Friday, March 24, 2023

Comments by Eileen

Showing 32 of 32 comments.

  • I wrote a letter to NYT on February 3. Noted that NYT had big announcement recently how they were going to include more obituaries of women, but I said what was the point if they were only going to trash them after death. I said that “peers and students” were not the only ones who supported Bonnie. etc. They say they will notify you if they are going to print your letter, and I have not heard anything.

  • so much wrong w this, from Dx children w BiP and using antiepileptic drugs rebranded as “mood stabilizers” …this drug is not approved by FDA (I know, I know) for children so if it were a serious attempt at research, they would need to have a lot of participants but this is just a nonsense (seeding or marketing) study to confuse further and push this drug…even in adults it is approved for mania and poorly rated for mania and not for symptoms of depression in BiP with very short studies…plus Depakote is actively discouraged for women by those researchers working in epilepsy due to many neuro issues with pregnancies, and low IQ in exposed children…psychiatry can ignore all of this…info on marketing studies here

  • yes, Sera, all you said

    when they say: “Moving peer support into the private sector requires national, higher, and uniform standards. This certification is designed to satisfy the needs of the private sector, opening up new opportunities, career pathways, and higher wages for peers.”

    This seems like it could be some kind of tactic to provide these lower-paid and potentially easily stigmatized staff for the private sector, which may mean for-profit firms too and private practices. The drive to have more credentials and more tests with constant recertification to meet “national standards” is going on in other fields too, even where people are considered professionals who already have graduate degrees. This is a money-grabbing and unnecessary and dangerous program.

  • ok, I am glad that he has changed his mind and I agree that this is good as far as it goes. So is he going to be writing and speaking for this new position? Is he interested in re-educating his peers in medicine and psychiatry and related types of jobs? Will he go to the African Caribbean community and tell them they have been discriminated against rather than what they have been told again and again about their inherent brokenness and biological deficits and being subhuman? What is the moral action required when one sees his whole career and views as wrong and perpetuating discrimination and harm from physicians? Looking forward to see him blogging about his change of heart on MiA and UK sites. Can he write as many articles for his revised views as he did to promote his biological views?

  • These drugs have a BLACK BOX warning for 60-70% increased rate of mortality when used off-label in older adults. They are so overused that the US HHS has a program to reduce their off-label use in older adults. This study is more confirmation of the increased mortality, and the need for regular people to get this information so they can make informed decisions when these drugs are suggested, as they will continue to be. In at least one hospital in NYS, all older adults are routinely given haldol “so they can sleep”, and it is very difficult to get this stopped since it is hospital policy.

  • This article says the drugs are not approved for theses uses. But it is more serious than that: these drugs have a BLACK BOX in the US for increased mortality (by 60-70%) when used off-label in older adults. There is actually a US Federal program to reduce the use of these drugs in institutionalized older adults. I understand that this is a UK study, but the overuse of drugs and other controls instead of human care is common in the US. And the horrifying thing is that some staff may think this is good care, while other staff just want people sedated.

  • Glad you are focusing on macro level issues, economic and political are difficult for many to see and understand, they seem natural and inevitable, and people are taught this way in schools and colleges, anything not status quo is called radical and even violent

    The Spirit Level is good, but Americans do not seem to understand what ‘social determinants of health” means: they think it means social as in social media, not social as economic and political and socially constructed.

    Also, many think that to continue to use “mental health” as a way to discuss what we may now understand as societal factors (racism, sexism, normalizing poverty, etc.), puts the focus back on the individual who needs to be fixed or helped or supported or protected, even if they require to be coerced or nudged, for their own good. This is especially true for children and other marginalized people (women, older adults, disabled people, children in foster systems, survivors of torture and/or institutionalization, etc.). Use of “mental health” terminology can perpetuate the thinking that these are individual=level issues to be corrected or ameliorated by individual-level interventions (drugs, talking, etc.) rather than issues of wider institutions. Calling it health seems ot mean that physicians and other health professionals have the best ways to deal with these people. Say oppression and repression, not depression.

  • Yes, the conception of SCZ has completely changed from the 1950s, as you found in your research. J. Metzl’s “The protest psychosis: How SCZ became a black disease” discusses the change from SCZ as social withdrawal in white women in US to how this is presented to us now. There are power points on web too about this, with drug ads showing the target for the Dx and Tx over time. Have not read Shrinks. I thought that the Globe was the paper that R. Whitaker wrote for, maybe wrong here.

  • As we know, psychiatry plays fast and loose with facts and evidence. They just say and write anything to refute what you are saying, no matter if it is true or not, and no matter if they even know it is false or may be false. If you say drugs are the mainstay of American psychiatry and mental health , they will say that lots of people get therapy. If you say that people are forced into treatment and hospitals, they say NO, there are diversion programs and even name one here in NYC which has NOTHING to do with diverting people from forced Tx, but most people in the audience do not know this. If you say that many people are overmedicated and that these drugs are studied one by one, but people are taking multiple drugs at the same time and there are few/no studies, they say that they use low dose and few drugs, and that psychiatrists are well aware of all this. Complete deception and also always think they are there to dominate the conversation in an audience among survivors or interested people, and to “set everyone straight” with their blatant privilege and to answer all questions rather than the moderator answering them, and in general, being arrogant psychiatrists in charge of all thoughts, feelings and behaviors for everyone wherever these psychiatrists happen to be. With patronizing smiles and texting when they do not agree with the speaker, etc.

  • I am so sorry for this horrible way they treated your mother. In the hospital my mother was in near NYC for heart attack, they gave all the older adults haldol every night “so they can sleep”. When we saw this, we intervened, but it was difficult to get it stopped since haldol was SOP for older adults. Horrifying things are happening routinely, can’t these nurses and others see what is going on? Actively hurting people and doing all for their own convenience (catheters and restraints). I am sickened. Yes, we need an advocate to survive a hospital stay now. Not to mention all the hospital-acquired infections.

  • got my MDD diagnosis after terrible accidents where I couldn’t work and was fired; got my BiP diagnosis after antidepressant use; was on tons of drugs of every class and combination for almost 15 years; almost literally died from “side effects” at least twice that I can remember; started omega 3, NAC as mentioned in this article, glutathione, magnesium, walked 30-60 minutes every day in the light, learned coherent breathing to go to sleep, learned mindfulness to stop anxiety, found someone who wanted their animals taken care of, meditation, real food, lot of water, got a decent supportive community, although this is very difficult in NYC. Oh, and stopped going to support groups for “BiP patients” at a local hospital. However, many productive years of my life were taken from me and I suffered a lot. I still know many people from this group or others who really believe that they have a broken brain, and that the fact that they are not feeling better after all the drugs, is because they have a very severe case of BiP.

  • When my mother was in a hospital at 90 years old or so, I accidentally learned that they had put her on haldol. I asked why and it was said that all older adults were given this “to be able to sleep”. I had a terrible time getting her off this in the hospital: no one would listen, they all just accept that this is “hospital policy” and that is the end of the discussion.

  • new study: Olfson M, Gerhard T, Huang C, Crystal S, Stroup TS. Premature Mortality Among Adults With Schizophrenia in the United States. JAMA Psychiatry. 2015 Oct 28:1-10. To perform their analysis, Olfson and colleagues cross-referenced national data from the Medicaid claims records of 20- to 64-year-old patients with schizophrenia with national mortality data to look at patterns of mortality between 2001 and 2007. “Most people who have schizophrenia in the United States are in the Medicaid program,” said Olfson. “While it’s not completely comprehensive, it is, in a broad sense, nationally representative.” For those in the Medicaid system, “Reinforcing earlier research, the study found that people with schizophrenia lose more than 28 years of life, particularly to cardiovascular disease” ( Schizophrenia Research Forum). If you read the many articles commenting on this Olfson study, they blame us: smoking, obesity, poor self care, and a few
    may even mention poor medical care, poverty or homelessness occasionally, but not the drugs or hopeless prognosis coming directly from psychiatry. or being killed by first responders etc. No societal or contextual analysis, only our broken brains, and bad habits.

  • And some people ask for drugs because they go to the many “information and education sessions” held all over the country, said to be about research and therapies for “mental health”, that are sponsored by patient groups and academic centers, paid by for profit drug and device firms etc. , where they are told about new drugs and treatments to ask their doctor about.

  • Some people ask for drugs because they are advertised on TV all the time, along with cartoon images of neurotransmitters coming out of a brain cell and going into another one, along with a narrative reinforcing the idea of chemical imbalance. (Only US and NZ allow Rx drug ads to public.) Some people ask for drugs because they believe that these drugs are scientifically studied and are the best responses/solutions to their broken brains. Some people ask for drugs because they are habituated/addicted/dependent etc. on them, and can’t withdraw despite trying. Some people ask for drugs because their family/friends take them. Some people ask for more drugs from the physician because they trust their doctor to do the best for them, and believe that docs still adhere to “Above all, do no harm”.

  • yes, psychiatrists are like sorcerers who can change something into something else by a word or action. They can take a person, a human being, and by a magic word (psychotic, manic, defiant, obsessive) turn her into something else entirely: a subhuman with a broken brain, not worthy of human rights, not to be believed, to be controlled and managed by whatever means are at hand.

  • Is Dr. Gotzsche still associated with the Cochrane Collaboration? Do any other board members or advisers from the Cochrane groups agree with him that these classes of drugs are dangerous, without scientific foundation and/or need to be pulled from the market? There are many reviews of these drugs in the Cochrane Collaboration and people still consult them to learn about the supposed scientific consensus for use. The reviews of these drugs and classes of drugs in Cochrane can be updated with adequate information about biases/limitations and competing priorities/conflicts of interest.

  • RE: death rates, premature mortality and loss of years of life

    This is a paper that is often referenced when discussing premature mortality and death rates and years of life lost, as it was the first one to look at several US states. WARNING: Please note that I am using their terms where I discuss their paper. I also quote from the article a lot.

    Congruencies in Increased Mortality Rates, Years of Potential Life Lost, and Causes of Death Among Public Mental Health Clients in Eight States
    Craig W Colton and Ronald W Manderscheid
    Prev Chronic Dis. 2006 April; 3(2): A42.
    Published online 2006 March 15.

    The study and paper in 2006 by Colton and Manderscheid was the one that found a loss of years of life for people in the public mental health system, with a larger loss for people with major mental illness or MMI (schizophrenia, major depressive disorders, bipolar disorders, delusional and psychotic disorders, and attention deficit/hyperactivity disorders). The data used in this analysis are from eight states (Arizona, Missouri, Oklahoma, Rhode Island, Texas, Utah, Vermont, and Virginia), out of the Sixteen-State Pilot Project funded by SAMHSA. Data was from 1997 to 2000.

    The authors looked at each state, comparing the death rates (standardized) for people in the public MH system with the death rates for all other people in the state. A person using the MH system even one time was included in this data.

    Results: Each state always had HIGHER death rates for people in the public MH system compared with the death rates of the rest of the state’s population. People with MMI had higher death rates than those without MMI in the same state MH system. Rates were also different in different years in the same state. In general, the people in the public MH system had a 2x higher rate of mortality compared to the state’s population (from low of 1.6 x to high of 4.9 x the general population in different states in different years).

    In terms of years of potential life lost, “Clients with MMI diagnoses died at younger ages than clients with non-MMI diagnoses in 14 out of 16 comparisons made for the six states providing data”. “Deceased public mental health clients had lost decades of potential years of life; averages varied from 13 to more than 30 years depending on the state and year”. One state (VA) only submitted data for in-patients and these death rates were lower than the other states. “Public mental health clients died at younger ages than their cohorts. Clients’ average death ages ranged from 49 to 60 in six of the seven states; Virginia public mental health clients who were in state psychiatric hospitals had higher mean ages in the 70s at time of death than the clients in the six other states. Male public mental health clients died at younger mean ages than their female counterparts, except in Virginia during 2000 (Table 2)”.

    Conclusions: “Most public mental health clients in all of the states died of natural causes and at younger ages than the general populations of their states. Leading causes of death for most public mental health clients were similar to those of individuals throughout the United States and in state general populations, especially heart disease, cancer, and cerebrovascular, respiratory, and lung diseases. People with mental illness have medical problems that lead to death, especially if they have inadequate medical treatment.” The explanations given in this paper were: “Researchers have studied the health risks of individuals with mental illness. Compared with other populations, people with mental illness have a higher prevalence of cardiovascular risk factors, including smoking, overweight and obesity, lack of moderate exercise, harmful levels of alcohol consumption, excessive salt intake, and poor diet (6,28). Lack of emotional support and social networks, lower socioeconomic status, and substance abuse are described as risk factors that affect mortality in people with serious mental illness (29). According to the Harvard Mental Health Letter, people with psychiatric disorders have higher rates of medical illnesses, but they often do not seek needed medical care (30). Lifestyle, social consequences of mental illness, and difficulties in accessing health care are factors related to managing physical illness in those with mental illness (31). Lifestyle factors include long-term use of antipsychotic medication and sexual practices. Social consequences of mental illness include poverty, unemployment, poor housing, stigma, and low self-esteem. Difficulties accessing health care include doctors’ focus on mental illness and not physical health, erratic compliance with health screening and treatment, and poor communication. ”

    Solutions: “If primary care and mental health professionals pay attention to the physical ramifications of mental illness, the physical health of people with serious mental illness can be improved (32). Improved intervention practices could include engaging clients in preventive care, diagnosis, and management of serious physical illnesses and additional training for mental and physical health professionals to encourage communication about patient care.” Another recommendation is always RESEARCH: “Research to track mortality and primary care among mental health clients should be increased to provide information for additional action and treatment modification. More research about diagnosis-specific risk and evidence-based practices should be developed. Awareness among clients and providers of mental health services and primary care should be increased. Best evidence-based practices for the prevention and diagnosis of medical conditions among people with mental illness should be developed. Mental health clients should receive regular primary health care by a physician to monitor their physical health. Finally, the recommendation from the World Health Organization to integrate mental health care and primary health care should be followed (37). At the least, mental health care and physical health care should be better linked within health care delivery systems.”

    My views: I would say that this article is the template for discussions of premature deaths and loss of years of life generally found in the psych and public health worldview and literature to this day. The facts are there for researchers and clinicians. The discussions then go on to list many possible reasons for these facts. Some of the reasons may be true in some cases or contexts some of the time, some are clearly invalid as presented, some make assumptions that are biased or ignorant, some are due to unacknowledged effects of drugs, even metabolic effects of drugs are mentioned but not really grasped as a priority area to understand. But they cannot see past the assumptions they hold and the training that they have had about us and our issues (as viewed and studied and discussed by them) and how to fix us by doing more things to us.

    Basically, they see the answer in better training, more medical care and screening, Tx for diabetes, etc., but with no understanding or mention of the problems of Dx, coercion, drugs and polypharmacy, industry practices, etc. There is little interest in poverty or meaningful lives. The interpretations always go back to blaming our lifestyles and our refusal to fully engage in their systems of *MI and medical care. They don’t talk about genes here, but most articles of this type include the *facts about genes.

    The only good thing here is that it provided evidence that the usual reasons given for our deaths (suicide and homicide and accidental deaths) were not the main causes. However, the ramifications of this are not good, as I mention later on.

    I recently participated in a webinar of several groups who were running an “integrated MH-medical system”, which is supposed to be the wave of the future to make us live longer, and it was so coercive: lots of databases for every visit and dx, and linkages to all kinds of *Tx and *follow-up, and make sure we take our metformin and antichlonergic drugs and do our diabetes screens and take stop-smoking drugs, and so on. I guess they will force us to go to exercise class too! Or monitor our food purchases (without SNAP food stamps I guess). Solutions are so medical and mechanistic, and always include drugs and compliance. Social contexts are missing. Premature mortality and loss of life is seen as a completely medicalized problem to be addressed within the medical system.

    I hope that I have not offended anyone by copying and pasting a lot of the nonsense that passes for science in this field.

  • Forming groups to read and discuss important work, such as Anatomy and Mad in America, as well as foundational work by Users/Survivors (U/S), is a good idea, not only for providers and researchers, but for all interested persons. I have thought about this too. Some people might be more comfortable with a sort of “study guide” to the chapters or articles. Some groups might be limited to U/S, some might be open to providers who are willing to listen without resorting to the default of the clinical gaze or authoritarian pronouncements on *facts or *science. It is all a tricky business.

    As for early intervention (as well as lots of *screening), I used to think that this was good, as in diabetes, cancer, learning, etc. However, it depends on the theory/model and the chosen interventions. If early intervention results in lots of forceful or unnecessary or stigmatizing or costly actions without beneficial effects or with harmful effects, then these screening or early intervention actions are not to be recommended or undertaken. Even in medicine, there are many controversies about screening and intervention for breast cancer, prostate cancer, cholesterol levels, asthma drugs, C-sections, hormone supplements, etc. Industry and professional associations greatly influence the notions around causes, interventions, timing, doses, prognosis, etc. , and provide *tool kits or *arsenals for professionals and the general public. The education many professionals receive now is focused on supposed biological deficits, individual and familial, with the idea of *lifestyle (in addition to *genetics) as an explanation for all ills. Upstream issues like stable housing, decent jobs with living wage and benefits, safe neighborhoods and schools, good care, recreation or leisure, access to good medical and dental care, is often not considered, and our culture of violence, racism, sexism, agism, etc. is generally ignored. If we bring individualistic and mechanistic models to early interventions, with the same punitive and judgmental mindset common in dealing with people w addictions, MH Dx, prison histories, etc. , we will only harm people earlier in life.

  • When my mother was in the hospital, we reviwed her chart and saw that she had been started on Haldol in the hospital. When we asked about this, we were told that this is standard practice, that antipsychotic drugs are routinely given to older adults in the hospital because “they need help to sleep”. This is in spite of the Black Box warning for antipsychotic drugs for older adults with no diagnosis based on the 60-70% increased mortality rate in these older adults. Hospital staff were unaware of this issue, and were fairly hostile when we said that we did not want her to be given any more of these types of drugs. We had to speak to several staff, and it was a big deal to get her off Haldol. This practice of giving all older adults in the hospital this class of drugs as a standard practice raises issues of off-label use; lack of informed decision-making; need to investigate whether there is promotion by industry of this practice as a normal and standard one; understanding that there is a need to monitor care of people in the hospital, especially certain groups of people who are perceived by staff as less able to understand or make decisions. This incident brought home to me again the widely held beliefs and practices in US society that all drugs are beneficial; inadequate awareness on the part of staff about adverse effects and drugs warnings; belief that staff are to make decisions and patients are to be compliant; and difficulty of dialogues with staff on issues they believe thay are experts on.