Bipolar Disorder: A Tirade on Internet Non-Information

So I had originally planned a different blog post for today, but after someone showed me the included image graphic and “study,” I decided it would be a better idea to post my thoughts on it instead. I feel it is an excellent example of non-information – or information that isn’t actually useful information – about mental illness on the internet.

First, you’ll need to take a look at this link on ‘What Patients Say Works for Bipolar Disorder’ (original is Bipolar Managed Best Without Drugs: 227 Patients Respond) that a recently diagnosed Bipolar person shared with me. Said person is looking for information on how to manage the Disorder and get it under control. Like many people, that person turned to the internet for information.

Second, the rest of this post will consist of my tirade about these posts.

1. Might as well start at the beginning. Click-bait title for the first, a misleading title for the second.

2. The domains they appear on. Blogs on .com websites are not viable resources. What are? Links from some news sites, acknowledged online journals, .gov, and .edu sites. How do I know this? Because as a marketer, I did a lot of writing for law blogs that would be reviewed by the owner of the blog (the lawyers) to ensure it would pass scrutiny, including if they were dragged before a legal board to explain anything presented in it. Some news websites, acknowledged online journals, .gov, and .edu sites are MOST LIKELY (not always) to be accepted as viable resources. Nothing else, INCLUDING several news websites.

3. The use of language in the articles. You’ll note that they use words like “study,” “research,” and “research findings.” The author also uses what are called “weasel words” that remove them from legal obligation. “These findings SEEM to suggest.” Any qualifier like that renders the argument invalid as an actual resource because it leaves a legal loophole to escape from. “Oh, we didn’t say it was the ONLY way or it was the truth, we just said it SEEMED that way. It’s not our fault our readers have poor comprehension.” No, that is not an insult to anyone that overlooked it. That is the argument that would be used if they were dragged before a court on their bullshit. In the same way that it is not libel or slander if I suggest that the creators of this “study” MAY POSSIBLY be manipulative shitheads. I am not asserting that as truth, I am only implying it.

4. I see a lot of insinuation style “professional speak”. What I don’t see is a “Dr.” anywhere. So where are the doctors associated with this “study” that was conducted? Well, let me just dig a little bit through the links and…

5. Oh, neat. It’s actually an aggregation of a RANDOM ONLINE QUIZ of what various respondents answered on the quiz. So it’s not actually a study or research at all. There’s no control or doctors. The original site posted a random quiz, pulled information from it, plotted it on a chart, and called it a “study.” I’m just going to launch into a bullet-point list here to expand this thought process…

– No verification if the respondents are actually Bipolar or suffer from any other mental illness that could have skewed results. Most Bipolar people I know have multiple mental illnesses.

– No control on what other substances the respondents are putting into their body. Other meds, drugs, alcohol, and shitloads of other things can affect one’s balance.

– No quality of life control. So “Bipolar Managed Best Without Drugs”, eh? How is the “study” defining success? How is the “study” defining a meaningful, productive quality of life? Does the person who wrote the text for the “study” even understand what the hell that means?

– No identification of specifics relating to the DIFFERENT TYPES OF BIPOLAR DISORDER. Oh hey – Type 1s, Type 2s, Cyclothemic, and NOS diagnoses don’t all present the same. Therefore, each and every single person with a different diagnosis, and every person within that diagnosis is going to require a UNIQUE approach to find THEIR OWN wellness. Why? Because your brain chemistry is complex and unique to you. One size CANNOT fit all in pushing towards wellness.

– No qualifiers or control on what said “treatment” or “management” is actually meant to manage. Let’s look at the most “positive” result for managing Bipolar Disorder, according to this “study.” Exercise. How many people are aware that too much exercise can throw a Bipolar person into an escalated cycle or make it worse? Theorycrafting here; I suspect it is similar to the Fight or Flight mechanism in that the body is tricking itself into an escalated cycle. There are physiological processes that overlap that essentially trick the brain into believing it is escalated, so it escalates. Or if the person already is escalated, they may decide to hit the gym for 4-8 hours to try and work off some energy, only succeeding in further destabilizing themselves. I’ve known three different Bipolar “health nuts” who have done this to themselves – one of which ended in a successful suicide.

Exercise is absolutely healthy and helpful. It can absolutely help reduce depression and make it more manageable. But what about for a Bipolar person that is mostly functional with a high-functioning baseline? Too much exercise could throw them into an escalated cycle, torpedo their stability, or aggravate other physical health problems.

6. The ONLY thing that this link is useful for is to grab a list of common ways people try to deal with the Disorder to SPEAK WITH YOUR PROFESSIONAL ABOUT. It speaks nothing to the viability of those treatments. It says nothing of the respondents, their quality of life, or other factors that could be contributing to instability. It does not quantify whether or not respondents actually took their medication as directed, as opposed to how they thought they should. It’s just a random list of information that lets the reader fill in whatever blanks they want for themselves.

Do you want to get well? Do you want to manage the Disorder? Go to your doctor, therapist, or relevant professional and talk to them. Communicate. Explore options. If you want to try “natural management” first, great. Do it with the help of a therapist or doctor, not with the help of the “original author” Alexandra Carmichael, who, by the way, is most likely a fictitious person that they post their information under so they can just “fire/disappear” that writer if anything splashes back on the website. Which is a standard operating procedure for blogs like this, which again, I know because I’ve worked alongside of the people who do this shit.

Bipolar Disorder is a serious, severe mental illness. The ONLY way you can know what will or won’t work for YOU is by trying things the way they are meant to be tried. And if it doesn’t work, you talk to your doctor and amend your approach. You know, so you have a knowledgeable ally involved if your brain is screaming into insanity.

Mental illness is a complex medical problem where you NEED a knowledgeable person involved in some way to pursue wellness; or at least to warn you when you’re about to do something stupid that could potentially kill you.

This tirade has been brought to you by Dennis, a random Bipolar man with zero credentials. You know, a fact that the “alleged” assclowns that created this “study” failed to publicly acknowledge themselves. Alleged shitheads.

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6 Responses to Bipolar Disorder: A Tirade on Internet Non-Information

  1. avatar Laura says:

    Hi Dennis,

    I just wanted to drop a note to you to tell you how valuable this information was and is. I work in an academic library and I actually sent the weblink to some reference librarians because it gives provides such a good example of “good reference” versus “bad reference”.

    I have a question – but I am going to ask it in a different posting – I just quickly wanted to thank you for this post.

    Laura

    • avatar Dennis says:

      Thank you, Laura. I really do appreciate that. I do my best to produce and promote work that is accountable so people can make informed decisions for their care. I want my own body of work to be able to be picked up by a professional and they can say “yes, this is a good piece of work”. So I focus a lot on trying to weed out the good from the bad.

      Thankfully, my marketing experience helps a lot with that. And feel free to ask whatever question you have via post or email at dennis@bipolarmanifesto.com

  2. avatar Dave says:

    Mostly good points all the way around, Dennis. Trouble is, most of these criticisms are equally applicable to “legitimate” research (whatever that is)–especially so for research funded by drug companies. Notably, vis-a-vis your point #3: “legitimate” research very, very often contains “findings” couched in weasel words, just as you describe.

    Given the state of psychiatry these days, I’m not inclined to be swayed by appeals to authority. Information on .gov or .edu domains is simply not more reliable than that found elsewhere simply by virtue of its source, and it’s dangerous to think otherwise.

    • avatar Dennis says:

      I’m not sure what you mean by “state of psychiatry these days” because psychiatry has always been a minefield of difficulty, garbage, and shreds of truth. While many of your points are valid to an extent, the greatest and most important watch dogs are the third party groups that do research on these matters.

      I’ve done extensive work for product liability lawyers – the people that handle lawsuits against companies for dangerous products. A majority of the cases of product liability in regards to medications and medical devices are the result of third party groups conducting their own research and finding it runs counter to the company’s claims. Then, a second group does similar research to see if their findings are more in line with the company’s testing or the third party testing. Based on that, lawsuits may be filed.

      Scrutinizing data comes down to analyzed multiple sources. If you have two or three unaffiliated groups coming to a similar conclusion, it is more likely that is in the realm of the truth. Is it that way always? No. Accepting any single one source as a point of truth is a poor choice. I think that looking at multiple sources and eliminating the weakest is the most effective way to drive to reality.

      As it comes to weasel words in research, it all boils down to details. The problem I had with the way the information in this graph is presented is rooted in the assertion of it being a “study” when it clearly is not and making a false statement as the title “Bipolar Managed Best Without Drugs”.

      On the other hand, if you have a study called “The Affects of Antidepressants on Teenagers” and it’s filled with “may have this reaction”, “could occur this way”, then it is acceptable and viable – because the study isn’t attempting to say THIS IS WHAT WILL ABSOLUTELY HAPPEN as opposed to the info presented in what I linked to. Context matters. Details matter. And I find many people look for details and confirmations in work that is not trying to present details and confirmations.

      Treating Bipolar Disorder (and many mental illnesses) is taking educated guesses. Until science unlocks mental illness to a genetic level and develops a way to treat it at that level, that’s just the way it’s going to be due to the complex nature of each person’s brain chemistry and functionality. When I started lithium, I asked if it would be right for me specifically because I know it had been effective enough that there were university studies on why it was so effective for Bipolar Disorder. And it happened to work really well for me. Doesn’t mean it will for you or anyone else. It’s just what the data suggests.

      • avatar Dave says:

        Hi Dennis. Thank you for your thoughtful reply, which solidifies for me that you and I are largely of a similar mind, even though we do, perhaps, come to somewhat different conclusions. I’ll try to explain…

        (Added post-script: this is much longer than is strictly necessary, but brevity eludes me this morning. I have too much to say, and not enough informed people to say it to. I am grateful for this space to let it out, and the opportunity to have it read by my peers.)

        As one who has suffered for a very long time, but only recently came to know the name and the nature of my illness, I have embarked on a months-long project to learn everything I can about it–a project that will, alas, never be completed, barring some sort of miraculous scientific breakthrough. More than once, I have been alarmed and dismayed at the level of uncertainty, controversy, and outright dissent, among the experts. While we may rightly celebrate such disagreement among scientists in most fields, I find the situation to be decidedly sub-optimal where my health is concerned.

        Such is the “state of psychiatry” I referenced earlier.

        Thus, given the simple non-availability of certainty, along with the very high cost of being wrong, we must–out of necessity–be willing to weigh every point of view. It follows naturally that we must also be willing to de-weight (but not discard!) those that do not comport with our own subjective experience, or those that do not appear to incorporate an appropriate level of scientific rigor (which goes to credibility).

        But what of intent? What are we to make of an investigator’s motivation, or his conflicts of interest? Are these things relevant? Is it useful to consider them? I say yes. Ruefully.

        And so I arrive at the present moment, more than a little reluctant to jump on the medication merry-go-round, with an emerging understanding of my illness as being something decidedly different than what most of the experts–along with the majority of my fellow sufferers–say it is. (I won’t take up space with an explanation here, but I would welcome a brief private correspondence with you, if you are interested.) If the survey results that prompted this blog post happen to track very nicely with my own experiences, would I be wrong to defend their validity? (Or, if “validity” is too strong a word, perhaps “relevance” would be a worthy substitute.)

        If pretentious use of medical research jargon truly constitutes a case for dismissal, how can an institutional top-level domain create a case for credibility? As the increasingly abundant evidence shows us, it does not. The bottom line is always: “What is helping me to be well?” In some cases, that may very well be a pharmaceutical solution. In my case, it happens to be many of the things we see in the top-right corner of CureTogether’s chart.

        Your mileage may vary, I am sure you will agree. Then again, in a few years you and I may come to learn that our respective illnesses were never actually the same entity, whether or not they respond to similar treatments. We don’t know what we don’t know. And yet, the chart speaks to me, simply because it seems to support (weasel wording intentional) the disease model I am coming to accept.

        Confirmation bias is a devilish thing, isn’t it? Yet it is part and parcel of the scientific process, which seeks to confirm theories more often than to undo them. I believe we can look to Albert Einstein for the way forward: “No amount of experimentation can ever prove me right; a single experiment can prove me wrong.”

        Be well, Dennis. Thanks for reading, and please keep on writing.

        ~dc

        • avatar Dennis says:

          I understand your point on the research angle. There is a lot of controversy and bullshit surrounding mental health in general. I mean, the first mention of Bipolar Disorder is in a collection of books from 1000 years ago. Unfortunately, the mind is a vastly complicated thing. I imagine they will figure it out sooner or later, but I suspect it won’t be until humans have a very deep understanding of genetics. Genetics are the lowest common denominator and will be most applicable to a majority of people, I suspect.

          So yeah, it is definitely a frustrating thing.

          The question of medication is a more simple one to me. While I do not blindly trust pharmaceutical companies, doctors, or anyone else for that matter.. what I do trust is results. You have organizations like the Depression and Bipolar Support Alliance who are composed of many people who have recovered from mood disorders, many through the use of medications.

          Meanwhile, the number of people I’ve been able to find who can “control it” naturally who were well-balanced and sane in the past four years is zero.

          The problem is the bias of information. People don’t necessarily run out and about screaming about how great they are. They sure as hell scream when things go wrong. But they also don’t mention if it’s their own fault either. “Oh, I didn’t take it as directed. I didn’t feel I needed to.” And then they turn around and blame the medication because they weren’t taking it right, or drinking alcohol and doing other drugs with it and not telling their doctor. Or not managing their thoughts. Or any of the other thousand excuses I’ve heard since I started doing this.

          Does that mean every med is great or will be useful? No. It’s just that a significant portion of our peers who complain about their meds most likely weren’t using them correctly, if the people I’ve interacted with are any indication. People treat the shit like aspirin, and it’s not. And that’s not the fault of the medication.

          Thanks for taking the time to comment, Dave. Be well yourself!

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