Why You Should Never Read Online Illness or Medication Forums, and Why You Should be Skeptical of Google Search Results as Well

The first thing many people seem to do when they get a diagnosis of a physical or mental illness is to go to the internet and search on that illness. Patients who are prescribed medications do the same. Often the search results lead to internet forums. These forums consist of user-generated content that usually is not moderated or edited by any professional. Anyone can post on these forums. This seems reasonable, right? But in this article, I’m going to tell you why, for the most part, you should avoid reading these forums. And I will also tell you why you should be skeptical of Google search results regarding any illness.

When people read on forums about their illness or medication, they get scared. Many of the forum posts will say that your illness leads to awful and dire outcomes and that the medications prescribed to you will make you depressed, addicted, or crazy.

For instance, I often treat tinnitus patients. Samplings of the forums that cover tinnitus suggest that most of the people who post on these forums are completely miserable and suffering terribly from their tinnitus.

So what’s the problem here? Isn’t this useful information? Can’t patients learn something interesting and helpful from these forums?

Unfortunately, Internet illness forums often present a distorted, grim, and negative impression of most illnesses and most medications. Why is this? The main reason is because of selection and sampling bias. The groups of people who post on illness forums are not a representative sample of people with a particular illness. Let’s use tinnitus as an example. If you read the tinnitus forums you would assume that everybody with tinnitus is anxious and depressed about it.

But actually, we know from research studies that roughly 20% to 40% of the population experience tinnitus symptoms from time to time. We also know that roughly 2% of people who have tinnitus symptoms suffer psychologically. So the data from research suggests that a small subset (2%) of people who have tinnitus symptoms suffer anxiety and depression as a result of their tinnitus. Most people (98%) with tinnitus symptoms do not suffer significantly or they have adapted over time and gotten over their suffering.

But the forums are full of posts from the people who suffer the most. People who don’t suffer don’t spend their time posting. And people who have overcome their suffering also don’t post. So reading the forums gives a tinnitus patient a distorted and scary view of the experience of tinnitus.

The other problem in reading internet information about illnesses is the way that Google Search ranks and orders search results. When you search on tinnitus, what you might not realize is that Google presents pages in order of popularity, not in order based on how accurate or scientific they are. Sites that are clicked on more frequently will rise up in the Google search results and sites that are clicked on less frequently will fall down. When you do a Google search people typically click on the most shocking and scary links. “Tinnitus caused by alien abduction” will get a lot of clicks even though it may represent a site run by a single person who claims to have been abducted by aliens. Thus the alien abduction tinnitus site will move up in the Google rankings.

Boring scientific sites fall down in the search rankings. That’s because they have scientific names that don’t encourage people to click on the links.

So how can patients get accurate information about their illness or about medication treatments?

One way is to search within scientific and medical sites. For instance, Medscape is an excellent website that offers medical articles about almost every illness. WebMD is another site more designed for lay people, which also offers good information. If you want to search scientific articles you can use the PubMed search engine which searches published research articles.

Let’s do a Google search on tinnitus. Overall, the 1st page of Google results is pretty representative of medical and scientific sites. But the 3rd listing titled “In the news”, is an article “Martin McGuinness tells of misery living with tinnitus,” from the Belfast Telegraph. Pretty grim, you think, misery!

But if you actually clicked through to the article you would get a very different impression because what Martin McGuinness actually says is that tinnitus “had a limited impact on day-to-day life and work and that family, friends and work colleagues were very supportive. It does not limit me in a professional or personal capacity.” This is a much more positive view than suggested by the title and the Google link.

This is a great example of why the Internet is dangerous. The headline is what’s called clickbait, a link that falsely represents the actual page, which is designed to attract people’s clicks.

Forums about medication are also problematic. Many psychiatric medications can have side effects. For most people, these side effects are minimal or tolerable and are overbalanced by the benefits of the medications. For a minority of patients, the side effects are not minimal and these are the patients who are over-represented in most Internet medication forums. Also, on an Internet forum you never really know all of the medications the person is taking, the accurate dosages, as well as their underlying illness.

There is one more problem with reading about illnesses on the Internet. It’s one that particularly disturbs me. Many websites, even websites that purport to be objective, actually are selling something. They may be selling a supplement or vitamin, or an e-book or some other kind of program to treat an illness. Obviously, to increase sales, these commercial websites will paint a distorted negative picture of any illness or condition. They may also disparage other more traditional and scientifically validated treatments or drugs. In general, you should be skeptical of any information that comes from a website that sells products or services.

To review:

  1. Take Google search results with many grains of salt. Remember that Google orders search results by popularity not by accuracy.
  2. Beware of Internet illness and medication forums. By and large, they are populated with an unrepresentative sample of illness sufferers, the ones who suffer the most and cope the least well. Reading them will depress you and make you anxious.
  3. If you want to get information about your illness or potential treatments, consider using established and reputable medical and psychological information sites. An exhaustive list of best medical sites can be found at the Consumer and Patient Health Information Site. Some of the good medical sites include MedscapeWebMD, and MayoClinic. Some of the best sites for mental health information include PsychCentral, NIMH, American Psychiatry Association, American Psychology Association.
  1. Finally, remember that a very large percentage of websites are actually selling something, and be skeptical of information from these sites.

In conclusion, suffering any illness or condition is unpleasant and sometimes scary. Don’t make it worse by consuming information on the Internet in a random way. Be skeptical and selective and remember that Google is not always your friend. Often a good physician or good psychologist can give you clear and balanced information.

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Dr. Andrew Gottlieb is a clinical psychologist in Palo Alto, California. His practice serves the greater Silicon Valley area, including the towns of San Jose, Cupertino, Santa Clara, Sunnyvale, Mountain View, Los Altos, Menlo Park, San Carlos, Redwood City, Belmont, and San Mateo. Dr. Gottlieb specializes in treating anxiety, depression, relationship problems, OCD, and other difficulties using evidence-based Cognitive Behavioral Therapy (CBT). CBT is a modern no-drug therapy approach that is targeted, skill-based, and proven effective by many research studies. Visit his website at CambridgeTherapy.com or watch Dr. Gottlieb on YouTube. He can be reached by phone at (650) 324-2666 and email at: Dr. Gottlieb Email.

Is Your Shrink Being Paid to Give You Drugs? The Secret Link Between Psychiatrists and the Drug Industry

Regular readers of this blog will remember my earlier article on Rebecca Riley, the young girl whose overtreatment with powerful psychiatric drugs may have led to her death.

Now it turns out that some psychiatrists may actually be getting paid by the drug industry to give kids powerful drugs! And this is in spite of an almost complete lack of evidence that these drugs work or are safe for children.

The New York Times has an article called Psychiatrists, Children, and Drug Industry’s Role, and this scary article documents the secretive practice of paying psychiatrists to prescribe certain drugs.

The article documents that more than half a million children are now receiving atypical antipsychotics such as Risperdal, Seroquel, Zyprexa, Abilify, and Geodon. These drugs have never been tested on or approved for use in children!

In Minnesota alone, the only state that requires such reporting, from 2000 to 2005 payments from pharmaceutical companies to psychiatrists soared by six times, to $1.6 million, and the rates of prescribing antipsychotics to children went up by nine times.

And the Times found that the money worked. Those psychiatrists who received more than $5000 from the drug companies wrote 3 times as many prescriptions for atypical antipsychotics than those doctors who got less or no money. Other interesting figures are that the average payment to psychiatrists was $1750, with a maximum of $689,000. (Nice work if you can get it!)

I should point out that atypical antipsychotics are not benign drugs. Side effects can include rapid weight gain that leads to diabetes, and movement disorders such as tics and dystonia, which can lead to a lifelong muscle disorder.

The Times describes one unfortunate girl, Anya Bailey, who was given Risperdal for an eating disorder by her psychiatrist George Realmuto, who had received more than $7000 from Johnson and Johnson, the maker of Risperdal.

Although the drug helped her gain weight, she also developed a painful and permanent dystonia in her neck that now causes her chronic pain and a movement disorder, even after stopping the drug.

And she was never given any counseling for her problems, only drugs!

So what can we learn from this article? First of all, the practice of paying psychiatrists to prescribe certain medications is widespread, but only Minnesota requires full disclosure. We should pressure our legislatures to mandate full disclosure in every state. Write to your state and federal congress and senate and ask them to either ban this practice or to require full disclosure, on the web, by name of doctors, of how much money is given by each drug company.

Secondly, when you take your child to a psychiatrist, you should ask them for a full written disclosure of any money they received in the last few years from drug companies for speaking, or for research. Payments to psychiatrists (and other M.D.’s) are disguised as speaking honorariums or research payments, but when a doctor receives $5000 for giving one or two talks, it is safe to say that they are being paid for something else. If the psychiatrist admits to receiving money, then you should probably find another psychiatrist, as this creates a bias to prescribe that I do not think can be overcome.

Third, you should be dubious about any suggestion to give your child an antipsychotic medication for any diagnosis other than true psychosis. This means that unless your child is actively hallucinating, and delusional, i.e. “crazy” there is no evidence that antipsychotics will help them. For instance, there was only one well-controlled study of the use of atypical antipsychotics in bipolar illness in children, and it found little or no difference between using the antipsychotic and not using it. And most of the children in the group receiving the antipsychotic dropped out of the study due to side effects. A second study by the same researchers found no advantage to using antipsychotics.

Fourth, consider taking your child to a psychologist or counselor rather than a psychiatrist. Psychologists don’t receive money to influence their treatment decisions and use behavioral approaches that don’t have side effects. And there is much more research evidence that supports the use of these behavioral approaches in childhood disorders. Dangerous medications should be reserved for second or third line treatments only. Remember the old saying that to a young boy with a hammer everything becomes a nail, similarly to a doctor whose specialty is giving drugs, all problems become biochemical.

Finally, let’s put pressure on our legislators to outlaw this thinly disguised bribery, which threatens the health of children and adults. Shame on the pharmaceutical industry! And even more shame on psychiatrists, who of all people should be trustworthy and not willing to accept such bribes. I make the perhaps radical suggestion that patients boycott psychiatrists who accept money from drug manufacturers. If doctors can’t earn a decent living without taking payments from drug companies that often have the appearance of bribes, then perhaps they need a new profession. I realize that there are decent, honest psychiatrists who either don’t take drug company money or don’t let it influence them, but I suggest that it may be hard to tell the difference unless psychiatrists employ full disclosure.

Copyright 2007 The Psychology Lounge/TPL Productions

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Dr. Andrew Gottlieb is a clinical psychologist in Palo Alto, California. His practice serves the greater Silicon Valley area, including the towns of San Jose, Cupertino, Santa Clara, Sunnyvale, Mountain View, Los Altos, Menlo Park, San Carlos, Redwood City, Belmont, and San Mateo. Dr. Gottlieb specializes in treating anxiety, depression, relationship problems, OCD, and other difficulties using evidence-based Cognitive Behavioral Therapy (CBT). CBT is a modern no-drug therapy approach that is targeted, skill-based, and proven effective by many research studies. Visit his website at CambridgeTherapy.com or watch Dr. Gottlieb on YouTube. He can be reached by phone at (650) 324-2666 and email at: Dr. Gottlieb Email.

How to Deal with Teenage Depression: A New Study of Adolescent Depression and its Treatment

A new study reported in the Journal of the American Academy of Child and Adolescent Psychiatry found some interesting results of a study of teenage depression and its treatment.

This study of 439 teenage children with major depression, done at the University of Texas Southwestern Medical Center at Dallas tested anti-depressant medication (fluoxetine or Prozac), cognitive behavioral therapy (CBT), and a combination of both (COMB). They found that only 23% of the patients had their depression cured by 12 weeks of therapy. But 9 months of therapy was much more effective, with 60 percent going into remission.

The bad news though is that this means that almost half of the teenagers (40%) were still depressed after 9 months of therapy.

The good news is in terms of relapse. Of those who responded quickly to treatment, two-thirds retained the benefits of treatment over 9 months. The same was true of those who took longer to respond.

Which treatment was better? That is an interesting picture.

It depends at which time point you are looking at. At 12 weeks, the results for percentage fully remitted (cured) of depression were: combined drug and CBT therapy (37%), drug therapy only (23%), and CBT therapy only (16%). The combined therapy was significantly better than the other therapies. But note that overall, only 23% of the teenagers had recovered at 12 weeks, which means that 77% were still suffering!

But at nine months the outcomes look quite different. The combination therapy is still the best, but by less of a margin. The results for remission at at 9 months were: combination, 60%; drug, 55%; cognitive-behavioral therapy, 64%; and overall, 60%. By 24 weeks all the treatments were working well. But a full 40% of the teenagers were still depressed.

So the right answer to the question of which treatment works better is neither. Both drugs and cognitive behavioral therapy were equally effective, over the long term. But the combination of both was worked more quickly. As the researchers said, “choosing just one therapy might delay many teenagers’ recovery by 2 or 3 months.” As the saying goes, candy is dandy, but liquor is quicker, and we might conclude that drugs or CBT are dandy, but combined therapy is quicker.

So what does this mean to parents of depressed teenagers? Here are my takeaway messages:

  1. Don’t expect treatment for depression to work quickly. It may take more than 9 months of weekly treatment before your teenager responds to therapy. This means at least 40 sessions of therapy.
  2. Be patient, and set reasonable expectations for both yourself and for your child. Tell them that therapy will help, but it may take a while. Let support networks such as school counselors or trusted teachers know to be patient.
  3. Although medications and cognitive behavioral therapy were equally effective in the long run, the combination of both tended to work much more quickly. So if you can afford it, and have access to good practitioners who do cognitive behavioral therapy, use both.
  4. Be aware that in other studies, the relapse rate for medication treatment of depression was significantly higher than for cognitive behavioral therapy, once the medications are discontinued. So choosing medications only may increase the risk that your teenager will relapse into depression.
  5. Be aware that much teenage depression can be a reaction to social environments. This includes the family, the school, and peers. Be sure that your teen’s therapist is attuned to family, school, and peer issues. They should meet with the whole family at least several times.
  6. Take teenage depression seriously. It’s not just a phase. Teenage depression, when serious, can greatly increase the risk of suicide. All suspected depression should be evaluated by a professional and treated if present.

Copyright © 2009 Andrew Gottlieb, Ph.D. /The Psychology Lounge/TPL Productions

SOURCE: Journal of the American Academy of Child and Adolescent Psychiatry, February 2009 . And December 2006 issue too .

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Dr. Andrew Gottlieb is a clinical psychologist in Palo Alto, California. His practice serves the greater Silicon Valley area, including the towns of San Jose, Cupertino, Santa Clara, Sunnyvale, Mountain View, Los Altos, Menlo Park, San Carlos, Redwood City, Belmont, and San Mateo. Dr. Gottlieb specializes in treating anxiety, depression, relationship problems, OCD, and other difficulties using evidence-based Cognitive Behavioral Therapy (CBT). CBT is a modern no-drug therapy approach that is targeted, skill-based, and proven effective by many research studies. Visit his website at CambridgeTherapy.com or watch Dr. Gottlieb on YouTube. He can be reached by phone at (650) 324-2666 and email at: Dr. Gottlieb Email.