Sleep, Mood, Restless Legs and ADHD Improved By Internet Research

At the SLD forums, Anima describes using several safe cheap treatments to improve his mood and sleep. First, he tried wearing blue blocker (amber) glasses in the evening. They made him fall asleep more easily and reduced or eliminated hypomania. However, he was still depressed. Second, he tried getting twenty minutes of sunlight early in the morning. His mood improved. But he still had trouble synchronizing his sleep/wake cycle with the sun — that is, being awake during the day and asleep at night. He would stay up an hour later every night and wake up an hour later every day, meaning that half the time he was asleep during the day and awake at night. Finally, he tried adjusting when he ate:

I recently found the missing key to this: meal timing. I saw a talk that Seth gave where he talked about curing his problem with waking too early by skipping breakfast. My problem was difficulty waking. I read an article that suggested that our circadian rhythms are not just tied to light, but to food times as well. I used to eat late at night and never eat breakfast. I started eating breakfast immediately upon waking (ick) and stopping all food at least 12 hours before I wanted to wake. Basically, I did what Seth did only opposite. It worked. . . . I was even able to adjust my cat’s circadian rhythm — he used to wake me up too early for his breakfast — by gradually moving his supper time.

In another post he describes using B vitamins to treat his restless legs syndrome and ADHD:

I have been taking a supplement with all the B vitamins in amounts much higher than typically recommended. I have also been taking Epsom salt baths for magnesium. I have not experienced restless legs AT ALL since starting. This is quite remarkable to me, because it was such a problem. My ADHD is also much improved.

The idea of treating restless legs syndrome with niacin (a B vitamin) came from Dennis Mangan. Anima had noticed that ADHD and restless legs syndrome often occur together.

He makes some reasonable comments about psychiatrists:

Why are psychiatrists still acting like neurological problems exist in isolation, when clearly they are all related? [In the sense that you can use what is known about how to cure Problem X to help you cure Problem Y, if X and Y often occur together.] I used to take Lamictal, Depakote, Adderall and Ambien every day. That doesn’t include all the meds I tried that didn’t work. I’m currently wearing amber glasses at night and taking a B complex, flax oil (SLD-style) and bathing in epsom salts three times a week. My mood is more stable than it was on medication, and my ADHD is controlled about the same. My sleep is much better. My psychiatrist told me that I would be on medication for the rest of my life. When I told him that I was using dark therapy and light therapy and had stopped taking my medication, he told me that I was “playing with fire,” and that I would end up in a mental institution or commit suicide if I didn’t resume my medication, despite the fact that I had stopped taking it for longer than it would be effective. I asked him if he had read the research on dark therapy. He hadn’t, but he assured me that it is pseudoscience. I guess the definition of “pseudoscience” is any treatment that doesn’t make him money. I puckishly asked him if I seemed manic or depressed, and he was forced to admit that I did not.

The ability of this psychiatrist to ignore contradictory evidence in front of him resembles what happened to Reid Kimball. He told a UCSF gastroenterologist that he was successfully managing his Crohn’s with diet. In my experience, Crohn’s can’t be managed with diet, the doctor said at the end of the appointment.

Assorted Links

  • Salem Comes to the National Institutes of Health. Dr. Herbert Needleman is harassed by the lead industry, with the help of two psychology professors.
  • Climate scientists “perpetuating rubbish”.
  • A humorous article in the BMJ that describes evidence-based medicine (EBM) as a religion. “Despite repeated denials by the high priests of EBM that they have founded a new religion, our report provides irrefutable proof that EBM is, indeed, a full-blown religious movement.” The article points out one unquestionable benefit of EBM — that some believers “demand that [the drug] industry divulge all of its secret evidence, instead of publishing only the evidence that favours its products.” Of course, you need not believe in EBM to want that. One of the responses to the article makes two of the criticisms of EBM I make: 1. Where is the evidence that EBM helps? 2. EBM stifles innovation.
  • What really happened to Dominique Strauss-Kahn? Great journalism by Edward Jay Epstein. This piece, like much of Epstein’s work, sheds a very harsh light on American mainstream media. They were made fools of by enemies of Strauss-Kahn. Epstein is a freelance journalist. He uncovered something enormously important that all major media outlets — NY Times, Washington Post, The New Yorker, ABC, NBC, CBS (which includes 60 Minutes), the AP, not to mention French news organizations, all with great resources — missed.

Assorted Links

  • Doctoring to the test. Megan McArdle describes the medical equivalent of “teaching to the test”. Although she had the usual symptoms of too-little thyroid hormone, her doctor would not give her more synthetic hormone because her Thyroid Stimulating Hormone (TSH) level was within “normal range”.
  • The Rotten Heart of Europe: The Dirty War for Europe’s Money by Bernard Connolly is out of print, but you can buy a used copy ($600) or download it (free).
  • More evidence that butter is good for you.
  • The trouble with lab mice. Nobel Prizes in Medicine, I’ve said, show the continuing failure of researchers to make significant progress on all major diseases. This article is a closer look at the problem. “We’ve had thousands of mouse studies of tuberculosis, yet not one of them has ever been used to pick a new drug regimen that succeeded in clinical trials. ‘This isn’t just true for TB; it’s true for virtually every disease,’ he tells me.”

Thanks to Ivy Hsieh and Allan Jackson.

Dr. Eileen Consorti and Patient Power

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.

Chinese Medicine As Now Practiced

In America, I often hear praise for “Chinese Medicine”. By this they mean Traditional Chinese Medicine, which includes acupuncture and techniques that harness hormesis. I tend to agree. Medicine as now practiced in China is a different story.

Last night, I had dinner with some of my students. I asked them what their parents thought of their decision to major in psychology. One of them had a surprising answer. Her mom was happy that she was majoring in psychology because among the required courses was a human anatomy and physiology class. If her daughter took this class, her mom believed, it would be harder for doctors to cheat us.

Chinese doctors “cheating” patients is a big problem, in other words. They prescribe drugs that don’t work, said my student, and perform useless surgeries. Little different than Western medicine, except perhaps the drugs are less dangerous. Just as in Western medicine, drug reps try to bribe doctors to request their drugs. Unlike Western medicine, doctors steal the drugs of hospitalized patients, my student said, which they then sell. After a friend of mine was badly burned, she had (wisely) turned down the recommendation of a skin transplant. This angered her doctor, who would have made money from the operation. Later, when he changed her bandages, he did so roughly, which was very painful. Revenge.

“Don’t see the doctors at Tsinghua hospital [the campus hospital],” said my student. She had had a bad experience. She had gotten injured and gone to the hospital. She had had to wait half an hour to see a doctor; who had taken a mere 30 seconds to prescribe a cream that did almost nothing. That evening I watched The Poseidon Adventure. A doctor visits a sick woman in bed in her cabin. After a long wait, he gives her cursory treatment.

HUSBAND (to doctor) Hold it, hold it. You mean to tell me we had to wait all this time just for you to come in here and kiss her off with a couple of pills and some crap about staying in bed? How do you know she’s just seasick? Look at her! It could be something else! You didn’t even examine her.

Same complaint.

Testing Treatments: The Authors Respond

In a previous post I criticized the book Testing Treatments. Two of the authors, Paul Glasziou and Iain Chalmers, have responded. I have replied to their response. They did not respond to the main point of my post, which is that the preferences and values of their book — called evidence-based medicine — hinder innovation.

Sure, care about evidence. Of course. But don’t be an evidence snob.

Assorted Links

  • Super-old Ashkenazi Jews. Did they live to be more than a hundred “in spite of” their “bad habits” (eating steak & pork chops, smoking, refusal of Lipitor) or because of those habits? Small amounts of smoking could easily be beneficial due to (or illustrating) hormesis.
  • Does Hollywood have a sense of humor? In the new movie about noted anti-Communist J. Edgar Hoover, Hoover’s love interest is played by Armie Hammer, grandson of Armand Hammer, who worked for the Soviet Union as a money launderer. Edward Jay Epstein writes about Hammer and the Soviet Union in this excellent Kindle book.
  • An advantage of ebooks, not yet realized, is easy updates. When the book is improved — for example, mistakes fixed — you get a new copy. In an even better Kindle book, Epstein writes about the diamond industry. The vast difference between the purchase price of a diamond and its resale value may be the advertising industry’s greatest achievement. Recent events caused Epstein to add a new chapter. The book was easy for Epstein to update but unfortunately earlier purchasers did not get the new version.
  • Michel Cabanac, who did some of the research behind the Shangri-La Diet, has written a book about his life’s work: how we self-regulate via pleasure. During a meal, for example, exactly the same food becomes less pleasant. When it becomes unpleasant, we stop eating. When we are hot, cold water is more pleasant than when we are cold. The secret to weight loss, Cabanac realized, is making exactly the same food less pleasant — an insight few weight-loss writers understand.

Testing Treatments: Nine Questions For the Authors

From this comment (thanks, Elizabeth Molin) I learned of a British book called Testing Treatments (pdf), whose second edition has just come out. Its goal is to make readers more sophisticated consumers of medical research. To help them distinguish “good” science from “bad” science. Ben Goldacre, the Bad Science columnist, fulsomely praises it (“I genuinely, truly, cannot recommend this awesome book highly enough for its clarity, depth, and humanity”). He wrote a foreword. The main text is by Imogen Evans (medical journalist), Hazel Thornton (writer), Iain Chalmers (medical researcher), and Paul Glaziou (medical researcher, editor of Journal of Evidence-Based Medicine).

To me, as I’ve said, medical research is almost entirely bad. Almost all medical researchers accept two remarkable rules: (a) first, let them get sick and (b) no cheap remedies. These rules severely limit what is studied. In terms of useful progress, the price of these limits has been enormous: near total enfeeblement. For many years the Nobel Prize in Medicine has documented the continuing failure of medical researchers all over the world to make significant progress on all major health problems, including depression, heart disease, obesity, cancer, diabetes, stroke, and so on. It is consistent with their level of understanding that some people associated with medicine would write a book about how to do something (good science) the whole field manifestly can’t do. Testing Treatments isn’t just a fat person writing a book about how to lose weight, it’s the author failing to notice he’s fat.

In case the lesson of the Nobel Prizes isn’t clear, here are some questions for the authors:

1. Why no chapter on prevention research? To fail to discuss prevention, which should be at least half of health care, at length is like writing a book using only half the letters of the alphabet. The authors appear unaware they have done so.

2. Why are practically all common medical treatments expensive?

3. Why should some data be ignored (“clear rules are followed, describing where to look for evidence, what evidence can be included”)? The “systematic reviews” that Goldacre praises here (p. 12) may ignore 95% of available data.

4. The book says: “Patients with life-threatening conditions can be desperate to try anything, including untested ‘treatments’. But it is far better for them to consider enrolling in a suitable clinical trial in which a new treatment is being compared with the current best treatment.” Really? Perhaps an ancient treatment (to authors, untested) would be better. Why are there never clinical trials that compare current treatments (e.g., drugs) to ancient treatments? The ancient treatments, unlike the current ones, have passed the test of time. (The authors appear unaware of this test.) Why is the comparison always one relatively new treatment versus another even newer treatment?

5. Why does all the research you discuss center on reducing symptoms rather than discovering underlying causes? Isn’t the latter vastly more helpful than the former?

6. In a discussion of how to treat arthritis (pp. 170-172), why no mention of omega-3? Many people (with good reason, including this) consider omega-3 anti-inflammatory. Isn’t inflammation a major source of disease?

7. Why is there nothing about how to make your immune system work better? Why is this topic absent from the examples? The immune system is mentioned only once (“Bacterial infections, such as pneumonia, which are associated with the children’s weakened immune system, are a common cause of death [in children with AIDS]“).

8. Care to defend what you say about “ghostwriting” (where med school professors are the stated authors of papers they didn’t write)? You say ghostwriting is when “a professional writer writes text that is officially credited to someone else” (p. 124). Officially credited? Please explain. You also say “ghostwritten material appears in academic publications too – and with potentially worrying consequences” (p. 124). Potentially worrying consequences? You’re not sure?

9. Have you ever discovered a useful treatment? No such discoveries are described in “About the Authors” nor does the main text contain examples. If not, why do you think you know how? If you’re just repeating what others have said, why do you think your teachers are capable of useful discovery? The authors dedicate the book to someone “who encouraged us repeatedly to challenge authority.” Did you ever ask your teachers for evidence that evidence-based medicine is an improvement?

The sad irony of Testing Treatments is that it glorifies evidence-based medicine. According to that line of thinking, doctors should ask for evidence of effectiveness. They should not simply prescribe the conventional treatment. In a meta sense, the authors of Testing Treatments have made exactly the mistake that evidence-based medicine was supposed to fix: Failure to look at evidence. They have failed to see abundant evidence (e.g., the Nobel Prizes) that, better or not, evidence-based medicine is little use.

Above all, the authors of Testing Treatments and the architects of evidence-based medicine have failed to ask: How do new ideas begin? How can we encourage them? Healthy science is more than hypothesis testing; it includes hypothesis generation — and therefore includes methods for doing so. What are those methods? By denigrating and ignoring and telling others to ignore what they call “low-quality evidence” (e.g., case studies), the architects of evidence-based medicine have stifled the growth of new ideas. Ordinary doctors cannot do double-blind clinical trials. Yet they can gather data. They can write case reports. They can do n=1 experiments. They can do n=8 experiments (“case series”). There are millions of ordinary doctors, some very smart and creative (e.g., Jack Kruse). They are potentially a great source of new ideas about how to improve health. By denigrating what ordinary doctors can do (the evidence they can collect) — not to mention what the rest of us can do — and by failing to understand innovation, the architects of evidence-based medicine have made a bad situation (the two rules I mentioned earlier) even worse. They have further reduced the ability of the whole field to innovate, to find practical solutions to common problems.

Evidence-based medicine is religion-like in its emphasis on hierarchy (grades of evidence) and rule-following. In the design of religions, these features made sense (to the designers). You want unquestioning obedience (followers must not question leaders) and you want the focus to be on procedure (rules and rituals) rather than concrete results. Like many religions, evidence-based medicine draws lines (on this side “good”, on that side “bad”) where no lines actually exist. Such line-drawing helps religious leaders because it allows their followers to feel superior to someone (to people outside their religion). When it comes to science, however, these features make things worse. Good ideas can come from anybody, high or low in the hierarchy, on either side of any line. And every scientist comes to realize, if they didn’t already know, that you can’t do good science simply by following rules. It is harder than that. You have to pay close attention to what happens and be flexible. Evidence-based medicine is the opposite of flexible. “ There is considerable intellectual tyranny in the name of science,” said Richard Feynman.

Testing Treatments has plenty of stories. Here I agree with the authors — good stories. It’s the rest of the book that shows their misunderstanding. I would replace the book’s many pages of advice and sermonizing with a few simple words: Ask your doctor for the evidence behind their treatment recommendation. He or she may not want to tell you. Insist. Don’t settle for vague banalities (“It’s good to catch these things early”). Don’t worry about being “difficult”. You won’t find this advice anywhere in Testing Treatments. If I wanted to help patients, I would find out what happens when it is followed.

More Two of the authors respond in the comments. And I comment on their response.

Ten Reasons To Distrust Drug Companies

A reader of this blog who wants to be identified as Doctor’s Daughter wrote the following editorial and submitted it to KevinMD, which turned it down. KevinMD is aimed at doctors. One recent article (“ Why 99% of health care should be angry“) said this: “The real top earners in health care, however, are not physicians, but executives of big corporations, non-profit and especially for profit.” Here is what Doctor’s Daughter wrote:

(On Kevin MD’s website there was a recent piece entitled “How Can Pharma Earn the Trust of Patients?” which was submitted by Richard Meyer, the executive director of Online Strategic Solutions, which develops strategies for companies that engage in direct-to-consumer marketing. . . I feel compelled to offer a different viewpoint, focused on pharma’s actual business practices.)

Far too many pharmaceutical companies have:

1. Spent more money on marketing than on honest research and development.

2. Set exorbitant prices for drugs. For example, they have engaged in price-gouging for cancer drugs, with many costing more than $50,000 annually.

3. Tried to medicalize almost everything and, quelle surprise, they have a pill for that! Few of these drugs do anything to cure the condition; they just alleviate the symptoms.

4. Undermined the independence of guideline panels by making sure that the panels are filled with pharma friendly researchers and clinicians.

5. Unduly influenced the judgment of physicians and tried to undermine their integrity with gifts and cash.

6. Prevented lower-priced generics from coming on the market with “pay to delay” agreements and by other means.

7. Chosen profits over safety (remember the Heparin scandal?).

8. Designed studies that only report the supposed benefit of a particular drug and suppress information about adverse effects.

9. Exercised undue influence over panels that review the efficacy and safety of drugs.

10. Have continued to spend billions on advertising by saturating prime-time TV with Direct-To-Consumer ads to “Ask your doctor…”

With these kinds of abusive practices, should anybody trust these guys?

A reasonable list of complaints.