and terms would be employed.

Finally, you must judge the context the phrases were used in. Here I am not speaking to the context of a specific passage or sentence, but sometimes also the historical context of belief or theory that a group or fraternity of scientists may have indicated or demonstrated in the past.

velvetmagnetta
Posts: 469
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Re: More PR from Wormser

Post by velvetmagnetta » Thu 1 Jan 2015 16:23

In the case of the terms "sickness behavior" and "healthcare-seeking behavior", I think the source may be more important than the context. Coming from Wormser or Shapiro, these terms take on a medieval meaning where it's time to gather the tools for a blood-letting.

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