Category: patient power

Assorted Links

Seth Roberts2 Comments

Thanks to Casey Manion.

Is Crohn’s Disease Really “Incurable”? (continued)

Seth Roberts6 Comments

The official line on Crohn’s disease is that there is “no known cure.” In my previous post I described how easily I found contrary evidence — in that case, a girl who with the help of her mom made dietary changes that got rid of her Crohn’s symptoms in weeks. She has been symptom-free for more than seven years. An existence proof.

There are many other examples. I asked Reid Kimball for links. Here they are:

A website that collects success stories: https://scdlifestyle.com/category/specific-carbohydrate-diet-success-stories/page/4/

Facebook groups: SCD – https://www.facebook.com/groups/2215406763/ GAPS – https://www.facebook.com/groups/thegapsdiet/

Reid’s website https://crohnsend.com, Jay “CrohnsBoy” Baluk https://crohnsboy.com/ and Jini Patel Thompson https://listentoyourgut.com/ are more examples.

The official website of the SCD has a testimonials section: https://btvc.webfactional.com/book-reviews/listing/

How Common Are Medical Errors? A Horror Story

Seth Roberts6 Comments

In this post a contract artist who calls himself Wolverine gives a long list of life-threatening medical errors that happened to him. I hope that he will eventually add dates so that the rate of error becomes clearer [more: all the errors happened within a 14-month period] but even without them the stories suggest that life-threatening errors are common. (As does the effectiveness of surgical checklists.) Medicine is a job where if you make a mistake only the customer suffers not you. Surely this is why the error rate is so high. Wolverine was operated on by a surgeon who, because of a fatal error, had lost his license to practice in California. He changed states, was hired again, and made the same error on Wolverine.

I learned about this from Tucker Goodrich, who has been corresponding with the author and told me something remarkable:

He’s eating a paleo with raw milk diet. The other transplant patients he knows are all eating the modern American diet and dying of infections; he’s been infection-free for two years.

 

Assorted Links

Seth Roberts4 Comments

Thanks to Peter Spero and Allan Jackson.

Father Versus Surgeons and New York Presbyterian Hospital

Seth Roberts3 Comments

I decided to read this book review because of a brief description (“A father describes, and rages at, the loss of his teenage son.) in an email. Then I found this:

Weber’s story becomes more spirited and urgent when Damon’s health begins to fail more seriously, and his father is forced to locate his true enemy: the received wisdom and arrogance of the American medical establishment.

Weber père . . . admits he doesn’t trust “any single voice on Damon’s illness.” And he’s wise not to, as he discovers in short order that health care for his son is first and foremost a business, and that surgeons frequently talk out of their hats.

Heart transplants represent big money for hospitals: at half a million dollars each, 20 pediatric transplant operations a year make a significant contribution to the finances of New York-Presbyterian ­Hospital/Columbia University Medical Center, where Damon’s surgery is eventually performed. Hospitals compete to attract patients (every transplant center Weber speaks with wants to perform his son’s operation) and stringently guard their surgical outcome data, as Weber discovers when he tries to find out if the blithe assurances of the Columbia transplant team are scientifically valid. He quickly realizes “each hospital is a fiefdom.”

Worse still, the medical barons who run the fiefs care as much [i.e., as little] for protocol as they do for patients. Over Christmas of 2004, Damon is casually “listed” as a potential heart recipient — meaning he has to be ready to receive a new heart at a moment’s notice — without his father’s knowledge. His doctors then disappear for a week and more.

Before Weber can truly blow his stack, he discovers Damon’s doctors have also misclassified his son’s transplant status as less urgent than it is. Dad bulls [sic] them into fixing the problem, and 11 days later, a heart is found for Damon. The transplant in turn initiates a tragic cascade of doctor errors so egregious that Weber eventually sues both the medical director of pediatric heart transplants at New York-Presbyterian Columbia hospital and the hospital itself for malpractice. (Three years into the lawsuit, the medical director claimed Damon’s post-op records couldn’t be located.) All this happens at one of the country’s best heart transplant centers.

“Passively relying on the medical establishment and trusting them to manage my son’s care in his best interest is not . . . a luxury I have allowed myself,” Weber writes, with good reason.

Maybe I should start a series called “The Culture of Surgeons”. Entry 1: Eileen Consorti, a Berkeley surgeon who told me I should have surgery for a hernia I could not detect. Entry 2: Martin Burton, an Oxford ear nose and throat surgeon whose Cochran Review about the pros and cons of tonsillectomy failed to consider that tonsils are part of the immune system.

More about Tonsillectomy Confidential

Seth Roberts66 Comments

The blog Science-Based Medicine ran a long critical comment about my recent Boing Boing piece (“Tonsillectomy Confidential: doctors ignore polio epidemics and high school biology”) followed by a back-and-forth (my reply, their reply to my reply, on and on) in the comments.

The exchange had three curious features.

1. In Tonsillectomy Confidential, I described how Rachael critically evaluated what a naturopath told her:

Rachael and her son went to see a naturopath that a neighbor had recommended. The naturopath was especially knowledgeable about nutrition and supplements. After an hour interview, she suggested Vitamin D3 (5000 IU/day), a multivitamin, Vitamin C (500 mg/day), and powdered larch bark. Rachael searched for research about these recommendations. She found many studies that suggested Vitamin D might help. Her son is a pale redhead and used sunblock a lot. It was easy to believe he wasn’t getting enough Vitamin D. Because Vitamin D won’t work properly without other vitamins (called co-factors), a multivitamin was a good idea [Rachael discovered during her research]. Rachael found studies that implied that a multivitamin was very unlikely to be very harmful. She found few relevant studies about Vitamin C. Maybe extreme claims about its benefits had scared off researchers — “Linus Pauling burned that bridge,” said Rachael. But she took the Vitamin C recommendation seriously because the naturopath had made other reasonable recommendations, the recommended dose was not large, Vitamin C is easily excreted in urine (in contrast to building up in the body), and Rachael had never heard of anyone having trouble at that dose. The naturopath had said that larch bark had reduced ear infections in children with chronic ear infections. A little bit of theory supported this, Rachael found, but overall the larch-bark research was “dodgy,” she said.

This was described by the Science-Based Medicine critic (Steven Novella) as “blatantly not evidence-based”.

2. In my first reply to the criticism, I wrote:

In other words, there is some evidence supporting the value of larch bark (“early laboratory evidence”) and some evidence (“a more recent study in mice”) not supporting the value of larch bark. Given this, to say “available scientific evidence does not support claims . . .” is false. An accurate statement is that some evidence does and some evidence doesn’t.

This got the following reply from a second critic (David Gorski):

No, Seth. Note two words Steve used, “in humans.” Steve was quite correct. If there is only a preliminary animal study, even if positive, that does not support the efficacy of larch bark in humans.

Apparently Gorski thinks animals (e.g., rats) and humans share no DNA. A few sentences later, contradicting himself, he notes that animal studies are used as screening tests.

3. Finally there was this, from Steven Novella:

It is fine to search for information yourself, and no one here is advocating “blind trust” in anyone. We are all activist skeptics. But it is folly to substitute one’s own opinion for that of experts who have spent years mastering a subject.

What a lovely motto for this blog: “It is folly to substitute one’s own opinion for that of experts who have spent years mastering the subject.” And, after all that study, think animals and humans share no DNA.

Tonsillectomy Confidential

Seth Roberts23 Comments

I wrote a piece for Boing Boing about tonsillectomies that has just been posted. It stemmed from a comment on this blog by a woman named Rachael. A doctor said her son should have a tonsillectomy. When Rachael did her own research, however, it seemed to her that the risks outweighed the benefits. I looked further into tonsillectomies and found that the risks were routinely greatly understated, even by advocates of evidence-based medicine.

More Here is a page on a doctor-run website called MedicineNet that grossly understates the risks of tonsillectomies. Compare their list of possible bad effects to mine.

Assorted Links

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  • Bruce Handy (who wrote for Spy) on Newsweek. “The second biggest problem is the way each issue begins with a miles-long slog of columns by A-list writers eager to champion the incontrovertible and rehash the already thoroughly hashed. . . . Niall Ferguson has discovered that, thanks to technology, “the human race is interconnected as never before.””
  • The Willat Effect in Venice, CA: side-by-side coffee comparisons at Intelligensia .
  • Why is the headline 28 Unexpected TV Ratings Facts more attractive than Unexpected TV Ratings Facts?
  • Engaging interview with Julia Schopick, creator of Honest Medicine. “After they [his surgeons] were done with him . . . “

Is Health Data Ever Harmful?

Seth Roberts16 Comments

In yesterday’s post I described how searching the medical literature helped me avoid a dangerous surgery with no obvious benefit. The surgeon I consulted, who recommended the surgery, said that published evidence backed her up. I could not find that evidence, however. Others found evidence that contradicted her recommendation.

Among the comments on that post were similar stories: Searching/reading the medical literature had been helpful. Learning what had happened (in research studies) was better than relying on an expert (a doctor). Here is an example:

A little over two years ago, I was “depressed”. My psychiatrist wanted to prescribe an SNRI [serotonin-norepinephrine reuptake inhibitor]. I related, once again, my poor experience with an SSRI and asked for evidence that an SNRI would be any more effective. He said there was evidence that SSRIs [selective serotonin reuptake inhibitors] worked. I pointed out the 2004 meta-analysis that showed no meaningful difference between SSRIs and placebos. Then I asked whether there was any better evidence for SNRIs. Since he wasn’t able to provide any, I told him that since we know that extremely low Vitamin D blood levels, poor diet, no exercise, and no social life can cause depression (all things I had at the time), I’ll try fixing those things first and then resort to drugs if that fails. It did not fail and I quit seeing him.

None of the stories in the comments described the opposite outcome: Knowing the data made things worse.

Are there exceptions? Is it always helpful (or at least not harmful) to know what happened (i.e., know research outcomes)? Has anyone reading this had an experience where knowing health research data was harmful?

Dr. Eileen Consorti and Patient Power

Seth Roberts30 Comments

My alternative to Testing Treatments (199 pages), I said recently, is three words: Ask for evidence. Ask your doctor for evidence that their recommendation (drugs, surgery, etc.) is better than other possibilities. A few years ago, I asked Dr. Eileen Consorti, a Berkeley surgeon, for evidence that the surgery she recommended (for a hernia I couldn’t detect) was a good idea. Surgery is dangerous, I said. What about doing nothing?

To reread what I’d written about this (here and here), I googled her. I learned she has a blog. It contains only one post (June 21, 2011). That post is only seven words long. I also learned she has two very similar websites (here and here). Both use her full name and title where most people would use she. Perhaps I caused the blog and websites.

Here’s what happened:

1. In 2008, during a routine physical, my primary-care doctor finds that I have a hernia, so small I hadn’t noticed it. He says I should see Dr. Consorti. Do I need surgery for something so small? I ask. Ask her, he says.

2. Dr. Consorti examines my hernia. She recommends surgery (that she would perform). Why? I ask. It could get worse, she says.

3. Eventually I realize that’s a poor reason. Anything can get worse. Influenced by Robin Hanson, I speak to Dr. Consorti: Surgery is dangerous. What about doing nothing? Is there evidence that the surgery you recommend is beneficial? Dr. Consorti says, yes, there is evidence supporting her recommendation. She says I can find it (studies that compared surgery and no surgery) via Google.

4. I try to find the evidence. I use Google and PubMed. I can’t find it. My mom, who used to be a medical librarian at UC San Francisco, is an expert at this. She has done thousands of medical searches. She too cannot find any studies supporting Dr. Consorti’s recommendation. Moreover, she finds an in-progress study that compares surgery for my problem with doing nothing. Apparently some researchers think doing nothing may be better than surgery.

5. I tell Dr. Consorti that my mom and I couldn’t find the studies she said exist. Dr. Consorti says she will find them. She will let me know when she’s found them and make copies. I can pick them up at her office.

6. Months pass. I call her office twice. No response.

7. In August 2008, I blog about Dr. Consorti’s continuing failure to produce the studies she seemed sure existed.

8. A reader named kirk points out “ what looks like a relevant hernia study“. It concludes: “Watchful waiting is an acceptable option for men with minimally symptomatic inguinal hernias. Delaying surgical repair until symptoms increase is safe.” This argues against Dr. Consorti’s recommendation. No one points out studies supporting her recommendation.

9. Two weeks after my post, someone who appears to be Dr. Consorti replies. She’s busy. She has 30 new patients with cancer. She terms my question “scientific curiosity”. She says “I will call you once I clear my desk and do my own literature search.”

10. More than a year passes. In 2010, I receive a call from Dr. Consorti’s office. An assistant asks me to remove my blog post about her failure to provide the studies. Why? I ask. It makes her look bad, he says. He says nothing about inaccuracy. I say I would be happy to amend what I wrote to include whatever Dr. Consorti wants to say about it. The assistant asks if I have any “further questions” for her. No, I say. The conversation ends.

11. A little later, I realize I do have a question. In 2008, during the conversation when I asked Dr. Consorti for evidence, I had said surgery is dangerous. In response, she had said no one had died during any of her surgeries. By 2010, I realized that such an answer was seriously incomplete. Many bad things can happen during surgery. Death is only one bad outcome. How likely were other bad outcomes? Dr. Consorti hadn’t said. She knew about these other bad effects much better than I did, yet, in a discussion of the safety of surgery, she hadn’t mentioned them. By not mentioning them, she made surgery sound safer than it actually is. Why had she not mentioned them? That’s my question. I call Dr. Consorti’s office and reach the person who had called me. I ask my question. As I wrote ,

He tried to answer it. I said I wanted to know Dr. Consorti’s answer. Wait a moment, he said. He came back to the phone. He had spoken to “the doctor”, he said. She wasn’t interested in “further dialogue”. She would contact a lawyer, he told me.

I haven’t heard from her since then.

This story illustrates a big change. As recently as twenty years ago, the doctor-patient balance of power was heavily weighted toward the doctor, in the sense that the doctor exerted considerable influence on the patient (e.g., to have surgery). One reason, Robin Hanson has emphasized, is human nature: The more fearful we are, the more we trust. Patients are often fearful. Another reason for the power imbalance was information imbalance. The doctor knew a lot about the problem (had encountered many examples, had read a lot about it). The patient, on the other hand, knew almost nothing and could not easily learn more.

During the last twenty years, of course, this has changed dramatically. Patients can easily learn a great deal about any health problem. Google, PubMed, on-line forums, MedHelp, CureTogether, and so on. The story of Dr. Consorti and me illustrates what a difference the new access to information can make.

Personal science (science done to help yourself) has two sides. One is: collect data. My self-experimentation is an example. To improve my health, I gathered data about myself. It worked. My skin improved, I lost weight, slept better, improved my mood, and so on. The other side is: use data already collected. That’s what I did here. My search for data (including my mom’s search) showed that data already in existence (including the absence of evidence supporting surgery) contradicted Dr. Consorti’s recommendation. My search was not biassed against her recommendation. I didn’t care whether she was right or wrong. I just wanted what was best for me. As Feynman said, science is the opposite of trusting experts — including doctors. My first glimpse of the power of self-experimentation was when it showed me that one of the two medicines my dermatologist had prescribed didn’t work.

Overtreatment is an enormous problem in America. Overtreated by Shannon Brownlee and Overdiagnosed by H. Gilbert Welch, Lisa Schwartzl and Steve Woloshin are recent books about it. Overtreatment could easily be why Americans pay far more for health care than people in any other country yet die earlier than people in many countries. A large fraction of our health care may do more harm than good. A common view is that the incentives are wrong. As one commenter put it, pay for treatment, you get treatment. The solution, according to this view, is to change the incentives. That’s a good idea but will not happen soon. I believe overtreatment can be reduced now. You can (a) ask for evidence (as I did) and (b) search for evidence (as I did). The difference in lifespan between America and other countries suggests this might add years to your life.

I would like to find out what happens when people ask for evidence and/or search for evidence. Please send me your stories or post them in the comments.

More Two days after I posted this, Dr. Consorti replied to this post and the earlier one with essentially the same comment, which is here.