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.

Money and Drugs

We hear a lot these days about the drug wars in Mexico and the US. There’s another drug war being waged, the war over drugs and money. That’s the war where drug companies pay influential psychiatrists to recommend the prescriptions of potent and dangerous drugs in children, adolescents and adults. Today the little guy won a small skirmish in that war.

National Public Radio (NPR) reported today that Harvard has punished three well-known psychiatrists over failing to reveal payments from drug companies. These three doctors are accused of accepting more than $4.2 million from drug companies between 2000 and 2007 without reporting the income to Harvard, Massachusetts General Hospital, or the federal government. $4.2 million!  That is $1.4 million per Doctor!

What did they do for this money?  Supposedly they did research, but if that were true then they probably would’ve revealed these payments. One can only guess, but it’s useful to look at their positions on prescribing. Dr. Joseph Biederman is well-known for being a proponent of the off-label use of antipsychotic drugs to treat supposed  “bipolar illness” in young children. Much of his work is seen as encouraging the growth in these kinds of prescriptions, and his funding came from drug companies that make these drugs. Biederman and the other two psychiatrists accused also have published extensively on the use of drugs to treat attention deficit hyperactivity disorder, also a huge growth industry in the Psycho-Pharma business.

All three doctors have been banned from taking any industry money for one year, and will be under probation for two more years after that. Good for Harvard and Massachusetts General Hospital! But it would be better if Harvard and Massachusetts General Hospital were more open themselves about disclosing what these doctors did, who they took money from, and whether they accepted federal grant money while not disclosing industry support which would be a violation of federal guidelines.

(I should add that most psychiatrists that I know and refer to don’t get any money from drug companies. In fact, when I ran some of the data regarding drug company’s payments to psychiatrists by a friend and colleague, he jokingly said, “Wow, I wish I had known, I could be driving a much nicer car!”  It appears that the biggest offenders are psychiatrists in academic settings or large hospital settings. Maybe we should all be asking our doctors to reveal their non-clinical funding so we know their biases.)

Copyright © 2010, 2011 Andrew Gottlieb, Ph.D. /The Psychology Lounge/TPL Productions

New Study Shows Antidepressant Medication Fails to Help Most Depressed Patients

A very interesting study recently published in the Journal of the American Medical Association (JAMA) demonstrated very clearly that when it comes to antidepressant medication, the Emperor is wearing few if any clothes! The researchers did what is called a meta-study or meta-analysis. They searched the research literature for all studies that were placebo-controlled studies of antidepressants when used for depression. That means the studies had to include random assignment to either a medication group or a placebo (sugar pill) group. They eliminated some studies which use a placebo washout condition. (This means the studies first gave patients a placebo, and then eliminated all patients who had a 20% or greater improvement while taking placebo.) When they eliminated all studies that didn’t meet their criteria, they were left with 6 studies of 738 people.

Based on scores on the Hamilton Depression Rating Scale (HDRS), the researchers divided the patients into mild to moderately depressed, severely depressed, and very severely depressed. This is a 17 item scale that is filled out by a psychologist or psychiatrist, and measures various aspects of depression. It is used in most studies of depression. They then analyzed the response to antidepressant medication based on how severe the initial depression was.

The two antidepressants studied were imipramine and paroxetine (Paxil). Imipramine is an older, tricyclic antidepressant, and Paxil is a more modern SSRI antidepressant.

What did they find? They were looking at the size of the difference between the medication groups and the placebo groups. Rather than do the typical thing of just looking at statistical significance, which is simply a measure of whether the difference could be explained by chance, they looked at clinical significance. They used the definition used by NICE (National Institute of Clinical Excellence in England), which was an effect size of 0.50 or a difference of 3 points on the HDRS. This is defined as a medium effect size.

What they found was very disheartening to those who use antidepressant medications in their practices. They divided the patients into three groups based on their initial HDRS scores: mild to moderate depression (HDRS 18 or less), severe depression (HDRS 19 to 22), and very severe depression (HDRS 23 or greater).

For the mild to moderately depressed patients, the effect size was d=0.11, and for severely depressed patients the effect size was d = 0.17. Both of these effect sizes are below the standard description of a small effect which is 0.20. For the patients in the very severe group, the effect size was 0.47 which is just below the accepted value of 0.50 for a medium effect size.

When they did further statistical analysis, they found that in order to meet the NICE criteria of effect size of a 3 points difference, patients had to have an initial HDRS score of 25 or above.  To meet the criteria of an effect size of .50, or medium effect size, they had to have a score of 25 or above, and to have a large effect size, 27 or above.

What does this all mean for patient care? It means that for the vast majority of clinically depressed patients who fall below the very severely depressed range, antidepressant medications most likely won’t help. The sadder news is that even for the very severely depressed, medications have a very modest effect. Looking at the scoring of the HDRS, the normal, undepressed range is 0 to 7. The very severely depressed patients had scores of 25 or above, and a medium effect size was a drop in scores of 3 or more points compared to placebo patients. Looking at the one graph in the paper that show the actual drops in HDRS scores, the medication group had a mean drop of 12 points when their initial score was 25. That means they went from 25 to 13, which is still in the depressed range, although only mildly depressed. Patients who initially were at 38 dropped by roughly 20 points, ending at 18, which is still pretty depressed. And the placebo group had only slightly worse results.

One interesting thing is how strong the placebo effects are in these studies. It seems that for depressions less serious than very severe, placebo pills work as well as antidepressant medication.  Is this because antidepressants don’t work very well, or because placebos work too well? It’s hard to know. Maybe doctors should give their patients sugar pills, and call the new drug Eliftimood!

So in summary, here are the main observations I make from this study.

  • If you are very severely depressed, antidepressants may help, and are worth trying.
  • If you are mildly, moderately, or even severely depressed, there is little evidence that antidepressants will help better than a placebo. You would be better off with CBT (Cognitive Behavioral Therapy), which has a proven track record with less severe depressions, and which has no side effects.
  • Interestingly, CBT is less effective for the most severe depressions, so for these kinds of depressions medication treatment makes a lot of sense.
  • If you are taking antidepressants and having good results, don’t change what you are doing. You may be wired in such a way that you are a good responder to antidepressants.
  • If you have been taking antidepressants for mild to severe (but not very severe) depression, and not getting very good results, this is consistent with the research, and you might want to discuss alternative treatments such as CBT with your doctor. Don’t just stop the medications, as this can produce withdrawal symptoms, work with your doctor to taper off them.
  • Even in very severely depressed patients, for whom antidepressants have some effects, they may only get the patient to a state of moderate depression, but not to “cure”. To get to an undepressed, normal state, behavioral therapy may be necessary in addition to medications.
  • How do you find out how depressed you are? Unfortunately there is no online version of the HDRS for direct comparison. You may want to see a professional psychologist or psychiatrist if you think you might be depressed, and ask them to administer the HDRS to you.  There are also online depression tests, such as here and here. If you score in the highest ranges you might want to consider trying antidepressant medications, if you score lower you might want to first try CBT.
  • The most important thing is not to ignore depression, as it tends to get worse over time. Get some help, talk to a professional.

I’m off to take my Obecalp pills now, as it’s been raining here in Northern California for more than a week, and I need a boost in my mood. (Hint: what does Obecalp spell backwards?)

Copyright © 2010 Andrew Gottlieb, Ph.D. /The Psychology Lounge/TPL Productions