Medication users call for respect from psych med critics

Editors note: We recently got challenged by one of our supporters who is a medication user and wants people to stop invalidating medication users.  We are going to intersperse our challenger with data to make sure people can weigh both sides of the story.

Our challenger:

Psych med critics who practically say all psychiatric medications are bad for everyone all the time –dismiss the experiences of apparently millions of people, who take psych meds, as merely personal anecdotes.  Psychiatric survivors talk about their negative personal experiences with psych meds all the time.

So, yes, there is another side of the this story that obviously gets very little mention here, except when people like me speak up.  Saying all meds are bad all the time is as silly and unscientific as saying they are always good for everyone.

If someone dropped into this group from Mars, they probably would have no idea that millions of people take psych meds, and presumably feel they are helped by them, and that the trade-offs of known costs/risks, etc. are worth it.

Our answer: The real data on risks and efficacy is endlessly debated on http://MadInAmerica.com. This commenter is not familiar with this research. It’s worth checking out before you know whether the decision you’ve made about trade-offs is trustable.

How do psych med critics tell people their medication choice is uninformed?

Our challenger:

Would this be a fair summary of what Corinna and other broadside psych med critics  say about those who take psych meds? “If you believe psych meds are helping you, most likely it is the placebo effect, which means you could get the same perceived benefit without any possible side effects or costs. You probably don’t realize the risks and side effects, and likely have been misled about them.  So even if you feel they are helping, you probably don’t realize or understand that the risks?”

For example, you may feel they are helping with problem A, but they are causing problems B and C, which is a net negative, whether you realize it or not. So you are most likely not making a free and informed choice? Further, there are other, better (or equally effective) approaches for whatever your mental health issue is, and these have far fewer, or no, side effects, and often are cheaper.

Our answer:  Well, we do try to say it a bit softer than that, and also we don’t usually dump the whole situation all at once. How can you make a fully informed decision if you don’t know about all the risks or efficacy information about the treatment you have chosen? Or about alternative treatments? We are not anti-medication, we are pro-informed choice. There is a list of about six things people should be told before they start psych meds, and most people do not know these things.

How does saying meds “don’t work” sound to people who think they are working very well?

Our critic:

How would such “shotgun” criticism sound to, and be received by, someone who is taking psych meds, and finding them to be of great benefit?  Consider this scenario:

Jane, a composite of various people I know, and Corinna probably knows, suffered terribly for more than a decade with “bipolar” issues. She tried to kill herself at least 5 times, and came close at least twice. She was hospitalized, had few friends, and often alienated those she had with her behavior, when she was manic or very depressed. She ran up financial bills and legal troubles when manic. She dropped out of school a few times, couldn’t graduate, and rarely held a job more than a few months.

But then she went on medication, and her life is 1,000% better she says.  Since being on the psych med, she has been able to graduate, find a decent job, and keep it for the past 5 years.  She has not been hospitalized in years, no suicide attempts since being on this med, has more and better friends than ever, and is now in a decent relationship (by her accounting) for the first time in many years.

Yes, she has some side effects and concerns about the meds, including long-term risks, but she feels that she would probably be dead without the meds and, in any case, feels the benefits far outweigh the existing (e.g. some weight gain) or possible known side effects.

She attributes most of her dramatic improvement to this med. She doesn’t believe she is “cured” or “recovered,” but she feels she’s 70 to 80% better than she was, and now has hope, and sees an upward trajectory, whereas before she only knew suffering and despair.

Corinna harvesting beets from here garden. She found intense emotional experiences after coming off psych meds.

Corinna harvesting beets from here garden. She found intense emotional experiences after coming off psych meds.

Our answer: Well, this is why our messaging needs to be careful. The idea is that “Medication helps some people, but not everyone, and they may be increasing the amount of disability in our country.”  This is because in the aggregate which means, on average, the vast majority of medications are no more effective than placebo in the long run.  But aggregate does not mean everyone. Just like any average of data, there are people who do extremely well and extremely well and extremely poorly with any kind of treatment.

Corinna’s personal recovery story included a time where medications seemed very helpful, but later the medications started causing a movement disorder and severe sleep disruption and both resolved when Corinna came off medications. Also, many medication critics talk about “numbing emotions,” and Corinna never felt numbed on medications. But when when she came off medications, there was an incredible emotional intensity and beauty to her life that she didn’t even know she’d been missing.

Jane might be advised to work on reducing the medications that are causing the most problems with side effects, to work with an extremely slow taper according to good tapering practices found in this list of resources. Most people find a “minimum effective dose.” Once people know the difference between medication withdrawal effects and the return of the “illness,” many people find that the biggest effect of their medication is simply relief of withdrawal symptoms.

Are we giving a respectful message?

Our challenger:

There are real people like this, just as passionate about the benefits from meds, as others here are about how unhelpful, or even harmful, they are. Suppose Jane tells you all of this and more; her feelings, perceptions and experiences with her mental health problems, before and after taking the med. How do you think broad, general criticism would sound to her, or to a neutral bystander? Personally, I’d find it patronizing and invalidating of me and my experience.

Never mind your negative experience with a drug. Everybody’s different.  If this drug did not help you, please try to wean yourself off (slowly, of course). Don’t tell people, “You may think the benefits outweigh the downsides, that the trade-offs are worth it, but I and Whitaker and “The Movement” know, and are telling you that, regardless of your individual circumstances and experiences, you are mistaken.”

Do you really see that as a position of respect for diversity of perspectives and experiences and inclusion? Is that the message you really want to convey? It’s one thing to rail against Psychiatrists; quite another to essentially dismiss all your peers.  Aren’t their experiences and perspectives every bit as valid, important and important to note as anyone here? I would sure hope so.

What should we stay instead?

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6 comments to Medication users call for respect from psych med critics

  • Firstly I found it interesting the the side effects of the drug the specialist prescribed where exactly the symptoms he was going to see the doctor about. I.E. insomnia! Secondly there is very rarely a need for medications to regulate mental health. It is merely due to the lack of knowledge and experience of the practitioner that promotes a ‘pill for every ill’ attitude when they do not understand what the cause of the problem is.

    For example, we know that if Matt was to seek support from a practitioner who has proven to successfully help someone in Matt’s position without drugs then the chances of him normalizing would be great. Suicide would not be a question! It is not a case that all psychiatrists are bad, just that some are inexperienced and are sold on a pharmaceutical based practices. There are many, many mechanics out there, but I would on choose Ferrari to fix my Ferrari not a local grease monkey whom i am sure will do a fine job on your old car.

    Thirdly, I couldn’t stress this enough, that the fact alone of having to seek help and answers only to not find any except a label of being mentally ill, thrown on drugs that remove you from you emotions and sense of self and sense of ambition and to top it off suffer side effects is a hell i wouldn’t impose on my worst enemy let alone a family member. I know because it is the story of my father and it is barbaric and outdated. Is this a symptom of Americas addiction to pharmaceutics? Should parents and youth be educated on mental health and personal development and who is the correct specialist to see if needed? Should pharmaceuticals be a last resort when all else fails? Should there be more regulations of pharmaceutics and accountability by practitioners?

  • James C. Coyne

    You write “This is because in the aggregate which means, on average, the vast majority of medications are no more effective than placebo in the long run. But aggregate does not mean everyone. Just like any average of data, there are people who do extremely well and extremely well and extremely poorly with any kind of treatment.”

    Your averaging is a bit off. See, for instance

    http://www.psychologytoday.com/blog/the-skeptical-sleuth/201202/cbs-60-minutes-news-treating-depression-sorting-through-the-confu-0

    http://www.sciencebasedmedicine.org/index.php/is-acupuncture-as-effective-as-antidepressants-part-2-blinding-readers-who-try-to-get-an-answer/

    • Hi Dr. Coyne,

      I got your comment on our psych Med critics post on Wellness Wordworks. I want to take the time to address it further but am leaving for a trip shortly so will have to give you the short version initially.

      Are you saying that Turner’s review of the same evidence Kirsch looked at shows that antidepressants do indeed work OK. And that there’s ways to check quality of Meta reviews and Kirsch’s are low? Is there similar critique of the reanalysis done of the Star-D trial? Are you familiar with that debate?

      I try to keep my brain in a space of “free market” for ideas. I try to be very cautious of idealogues and not be one. I am disappointed to know Kirsch is one but I can weigh his work accordingly. Bob Whitaker, if you know his work, is not, and has been looking long and hard for a legitimate other side of the story. Me too. Thanks for sharing.

      -Corinna West

      Thumb typed on my cell phone

      • [Editor’s note: This is Dr. Coyne’s response to my response which he gave me permission to post. We’ll be installing a WordPress phone app soon so this type of exchange doesn’t go via email again.]

        Thank you for considering my comments on your blog. Erick Turner reviews a broader range of antidepressant trials and with better statistical analyses, but comes to amazingly similar numerical effect size to Kirsch. Erick Turner is a whistle clean guy, who got himself in serious trouble when he worked at FDA because he poked around too much and unpublished studies. He did his New England Journal of Medicine paper when the studies were released in a lawsuit and he left FDA in disgust. The differences in the differences in how they interpret it. Kirsch says that in less of an effect size is=> .5., It is clinically insignificant. But that’s an arbitrary interpretation and many researchers would feel that such an effect size should arouse suspicion. Erick and I did a recent meta-analyses of all the clinical trials in which there was both a pill placebo and a psychotherapy condition (glad to share it, if you’d like). We found that antidepressants and psychotherapy had almost identical differences from pill placebo, although there was some indication of bias in the psychotherapy trials.

        I’m a clinical psychologist who does not accept money from drug companies and who got the American Psychiatric Association quite upset with a high profile systematic review and meta-analysis that concluded it was not worth while to screen’s cardiac patients for depression, because of the inadequacy of the care that they would receive. However, I frequently tangle with ideologues, and find them totally dismissive of reasonable criticism, not only for myself but from others.

        I think it was on your blog that I noticed a comment that on average, antidepressants are particularly impressive in their effects, I would tend to agree with that and also add that psychotherapy is not either. As Erick likes to say, the glass is hardly full, but it’s not empty. On the other hand individual clinical response to antidepressants or psychotherapy can often be impressive and maintained over time. The problem is we just can’t predict very well which will be better.

        There’s an indicate on my blog, Science Based Medicine, there are ways to objectively rate meta-analysis, and some reviewers fail miserably.

  • Dona Luna Wheeler

    As a survivor of trauma,and very detached parenting, esp from Mother, 25 years old I married an abuser. It was sporadic and though I noticed the glaring, dumming down I received because I was a stay at home Mom of 3 sons, who was disregarded and disrespected. and from their angry Dad they learned; and yes I did take up for myself often meeting his fire with fire. It was not until a sever spastic colon , that would not be soothed , continued to control my life that I sought help and an MD gave me Xanax. Late 80s and I asked few questions of this trusted and kind , older man. 89 saw me have a chemically induced breakdown and 17 hellish days in a unit.

    I was sent home to Mom again and found I had a very empty life, save for my children. So void did I feel that 3 years later I returned to the shrink and told him I thought I had the disease de sour , Bipolar. He agreed and the next 13 years I was physically and mentally ill, from toxic drugs , that depleted me , like nothing I had ever known, And to my horror ,I was portrayed by my partner,as being “sick” or not wanting to be part of the family.

    My soul and spirit were crushed and no one seemed to know or care or take an active interest, especially my partner.. So my kids saw all this and being male, by the time Dad left in their mid to late teens they had been patterned and had accepted I deserved to be alienated and that became very toxic and threatening as I healed my life from the misdiagnosis and trauma of living with a partner so detached as to be evil in my heart. He thinks my attempts at reunification have been an effort to regain his love and attentions.

    The ego of an alienation partner by passes reason, or the natural relationship, that has been denied me , first due to being misdiagnosed, and held in a lessor esteem, because this man, buried all his mistakes at my feet. And still he does not grasp what he has done to our angry, very reactionary sons and now 4 grandchildren , make for more ownership and even deeper exclusion , as he told them I abandoned them, becoming sick so I did not have to mother, or be a wife and do my duties. And so he went his way, for 5 years, never one visit with me to a therapist or shrink. And the reverb, I just could not get past, for I have never been so , is how, could he be so?

    7 years into “recovery” I will not expose the who what where and how.. My sons deserve the truth that in time will set them free, hopefully if they choose to , and while I mourn the loss daily , and will never unlove my sons, nor will I take their abusive detachment, on steroids as they learned from a master, how to unlove me. It is not their code, only adapted to, in their time of trauma, and I know they love me.

    As in the last conversation when I made a comment on a new granddaughter, he replied “Oh I don’t remember the boys as infants” and I thought, not you do not, and you don’t get a 2nd change, being friends with your children, and using your power and financial backing, to separate them from mom is contrived and now all the info is here.And so, my sons and I will know freedom from a past that dogs them, as they were bullied about their crazy Mom who was unable to be there for them.