Search Results for "chronic lyme disease"

May 03 2010

Update on fake diseases

Published by under Absurd medical claims,Medicine

I've been a bit busy lately and haven't been able to update you on some important developments in the field of imaginary diseases.
Update 1: Chronic Lyme Disease
So-called "chronic Lyme disease" (CLD) is a diverse constellation of symptoms which are often attributed to Lyme disease, but without objective evidence of infection with the organism that causes Lyme disease. Patient advocacy have been very active in insisting that reality conform to their beliefs, going so far as convincing the Connecticut Attorney General to investigate the Infectious Disease Society of America. As part of an agreement to get the AG to stop this foolishness, the IDSA agreed to review its guidelines, without any guarantee of changing them.
Their review is now complete, and they have decided against any changes. The heart of the AG's investigation was an allegation that the IDSA had too many conflicts of interest. In order to allay some of these concerns (foolishly, in my opinion, as that is akin to trying to tell the Pope not to believe in God), an outside ethicist was brought in who reviewed the panel for conflicts of interest, and found none. According to the IDSA statement:

The Review Panel concurred that all of the recommendations from the 2006 guidelines are medically and scientifically justified in light of the evidence and information provided, including the recommendations that are most contentious: that there is no convincing evidence for the existence of chronic Lyme infection; and that long-term antibiotic treatment of "chronic Lyme disease" is unproven and unwarranted. Inappropriate use of antibiotics (especially given intravenously) has been shown to lead to deadly blood infections, serious drug reactions and C. difficile diarrhea, as well as the creation of antibiotic-resistant bacteria or "superbugs."

And that settles that, right?
Update 2: "Morgellons" syndrome
So-called morgellons syndrome is a term coined by someone who felt she had unexplained skin rashes and strange fibers in her skin. Over the last couple of years, a loose group of people and one or two scientists have come together to try to find the cause of their suffering. They have managed to enlist the CDC in an investigation in an investigation which is still ongoing, but given the history of similar claims, if the CDC does not find an explanation to their liking, the conspiracy theories will make chem-trails and UFOs look rational.
So that's your update. Enjoy the discussion which is sure to erupt.

32 responses so far

May 27 2009

Lyin' about Lyme

Published by under Absurd medical claims,Medicine

Earlier this month I wrote about some of the people who claim to be Lyme disease experts, and specifically about an article in the Journal of Medical Ethics, and its author. The article was truly horrid, especially when presented in the context of an ethics journal. My ethicist friend weighed in at the time, and now she informs us that the journal has printed a response.
Background
Lyme disease is a relatively common bacterial infection acquired from the bite of a tick. Many people who are infected develop a characteristic rash, and if they are treated at that point, that's the end of that. If they are not, some go on to develop swollen, painful joints (usually a knee), or some neurological symptoms such as Bell's Palsy. There is a group of folks out there who believe that there is also an entity which they call "chronic Lyme disease" (CLD). This is often treated with long-term antibiotics by self-anointed "Lyme-literate doctors". What are the symptoms of CLD? This list is typical:

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37 responses so far

May 06 2009

Lyme disease---who is credible?

Published by under Absurd medical claims,Medicine

I recently had a pleasant, brief email exchange with Kris Newby, the producer of the latest medical advocacy pic, Under Our Skin. There's been a number of similar movies lately, mostly about quacky cancer therapies. This one is apparently much better made, and follows the controversy regarding "chronic" Lyme disease.
I'd heard an interview about the movie on Diane Rehm, and was rather unnerved by it. It sounded like a typical I-drank-the-Kool-Aid-now-I'm-gonna-make-a-movie kind of thing. Still, I haven't written about it, because I haven't seen the movie. That's going to change. Kris is being kind enough to send me a copy, despite my warning that I'm very likely to pan it.
Anyway, in our conversation, she recommended that I check out a particular piece in the Journal of Medical Ethics. Before I go into the significance of this paper, let me give you a little background. Stick with me here, I'll make it brief.

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89 responses so far

Apr 30 2011

Alternative medicine: same thing, different words?

Published by under Absurd medical claims,Medicine

When discussing the absurdity of religious disagreements, peacemakers often make the point that all religions believe in one underlying Truth or Deity, that all religions are guided by the idea that we should be excellent to each other.  I don't believe this, but it serves as a useful analogy.

In medicine, those trying to bring together science-based practitioners and alternative practitioners (or more honestly, alternative docs trying to justify their practices) often argue that we are simply using different words for the same concepts, that one person's chi is another one's "life force", "energy", or some such thing.

In religious arguments, no one can be proven wrong about who's god is the real one, but it can be pretty well determined whether or not religions "believe in" the same underlying principles.    One question deals with the unanswerable, the other with written texts and observable practices---in other words, data.  The same is true for medicine.

The idea that there is some sort of animating force travelling through channels or meridians in the body is an old one.  Sometimes the language is explicitly mystical, and sometimes it is couched in science-y words.  Chiropractors speak of "subluxations" blocking the flow of something-or-other and causing disease.  Whether such a phenomenon exists (it doesn't) is easily discovered.

Lay people very often buy in to vitalist ideas about human health. It goes well with our propensity to believe in mind-body dualism, with religious ideas of soul. People like to believe things, like to find patterns to organize their world based on their own observations, even if these observations are based on false premises.  This is why we have professionals.  We don't let anyone design a bridge, but someone who understands the physics involved.  And we shouldn't let people practice medicine if they have a fundamental misunderstanding of how the body works.

All this is in support of the premise that Dr. Oz is no longer a real doctor, but more of a mystic.  Currently his website is hosting a series on "Fighting Fat with Ayurveda".  Ayurveda is a form of pre-scientific medicine from the Indian subcontinent.  It is based on thousands of years of tradition, but has been largely abandoned by those who can afford real medicine.  It shares with other traditional systems vitalist ideas of unmeasurable life-forces.

As I read the first part of the series I am struck by two patterns.  First, it shows a supposedly real doctor (Oz) implicitly supporting disproved ideas about health and failing to give the real data. Just as disturbing is the "carnival barker" tone of the series:

Over the next several weeks, I will be sharing some of the most powerful ayurvedic secrets for removing amafrom your body and helping you achieve your weight loss resolution.

This idea that there is some secret out there for fat people, diabetics, people with cancer, or whomever, a secret so powerful yet simple, is patently absurd, yet alluring.   But what follows could have been lifted from any internet quack site.  It is a list of symptoms that supposedly tells you if you have excessive "toxins" in your body.  The whole idea of "toxins" being the cause of disease is also old, and also not based on reality.  It's not that toxic substances aren't important, it's that the word is not used the same by real doctors and quacks.

But the language!  Vey's mir, it could have been lifted from any Morgellons, chronic Lyme disease, or other fake disease websites.

The first step is to determine if you have an excessive amount of toxins in your body. If you answer “yes” to the majority of the statements below, you have an excessive accumulation of ama:

1.  I tend to feel obstruction/blockages in my body—constipation, congestion/heaviness in the head area, blocked nose, or a general feeling of non-clarity.

2.  When I wake up in the morning, I do not feel clear; it takes me quite some time to feel really awake.

3.  I tend to feel tired or exhausted mentally and physically.

4.  I get common colds or similar ailments several times a year.

5.  I tend to feel heaviness in the body.

6.  I tend to feel that something is not functioning properly in the body – breathing, digestion, elimination or other.

7.  I tend to feel lazy (i.e., the capacity to work is there, but there is no inclination).

8.  I often suffer from indigestion.

9.  I tend to spit repeatedly or have a bad taste in my mouth.

10.  Often, I have no taste for food and no real appetite.

11.  My tongue is often coated with a thick film, especially in the morning.

Everyone has some or many of these complaints at one time or another, and many of these are normal.  Most people get several colds a year.  Most people get indigestion.  These vague statements are usually designed, in my opinion, to show how "common" an imaginary problem is by making all readers victims of this excess of ama.  And on many websites, such lists, in my opinion, are simply used to draw in pigeons for the fleecing.

Believers in alternative medicine and real doctors are most certainly not talking about the same concepts using different words.  We physicians are talking about real, measurable, testable concepts; things that can be seen, touched, altered.  They are talking about imaginary energies and toxins that cannot be demonstrated to even exist, much less be manipulated to improve health.

There is a long history of real medicine, flaws and all, saving lives and improving health.  All the rest is based on dreams and greed.

16 responses so far

Dec 21 2010

The medium is not the message---is it?

Published by under Medicine

There's a bit of a heated discussion going on online, one that conflates conflicts about the nature of medical debates with the nature of journalism.  If this sounds stultifyingly boring, it is, but some of the underlying issues are not.

It starts with a piece in the Chicago Tribune by Patricia Callahan and Trine Tsouderos.  The award winning pair have been among the few reporters to consistently "get it right" about alternative medicine. Tsouderos is well-respected among critics of quackery for her willingness to look at the science and report the truth, without resorting to false balance*.  Callahan and Tsouderos' investigation into the dangerous and deceptive practices of alternative autism doctors, practices that include chemical castration, won cheers from those  screaming out against this unethical mistreatment of children.  These reporters have got the bona fides amongst both journalists and scientists.

Stories like the one on fake autism treatments have a lot of background.  To those of us who have been following the stories and writing about them for years, the stories and the players are well known.  The best ongoing critical discussions of alternative medicine have been going on in the blogosphere rather than print media.  Blogs such as Respectful Insolence, Neurologica, and Science-Based Medicine have been tracking alternative medicine trends for years and doing it well.  The success of these outlets are in no small part due to the fact that they are written by medical experts.  These writers may not have formal training (or even informal training) in journalism, but they know medicine and they know how to write in a compelling style.

In general, bloggers write frequently, often on the same or related topics.  This serialization of sorts, along with the convention of linking/hypertext allows bloggers to reference rather than rewrite when discussing complicated topics such as autism, lyme disease, or homeopathy.  Many mainstream journalists are aware of these tools and would like to use them, but they may face technological and corporate constraints (and I welcome any comment from journalists that may help clarify this point).

In their recent piece Tsouderos and Callahan recently got it right about so-called chronic Lyme disease (CLD), and they are catching some flack.  I'm going to use my powers as a blogger here to refer you to more in-depth discussions of Lyme disease, but I'll give you a quick run-down.  Lyme disease is caused by a bacterium spread to humans by tick bite.  When treated properly with antibiotics, it resolves completely.  When not treated early, it can cause a number of problems ranging from annoying to serious, including joint pain, heart, and neurologic problems, which also respond well to antibiotic therapy.   Over the last several years, a number of doctors and patient-advocacy groups have recognized something called "chronic Lyme disease" which is a collection of various symptoms that are attributed to Lyme disease despite absence of any evidence of ongoing infection.

It is difficult to explain briefly the intense animosity advocates of CLD have for the medical establishment.  They often state that doctors are actively involved in a conspiracy to deny "proper" treatment, and have convinced politicians to take legal action to circumvent and even punish those who uphold medical consensus.  The real victims here are suffering patients who are taken advantage of by so-called Lyme-literate doctors, doctors who are willing to ignore medical evidence and give dangerous and costly treatments to people who don't need it.

It is in this context that the Tribune piece should be viewed, and it is this context that was ignored by critics of the piece, especially Paul Raeburn of Knight Science Journalism Tracker, an excellent website, and Pam Weintraub, an editor at Discover Magazine.  We'll explore each of their critiques separately.

Raeburn's beef with the Trib piece appears to be a "lack of balance":

This is what happens when reporters make up their minds about a controversial story before beginning to write. In a Dec. 8 Chicago Tribune piece on Lyme disease, reporters Patricia Callahan and Trine Tsouderos write that while Lyme disease is real, so-called “chronic” Lyme disease, said to last for years, “is an illness that might not even exist.”

That’s an arguable point, and a fair conclusion to come to–if the writers came to it fairly.

When it comes to truth, it doesn't matter how Paul Raeburn perceives the process.  A medical fact is a medical fact, and while he may not like the way they came to their conclusion, the truth remains.   He goes on to make a number of somewhat fair criticisms of the piece, arguing that many ideas were left unattributed, although as I pointed out above, to give the entire back story to this debate would be nearly impossible in a single piece.  He accuses them---unfairly, I think---of writing a hit piece with little real reporting:

It goes on. Note that none of this is attributed. The reporters are saying, in their own voice, that chronic Lyme disease belongs squarely with all kinds of risky and unproven cures for cancer and other ailments. With that kind of opening, most readers don’t have to wade any further through the reporting to know what conclusions the story is going to come to. The writers have conveyed their sneering skepticism without, so far, more than a few shreds of reporting. And none from anybody we might consider an expert on the disease.

"Sneering skepticism", in the face of well-known, previously documented quackery is not a fault.

Raeburn displays a profound ignorance of the Lyme debate and of the players involved, in favor of a desire for false balance:

Again and again, Callahan and Tsouderos give far more space to advocates making questionable claims than they do to experts who refute those claims, allowing the serious case for chronic Lyme disease, whatever that might be, to be buried under the dubious claims of advocates.

There are many researches working on Lyme disease, but so-called chronic Lyme disease is a different thing altogether.  It is by definition a condition that isn't really Lyme disease, but a bunch of symptoms that someone feels like calling Lyme disease despite no evidence of infection.  There is no serious debate here, and the advocates who Tsouderos and Callahan quoted are the major players---they got it right.

The heart of  Reaburn's agenda seems to be a form over substance:

A far better approach would have been to report the evidence, pro and con, and to quote the most persuasive advocates for and against chronic Lyme disease–not the least persuasive. And to give both sides equal time to speak.

The piece did not just find "the least persuasive" CLD advocates in order to make a point---that is the reality out there.  The expert consensus is that the thing being called CLD has nothing to do with Lyme disease, subjects patients to harmful treatments, and distracts from real work on Lyme disease. It's a conclusion that I as a clinician share.  I'm not a "real" journalist, and if real journalists approach all stories like Raeburn, I'm glad I'm just a hobbyist.

Pamela Weintraub's criticism is a bit different.  It was apparently her concerns that prompted Raeburn to write his piece, and she chimed in in the comment section.  I'm going to quote her at length, because she is an editor and presumably a stickler about these things:

The problem, as I see it, is that these journalists have conflated two issues: One issue, a look at the predators abusing patients carrying the diagnosis of chronic Lyme disease, is a worthy endeavor. The second, an examination of the debate over why symptoms persist after short-term antibiotic treatment, is also a worthy endeavor. But these issues –thought interrelated because a dearth of knowledge leaves a vacuum for predators– are not the same.

In order to examine the possible reasons for chronic symptoms after treatment for Lyme disease, one would need to quote credible, university-based scientists on the range of views and interpretations. Instead, the journalists quote scientists with one view, but when it comes to balancing that view, they attempt to do so by quoting the very criminals, predators, and crazies they are trying to expose. The implication, of course is that these sources must provide the counterweight because there ARE no credible, university-based scientists who disagree with the contention of the article, or the experts quoted. Of course, this is blatantly untrue –and one does not need to look far or even make many phone calls to find a range of views among credible academic experts with high visibility in the peer review.

These reporters have not conflated anything.  The predation and other nonsense that accompanies the chronic Lyme debate is the story.   This is a fairly classic moving of the goalposts, one which, perhaps, Tsouderos and Callahan might have avoided by citing more sources, but I doubt it.  The science is settled: vague and protean symptoms in people without microbiological signs of Lyme disease do not have Lyme disease and are not aided by long-term antibiotic therapy.  The "other side" here is populated by predators and wackos, not by credible university scientists.  Those scientists have already done the work and published it.

As clinicians, we see many, many patients with difficult or impossible to explain symptoms, a problem frustrating to doctors and horrifying to patients, and looking for better way to diagnose and treat these patients is a daily occurrence.   It is also an area wide open to quacks, who want to call it chronic fatigue syndrome (which really exists, but can be overdiagnosed) or Lyme disease (same), etc.

Weintraub continues:

Either these reporters started out with an agenda –and thus were satisfied to ignore like-weight experts with alternate views—or else they failed to realize these experts exist. In other words, either they were biased or they were incompetent.

And it is too bad –because an expose on predatory practices in this arena is sorely needed.

A final note: The issue of Lyme disease, in general, is confounded by co-infections carried by Lyme ticks, and by a range of Lyme disease strains, only recently described in the peer review. Some of our top scientists now suggest these strains may present variably in terms of symptom sets, in terms of testing –and yes, perhaps even in terms of length of treatment to kill. It is too bad that these journalists failed to attend the recent Institute of Medicine conference, Lyme Disease and Other Tick-Borne Diseases: The State of the Science, or even watch the webcast, where many of the nuances and complexities were discussed by the top experts in the world.

This is simply wrong.  Weintraub is either intentionally or erroneously confusing the debate over so-called chronic Lyme disease and the real medical problem of Lyme and other tick-borne disorders.   She is in over her head.  Medical science cannot rule out that some of the patients currently carrying the diagnosis of "chronic Lyme disease" may actually be found to have a problem related to tick-borne infections, but on the whole, this does not appear to be the case.

Weintraub goes on to appeal to the authority of her own experience and to the lack of journalistic expertise of bloggers, all of which is simultaneously quixotic and boring.   She and Raeburn are right about one thing though: the problem here is one of journalism.  Science journalism that insists on the convention of false balance over truth isn't worth reading.

(Friend Orac has also added his thoughts to this issue.)

____________________

*I was going to footnote a bunch on what I mean by "false balance", but then I ran out of steam.  If it's not clear by now, let me know and I'll clear that up.

17 responses so far

Jun 14 2010

Plumbing the depth of quackery at HuffPo

Published by under Medicine

One of the questions addressed in this space is, "what makes a particular condition susceptible to quackery?"  Some of the common features we've seen over time are:

  1. Diverse and protean symptoms: fatigue, "brain fog", diffuse pain, and other vague symptoms are often used as diagnostic criteria for controversial entities such as morgellons and chronic Lyme disease.
  2. Lack of diagnostic certainty: there are no definitive tests to make the diagnosis of chronic Lyme disease or morgellons (or fibromyalgia for that matter) making objective diagnosis difficult. 
  3. Children affected: autism affects children (and of course their parents) and our natural desire to protect children makes us vulnerable.

There are a number of ways that quacks can churn out their product using just these three trends.  When a patient suffers from generalized fatigue or malaise but a good work up fails to reveal a specific problem, a real doctor will listen carefully and take a cautious wait-and-see approach.  A quack will rush into action, applying unproven treatments and even making up their own diseases. 

Making up a disease may sound easy but if you want people to really buy it, you need to follow a few principles.  You have to make it sound plausible to lay people, and you have to create the best kind of lie---the one based on a nidus of truth.

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33 responses so far

May 28 2010

A cruel hoax

Published by under Medicine

As summer approaches and people spend more time outdoors, many parts of the country will start to see cases of Lyme disease. It is carried by deer ticks and is especially common in the Northeast. Tick bites often go unnoticed, but the rash of Lyme disease is pretty characteristic and occurs in about 70-80% of those who are infected.

erythema_migrans_phixr.jpg

Erythema migrans, the typical rash of Lyme disease. Source.

It's easily cured with antibiotics, but if untreated can have significant complications, such as arthritis, and various neurologic problems. As most of my readers know, there is also a movement that supports a diagnosis called "chronic Lyme disease" (CLD), which is, in most cases, not related to Lyme disease at all.

 

The controversy regarding CLD can get a bit bizarre, but the core reality is that real people are suffering, and real people are being misled. When a set of protean and debilitating symptoms are mislabeled as CLD, other diagnoses and treatments are left behind, and patients are often subjected to invasive and ineffective treatments.

Those of us who practice science-based medicine are often the targets of the CLD activists, and CLD activists are often our targets. I am very critical of health care professionals who mislead patients (intentionally or otherwise), and I receive plenty of hate mail from readers who think I'm being dismissive of their suffering. But I am not critical of patients who believe they have this disease. They are the victims of this controversy. And when the arguments and strategies get ugly, it is they who suffer. That is why I was especially angered by the email I received earlier this week.

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9 responses so far

May 13 2010

Bad science, done badly. It's bad.

Published by under Medicine

So-called "morgellons syndrome" is an interesting phenomenon. This syndrome is not at this point generally recognized by the medical community, but its sufferers describe many different systemic symptoms, such as "brain fog" and fatigue, and characteristic skin lesions which they describe as containing or extruding an unknown substance. The patients are most often diagnosed as having delusions of parasitosis, a diagnosis which understandably is not often acceptable to the patient.

One of the most consistent facts to date about the disorder is that there has been no significant scientific literature published about morgellons as a distinct entity. In the literature---such as it is---morgellons suffers one of two fates: it is attributed to delusions of parasitosis; or it is presented as unverified and unverifiable opinions from self-appointed experts. But there is a hint and a trickle of information. The CDC has an ongoing investigation into "unexplained dermatopathy", and a recent commenter has sent a new article my way.

The article, entitled, "Morgellons disease: Analysis of a population with clinically confirmed microscopic subcutaneous fibers of unknown etiology" was published this month in the Journal of Clinical, Cosmetic, and Investigational Dermatology. I would give you a PMID or DOI, but the journal is not indexed by PubMed. The publisher describes it as "open access" and emphasizes that, "[t]he journal is characterized by the rapid reporting of clinical studies, reviews and original research in skin research and skin care." The journal even has a "testimonials" page. That's unique. I'm pretty sure most of the journals I read don't have that. All of the testimonials agree that the service is excellent. In addition, the journal appears to publish very efficiently:

"I was very impressed with how promptly the paper was published."

"I was impressed at the rapidity of publication from submission to final acceptance."

When evaluating a study, it's important to note the source and the authors first. This journal would appear to value rapid communication over quality. That's not generally a favorable quality, but it isn't a deal-breaker either.

What about the authors?

Raphael Stricker is a disgraced hematologist who after losing his career to data manipulation took up the chronic Lyme disease banner. He is part of ILADS, which has been demanding that actual experts shut up and get out of the way so they can continue their evidence-free treatment of supposed chronic Lyme disease. Savely has written earlier crappy articles about morgellons. She is a nurse practitioner who "treats" people with "chronic Lyme disease" and morgellons.

None of this means the authors can't do some serious science, though, so let's look at the article itself.

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69 responses so far

May 31 2009

Passion---what is it good for?

Published by under Absurd medical claims,Medicine

One of the hardest things about practicing medicine is being compassionate and dispassionate at the same time; acknowledging a person's pain, but standing aside enough to view the problem with a degree of objectivity. This is one of the easiest mis-steps to make in medicine, and is the root of the problem of many so-called alternative medicine practitioners. Take a look at this email from a fan:

I find it interesting and short sighted that you (and many medical providers) require published research in order to be convinced that a new medical condition exists. Have you ever considered that prior to the discovery and research related to PCN (or any drug or any medical condition) didn't make it a worthwhile treatment??? I am a medical provider and happen to know someone with what appears to be Morgellons and has been belittled and discounted trying to get help with our peers. Shame, shame - on you and most of our peers for being so closed minded.

I know a lot of people with a lot of horrible problems, and I allow that to feed my passion for medicine, but I cannot allow it to distort my view of how the science of medicine works. This will lead me to wrong conclusions, and in medicine, wrong conclusions hurt real people. This is one of the main reasons that it's a bad idea to treat family members, and for that, I have a brief example.

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25 responses so far

May 09 2009

Saturday morning reflections

Published by under Medicine

I had this great idea for my PalCast today, but I have a cold and my voice is squeaking like a twelve-year-old boy, so I'm just going to have to write. I woke up a little early---I love mornings. I opened up the back door to listen to the wind blowing through the new leaves, to the birds, and to my coffee maker. It was perfect peace---until the game started up at the nearby high school. The PA carries right into my family room. That's what happens when you don't get up early enough. You start with being able to imagine you are sitting alone in a meadow and rapidly find you are actually in the middle of a busy suburban neighborhood. Which is OK too.
Still, despite the intrusion of traffic noises and high school softball games, the breeze feels good. And, despite my cold, the coffee tastes good, and the lilacs are pretty---I planted them a year or two after we moved in, and they've thrived.

It's hard to imagine what it must be like to look out at this beautiful morning and wonder, "can I take another day of this?" That's the kind of suffering I've seen from people who are suffering from vague and undefined ailments. There's a certain, I don't know, completion I suppose to having a clearly defined illness. While it isn't a good thing to have heart disease, no one tells you you're not sick. Not so with people with more vague and protean symptoms. It's human nature to want answers, to try to understand patterns, and when we, as physicians, cannot help someone understand their symptoms, they're going to reach out to others for answers.

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59 responses so far

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