Large cohort studies of people with a first-episode psychosis provide a unique opportunity for finding out why so many young people with schizophrenia spectrum disorders die at a young age. However, it seems that those psychiatrists who have access to the mortality data generally do not want the facts to come out. In published cohort studies, there is virtually always too little information or no information at all about the causes of death.
In 2012, Hegelstad et al. published 10-year follow-up data for 281 patients with a first-episode psychosis (the TIPS study). 1 Although their average age at entry into the study was only 29 years, 49 patients (17%) had died in less than 10 years. The authors’ detailed article was about recovery and symptom scores and they took no interest in all these deaths, which appeared in a flowchart of patients lost to follow-up and were not commented upon anywhere in their paper. In the text, however, they mentioned only 28 deaths (11%), so it is difficult to know how many died.
On March 5th 2017, I wrote to the first author: “In your interesting study from 2012, ‘Long-Term Follow-Up of the TIPS Early Detection in Psychosis Study: Effects on 10-Year Outcome’, 28 patients died of 281. Do you have the causes of death, which would be very interesting to know about? I noticed that most patients were still on antipsychotics 10 years after they started (table 2). I consider this very frightening, e.g. around half of them will have tardive dyskinesia (which is often masked by ongoing treatment) and many, if not all, will have developed permanent brain damage at this point, to mention just two of the important harms of long-term treatment. In contrast, only 17% of patients in Lappland were still on antipsychotics 5 years after their first episode (compared to 75% in Stockholm).”
I sent a reminder ten days later and was told I would get an answer shortly. On May 10th, I wrote again: “It is now another two months. You did an important study and it is important for the world to know what 10% of your very young patients died from in just 10 years. It is a frightening death rate. Do we need to file a Freedom of Information request to get this information?”
Hegelstad replied that, “We are preparing a manuscript detailing the information you are asking for. It will be submitted to a peer-reviewed journal. When published the information will be readily available to all.”
The preparation of the manuscript and its publication were very fast. Already in June, the paper was out, in World Psychiatry.2 With this record speed, I wondered what the peer review had been like, if there was any. It looked more like a letter to the editor, with no subheadings, and taking up only 1.5 pages. The number of deaths was now neither 49, nor 28, but 31.
As the information I had requested was not to be found in their article, Bob Whitaker and I wrote a letter to the editor of the journal, Professor Mario Maj, on August 16th with this message: “Melle et al. report in a 10-year prospective study of 281 patients with schizophrenia spectrum disorders that 11% died, although their average age at entry into the study was only 29 years. Their study might give us a unique insight into why so many patients with such disorders die so young, but there was too little detail in their paper to provide this much needed knowledge. We very much hope that you will help getting the knowledge Melle et al. have in their files published by publishing our short letter and asking them to respond to the issues we raise. That would be a great service to psychiatry, the patients, and everyone else with an interest in this vitally important issue.”
Our submitted letter was this one:
Why did so many young people with schizophrenia spectrum disorders die so early?
Melle et al. report that, in a 10-year prospective study of 281 patients with schizophrenia spectrum disorders, 11% died,1 although their average age at entry into the study was only 29 years.2 Their study might give us a unique insight into why so many patients with such disorders die so young, but there was too little detail in their paper to provide this much needed knowledge.
Melle et al. write that 16 died by suicide, 7 by accidental overdoses or other accidents, and 8 from physical illnesses, including 3 from cardiovascular illness. In order to attempt to separate iatrogenic causes of death from deaths caused by the disorder, we need to know:
When did the suicides occur? Suicides often occur early, after the patients have left hospital,3 and are sometimes iatrogenic. A Danish register study of 2,429 suicides showed that, compared to people who had not received any psychiatric treatment in the preceding year, the adjusted rate ratio for suicide was 44 for people who had been admitted to a psychiatric hospital.4 Such patients would of course be expected to be at greatest risk of suicide because they were more ill than the others (confounding by indication), but the findings were robust and most of the potential biases in the study were actually conservative, i.e. favoured the null hypothesis of there being no relationship. An accompanying editorial noted that there is little doubt that suicide is related to both stigma and trauma and that it is entirely plausible that the stigma and trauma inherent in psychiatric treatment — particularly if involuntary — might cause suicide.5
What does accidental overdoses and other accidents mean? Did the doctors overdose or did the patients overdose themselves by mistake, and which types of accidents were involved? Psychotropic drugs can lead to falls, which can be fatal, and suicides are sometimes miscoded as accidents.6
It is surprising that 8 young people died from physical illness. What were these illnesses exactly and what were the cardiovascular illnesses? If some of these people suddenly dropped dead, it could be because antipsychotics can cause QT prolongation.
Peter C. Gøtzsche1 and Robert Whitaker2
1 Nordic Cochrane Centre, Copenhagen, Denmark
2 Boston, United States
Conflicts of interest: none.
1. Melle I, Olav Johannesen J, Haahr UH et al. Causes and predictors of premature death in first-episode schizophrenia spectrum disorders. World Psychiatry 2017;16:217-8.
2. Hegelstad WT, Larsen TK, Auestad B et al. Long-term follow-up of the TIPS early detection in psychosis study: effects on 10-year outcome. Am J Psychiatry 2012;169:374-80.
3. Chung DT, Ryan CJ, Hadzi-Pavlovic D et al. Suicide rates after discharge from psychiatric facilities: a systematic review and meta-analysis. JAMA Psychiatry 2017;74:694-702.
4. Hjorthøj CR, Madsen T, Agerbo E et al. Risk of suicide according to level of psychiatric treatment: a nationwide nested case-control study. Soc Psychiatry Psychiatr Epidemiol 2014;49:1357–65.
5. Large MM, Ryan CJ. Disturbing findings about the risk of suicide and psychiatric hospitals. Soc Psychiatry Psychiatr Epidemiol 2014;49:1353–5.
6. Brown S. Excess mortality of schizophrenia. A meta-analysis. Br J Psychiatry 1997;171:502-8.
Eight days later we were told by Maj that, “Unfortunately, although it is an interesting piece, it does not compete successfully for one of the slots we have available in the journal for letters.”
Five days later, I replied and told Maj that we very much hoped he would reconsider his rejection of our letter:
“Allow me to add that people I have talked to in several countries about deaths in young people with schizophrenia — psychiatrists, forensic experts and patients — have all agreed that we desperately need the kind of information we asked you to ensure we get from the very valuable cohort of patients Melle et al. reported on in your journal.
There is widespread and well-substantiated suspicion that the reason we have not seen a detailed account of causes of death in cohorts like the one in the TIPS study by Melle et al. published in your journal is that the psychiatrists prioritise protecting their guild interests rather than protecting the patients. By declining to publish our letter and get the data out that Melle et al. have in their files, you contribute to that suspicion. We previously asked one of the investigators, Wenche ten Velden Hegelstad, to provide us with these data but were told on 10 May this year that they would be published … They have not been published, as what Melle et al. have published in your journal is not an adequate account of why these young people died.
Therefore, we call on you to ensure these data get out in the open, for the benefit of the patients. We believe it is your professional and ethical duty — both as a journal editor and as a doctor — to make this happen. This is not a matter about the slots you have available in the journal for letters. It is a matter of prioritization.”
We did not hear from Maj again. But since TIPS was supported by grants from the Research Council of Norway, I will ask the Council for the raw anonymised data on the deaths, as this is clearly in the public interest. TIPS was also supported by Lundbeck Pharma, Eli Lilly, and Janssen-Cilag Pharmaceuticals, which will hardly be interested in getting these data out in the open, so it will be interesting to see what happens.
In contrast to the authors of the TIPS study, professor of psychiatry Merete Nordentoft, Copenhagen, was forthcoming when I asked her about the causes of death for 33 patients after 10 years of follow-up in the OPUS study, also of patients with a first-episode psychosis.3 I specifically mentioned that suicides, accidents and sudden unexplained death could be drug related. I received a list of the deaths and Nordentoft explained that no one had a heart related cause of death registered but that this was probably because they were so young. In the certificates she had seen some patients had simply dropped dead, one of them while sitting in a chair.
This is how it should be. Openness is the way forward if we wish to reduce the many deaths that occur in young mental health patients. It shouldn’t be necessary to say this, but unfortunately there are few psychiatrists like Nordentoft. I have asked Hegelstad about the conflicting numbers of deaths and also asked to get the causes of death in more detail. I did not hear from Hegelstad again.
Conflicts of interest: none.
I was given the description/diagnosis of severe mental illness at age 19 and I did try to suicide to escape from the feelings of pain/horror/despair. The psychiatric diagnosis gave me a final reason to end my life (no hope of a future) and the psychiatric drugs gave me a means of how to do it.
Obviously I survived.
In fear of the (unknown) future people poison themselves (with psychiatric drugs) in the present moment by choice or from the intimidation of their psychiatrist( pseudo mother/father authority).
Many people can have a much more productive life off of the psychiatric drugs that inhibit cognition and physical activity.
Doctors want their patients to be, to think smart and then poison the brain? That is crazy.
I agree, markps2, that doctors who lie to their patients claiming they have proven “lifelong, incurable, genetic” brain diseases, when there’s zero proof that any of the DSM disorders has any scientific validity whatsoever, are unethical, sick, and morally repugnant. And, no doubt, this could be very depressing if one buys into this lie. So depressing that it could result in suicides, given the psychiatrists are actually taking away all hope of recovery from their patients, which really is evil.
And the “schizophrenia” drugs, the antipsychotics/neuroleptics, are neurotoxic drugs which can, all by themselves, make a person “psychotic,” via anticholinergic toxidrome poisoning. They can also create the negative symptoms of “schizophrenia,” via neuroleptic induced deficit syndrome as well. So there is good reason patients don’t want to take these “psychosis” creating, ironically named, “antipsychotics.”
A neuroleptic induced first episode “psychosis” can be terrifying, trust me, I know from personal experience. I was so terrified I wouldn’t leave my bedroom for three days. But the psychiatrists are all seemingly ignorant of these known neuroleptic induced illnesses, since they have not been included in their scientifically invalid DSM billing code “bible” yet.
Thank you for all you are doing to get the truth out, Peter and Bob. I hope to see an end to today’s American psychiatric holocaust, a holocaust of mostly child abuse victims, according to the medical literature. Our society would be much better served if we started arresting the child molesters, rather than continuing to have the psychiatrists turning millions of child abuse victims into the “mentally ill” with the psychiatric drugs. Since, of course, that is technically illegal behavior on the part of the psychiatrists.
They also want us to trust them implicitly, then lie their heads off about “chemical imbalances that cause mental illnesses.”
I like Dr. Goetzhe–a REAL doctor, not afraid to call out those quacks and hucksters on their BS.
I lost a friend..she was a nursing student….she was hospitalized and given the diagnosis of schizophrenia….and she was treated with thorazine…a short while after she was found dead….suicide…that was back in 1963…I still remember her believing that she was being treated for a chronic lifetime disorder…very sad…
I’ve lost multiple friends and acquaintances to the effects of psychiatric drugs. If it were any other group of people being so decimated and impacted there would be universal outrage. As is, you’ve got a cover up, with multiple accomplices in it, going on. I’m hopeful that the truth will out eventually, but, at this point, it is still an uphill struggle.
No doubt the public thinks, So what if they die? As long as they don’t go on random killing sprees.
Since that’s all the idiots on TV talk about. And everyone stupidly assumes that “lack of ‘meds'” caused the killing!
One of the headaches is that the suicide rate of “schizophrenics” is 20 times that of countries’ national suicide rates, a ratio certainly not helped by drug therapies. Orthomolecular treatments bring this ratio down to 1:1, but aren’t commonly seen, because they drive many pharma oriented psychiatrists into homicidal rages.
In one of my – futile – complaints, I wrote this about antipsychotics:
“These are appalling drugs. They all basically do the same thing and that is drug induce akathisia, hammer you and then make you eat and especially so with Olanzapine. After a week it’s a form of torture… if you’re awake you are forced to put food in your mouth. The implications for blood/sugar and all the other health issues is obvious and you are well aware of this, but can’t stop putting food in your mouth. This is diabolical, unconscionable and reprehensible. When I said this to Dr ******* his reply was: ‘Good’. They block the dopamine D2 receptor, which has been described as a form of chemical lobotomy, what this means is that you just don’t care about anything and in the extreme. If you take these drugs you are removed from your higher function. It’s a wasted zombie feeling that takes not caring to the extreme: you will know how a person can get into an aircraft full of passengers lock the door and fly it into a mountain. According to Joanne Moncrieff, Grace E Jackson and many others, brain shrinkage also happens on long term use. On the inserts you will read that it increases anxiety and insomnia – the very reasons I was supposedly being treated – plus you get breast growth – also diabolical being a male – and that is exactly what happened to me.”
Yep…I too found Olanzapine akin to torture, and yeah, I too tried suicide while on it. Far out that is an EVIL drug!
And facial hair for women with Depakote!
It’s my view, that the subject of people on CTO’s , those sectioned and therefore forced to take these horrors, deserve us to absolutely rain down informative fire power on the appalling human rights issue, that this is.
Thank you, sir, for attempting to shed light on all of this, and thank you to Mr. Whitaker also. This is important information. Best to you both.
Thanks Dr. Gøtzsche. Anyone who knows anything about the history of psychiatry will understand why psychotropic drugs, or in other words toxic brain poisons, cause suicides, death, disease and suffering. Unfortunately, hardly anyone has the time or the inclination to study the true history of psychiatry. It should be noted that in addition to the crimes committed through “medication,” it is criminal to label innocent people with fictitious diseases in the first place. What is “schizophrenia”? No one knows, because the person who invented “schizophrenia” has long since gone the way of all the earth. What is “schizophrenia”? It is, in the words of Dr. Thomas Szasz, the sacred symbol of psychiatry.
https://psychiatricsurvivors.wordpress.com/2016/06/19/schizophrenia-the-sacred-symbol-of-psychiatry/
Furthermore, psychiatry seeks to impose this sacred symbol upon the diverse populations of the world. It attempts to make everyone crazy like us. https://psychiatricsurvivors.wordpress.com/2014/06/23/crazy-like-us/
The elephant in the room isn’t just the drugs, although the drugs constitute a major portion of that pernicious pachyderm. The elephant in the room is psychiatry itself.
One of my friends who has given me moral support in coming off my psych drugs–and prevented me from suicide once!–has lost 3 family members to psychiatric treatments.
She used to attend NAMI with me because she wanted to support and help her loved ones. She no longer attends, since she has concluded they really don’t care about anything but Big Pharma money and controlling family members. As long as the “loved one” is totally drugged up, segregated, or brain-fried and can’t embarrass or annoy them who cares how awful they feel or how young they die?
I parted ways with NAMI about the same time she did. Got sick of how they assumed all “consumers” were dumb bunnies. Apparently I wasn’t “medicated” enough, because I asked questions that bothered people. That got Socrates in trouble, after all.
NAMI did nothing when psychiatry killed a friend of mine at 29. National Alliance for Manufacturing Illness there’s blood on YOUR hands!
ELEPHANT IN THE LIVING ROOM AKATHISIA
Email From Me To The UK Ombudsman :-
On Thu, 16 Feb 2017 at 10:58,
Dear K.
Would you please pass this Information email on to J. D. I apologise for any unpleasantness attached to the contents.
Please find attached:-
1. The Relevant Sections of my November 8, 1986 Handwritten Adverse Drug Reaction Warning Request Letter (3 pages).
2. The November 24, 1986 Irish Record Summary (2 pages) – With Requested Adverse Drug Reaction Warning Intentionally Omitted.
3. My January 13, 2012 ‘Near Fatal Modecate Experience’ – ‘Statement’, sent to;- Galway University, Depot Side Effect Research & Monitoring Team
4. Admitting Doctor, Dr Fadels description of me ‘on presentation’ at Galway in November 1980.
5. The November 1986 False Reassurance Letter From Dr Donlon Kenny
MALPRACTICE AT GALWAY 1986
Please examine and reconcile the attachments to this email and please read through the background information to the offending drugs for perspective. My recovery after April 1984 was as a result of discontinuing these drugs.
MALPRACTICE & DIAGNOSIS
I don’t think a Medical environment engaging in Malpractice can be trusted to represent a Medical Opinion.
BACKGROUND INFORMATION ON THE OFFENDING DRUG
Suicide
Associated with Akathisia and depot Fluphenazine (Modecate) treatment
https://www.researchgate.net/publication/16313058_Suicide_Associated_with_Akathisia_and_Depot_Fluphenazine_Treatment 1983 (Dr K Shearer, Dr A Frances..)
Dr A Frances went on to become Committee Chairperson to DSM 4.
Akathisia
I think I describe the symptoms of Akathisia fairly well in my November 1986 Handwritten ADR Request Letter + in My January 2012 ‘Statement’ to Galway University.
https://en.m.wikipedia.org/wiki/Akathisia
Wikipedia:- ‘Signs and Symptoms’
“….Neuro-psychologist Dr. Dennis Staker had drug-induced akathisia for two days. His description of his experience was this: “It was the worst feeling I have ever had in my entire life…”….”
Manufacturers Warning
Adverse Drug Reaction
https://dailymed.nlm.nih.gov/dailymed/archives/fdaDrugInfo.cfm?archiveid=7520
“…The side effects most frequently reported with phenothiazine compounds are extrapyramidal symptoms including pseudoparkinsonism, dystonia, dyskinesia, akathisia….”
Yours Sincerely
Me
I’m leaving this comment in hopes that it may help someone in the future. I’ve lost most of my hope. At 14 yrs old I was diagnosed as schizophrenic even though I met none of the criteria. I was dosed with every available drug including Haldol which caused me to have neck spasms at work. I went on to drop out of college. I fought back and eventually went back to college but felt I would never have children or a family because of this diagnosis and others I received later in my life with more drugs and later traumatic hospitalizations. To this day I wonder if my young brain body may have been affected by that drug and subsequent drug treatment.
Hi Help, You found this site – that in and of itself is a very good thing. I know hope sometimes its a word that hurts more than helps at times. Just hold on and walk a step by step breath by breath life and read. IT would be so nice to have mini and or large trauma sanctuaries open 24/7 to go to when hope is lost is the junkyard of life. They have a small version for cancer folks in my area. Not open all the time but enough with free alternative therapies and support groups. Everyone deserves this type of support ACROSS THE BOARD. And we all need group support to help deal with our memories of the trauma that we lived through in the psych units. Reparation monies from the Psych docs and guilds and Big Pharma folks.
How did the Japanese-AMericans fight for their reparation? Learning and gaining knowledge helps with the despair!!!!!!!!!!!!! Pick something and learn, then pick something else, and learn some more. Walk, hug trees – do different things, try different libraries, thrift, volunteer to walk a dog at a dog shelter, buy a goldfish, write a letter to someone. PEN PALS. ANYONE?
AND TRY TO KEEP CONNECTING. THEY MADE US ASHAMED. Try to believe even when you don’t feel like it that we are worthwhile and valuable. Call your Senators and Congress members. Sometimes they will talk to you!!! Thats one interaction with another adult who doesn’t know your history!!!!!!!!!!!!!!!!!!!!
Thank you Catnight. My story is more involved than I wrote but kept it short. I have tried many of your suggestions over the course of 8 yrs as well as untold friends and family that have tried to help. I am exhausted physically, mentally and spiritually and once a professional very responsible active person am literally afraid of my own shadow and have been unable to work or concentrate. I have acted in very irresponsible ways and have not slept in yrs. I appreciate your caring and suggestions.
Thank you very much for your contribution.
The authorities sponsering the study have an obligation to support openess.
From a patients point of view it is very important to clarify the death rate. Pasients obviously want to survive and have a right to know about the risk. Where there is a risk there must be a choice.
The UN Committee against Torture (CAT/C/NOR/QPR/8) asked Norway 2015 preparing Norway’s report for 2016:
(a) “Whether the use of restraints and the enforced administration of intrusive and irreversible treatments such as neuroleptic drugs and electroconvulsive therapy has been abolished in law…
(b) Ensuring that every competent patient, whether voluntary or involuntary, is fully informed about the treatment to be prescribed and given the opportunity to refuse treatment or any other medical intervention… ”
I noted that public funding was done: “Supported by Health West (Norway grant 911369), Norway (Dr. Hegelstad); the Norwegian National Research Council (grants 133897/320 and 154642/320); the Norwegian Department of Health and Social Affairs and the National Council for Mental Health/Health and Rehabilitation, Rogaland County, and Oslo County (grants 1997/41 and 2002/306) (Drs. Vaglum, Johannesen, Friis, Larsen, Melle, and Opjordsmoen); the Theodore and Vada Stanley Foundation; the Regional Health Research Foundation for Eastern Region, Denmark; Roskilde County, Helsefonden”
From my point of view public authorities have to support that the information has to be given in order to ensure the possibility that patients are informed.
It may be necessary to file a freedom of information request.
While the intent here is admirable I still find it hard to join an argument which implicitly considers “schizophrenia” a real thing, rather than, as Monica C points out, a slur.
A friend with a 30 year history of psychotropic drugs, developed a bowel disorder, ? iatrogenic, requiring a colostomy which became infected and failed to heal. Hospitalised for this, she had a cardiac arrest and died 3 days later, brain dead. She was 59. Carrie Fisher, a cardiac arrest at 60. Documented average age of death for psychiatric patients, up to 25 years earlier than the general population. Everyone tut, tuts, when this is found in indigenous populations who have extreme poverty, poor nutrition and health care, but psychiatric patients, who cares?
In the `me first’ culture of western society, more extreme perhaps in America, simple `caring’ is a dirty word – it’s all about the science of making money.
Re caring – why did Insulin Coma `work’? By the 1960s it was clear that its action had no beneficial effect yet some people did well. The answer was, “because they got extra attention.” The `best’ Placebo/ECT `study’, the Northwick Park study in 1980 found that people who had an `organic’ depression and were unlikely to experience placebo effects, did. Why, “perhaps it was that they got extra care.”
Interesting that the cure/alleviation for even severe emotional distress has always been under our noses, but no one wants to know. Of course there’s no money in it and you don’t need to be a doctor to do it.
Maybe after the collapse of Western society over the next century, things might change, but not before, I suspect.
Jan Ivar Røssberg contributed with: «Psychiatric wards without medication: Why is it a bad idea?» to the conference at Litteraturhuset 8. February 2017 about “What is the scientific basis of treatment with or without neuroleptics?” of the Humania STIFTELSEN. In the Norwegian Early Detection study (known as the TIPS study) both groups where subject to the standard protocoll of medication with antipsychotics. He defended the use of antipsychotics and claimed that the Early Detection group in TIPS showed better recovery results i. e. approx one third. In the Norwegian press he claimed that 10 times more suicide or suicide attempts occured in the group starting treament 11 weeks later.
However Open dialogue using minimal medication reported 80% recovery.
See Scientific Symposium. Pharmaceuticals – risks and alternatives. The 15th of October 2016 in Gothenburg, Sweden. Jaakko Seikkula, Professor of Psychotherapy, Clinical Psychologist, Finland. Naturalistic study designs for developing the system to reduced medication
References:
Symposium: http://extendedroom.org/en/scientific-symposium/
Jaakko Seikkulas contribution: http://extendedroom.org/wp-content/uploads/2016/10/Open-Dialogueresearchgothenburg102016.ppt
What psychiatrists don’t tell you, what the social system don’t tell you is that the patient is stuck between two realities. One is the fact that most psychic diseases or (better) psychic disabilities can not be cured. Patients can get better only if they are really serious and if they do everything to get better in their lives. In that way, psychiatrists can do almost nothing for patients. If you don’t take care of yourself, most psychiatrists won’t take care much of you too because they are all working like a 10 hours a day distributor in a McDonald Drive in. Also there is “all” the other dangerous people in the street who are starring at you everyday and who hate you (…) The second reality is that we live in a crazy world and so the psychiatrist is like a mood or a psychic social regulator. Without psychiatry in our society, we would be invaded everyday by aliens, bats, sharks, spiders, snakes, scorpios, cockroaches, etc. Stigmatization, because of ignorance and because still today almost nobody is trying to inform the population. Good… luck everyone !
The funny thing is most of the ignorant haters who write articles in The Boston Globe or Times about how the all the SMI need to be locked up and punished–I mean treated–for their own good (the SMI, not other people. Totally disinterested in their concern for OUR well being.)
If one of these haters met some of us on the streets or in a grocery store they wouldn’t even know it. That’s the funny part. To hear some of those idiots talk you would think we were purple and had three heads.
Unless you are dumb enough to don a “Kick Me! I’m Bipolar!” shirt to attend Glen Close’s next stigma reduction rally.
Going off my drugs makes me blend in more rather than less. I’m more “with it” and can observe social cues and spaces more readily. (At the clubhouse folks kept bumping into each other. Could some drugs interfere with spatial perception) And I’m finally able to lose weight. Went from 350 to maybe 325. 190 more pounds to go. But at least it’s possible since I’m not hungry all the time now.