Jun 08 2009

CT Politicians Protect Lyme Quackery

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Comments: 44

The Connecticut state senate unanimously passed Public Act No. 09-128: AN ACT CONCERNING THE USE OF LONG-TERM ANTIBIOTICS FOR THE TREATMENT OF LYME DISEASE.The bill had previously passed the state House, also unanimously.

This is a terrible bill that is both anti-science and anti-consumer protection. How it passed both houses without dissent reflects exactly why such micro-management decisions should not be made by politicians.  It is the result of lobbying by a narrow interest group and does not reflect either the state of the science on Lyme disease nor the proper role of regulation to ensure standards of care within medicine.

The bill now awaits Governor Rell’s signature, which given the heavy political support for this bill seems almost certain.

This bill represents much which is wrong with the state of science and medicine in the US.

Standard of Care vs Health Freedom

In the US each state is responsible for the regulation of medical practice, through each state’s board of health. They license physicians, nurses, and other health care practitioners, and they are also responsible for protecting the public by maintaining an appropriate standard of care.  They primarily do this by disciplining practitioners – suspending or even revoking their license or restricting the scope of their practice.

Generally there are two legal standards at work. The lower or easier standard is for the state to investigate the practice of a licensed professional to determine if their actions are substantially below the standard of care, and if they determine that it is, discipline is appropriate.

The higher standard is for the state to act against a health care provider based upon harm that has already been done to one or more specific patients/clients based upon the complaints brought by those clients. This higher standard is not at issue – there is general support for the rights of patients to bring complaints against health care providers. And of course, this is parallel to and separate from the civil system of malpractice.

Incidentally, there are also ethical standards that can be enforced by the state. Some of these have nothing to do with the standard of care (like not sleeping with your patients), but rather with professionalism. But some do have implications for actual practice, for example not practicing outside of your area of training.

What is at issue here is the capacity of state licensing boards to monitor and maintain a minimal standard of care and to discipline providers who violate this standard of care. This standard has been under continuous assault to weaken and even eliminate it, in the name of health care freedom.

It is important to note that the state boards of health do not determine what the standard of care is – they just enforce it. The standard of care, by definition, is the consensus of practice among recognized experts. The standard is based largely upon the published evidence as incorporated into practice based also on experience and a basic scientific understanding of physiology. Often there are published guidelines by professional organizations – essentially saying, “this is the standard of care.”

State regulators turn to the experts to tell them if what a licensed professional is doing is acceptable within the standard of care or if it falls unacceptably below. The standard of care is a rapidly moving target, as new evidence is published, technology evolves, and practices change.

What the CT state legislature has done with their recent decision is to intrude on the process of determining what the standard of care is. It is the role of politicians and government to determine what to regulate, what the goals of regulation are, and to set up a mechanism for determining the details and enforcement of regulation. But it is not their role to determine those details themselves. As I described above, that is best left to experts.

CT state representatives and senators have unanimously decided to carve out an exception in the standard of care for the use of antibiotics for the treatment of chronic Lyme disease. The bill essentially says that the state cannot discipline a health care practitioner solely for using long term antibiotics to treat chronic Lyme disease – a controversial topic. In so doing they have decided to impose the political process and their imperfect understanding of a complex scientific issue above the consensus of scientific opinion. While I believe they probably thought they were doing good, they have done harm, even malfeasance, by displaying astounding arrogance and naivete.

The political process is simply not capable of tracking the standard of medical care. It is too slow a process and too subject to political bias. Will the state change this law as new scientific evidence is published? I highly doubt it. This is one of those laws that will linger on the books for decades, regardless of scientific opinion and new evidence.

Do these legislators really believe that the information they received was complete and representative? Rather – they were lobbied by narrow interest groups (Lyme Disease Association, Inc., Newtown Lyme Disease Task Force, Ridgefield Lyme Disease Task Force,Time For Lyme, Inc., Eastern Connecticut Chapter, Lyme Disease Association) who are dedicated to a specific minority scientific conclusion regardless of the evidence. It is always the case that those with a vested interest in a political outcome are the ones with the attention and endurance to push for their cause.

This is why the legislative process is simply not designed to micromanage the standard of care. The legislators should have had the wisdom to simply acknowledge that determining a specific, complex, and evolving scientific question is simply not within their purview or the capability of the legislature.

This bill is a specific application of a more global effort to weaken enforcement of the standard of care. Many states have so-called health care freedom laws which carve out exceptions for “alternative” practices. Essentially they say that the state cannot act against the license of a practitioner for any practice (no matter how outrageous) if that practice is “alternative.” Some states require that patients be informed that a specific practice is “alternative”, but that’s about it. I doubt that the average patient would understand by “alternative” they mean not subject to any standard of care and beyond the reach of regulation, unless the burden of proving harm is met after the fact.

Tomorrow I will discuss the scientific questions at hand – is long term antibiotic use appropriate for  chronic Lyme infection, and does chronic Lyme infection exist and how is it diagnosed?

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44 responses so far

44 Responses to “CT Politicians Protect Lyme Quackery”

  1. weingon 08 Jun 2009 at 9:16 am

    You gotta be kidding me. How come these guys can do it, and we can’t get legislation favorable to physicians through the CSMS? I have one patient with “chronic Lyme infection” but he is currently getting antibiotics, vitamins, and even reiki from someone in Massachusetts.

  2. PalMDon 08 Jun 2009 at 9:33 am

    Ping! and Ping! again

  3. pecon 08 Jun 2009 at 12:14 pm

    Do you have any idea how long it took for the medical profession to acknowledge (non-chronic) Lyme disease to begin with? Or how long it was before they determined that it’s a bacterial infection? Did you ever read the history of Lyme disease, and are you aware that the “original” Lyme disease patient spent time in a psychiatric hospital, since no MD would believe the reality of her symptoms (and the symptoms of her whole family and many of her neighbors)?

    You assume, without thinking twice, that patients are hypochondriacs and idiots.

    I have no opinion on chronic Lyme, but I can’t imagine how you can be so sure that all the bacteria are destroyed with one or two months of antibiotics. How can you possibly be so certain? If a patient still has symptoms, odds are something is still wrong. No matter what your text book of the moment happens to say.

  4. Steven Novellaon 08 Jun 2009 at 12:21 pm

    pec is a master of the irrelevant, and making negative straw man assumptions about others.

    Nothing of what you wrote has any relevance to the discussion above, or my opinions on Lyme disease which I will deal with tomorrow as promised.

  5. Dr J In Trainingon 08 Jun 2009 at 12:51 pm

    I think you give pec too much credit by calling her a “master” of anything.

    And to just repeat what Dr. Novella just said:

    Whether or not Chronic Lyme is real or not is irrelevant to this post. This post is about politicians (Non-physician, non-scientist) regulators determining standard of care. This should be infuriating to all physicians.

  6. pecon 08 Jun 2009 at 12:57 pm

    “This post is about politicians (Non-physician, non-scientist) regulators determining standard of care. This should be infuriating to all physicians.”

    The history of Lyme disease shows that sometimes physicians are the last to wake up to a reality.

  7. pecon 08 Jun 2009 at 1:00 pm

    “This should be infuriating to all physicians.”

    Yes some of you are infuriated every time non-physicians dare to use their brains and disagree with you on anything. Since I happen to have read the history of Lyme disease I know how very wrong the experts can be, and how badly patients can be treated. Whenever something comes along you are not familiar with, your first assumption is the patients are crazy or hypochondriacs, or just plain idiots.

    There is a large number of patients claiming to have chronic Lyme, and this means nothing to mainstream medicine. Because you “know” how stupid patients are.

  8. weingon 08 Jun 2009 at 1:13 pm

    “Because you “know” how stupid patients are.”
    Yes, we do. And, as result we know how the sCAM artists can and do take advantage of them. And the sources for your history of Lyme were?

  9. Just4Funon 08 Jun 2009 at 2:36 pm

    You say this is only the political side and yet the “quackery” in the title clearly states otherwise.

    I agree I don’t want legislators in my doctor’s office but you seem to have forgotten that it’s the insurance companies currently running the show. I’m all for letting my doctor make medical decisions but I disagree that they can currently do that, as proven by the numerous cases of intimidation of Lyme Doctors.

    Ahead of tomorrow’s hit piece on Lyme disease I’ll give you some facts.

    1) _NO_ long term study of the efficacy of ABX against Lyme has ever been done. To the best of my knowledge, and according to doctors I’ve asked, the longest was about 2 months. Yet you’re certain they don’t work. Why?

    2) I know, personally, dozens of patients who have seen the very best medical doctors for many years of every type and variety and had hundreds of test run as their condition worsened and no diagnosis was made. Yet, miraculously, when treated with ABX (for longer than two months) they got better. And yes, I’m talking about people in wheelchairs or bed ridden, one of whom was my wife. You will never convince me long term ABX is ineffective.

    3) I know people that are given ABX for Acne but if it’s for Lyme it’s a crime?

    4) People have died of Chronic Lyme Disease (as in there is an infection present), which you claim doesn’t exist and so they were untreated. Autopsies have proven otherwise with clear proof of infection. Ask Dr. Fallon. Let’s see does “Do No Harm” allow you to kill patients by inaction? I can prove that that is exactly what IDSA has done.

    5) Dr. Alan MacDonald has sampled the brain’s of many cadavers and found strong evidence to support the continued presence of the Borrelia burdorferi spirochete.

    6) The only other common Spirochetal, human born, illness is Syphilis. It does NOT go away if left untreated. It’s etiology is very similar to Chronic Lyme Disease. Yet Lyme Disease apparently just goes away on it’s own if left untreated?

    Have you ever heard of Occam’s Razor? The simplest solution is not to concoct some crazy story trying to show that a progressing disease is caused by previous auto-immune damage. In that case it wouldn’t progress, would it?

    Instead, please don’t think “we’re” stupid. Trust me, we’re not. Is all we want is for our doctors to be able to treat, as they see fit. No, I don’t want legislators deciding that, but neither do I want the insurance companies making that decision, as they’re doing now. Scariest of all is the misinformation campaign being waged by the likes of you and your ilk.

  10. Steven Novellaon 08 Jun 2009 at 2:50 pm

    Lots of straw men in there – not very conducive to a meaningful discussion. I will wait until tomorrow’s post to deal with the evidence for Lyme disease.

    But just to highlight of a few of the straw men.

    Those who are skeptical of the notion of chronic lyme infection, as it is sometimes diagnosed, do NOT premise their skepticism on the belief that patients are stupid, nor that patients with symptoms are not sick or do not have a disorder.

    No one is saying not to treat a chronic infection.

    So you wasted a lot of time arguing against positions that are not even part of the discussion.

    I also take issue with the notion that insurance companies determine what is the standard of care. That is a gross misrepresentation of reality. I am not defending them, and they can be obstructionist – but that is completely separate from the issue at hand here.

    The real question is – should each individual physician be able to make whatever medical decisions they wish without being held to any standard, or should there be a safety net in place to maintain at least a minimal standard?

    Pec is saying that the system is so broken we cannot have a standard, a position that seems to be based on nothing but her anti-science bigotry and cynicism.

    You seem to be saying there should be not standard – a position I fund untenable.

  11. son 08 Jun 2009 at 3:26 pm

    May I mention peptic ulcers and H Pylori? Some quotes from Helicobacter Connections, Nobel Lecture, December 8, 2005
    by Barry J. Marshall. And with these I rest my case…

    “I realized then that the medical understanding of ulcer disease was akin to a religion. No amount of logical reasoning could budge what people knew in their hearts to be true. Ulcers were caused by stress, bad diet, smoking, alcohol and susceptible genes. A bacterial cause was preposterous.” (p 267)

    And some more quotes:
    “To quote historian Daniel Boorstin: “The greatest obstacle to knowledge is not ignorance; it is the illusion of knowledge”. The relevance of his quotation is that in 1982 the cause of peptic ulcer was “already known”. Ulcers were caused by excessive amounts of acid secondary to personality, stress, smoking, or an inherited tendency. … Thus, when Helicobacter was revealed, doctors were not looking for a new cause of peptic ulcer, that territory had already been taken by the illusion of knowledge.” (p 251)

    “When I presented our data in October 1982 at a meeting in Perth, a local gastroenterologist said to me; “Barry you’ve got that wrong, people with duodenal ulcers don’t have gastritis.
    The stomach is usually normal.” From what I had seen of Warren’s biopsies, I could say “How do you know since nobody ever biopsies the stomach of duodenal ulcer patients?”” (p 259)

  12. pecon 08 Jun 2009 at 3:40 pm

    “Pec is saying that the system is so broken we cannot have a standard, a position that seems to be based on nothing but her anti-science bigotry and cynicism.”

    Total BS. I am NOT saying that, and never did. And I AM NOT ANTI-SCIENCE! For the zillionth time. I am against mistaking materialist ideology for science — they are NOT the same!

    I didn’t say the system is broken. All I am trying to say is that MDs are human beings, not all-seeing prophets! I am advocating RESPECT FOR PEOPLE, even if they didn’t go to medical school!

    “I also take issue with the notion that insurance companies determine what is the standard of care.”

    The insurance companies have fought very hard against long-term APX because it’s expensive. I can’t believe you don’t know that.

  13. weingon 08 Jun 2009 at 3:42 pm

    “I realized then that the medical understanding of ulcer disease was akin to a religion. No amount of logical reasoning could budge what people knew in their hearts to be true. Ulcers were caused by stress, bad diet, smoking, alcohol and susceptible genes. A bacterial cause was preposterous.”

    Yet, once the evidence came in, and could no longer be argued with, a bacterial cause was accepted. I think that shows healthy skepticism.

  14. weingon 08 Jun 2009 at 3:45 pm

    “I am against mistaking materialist ideology for science — they are NOT the same!”

    Who says any ideology is science?

  15. pecon 08 Jun 2009 at 3:48 pm

    “And the sources for your history of Lyme were?”

    I read all the histories of Lyme I could find — 3 or 4 I guess. One was written by the original Lyme disease patient (Mrs. Murray), who lived in Lyme, CT. It was her persistence and determination that finally convinced medical researchers to look for an infectious agent in the area. Most people with the infection gave up or were resigned to lifetimes of chronic illness and disability. Young children were diagnosed with rheumatoid arthritis and put in wheel chairs. Mrs. Murray’s children were very sick and she would not give up trying to find out why. She was sick also, but her determination really came from being a mother with sick children, and she would not quit although it took years and years.

    I read several other histories and all agreed with her account. A few MDs were helpful but many were very arrogant and close-minded. Eventually some hard-working researchers figured it out.

  16. Steven Novellaon 08 Jun 2009 at 5:06 pm

    pec – I know what you claim, but since you just knee-jerk accuse me of materialist ideology for all of my scientific opinions, as well as any scientific consensus you don’t like, you are effectively anti-science.

    And this has nothing to do with respect for patients – that is another classic pec straw man. I respect patients, and I don’t assume anyone is stupid or dismiss their experience. But that does not mean that their interpretation of the evidence is accurate. I can still evaluate the science and come up with my own opinion about it. That’s what I have spent my adult life doing.

    That H. pylori was denied despite evidence is a common myth, not backed by the historical record. Barry Marshall greatly exaggerated, probably unconsciously, the degree to which his findings were denied in order to magnify the drama of the breakthrough. http://www.chsourcebook.com/articles/hpylori.html

    I turns out that acceptance reasonably tracked along with the evidence, as one would expect.

  17. Steven Novellaon 08 Jun 2009 at 5:07 pm

    I would also point out that your average physician “in the field” as we say, is not likely to be able to deal with a novel disease. They are also not the ones to who set the standard of care.

    It is generally academics and clinical researchers who do this – like the ones who figured out that Lyme disease was a new spirochete infection.

  18. pecon 08 Jun 2009 at 5:37 pm

    I think you are unaware of how much of the Lyme disease progress resulted from patient activism. Yes I appreciate the hard work and intelligence that went into the research, but Mrs. Murray had to work extremely hard to direct attention to the disease. And I do not think you and other “skeptical” MDs have very much respect for patients. That is because you think only people with Western scientific training are capable of rational thought. And even highly trained scientists are suspect if they stray from your materialist course.

    I am in no way anti-science. I just don’t think you have to be a scientist to be intelligent or to have valid opinions.

    I am a scientist in that I have a scientific education, and I think scientifically, in general. But I also believe in common sense and intuition, and all the other ways of knowing that people use when a formal scientific approach is not practical or feasible. And that happens a lot.

    Mrs. Murray, who had no scientific training, could see that something in Lyme was making people sick. Common sense told her that all these similar cases were not just a coincidence.

    The “skeptics” at these blogs often express disdain for common sense, and they generally have little use for the reasoning of non-scientists. You want people to look up to you as authorities, to not trust their own intelligence.

    This is because you can see that people of all times and places have seldom followed the materialist ideology. Therefore, in your view, most people of all times and places have been wrong and subject to delusions. Therefore, ordinary common sense cannot be trusted.

    I am sure I will be misunderstood, as usual. I am NOT saying common sense is all-powerful and infallible. I am saying, again, that most things are unknown to us. Science is one tool we can use, but it is slow and tedious and expensive. We often make decisions that can’t wait for a big controlled experiment. And many questions cannot be decided by experiments anyway.

    I respect people in general, and nature. Materialists do not really respect either.

  19. CKavaon 08 Jun 2009 at 6:51 pm

    Classic pec quotes 2009 edition:

    1. I respect people in general, and nature. Materialists do not really respect either.

    2. I am a scientist in that I have a scientific education, and I think scientifically, in general.

    3. I am in no way anti-science.

  20. weingon 08 Jun 2009 at 8:23 pm

    I remember as an intern, having young patients going into respiratory distress with pneumocystis carinii pneumonia. We used whatever weapons we had at our disposal but their immune systems were shot. It took a while before we found the cause. I can imagine a similar situation with the early recognition of Lyme disease. As Steve said, we are in the trenches. Others are doing the research in academic centers. They give us the weapons and ammo to deal with the diseases. It sure isn’t the legislators.

  21. mat alfordon 08 Jun 2009 at 9:59 pm

    CKava,

    I’ll check with the librarian, but I believe the 2009 edition is spread over 43 volumes already…

  22. Mully410on 08 Jun 2009 at 10:22 pm

    Wow. I think I just got an aneurysm…

  23. son 09 Jun 2009 at 2:03 pm

    In my opinion B Marshall did not exaggerate in the quotes. Sure, he may have added some hyperbole, but so what. Hyperbole is pretty common on this blog too.

    And “Peptic ulcer” is not the only disease where acceptance of simple psychosomatic models, or just plain exaggerated mistrust of any notions against current dogma, has delayed proper “gold standard” research.

    My point is that medicine is very authoritarian for good and bad, and that entrenched beliefs are difficult to eradicate, as many controversies over the years indicate. As you yourself point out there is of course, on average, a difference between the average MD and a researcher. But the point is that patients have to pass the, uhm, needle eye of the “average physician”.

    Regardless of that, the list is long of ailments that have been blamed on the patient (“psychosomatic”) by “average physicians”, experts and researchers alike, until solid research evidence uncovered and proved the ultimate physiological causes, not just any proximate explanations.

    Sometimes this was because the research was just lacking for various reasons (e.g. “’cause everybody knew”) and sometimes the research methods needed were long not available.

    Yes, the human body is complex but blaming patients for somatizing etc, because you, as an MD, do not know the causes is pointless and unscientific. There is always a physiological / biological reason. It may just be very complex to untangle and decide what is pathological and what is within the borders of normal variation.

    And unless the research is ironclad a modicum of, well, humility is becoming in any debate regarding these topics.

    If chronic lyme disease is a non-disease or not is still not ironclad evidence. More research is needed into alternative causalities. If some patients get better they may have had another condition (as noted in the other post) that got exacerbated. So maybe this legislation is helpful for some patienst anyway (until this topic is more well researched). If they get better, better for them. Right?

    And some aditional quotes and comments:

    I especially like this quote (my asterisks) from a review (of “Asthma. Social and Psychological Factors and Psychosomatic Syndromes; Advances in Psychosomatic Medicine, Volume 24″, E. S. Brown, ed. Basel, Switzerland, Karger, 2003)
    “in 1960, I learned that 50% of asthmatics had positive intradermal test results, and were deemed “allergic”; the remainder were given labels such as nervous, constitutional, intrinsic, or psychosomatic **according to the physician’s model of the disease**” (Gabriel Laszlo, MD, CHEST June 2004 vol. 125 no. 6).

    The point here is just that “according to…”. Just as Marshalls statement “I realized then that the medical understanding…”

    (Btw may I suggest “Fibromyalgia wars” in The Journal of Rheumatology April 1, 2009 vol. 36 no. 4 671-678.)

  24. Just4Funon 09 Jun 2009 at 3:13 pm

    I’m not suggesting there should be no standards of care, only that those standards should not be so draconian as to stifle open-mindedness and treatment while patients suffer. How can there be medical progress if all innovation is stifled?

    Please read Pam Weintraub’s book “Cure Unknown”. You may come away with a different view of things.

    Talk to one of the twenty or so doctors (we see one of them), such as Dr. Burrascano that were attacked for treating Chronic Lyme Disease. They feel the “attacks” were invoked by the Insurance Companies. I know that Dr. Jemsek directly associates the attacks on him with Blue Cross.

    Watch “Under Our Skin”.

    I would argue that the case, to at least consider a persistent infection, is overwhelming. I’d be happy to see more research on the subject and yet the bills HR 741 and S 1708 are vehemently fought by the IDSA and they’re only for “Education and Research”. Is research so bad?

    Similar to the Ulcer anecdote I’m drawn to the famous story of the physician that suggested that washing hands before delivering a baby, and after examining cadavers, might help the infant mortality rate. He documented and proved the conjecture and yet was humiliated out of practice to ultimately die in disgrace. Perhaps IDSA awaits the same fate in regard to Chronic Lyme Disease.

  25. Steven Novellaon 09 Jun 2009 at 4:30 pm

    S – you failed to acknowledge that the paper I cited provided hard evidence from the published literature that the H. pylori hypothesis was not stonewalled, and was accepted in proportion to the evidence.

    You are giving apocryphal stories backed up only by cherry picked anecdotes. When you look at the data, where available, it does not back such stories up. If the H. pylori story could be so far off from the facts, then they all can be.

    I am a practicing physician. I tell patients all the time that I don’t know what they have, or that current medical science does not have an answer. I do not assume that unknown = psychosomatic. Nor do I see such behavior as common among my colleagues.

    I cannot answer to the culture of medicine a hundred years ago, or even 50 year ago. But since I have been practicing there has been a great reluctance to assume psychosomatic. Patients with unknown syndromes get what we call the “million dollar workup”. In fact, the culture has gone too far the other way, if anything. Now the challenge is knowing when to stop ordering more tests and referrals.

    Also, we understand that there are many syndromes that are poorly understood, and sometimes we need to stop trying to find the magic diagnosis and focus on symptomatic treatment and quality of life. At the same time we need to be familiar with which academic centers are doing the kind of research that might extend our knowledge of these unknowns, and refer to them when appropriate.

    So, frankly, you characterization of the practice of medicine does not square with my direct experience with it. It is a morality fable not based in reality.

  26. Steven Novellaon 09 Jun 2009 at 4:31 pm

    Just – read my post for today. The evidence is strongly against a persistent infection.

  27. tmac57on 09 Jun 2009 at 11:57 pm

    S said-” Yes, the human body is complex but blaming patients for somatizing etc, because you, as an MD, do not know the causes is pointless and unscientific. There is always a physiological / biological reason.”
    ‘ALWAYS’ a physiological / biological reason ? Really ?! Have you ever heard of Medical Student Syndrome ? Maybe all of those delusional Med students should be getting the “million dollar workup” to find what must be a real physiological / biological cause for their syndrome. Couldn’t possible be just in their noggin could it ?

  28. tmac57on 10 Jun 2009 at 12:06 am

    Oh, I almost forgot:

    P erverse – E rrant – C ontumacious – ! ! !

  29. [...] that all the evidence and transparency in the world will end the controversy. As a commenter on my first blog entry on this topic wrote: “You will never convince me long term ABX is [...]

  30. son 10 Jun 2009 at 6:06 pm

    tmac57, not all med students suffer MSS and brain chemistry is definitively a physiological / biological cause. Or do you mean that there is some supernatural factor at work influencing their brains irrespective of the chemical reactions in said brains ? Reactions caused by the environment, which in this case consists of the information received.

  31. son 10 Jun 2009 at 6:08 pm

    Steve, there are many a fine doctor, but let me tell you of my experience after suffering what I, well probably we all, now know is repetitive strain injury caused by bad computer mouse habits. This happened many many years ago–in the beginnings of the eighties–when I got an Apple Macintosh with a handheld input device a.k.a. a computer mouse. I promptly developed right arm paresthesias and pain. So I went to the doc and asked what ailed me (I did not mention the computer as I just did not think it had anything to do with it).

    As I stopped talking the doc queried in a soft voice: “Do you have troubles sleeping and bedwetting?”

    First I remained just stunned. What the f..k did he say? Then I recoverd and asked what he meant and he insisted by restating the same question. At that point I said good bye and good day. Went back to work, did some research and promptly realized what the problem was. Yes, the fact that I still remember that, may, well, make me rather opinionated and touchy on the subject of psychosomatic causes ;-)

  32. son 10 Jun 2009 at 9:11 pm

    Steve (again) — to discuss the Quackwatch source you presented.

    Firstly I would like to concur that I am cherry picking, but so did you by only referring to a Quackwatch article in which the author makes rather sweeping claims for proof “of a correct claim that faced dogmatic, closed-minded rejection by the medical mainstream for any significant amount of time”. And then proceeds to state that “The only example I have been offered is the discovery of the link between peptic ulcer and Helicobactor pylori.”

    What about going against Galenos in the days before Vesalius? What about the reaction to Harvey in his early days? What about Semmelweiss tribulations? But I assume he means more recent examples. So, what about the opposition to the LCH diet? To add another cherry picked quote (hmm I seem to have many cherries in my basket :-) )

    “That it took so many years to get a low-carbohydrate diet accepted as a possible thing to experiment on and talk about was a shock to us. The scientific community absolutely stonewalled that for so long, and we allowed them to stonewall it. It is a shame, and in a way, we’re both guilty, the stonewallers and the people who knew better but weren’t able to put up enough opposition to force the issue. I think congratulations are due because finally this has broken out into the open, and it’s talked about, and there are studies done, and people can get grants. It’s a shame that it took so long. The second thing is another example of the way we accept that the naysayers have fixed their minds. When I was growing up, everybody knew that eating too much sugar was what caused diabetes. And then we went through the stage where eating glucose and sugar had absolutely nothing to do with diabetes and now suddenly we’re coming back to that again. Maybe there’s a middle position in here. But, again, the strength of the community, the fixéte of the milieu of the scientist’s brain, is the biggest enemy of progress. Thank you.” (Dr J Roth, Obesity Research (2004) 12, 145S-148S, Paradigm Shifts in Obesity Research and Treatment: Roundtable Discussion).

    Back to the article. The author then proceeds to contradicts himself by stating that “I don’t doubt that many physicians scoffed when first faced with the notion of a bacterial basis for peptic ulcer disease (PUD). IHowever, the medical mainstream did dogmatically reject the proposal for an undue period of time. The hypothesis was accepted right on schedule, but only after “appropriate initial skepticism” was satisfactorily answered.” How may I argue against this ‘cover all bases assertion’? First it is stated that the author does “not doubt…”, then it is “dogmatically rejected” and finally both “right on schedule” and “appropriate initial skepticism”. This is ridiculous: it both confirms the initial proposition of “a correct claim…” and contradicts it.

    Next he asserts that “One might expect that if scientific medicine had dogmatically rejected Warren and Marshall’s hypothesis, there would be scant references to their reports for the several years after the initial publications. The opposite is the case: the biomedical world was abuzz with Campylobacter pylori from the start, as is demonstrated in the figure below.”

    The stats do not prove there was no opposition, nor rejection at Warren and Marshalls initial presentations of their findings. They just prove that they gained the interest of other researchers. Which may have been both because they did oppose / reject the findings and wanted to disprove them, just as the opposite. And the increase is not “nearly exponential”, it is linear.

    What we actually see in the graph is a paradigm shift transition. From the psychogenic theory of the late 40ties to early 80ties to the bacterial H Pylori theory.

    It should also be pointed out that Warrens initial claims were made in 1979.

    To add another quote:
    “At that time when Warren and Marshall announced their findings, it was a long-standing belief in medical teaching and practice that stress and lifestyle factors were the major causes of peptic ulcer disease. Warren and Marshall rebutted that dogma, and it was soon clear that H. pylori, causes more than 90% of duodenal ulcers and up to 80% of gastric ulcers. The clinical community, however, met their findings, with skepticism and a lot of criticism and that’s why it took quite a remarkable length of time for their discovery to become widely accepted. They had to just push it harder and harder with all experimental and clinical evidences.” (N Ahmed. Ann Clin Microbiol Antimicrob. 2005; 4:17. 23 years of the discovery of Helicobacter pylori: Is the debate over?).

    And
    “Resistance from the medical establishment
    In January 1983… Locally, an abstract outlining preliminary findings of the 100-patient study was not accepted by the Gastroenterological Society of Australia for presentation at its annual conference (Box 2), and difficulties attended the submission of the definitive paper of the 100-patient study to The Lancet in January 1984. Once again, the journal’s Editor-in-Chief, Ian Munro, was challenged this time because he was not able to find reviewers who would agree on the importance of the paper. Munro sent Marshall a temporising letter, after the first round of review advising Marshall the he believed that The Lancet should publish the paper and that he was trying to find reviewers who would agree with him (Marshall, personal communication, October 2005). The paper was published in June 1984.” (The 2005 Nobel Prize in Physiology or Medicine, MJA 2005; 183 (11/12): 612-614)

    And
    “In the case of ulcer disease, the scientific and medical community strongly resisted the adoption of the new theory and its associated therapies. Late in 1984, one of the researchers, Barry Marshall, toured the US trying to convince others of the new theory (Alper & Spalding,1985:17). He recruited few followers. Some of his critics dismissed the claim of a causal relationship between campylobacter pyloridis and ulcers. They argued that the bacteria are merely opportunistic organisms attracted to abnormal mucosa (cf: Bradford Hill,1965). Others suggested that while the bacteria may have some role in ulcers or gastritis, it could not have a primary, causal role. Some criticised Marshall and Warren’s methodology. It was suggested that there had been an insufficient control group in the study, and more patients without ulcers or gastritis should have been examined to ensure the link between bacterial infection and the condition (Andersen & Nielsen,1993; Alper & Spalding,1985:17). ” (Collyer)

    In sum many papers stating various degrees of resistance. Is this a modern myth constantly growing or what actually passed? To say for sure conference Q&A session transcripts would be useful. But I would venture to say that there sure was opposition above what was normal skepticism.

    I would like to end with an extensive citation from Collyer on this topic (that is more fully explored in the cited paper):
    “In the case of ulcer disease, the efficacy of conventional anti-acid drug therapy has made it very difficult for the scientists to prove their claim. These drugs are reasonably effective for a large number of people, and this fact tends to support existing theories of causation. Furthermore, the new theories are made to appear slightly irrelevant. They have no obvious role, and there appears to be no need for a new theory.
    Marshall has countered these arguments, proposing that the theory of bacterial infection better explains the high recurrence of ulcers. He suggests that the suppression of stomach acids does not eliminate the infection, but merely gives the body time to heal the ulcer. Elimination of the infective agent on the other hand, attacks the underlying cause of ulceration (Alper & Spalding,1985:17). Marshall also offers new evidence to support his explanation of the cause of ulcers, stating that the infected patients produce higher levels of gastric acid. Nevertheless there has been a discernible apathy amongst many practitioners in the wake of the new theory.
    The organisation of medical and scientific practice provided Marshall and Warren with the opportunity to make a successful claim to new knowledge, but it also presented the scientists with almost invincible barriers. Social constructionist studies of science have revealed that ‘experts’ have substantial autonomy to promote knowledge and claim resources for their own advantage (Cozzens & Woodhouse,1995:535). In the case of ulcer disease, the researchers had the advantage of holding positions as specialist doctors in a public hospital, access to patients, basic research funds and facilities. A number of studies have indicated that professional status and the accompanying resources are critical to the process of discovery and recognition (Whitley,1984; Richards,1991; Goldberg,1988; Bliss,1982). In the medical sciences, clinical privileges have been found to be of particular importance, as these provide the researcher with legitimate access to, and autonomy over, patients as research subjects (Collyer,1993).
    However, as Stern has rightly pointed out, medical discoveries are often suppressed by the academic authority of the medical faculties of the universities (1941:222). Historically it has been philanthropic and state agencies that have saved lives and reduced illness through public health measures, while the profession as a whole has lagged behind (ibid:212). Specifically, the suppression of innovation has been the work of ‘cliques’ within the profession, which resist change in their ‘habits of thought and practice’ (Stern,1927:33). In the case of ulcer disease, recognition for the claim to new knowledge was circumscribed by contemporary dogma which held that only specialists working within the discipline of molecular biology could generate significant medical breakthroughs. The ulcer disease researchers were clinical practitioners, gastroenterologists, who were working without the more prestigious support of the biomedical ‘research establishment’. This made it difficult for Marshall and Warren to gain research support from traditional funding bodies (Vines,1994:14) and convince others of their claim.”

    Link to Quackwatch article
    (http://www.chsourcebook.com/articles/hpylori.html (accessed June 11th 0032 GMT DST)

    Further reading
    Helicobacter pioneers: firsthand accounts from the scientists who discovered helicobacters, 1892-1982, Wiley-Blackwell, 2002

    Leonhardt T. Sven Med Tidskr. 1999;3(1):133-61. [Psychosomatic disease or infection? Peptic ulcer in the light of the history of ideas and of the philosophy of science] [Article in Swedish]

    Collyer FM. Understanding Ulcers: Medical Knowledge, Social Constructionism, and Helicobacter Pylori, Annual Review of Health Social Sciences (1996) 6:1-39.

  33. daedalus2uon 10 Jun 2009 at 9:25 pm

    Trouble sleeping and bed wetting are both symptoms associated with reduced heart rate variability, neuropathy and diabetes and so are very likely positively correlated with carpal tunnel syndrome.

    http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=18780073

  34. son 11 Jun 2009 at 4:19 am

    Thanks Daedalus…not ;-)

    The authors believe btw the problem is “that patients with CTS will sleep on their side more than other persons” and “that patients with sleep apnea and early CTS will improve with treatment for sleep apnea that encourages a supine sleeping position even without wrist splinting”

  35. daedalus2uon 11 Jun 2009 at 5:48 am

    S, I cited the paper because it reported associations of other things with CTS. If you look at pain in the arm as potentially a symptom of some other underlying problem (as any good doc would), you have to ask questions and do tests to rule in, or rule out those potential other problems.

    I have CTS too (as did my mother and her father, they did’t get it from using a computer, but from milking cows by hand), so I have looked into the physiology of it. I think the reason CTS is associated with those other things is because of a final common pathway of low NO leading to increased inflammation.

  36. tmac57on 11 Jun 2009 at 9:58 am

    s-”not all med students suffer MSS and brain chemistry is definitively a physiological / biological cause. Or do you mean that there is some supernatural factor at work influencing their brains irrespective of the chemical reactions in said brains ? Reactions caused by the environment, which in this case consists of the information received.”
    First, no one said that “all” med students suffer MSS. Read more carefully. Second, by your definition of physiological/biological then there apparently is no such thing as psychological problems, since they arise in the brain, and the brain is a physical system.Ok fine, then I guess all of,what we would think of as psychological delusions need to be treated with drugs or physical intervention ( surgery maybe)? Or ,how about with BETTER “information received”( to alter their brain chemistry).
    Better reality through chemistry. Sounds good!

  37. Steven Novellaon 11 Jun 2009 at 10:35 am

    s – I don’t think you have made your case or countered Dr. Atwoods. My position, and Dr. Atwoods, is not that there wasn’t initial skepticism and resistance to a radically new idea regarding the cause of ulcers.

    It is, rather, that initial skepticism is typical and appropriate. Most new ideas are wrong – but when you look back at the ones we now know to be correct it can be made to seem as if the skepticism was excessive. But it is just part of the process.

    What Atwood showed was that, despite initial skepticism, the research findings were taken seriously by some, the notion was explored, and because it was, in retrospect, correct – the research built to a consensus. More evidence led to more research which led to more evidence, until a threshold of acceptance was reached.

    That is how science is supposed to work.

    Then, looking back, the scientists who were vindicated tend to exaggerate their plight and resistance to their ideas. There is a tendency (I see this all the time) for scientific resistance to be interpreted as bias and closed-mindedness – but it’s just science.

    Actually, scientists who are not vindicated also think this, and blame their failure on the resistance, not the evidence.

    This is just human nature.

    There is a certain wisdom of the crowds – individuals will be stuck in the past and will be closed-minded, but the scientific community in general flows with the evidence. What Atwood was arguing is that looking at the number of publications in the literature is a better barometer of skepticism/acceptance than individual instances, which will tend to be biased toward dramatic resistance to later vindicated ideas – that is dramatic story humans like to tell.

    The bottom line is this – if you look at all the data, in most cases the scientific consensus tracks along pretty well with the evidence. There is initial skepticism to all ideas, which is appropriate, and opinion lags behind evidence a bit, which is unavoidable – but in robust evidence-based fields opinions overall track with the evidence.

  38. son 11 Jun 2009 at 10:58 am

    tmac57,
    “no such thing as psychological problems, since they arise in the brain, and the brain is a physical system.Ok fine,”

    Correct

    “all…delusions need to be treated with drugs or physical intervention ( surgery maybe)? …
    Better reality through chemistry. Sounds good!”

    We are already walking down that lane. (See e.g. Nature 2008;452:674-675,1157-1159. and the NAS report “Opportunities in Neuroscience for Future Army Applications”)

    There are a plethora of substances and methods used to “improve reality”. Prozac, alcohol, cannabinoids, transcranial magnetic stimulation, but also psychotherapy and cognitive behavioural therapy, vitamin d stoss cures, cognition enhancing drugs and so on.

    My point is that all these methods affect biochemical expression in the body. Yes a very reductionist view, but it still is so (unless you believe in the supernatural.)

    (Link to NAS report press release http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=12500)

  39. son 11 Jun 2009 at 11:20 am

    Steven,
    I would say we agree in principle.

    If you consider that the initial proposal was put forth in 1979, we can maybe agree that these sentiments of being resisted, and subsequent written tradition, may refer to the period 1979 to about 1983 (I speculate grossly), while the causality you suggest may be more relevant for the period from, say, 1986 and forward, when the “early adopters” are rushing in. (Lets call 1984-85 the pivotal years that were key to the success or failure of the idea.)

    That way we are both sort of right :-)

  40. son 11 Jun 2009 at 11:27 am

    Daedalus,
    notice the smiley I added :-)

    The little anecdote is btw from a visit I made more than 20 years ago.

    And the most pertinent question would have been to ask me if I played some sport (e.g. tennis) or had some work that caused undue stress to one arm, not for bedwetting!

  41. Steven Novellaon 11 Jun 2009 at 11:35 am

    but to get back to the original point (unless I lost track) – does the H. pylori story provide evidence that the scientific consensus can be dead wrong for long past the time when the evidence should have changed their mind? I don’t think so. Does it justify rejecting the current scientific consensus on CLD because having a longstanding consensus is not predictive, or does not reflect the actual evidence? I don’t think so.

    This is not a reason to dismiss the current consensus on CLD.

    And in any cases – I wish we could just focus on the evidence, rather than constantly having to argue about conspiracy theories and closed-mindedness. It is my contention that the latter is the refuge of those who do not have science on their side.

  42. daedalus2uon 11 Jun 2009 at 1:47 pm

    S, I noticed the smiley, but the point I was trying to make is that CTS may be the first presenting symptom of something more serious, like diabetes type 1. There are a whole zoo of zebras that need to be ruled out. What order they are ruled out in is less important than that they are ruled out.

    I am not a doctor, but I imagine the heuristic is to rule out conditions based on the product of their seriousness and likelihood. Serious and likely gets ruled out before serious and non-likely which gets ruled out before non-serious and non-likely. To come to a conclusion too soon is bad care. There may have been less awareness of CTS 20 years ago because computer mice hadn’t been in wide use before then. That lack of awareness goes both ways. Pain in the arm may have been looked at as more of a symptom of something else, like diabetes. There are much better tests now to diagnose CTS. When mine was diagnosed they measured the conduction velocity in the nerves and measured that it was decreased when the nerve went through the carpal tunnel. That was in the 1990s, not sure if that technique was available in the 1980s.

    Arm pain may be a symptom of abuse too. There is a type of arm fracture that is virtually diagnostic of child abuse because there is essentially no other way for bones to be broken in a spiral fracture. Asking straight up about abuse is often problematic because patients lie.

  43. son 12 Jun 2009 at 10:23 am

    “but to get back to the original point (unless I lost track) – does the H. pylori story provide evidence that the scientific consensus can be dead wrong for long past the time when the evidence should have changed their mind? I don’t think so. ”
    It is a subjective proposition as one year may be long past for the layman, while 10-20 years may be normal for a scientist.
    If we take H pylori as an example, the years between 1979 and 1983 may be regarded as an undue delay. But as there are multiple causes to that (time to set up tests, time to make the idea known, time to convince editors and reviewers to ok publication, time to appear at congresses etc) the time frame may be regarded as normal. If we then consider the time from “general” acceptance as indicated by as sudden jump in publications 1986-1990 the time frame may be regarded as short. Then there is the question of time from research consensus to practical application and acceptance in the medical community at large, which also may be a cause of perceived undue delays.

    “Does it justify rejecting the current scientific consensus on CLD because having a longstanding consensus is not predictive, or does not reflect the actual evidence? I don’t think so.”
    And you are probably right. But consensus could also be made to accomodate for experimental treatment in the absence of resolution with consensus treatment.

  44. johnnylighton 13 Nov 2011 at 4:29 pm

    Thank God, after 7 years and 30 docs later i finally got a Lyme doc that knows what to do about this epidemic.. Who needs science when we know we are sick and need treatments for Lyme, if you have all the symptoms of Lyme what else can it be? Even with the science we have plenty of peer reviewed articles of Late Stage Lyme, congenital Lyme… How many more patients must slip through the cracks and go undiagnosed and treated because of the ignorance of a few, we have just as many Lyme literates they except the fact the Lyme is hard to diagnose, treat and capable of relapse.. Lyme requires a Lyme expert that is properly trained in the diagnosis and treatment of Late stage Lyme…

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