Sunday, July 5, 2020

Comments by Rachel

Showing 18 of 18 comments.

  • There may be a way to conceptualize neurodiversity without falling into the trap that you describe, Steve. Think of the neurobehavioral space as a multidimensional represention of where people map on all the dimensions of their neurological functioning. Those who fall close to the average (say, plus or minus one standard deviation) along several core dimensions — such as preference for social contact, emotional processing style, sensory processing sensitivity — would be considered “neurotypical.” Those who fall towards the tails of the distributions on several core dimensions would be considered “neurodiverse.”

    In this scheme, being neurotypical is just a description of one’s position within a central cluster in the space – it need not be a judgment of “normality” as some inherently better state. This conceptualization allows for a lot of variation in human behavior – even those in the neurotypical space could be outliers on a couple of dimensions (confirming your idea that “we’re all ‘neurodiverse’ to a large extent”). It also allows people to be neurodiverse without necessarily fitting into any of the currently defined labels that are considered neurodiverse – “autistic,” “ADHD,” “tourette’s,” etc.

  • “The court continues to have some concerns as to whether petitioner completely understands that her prior conduct was caused by her developing mental illness and not merely caused by the medications she was taking at the time of the offense.”

    One of the most disturbing things about this article is the complete scientific baselessness of the judge’s reasoning. He gets competing diagnoses from five different professionals and picks the one he thinks, for whatever reason, conforms to some measure of reality. It’s scary to think about being subjected to such an absurd and disempowering process (again). It’s like justice in the Middle Ages.

  • I went to read the Globe story on Community Care expecting to be outraged, but I didn’t think it was that bad. The article’s main point was that Massachusetts’ failure to fund community care after de-institutionalization caused massive breakdowns in the mental health system and left many people suffering and without support. I’ve read that same argument from Robert Whitaker many times. The Globe story also mentioned a couple of times that the old system was highly abusive, and that many people went on to live better as well as freer lives after being released from institutions.

    I took the following paragraph to be the ‘thesis’ or main point of the article:

    “The result is a system that’s defined more by its gaps and gross inadequacies than by its successes — severely underfunded, largely uncoordinated, often unreliable, and, at times, startlingly unsafe. It is a system that prizes independence for people with mental illness but often ignores the accompanying risks to public safety. A system that puts blind belief in the power of antipsychotic drugs and immense trust in even the very sickest to take them willingly. A system that too often leaves people in mental health crisis with nowhere to turn.”

    Where the Globe really fell down, that Sera’s response addresses so accurately, is in not seeing the harms caused by the actions of today’s mainstream mental system, as opposed to its inaction.

  • The law defines varying degrees of culpability when a life is taken, such as first-degree murder, second-degree murder, manslaughter. Creating legal and social accountability for psychosis-driven assault can be addressed in a similar way. The problem is forcing drugs on people under the guise of treatment for a chronic disease, when there’s no scientific proof of a chronic disease process at work. And therefore no way for the individual to counter the accusation that they are still dangerous.

  • If doctors can prescribe medications off-label without any evidence, why shouldn’t companies market them on the same basis? It doesn’t make sense that doctors can legally prescribe anti-psychotics to two year olds but companies can’t encourage them to do it. The public should come to accept the fact that neither the FDA, nor their doctors, nor the pharmaceutical companies are effective guarantors of the safety or efficacy of substances that they put in their bodies – caveat emptor. I don’t see the current pharmaceutical regulatory regime as being particularly effective. Public health would be better served by open efforts to crowdsource information on drugs and their effects under real-world conditions, that people could access and use to make their own risk assessments.

  • Hi Sandra,

    After listening to your testimony before the committee including the question and answer periods, I was impressed with the way you presented the research on medication and long-term functional outcomes. Your deep involvement in the local mental health scene over many years gave a lot of credence to your perspective and it seemed to me that the committee members genuinely respected your contributions because of that, over and above your credentials as a physician.

    Going forward when speaking to these budget-minded folks, I think you could make your case even stronger by articulating more clearly the cost implications of the evidence base that you presented. Of course the committee wants to hear “if you do X, you will save Y dollars over so many years”. But even if the answer is not this simple in your view, it can be just as important for you to explain why they need to reconsider their assumption that the forced medication approach will save the state money.

    There’s clearly a belief on the part of the proponents of the forced treatment policy that it will both improve outcomes and save the state money. You did a good job of explaining how the research shows it probably won’t improve outcomes, but you could have drawn a clearer link to why it also is unlikely to reduce long-term costs. I think there were a number of committee members who would have liked you to go a step further in explaining that to them. People seemed to respond well to concrete illustrations, so for next time perhaps you could think through an example something along the lines of:

    Suppose we in Vermont experience the same results as this Wunderink study, where about 20% of the patients on the medication minimization arm had a better functional outcome, and the other 80% had on average the same levels of symptom reduction, relapses, and functional outcomes as those who took medication consistently over time. If we institute a forced policy of long-term maintenance medication for everyone, we’d be spending all that extra money on meds for this population over 10 or 20 years without improving outcomes, and in fact we would cause worse outcomes for about a fifth of the population. Is that really a good value for our state?

    And then on top of that, you can conclude by highlighting all of the evidence-based approaches you are working on to actually improve outcomes more dramatically.

  • “If those in support of this bill wanted to be fully transparent and honest, they would have named it ‘An Act establishing legalized violation of mind, body, and spirit via physical and chemical restraints, immediate loss of civil and human rights, and threats of indefinite imprisonment.’”

    You totally killed it with that line!

  • Hi Maria,

    Interesting opportunity you have here. One of the lessons publicized on this site and on blogs like 1boringoldman is that much of the harm associated with psychotropic drugs has been caused by scientific fraud instigated by capitalist incentives. In some cases it’s outright misrepresentation and hiding of negative findings, in others manipulation of study design and statistical analysis to produce desired outcomes. Invalidating and biased methodologies in statistically complex studies can even be inadvertent on the part of well-intentioned researchers following the prevailing practices in their fields. So you may want to dig into the fine print of how your data will be used after you submit it to Sundance. What commitments have they made to you, in writing, that the data underlying their claims will be open to critical review by independent researchers? I personally would not be satisfied with the position that they will meet the standards of the FDA and other regulators, since those agencies have often proven to be captive to business interests.

    From your comments and research it seems like individuals at this company are sincere and have a good balance between optimism and realism. But having worked at an investor-funded startup myself, I can tell you that when the money is running out, and the positive results you hoped for aren’t there, and the livelihoods of you, your friends and colleagues are on the brink of disappearing into bankruptcy within 2-3 quarters, it’s very hard to resist that temptation to make the data look better than it is – if only, you may tell yourself, to give you the time and resources to make that really important discovery that will save so many lives and justify everything.

    Evaluating a data transparency policy for a company like Sundance is way outside the scope of my background, but there are other writers on MIA like Jay Joseph (for his knowledge of genetic studies) or David Healy (on clinical SSRI trials) who may be able to advise you on what is an acceptable data use policy for a company like Sundance.

  • My sister, a psychiatrist for the past 20 years, had her entire Ivy League education and medical school paid for by our father. She graduated without a cent of debt. She has a beautiful house in the suburbs, three healthy well-adjusted kids, and derives a lot of satisfaction from the social standing and respect that one gets from being a doctor (even a psychiatrist). She has tremendous skills and would be a success at whatever she chose. Her husband works on Wall Street and is very well paid. And she still won’t criticize psychiatry publicly, even though she has serious reservations about the effects of some drugs. Let’s face it, not all psychiatrists are forced to keep quiet by a life of indentured servitude. Some are just too cowardly to risk their social standing by challenging the mainstream.

  • Layla,

    Give me an explanation for how the brain-based experience of falling in love differs from the brain-based experience of psychosis in a way that evidences why the former is considered non-pathological and the latter is considered the result of an illness from a biological perspective. They’re both altered states compared to the normal psychological baseline that most people experience throughout their lives. They can both distort a person’s subjective interpretation of reality on a temporary or protracted basis, and cause a person to hold views (both cognitive and emotional) not shared by the majority of others within their culture or social group. There are studies claiming to show that the brain scans of people experiencing both of these altered states are different than “normal” brains. There are no doubt genes without which human beings could not experience either of these states.

    Yet one is called a pathology and the other is called human nature. Laura is absolutely on point when she critiques Thomas Insel for implying that mental illnesses are brain circuit “disorders” when, at the present time, they can only be defined in terms of observed behaviors rather than actual brain circuits.

  • This is a great treatment of a fascinating and significant topic. The Plomin (2013) article cited in the references had some subtle but potentially huge arguments that I think are worth highlighting as a complement to the main post:

    “If a disorder is influenced by many genes—and this is the conclusion that emerges from GWA research—its genetic liability is likely to be normally distributed. Thus, in terms of genetic liability, common disorders are quantitative traits (Plomin, Haworth, & Davis, 2009). In other words, genes that are found to be associated with disorders in case-control studies are predicted to be correlated with the entire range of variation throughout the normal distribution. Stated more provocatively, this means that from a genetic perspective there are no common
    disorders, just the extremes of quantitative traits….

    Three important implications follow from this conclusion that common disorders are quantitative traits. First, at all levels of analysis from biology to brain to behavior, it should stimulate research on quantitative dimensions rather than qualitative disorders. Although the extremes of these quantitative dimensions are important medically and socially, there seems to be no scientific advantage in reifying diagnostic constructs that have evolved historically on the basis of symptoms rather than etiology. Focusing on quantitative dimensions could lead to a new
    approach to psychopathology based on etiology rather than symptoms (Plomin et al., 2009). Second, research on quantitative dimensions leads away from the notion of curing diagnosed ‘‘cases’’ toward a public health model that focuses on preventing problems and promoting health rather than curing illness once it occurs (Brownson, Fielding, & Maylahn, 2009)”

    The implications of Plomin’s arguments to me are that genetic researchers need to move to a model of using genetic variations as clues to unravel the biological mechanisms involved in the spectrum of behavioral traits without the misleading and reductionist assumption that an independently existing (reified) disease process or genetic mistake is occuring that clearly differentiates normal from pathological (or even extremely resilient) traits.