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.

How to Read Media Coverage of Scientific Research: Sorting Out the Stupid Science from Smart Science

Reading today’s headlines I saw an interesting title, “New Alzheimer’s Gene Identified.”

I was intrigued. Discovering a gene that caused late onset Alzheimer’s would be a major scientific breakthrough, perhaps leading to effective new treatments. So I read the article carefully.

To summarize the findings, a United States research team looked at the entire genome of 2269 people who had late onset Alzheimer’s and 3107 people who did not. They were looking for differences in the genome.

In the people who had late onset Alzheimer’s, 9% had a variation in the gene MTHFD1L, which lives on chromosome 6. Of those who did not have late-onset Alzheimer’s 5% had this variant.

So is this an important finding? The article suggested it was. But I think this is a prime example of bad science reporting. For instance, they went on to say that this particular gene is involved with the metabolism of folate, which influences levels of homocysteine. It’s a known fact that levels of homocysteine can affect heart disease and Alzheimer’s. So is it the gene, or is it the level of homocysteine?

The main reason why I consider this an example of stupid science reporting is that the difference is trivial. Let me give you an example of a better way to report this. The researchers could have instead reported that among people with late-onset Alzheimer’s, 91% of them had no gene changes, and then among people without late onset Alzheimer’s 95% of them had normal genes. But this doesn’t sound very impressive and calls into question whether measurement errors would account for the differences.

So this very expensive genome test yields absolutely no predictive value in terms of who will develop Alzheimer’s and who will not. There is a known genetic variant, called APOE, which lives on chromosome 19. Forty percent of those who develop late-onset Alzheimer’s have this gene, while only 25 to 30% of the general population has it. So even this gene, which has a much stronger association with Alzheimer’s, isn’t a particularly useful clinical test.

The other reason this is an example of stupid science is that basically, this is a negative finding. To scan the entire human genome looking for differences between normal elderly people and elderly people with Alzheimer’s, and discover only a subtle and tiny difference, must’ve been a huge disappointment for the researchers. If I had been the journal editor reviewing this study, I doubt I would’ve published it. Imagine a similar study of an antidepressant, which found that in the antidepressant group, 9% of people got better, and in the placebo group 5% got better. I doubt this would get published.

Interestingly enough, the study hasn’t been published yet, but is being presented as a paper at the April 14 session of the American Academy of Neurology conference in Toronto. This is another clue to reading scientific research. If it hasn’t been published in a peer-reviewed scientific journal, be very skeptical of the research. Good research usually gets published in top journals, and research that is more dubious often is presented at conferences but never published. It’s much easier to get a paper accepted for a conference than in a science journal.

It’s also important when reading media coverage of scientific research to read beyond the headlines, and to look at the actual numbers that are being reported. If they are very small numbers, or very small differences, be very skeptical of whether they mean anything at all.

As quoted in the article, “While lots of genetic variants have been singled out as possible contributors to Alzheimer’s, the findings often can’t be replicated or repeated, leaving researchers unsure if the results are a coincidence or actually important,” said Dr. Ron Petersen, director of the Mayo Alzheimer’s disease research Center in Rochester, Minnesota.

So to summarize, to be a savvy consumer of media coverage of scientific research:

1. Be skeptical of media reports of scientific research that hasn’t been published in top scientific journals. Good research gets published in peer-reviewed journals, which means that other scientists skeptically read the article before it’s published.

2. Read below the headlines and look for actual numbers that are reported, and apply common sense to these numbers. If the differences are very small in absolute numbers, it often means that the research has very little clinical usefulness. Even if the differences are large in terms of percentages, this doesn’t necessarily mean that they are useful findings.

An example would be a finding that drinking a particular type of bourbon increases a very rare type of brain tumor from one in 2,000,00 to three in 2 million. If this was reported in percentage terms the headline would say drinking this bourbon raises the risk of brain tumor by 300%, which would definitely put me and many other people off from drinking bourbon. (By the way, this is a completely fictitious example.) But if you compare the risk to something that people do every day such as driving, and revealed the driving is 1000 times more risky than drinking this type of bourbon, it paints the research in a very different light.

3. Be very skeptical of research that has not been reproduced or replicated by other scientists. There’s a long history in science of findings that cannot be reproduced or replicated by other scientists, and therefore don’t hold up as valid research findings.

4. On the web, be very skeptical of research that’s presented on sites that sell products. Unfortunately a common strategy for selling products, particularly vitamin supplements, is to present pseudoscientific research that supports the use of the supplement. In general, any site that sells a product cannot be relied on for objective information about that product. It’s much better to go to primarily information sites like Web M.D., or the Mayo Clinic site, or one can go directly to the original scientific articles (in some cases), by using PubMed.

So be a smart consumer of science, so that you can tell the difference between smart science and stupid science.

Copyright © 2010 Andrew Gottlieb, Ph.D. /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.

Why You Shouldn’t Believe Everything You Read in the Newspapers about Medical Studies

One of my favorite journals is called PLOS ONE.  This is a journal which supports open access. That means anyone can access any article in this Journal without paying a fee. Medical studies published in this journal are accessible to anyone.

Most of you probably don’t realize but when you see a medical study quoted in a newspaper article, you can’t actually access the original study on the Internet without paying a hefty fee, usually $20-$40! If you have access to a medical library then you may be able to access the article but for most people the original articles are off-limits without paying large fees.

Plos.org is an organization that supports open access publication of scientific articles.

That’s why I admire them.

Back to my main story. A recent study in PLOS ONE looked at how often medical research results are replicated, meaning does a second or third similar study show the same results.

The researchers in this study looked at 4723 studies that were included in 306 meta-analysis articles. (A meta-analysis is a study where you combine the results of many other research studies in order to get an overview of findings.)   The researchers divided the studies into lifestyle related studies which looked at things like drinking coffee or smoking cigarettes and non-lifestyle studies such as genetic markers for Alzheimer’s. There were 639 lifestyle studies and 4084 non-lifestyle studies.

The question is of the studies that were picked up by newspapers, how many of them were replicated by subsequent studies?  The answer is only about half of the studies held up when tested again in another study. The other thing that was interesting in this article was that when studies failed to replicate, newspapers never reported that failure. Interesting examples included studies that linked a specific gene to depression, schizophrenia, or autism. None of these studies replicated successfully, which you think would be big news and would be reported by many newspapers, but the truth is that not a single newspaper article reported these failures to replicate.

This shows that newspapers don’t have much genuine interest in good science reporting. Good science reporting always involves being skeptical of new and different results, as well as following up on attempts to replicate those results.

So, what does this mean about science results reported in popular media? What it probably means is that if the finding is new and exciting and different, you probably should be highly skeptical of it being true. And the more esoteric the finding is (such as genetic markers) the more skeptical you should be.

For instance, a recent study that was funded by drug companies looked at whether the statin class of medications have side effects or whether these side effects are just a placebo effect. I’ll write more extensively about this study later, but the study’s findings–that only when people knew they were taking statins did they experience side effects– should probably be viewed very skeptically since many other studies have shown side effects from statins and many clinical reports have confirmed the side effects. (And of course any study that is funded by the manufacturer of a drug should be viewed highly skeptically.)

The bottom line is this: finding the truth is hard, and science is no shortcut. Only findings that have been repeated and replicated in numerous studies should be believed.

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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.