Thanks for this thoughtful and well argued statement, Alex. I appreciate the time and energy you’ve put in to this response to my interview with Awais, and I think you raise excellent points, which I intend to engage more fully when I’ve got more time.
For the mean time, just one clarification: We recently merged our websites, which is why you aren’t finding the language on our site previous to January of this year. If you search wayback machine for “https://withdrawal.theinnercompass.org/page/about-withdrawal-project”, you’ll see that we offer clarification about the sources and intention of our included content going back to our launch in 2019.
Thank you very much Kathleen, I was absolutely exhausted by the end of writing it! I wanted to show what a high standard of patient-led psychiatric communication could look like. I hope I have achieved it.
As a person who has survived the rigors of getting a PhD. you certainly have accomplished that. I have been a psych patient myself for decades, with a form of multiple personality disorder, and I one day plan to write my experiences, but I will not undertake the grueling task pf placing them in an academic context.
Thank you very much Kathleen! And I can definitely relate to the survival of rogors of PhD (congrats on surviving btw!). Out of curiosity, what was the bit you found the most, I'm not going to say painful, but dragging - like going on and on with seemingly no end in sight? I think that is a common experience I've noticed amongst peers.
I've found it challenging to communicate what it is like to really dig deep into a subject. So at undergrad I remember thinking "wow, I know so much about physics", then at masters thinking "wow, I now know so much more about x-ray diffraction" (my masters project). And then you get to a PhD where you spend the entire first year just learning, no serious project work at all, and I remember thinking "wow, I know so little".
So I am very happy to bump into someone who understands just how difficult it is to take two already difficult things, researching a subject, and finding words that coherently express one's story, and then putting them together in a way that makes sense.
Thank you for sharing that you've experienced a long time being a psych patient. If you have a story to write, I can imagine there were some very, the only word I can think of, eventful periods. I would love to read your story one day.
By far, the most painful part of my PhD was writing my dissertation. Part of my psychopathology is writer's block. And humanities dissertations tend to be hundreds of pages long. In the sciences, you do an experiment and then you describe it. I've heard of science PhD's where the dissertation was less than 100 pages long.
I have significant empathy for your experience in the humanities, writing 100s of pages. Especially with writer's block! As someone who... erm... wrote a 96 page thesis (and found that a drag), I have no ground to stand on!
As a psychiatrist with a special interest in bipolar disorder--and a co-developer of the Bipolar Spectrum Diagnostic Scale, with Dr. Nassir Ghaemi [1]--I very much appreciate Alex Mendelsohn's frank and informative contributions. Much, much more could be said regarding the benefits of lithium in mood disorders, but I will simply cite one authoritative review that concluded:
"Besides its benefit in bipolar illness, lithium has important underappreciated proven benefits in prevention of unipolar depression and suicide. Emerging data support neurobiological benefits for cognition and possible dementia prevention. Likely benefits also exist in low doses for mood temperaments (cyclothymia and hyperthymia). High doses (over 1.0 mmol/L) should be avoided since they increase side effects, complications associated with long-term use, and risk of toxicity. Conversely, low dosing can be legitimate, especially for suicide and dementia prevention. Nuisance side effects of lithium may affect adherence, and medically serious side-effects can occur. Managing strategies are available for side effects...Lithium is the most effective medication in psychiatry, because it has disease-modifying, not just symptomatic, effects. It is effective not only for bipolar illness but also for prevention of suicide, episodes of unipolar depression, mood temperaments, and possibly dementia. Its many benefits need better appreciation, while lowered dosing can reduce risks." [2]
Having treated scores of seriously ill patients with lithium, over the course of many years, I do not recall a single case of significant lithium toxicity, when levels were carefully monitored and patients given sufficient educational information. Of course, as with medications used in oncology, cardiology, and all medical specialties, careful monitoring and conservative use are the key to a good outcome.
Scary, pseudo-educational claims about lithium and other psychiatric medications by persons with no medical training or clinical experience are simply dangerous and irresponsible. And can anyone imagine a website purporting to provide support and education for, say, oncology patients that marginalized oncologists; emphasized dire side effects of anti-cancer agents; and had no oncologists as consultants or advisors as to what is or is not accurate and unbiased information? (And yes: serious psychiatric illnesses are every bit as life-threatening as cancer).
Ronald W. Pies, MD
Professor Emeritus of Psychiatry
Lecturer on Bioethics & Humanities
SUNY Upstate Medical University;
Clinical Professor Emeritus of Psychiatry
Tufts University School of Medicine
1. Nassir Ghaemi S, Miller CJ, Berv DA, Klugman J, Rosenquist KJ, Pies RW. Sensitivity and specificity of a new bipolar spectrum diagnostic scale. J Affect Disord. 2005 Feb;84(2-3):273-7. doi: 10.1016/S0165-0327(03)00196-4. PMID: 15708426.
2. Barroilhet SA, Ghaemi SN. When and how to use lithium. Acta Psychiatr Scand. 2020 Sep;142(3):161-172. doi: 10.1111/acps.13202. Epub 2020 Jul 7. PMID: 32526812.
Thank you for your detailed comment. I firstly want to say that I look forward to reading your occasional comments on Awais' posts almost as much as the posts themselves! They always carry insight and intrigue, and I am filled with a quiet happiness knowing that you have decided to weigh in on an article I wrote.
Yes, you are right. There is much more to be said on the benefits of lithium. And thank you for adding the additional information to start filling the gap.
There are a couple of reasons I didn't go into more detail on the benefits, if it might interest you. Firstly, I did not feel my knowledge on the widespread benefits was solid enough for me to confidently include it. Simply, I felt I needed to do more reading. If you have some suggestions for articles to read, that would be fantastic.
Another reason is related to how I think patients could be a useful partner in psychiatric communication of lithium. When I was first considering whether to take lithium as a patient, I was sold on the potential benefits very quickly. The reason is due to the reports and research on its widespread benefits. I was in quite dire straits with a lot of symptoms and in a lot of pain. Unlike many psychiatric medications, I thought there was a decent chance it would help somewhere, even if it wasn't on the main painful symptom I was suffering (Even if it was just a softening of some symptoms).
My main concern as a patient was on toxicity. I was in so much pain, the last thing I wanted was additional pain on top of my already painful existence. And while very very rare, even the remote possibility of permanent damage, like cerebellar dysfunction, terrified me. I was already scared that there may not be a treatment that could help me, the last thing I wanted was the knowledge of another condition I definitely knew couldn't be treated. I needed a future to hold on to while I was suffering in the present.
So for this article, I focused specifically on toxicity. I am hoping that the feelings I had as a patient are similar to the feelings of other patients. I hope I have given some patients out there a little bit of context, a little bit of information that would allow patients to ask useful questions to their psychiatrist. In my case, I had find out all this information on my own.
And I have nothing really to add to your final two paragraphs - I think you have articulated the irresponsibility eloquently indeed.
I very much appreciate your comments and kind response, Alex. None of us has all the answers--and sometimes, the best we can do is raise the right questions!
Many thanks, Alex, for your kind comment re: my participation in Dr. Aftab's columns. He has generously provided a safe and civil space for discussion of these important issues.
I do understand why your article focused on toxicity, and, indeed, lithium--for all its benefits--does have a narrow "therapeutic index"; that is, the range of doses at which a medication is effective without unacceptable adverse events. This is also true of many medications used in cardiology (e.g., digoxin) [1] and neurology (e.g, phenytoin) [2] These are reasons why high levels of expertise are required to prescribe and monitor these agents, and why well-meaning but often misinformed websites need to make use of medical expertise and consultation.
As for helpful articles on lithium, the one I cited by Barroilhet and Ghaemi is a good place to begin. I would also recommend the article by Robert M. Post, which notes,
"Contrary to conventional belief, lithium’s side-effect profile at usual therapeutic doses is relatively benign. Moreover, if side effects such as tremor do occur at usual ‘therapeutic’ levels, doses can be reduced to below one’s side-effect threshold, especially as many of lithium’s clinical effects can be seen at lower levels." [3]
Once again, I appreciate your comments, and I fully endorse the view that patients can usefully contribute to optimal medical care, working collaboratively with their physicians.
That is well put Ron, indeed I fully agree. I'm very grateful and lucky to have come across this space that Dr Aftab has created.
On reflection, I missed a pretty important piece of context re: toxicity in my reply, which I would like to clear up and communicate. I didn't mean to go so deep into my story - a researcher's instinct to provide detail is sometimes disadvantageous!
Your original comment helped me to come to what I hope is a valid realisation. The ICI lithium page had, putting it generously, a diverse number of issues. My eye as a patient locked onto toxicity, whereas maybe a psychiatrist might lock onto something else (while in this case you were looking at my article, I could foresee a psychiatrist spotting the lack of mention of benefits of lithium on the ICI site, for instance). I was thinking this might be another potential example where the psychiatrist - patient combination would work really well together.
Thank you very much for the references on the benefits of lithium (and for digoxin and phenytoin refs, which I did not know about, shall make for some interesting reading!)
And thank you for your comments and help. I look forward to reading your comments here and the nuance you add, as well as continuing to read about your insights in your Psychiatric Times articles.
Of course lithium is a poison! So is water... taken in excess, it'll kill you. All meds here are regulated under a poisons authority in Australia, so I'd expect a patient taking lithium to be under the impression they were taking a poison... It's called being honest with patients. Don't regulate the medications as poisons, and then try and pretend to patients that they're not!!! The reality is, as homoeopathy (not that I'm advocating homoeopathy) asserts, it's the dose that matters, not the reality that these drugs do in fact meet the legal definition (in Australia at least) of "poisons". Rather than being appalled that patients might find out the truth (that they are prescribed poisons) - how about educating them that everything, even water, can kill you if you have too much of it, and that most medications are possibly beneficial for people who need them at the appropriate dose and possibly harmful if taken in excess? A bit like sugar...
Personally, I think it's an indictment on the psychiatric system if a random website can influence a patient to cease their meds. If the psychiatrist hasn't built a strong enough therapeutic alliance with the patient, explored the rationale for taking meds, left doors open to explore ceasing meds / alternative treatment strategies... (and I'm inclined to agree best practice psychiatry (which I personally experience) probably hardly ever happens)... then if a patient reads a website like ICI and decides to cease their lithium (hand up, I decided to cease lithium without reading the website!) I suspect it's the routine poor practice of psychiatry that's at fault. From someone who's regularly had fortnightly one hour (and we regularly go over) psychiatry appointments since BPI diagnosis which morphed into mentoring once stable... But I had oodles of opportunities to start and stop meds, endless discussions around them, got lithium toxicity a couple of times (no drama, just ceased the lithium), figured out I needed meds but polyuria and nephrogenic diabetes insipidus is the deal-breaker for me for lithium... (Even mentioned Unshrunk to my psych last appointment - he hadn't heard of it). My point is virtually everyone who will cease lithium based off a visit to this website won't have the kind of care I do. So rather than protest the website, I'd protest the psychiatrists providing routine substandard care. Like what it appears Laura received.
Thank you for reading my article and taking the time to write a comment. All the way from Australia no less! So, greetings from the UK. Which part Australia are you from if you don’t mind me asking? I’ve had the opportunity to visit Sydney and the Blue Mountains. Beautiful city. And I’ve heard from friends a beautiful country in general.
You have picked up on a part of the article that used imprecise language… I said the dose makes both the benefits and the poison (borrowing from a common phrase), when really I should have said the dose makes both the benefits and the toxicity.
Thank you for sharing your experience. This topic must mean a lot to you, and it seems that despite what sounds like a supportive experience with psychiatrists, you are well aware of the many pitfalls in the psychiatric system. Has your awareness been through seeing friends go through it? Or some other personal experiences?
It also sounds like you related to Laura’s book. Would you be comfortable telling me what about it you felt related to you? (bear in mind I have not yet had the chance to read it!)
Y’know, there were periods of time where I would curse the names of my psychiatrists. Where I felt powerless, alone and I felt like none of my psychiatrists cared whether I lived or died. I felt like there was no system, no strategy of what medications were being prescribed. My care was left up to me.
Most of my writing so far, in fact I think all of it, has been focused on trying to improve the psychiatric system (some of them are linked in this article). And this will remain the case for the future.
The reason I am holding Cooper, Laura and ICI to the same account as psychiatrists is because I don’t believe it is any old website. One is because of the publicity it has received, through articles in the New York Times and Washington Post, along with Delano’s book (plus previous high-profile articles and profiles of Laura Delano in the past). Two, in my opinion they have positioned themselves as educators, and if the reporting I have read is correct, Laura charges people for her expertise on discontinuing medication. The ICI is in a position of power, which if it is not held responsibly, could potentially lead to harm.
I want to communicate that despite the current state of the psychiatric system, there are a lot of people trying & working very hard to improve it (including me!). Lived experience advisory committees have provided me a window into how much psychiatric & psychotherapeutic researchers value the patient perspective. As someone who resides in the UK I don’t know of the Patient and Public Involvement organisations in Australia, but I would be more than happy to enquire if it is something you would be interested in? It sounds given your extensive experience within the psychiatric system you would add a lot of value.
I have no reason to argue with you Heather. As a fellow patient, numerous articles have caused me to feel angry to the point of wanting to write something.
I only add this as a public interest info for anyone else out there who has read this far down which is now a very long comment! I define poison as a substance intended for harm. And toxicity as the dose of a substance that can cause harm. Also yes, too much water can kill you. But so can no water. I have written this article specifically for the patients where a treatment out there is helping with their symptoms, and could be persuaded to come off of it unnecessarily due to misleading statements.
Thanks for this thoughtful and well argued statement, Alex. I appreciate the time and energy you’ve put in to this response to my interview with Awais, and I think you raise excellent points, which I intend to engage more fully when I’ve got more time.
For the mean time, just one clarification: We recently merged our websites, which is why you aren’t finding the language on our site previous to January of this year. If you search wayback machine for “https://withdrawal.theinnercompass.org/page/about-withdrawal-project”, you’ll see that we offer clarification about the sources and intention of our included content going back to our launch in 2019.
https://web.archive.org/web/20210815000000*/https://withdrawal.theinnercompass.org/page/about-withdrawal-project
There is so much hard and careful work reflected in this post. Thank you very much.
Thank you very much Kathleen, I was absolutely exhausted by the end of writing it! I wanted to show what a high standard of patient-led psychiatric communication could look like. I hope I have achieved it.
As a person who has survived the rigors of getting a PhD. you certainly have accomplished that. I have been a psych patient myself for decades, with a form of multiple personality disorder, and I one day plan to write my experiences, but I will not undertake the grueling task pf placing them in an academic context.
Thank you very much Kathleen! And I can definitely relate to the survival of rogors of PhD (congrats on surviving btw!). Out of curiosity, what was the bit you found the most, I'm not going to say painful, but dragging - like going on and on with seemingly no end in sight? I think that is a common experience I've noticed amongst peers.
I've found it challenging to communicate what it is like to really dig deep into a subject. So at undergrad I remember thinking "wow, I know so much about physics", then at masters thinking "wow, I now know so much more about x-ray diffraction" (my masters project). And then you get to a PhD where you spend the entire first year just learning, no serious project work at all, and I remember thinking "wow, I know so little".
So I am very happy to bump into someone who understands just how difficult it is to take two already difficult things, researching a subject, and finding words that coherently express one's story, and then putting them together in a way that makes sense.
Thank you for sharing that you've experienced a long time being a psych patient. If you have a story to write, I can imagine there were some very, the only word I can think of, eventful periods. I would love to read your story one day.
By far, the most painful part of my PhD was writing my dissertation. Part of my psychopathology is writer's block. And humanities dissertations tend to be hundreds of pages long. In the sciences, you do an experiment and then you describe it. I've heard of science PhD's where the dissertation was less than 100 pages long.
I have significant empathy for your experience in the humanities, writing 100s of pages. Especially with writer's block! As someone who... erm... wrote a 96 page thesis (and found that a drag), I have no ground to stand on!
As a psychiatrist with a special interest in bipolar disorder--and a co-developer of the Bipolar Spectrum Diagnostic Scale, with Dr. Nassir Ghaemi [1]--I very much appreciate Alex Mendelsohn's frank and informative contributions. Much, much more could be said regarding the benefits of lithium in mood disorders, but I will simply cite one authoritative review that concluded:
"Besides its benefit in bipolar illness, lithium has important underappreciated proven benefits in prevention of unipolar depression and suicide. Emerging data support neurobiological benefits for cognition and possible dementia prevention. Likely benefits also exist in low doses for mood temperaments (cyclothymia and hyperthymia). High doses (over 1.0 mmol/L) should be avoided since they increase side effects, complications associated with long-term use, and risk of toxicity. Conversely, low dosing can be legitimate, especially for suicide and dementia prevention. Nuisance side effects of lithium may affect adherence, and medically serious side-effects can occur. Managing strategies are available for side effects...Lithium is the most effective medication in psychiatry, because it has disease-modifying, not just symptomatic, effects. It is effective not only for bipolar illness but also for prevention of suicide, episodes of unipolar depression, mood temperaments, and possibly dementia. Its many benefits need better appreciation, while lowered dosing can reduce risks." [2]
Having treated scores of seriously ill patients with lithium, over the course of many years, I do not recall a single case of significant lithium toxicity, when levels were carefully monitored and patients given sufficient educational information. Of course, as with medications used in oncology, cardiology, and all medical specialties, careful monitoring and conservative use are the key to a good outcome.
Scary, pseudo-educational claims about lithium and other psychiatric medications by persons with no medical training or clinical experience are simply dangerous and irresponsible. And can anyone imagine a website purporting to provide support and education for, say, oncology patients that marginalized oncologists; emphasized dire side effects of anti-cancer agents; and had no oncologists as consultants or advisors as to what is or is not accurate and unbiased information? (And yes: serious psychiatric illnesses are every bit as life-threatening as cancer).
Ronald W. Pies, MD
Professor Emeritus of Psychiatry
Lecturer on Bioethics & Humanities
SUNY Upstate Medical University;
Clinical Professor Emeritus of Psychiatry
Tufts University School of Medicine
1. Nassir Ghaemi S, Miller CJ, Berv DA, Klugman J, Rosenquist KJ, Pies RW. Sensitivity and specificity of a new bipolar spectrum diagnostic scale. J Affect Disord. 2005 Feb;84(2-3):273-7. doi: 10.1016/S0165-0327(03)00196-4. PMID: 15708426.
2. Barroilhet SA, Ghaemi SN. When and how to use lithium. Acta Psychiatr Scand. 2020 Sep;142(3):161-172. doi: 10.1111/acps.13202. Epub 2020 Jul 7. PMID: 32526812.
Hi Ronald,
Thank you for your detailed comment. I firstly want to say that I look forward to reading your occasional comments on Awais' posts almost as much as the posts themselves! They always carry insight and intrigue, and I am filled with a quiet happiness knowing that you have decided to weigh in on an article I wrote.
Yes, you are right. There is much more to be said on the benefits of lithium. And thank you for adding the additional information to start filling the gap.
There are a couple of reasons I didn't go into more detail on the benefits, if it might interest you. Firstly, I did not feel my knowledge on the widespread benefits was solid enough for me to confidently include it. Simply, I felt I needed to do more reading. If you have some suggestions for articles to read, that would be fantastic.
Another reason is related to how I think patients could be a useful partner in psychiatric communication of lithium. When I was first considering whether to take lithium as a patient, I was sold on the potential benefits very quickly. The reason is due to the reports and research on its widespread benefits. I was in quite dire straits with a lot of symptoms and in a lot of pain. Unlike many psychiatric medications, I thought there was a decent chance it would help somewhere, even if it wasn't on the main painful symptom I was suffering (Even if it was just a softening of some symptoms).
My main concern as a patient was on toxicity. I was in so much pain, the last thing I wanted was additional pain on top of my already painful existence. And while very very rare, even the remote possibility of permanent damage, like cerebellar dysfunction, terrified me. I was already scared that there may not be a treatment that could help me, the last thing I wanted was the knowledge of another condition I definitely knew couldn't be treated. I needed a future to hold on to while I was suffering in the present.
So for this article, I focused specifically on toxicity. I am hoping that the feelings I had as a patient are similar to the feelings of other patients. I hope I have given some patients out there a little bit of context, a little bit of information that would allow patients to ask useful questions to their psychiatrist. In my case, I had find out all this information on my own.
And I have nothing really to add to your final two paragraphs - I think you have articulated the irresponsibility eloquently indeed.
Thanks,
Alex
I very much appreciate your comments and kind response, Alex. None of us has all the answers--and sometimes, the best we can do is raise the right questions!
Best wishes,
Ron
Many thanks, Alex, for your kind comment re: my participation in Dr. Aftab's columns. He has generously provided a safe and civil space for discussion of these important issues.
I do understand why your article focused on toxicity, and, indeed, lithium--for all its benefits--does have a narrow "therapeutic index"; that is, the range of doses at which a medication is effective without unacceptable adverse events. This is also true of many medications used in cardiology (e.g., digoxin) [1] and neurology (e.g, phenytoin) [2] These are reasons why high levels of expertise are required to prescribe and monitor these agents, and why well-meaning but often misinformed websites need to make use of medical expertise and consultation.
As for helpful articles on lithium, the one I cited by Barroilhet and Ghaemi is a good place to begin. I would also recommend the article by Robert M. Post, which notes,
"Contrary to conventional belief, lithium’s side-effect profile at usual therapeutic doses is relatively benign. Moreover, if side effects such as tremor do occur at usual ‘therapeutic’ levels, doses can be reduced to below one’s side-effect threshold, especially as many of lithium’s clinical effects can be seen at lower levels." [3]
Once again, I appreciate your comments, and I fully endorse the view that patients can usefully contribute to optimal medical care, working collaboratively with their physicians.
Best regards,
Ron
1. https://www.ncbi.nlm.nih.gov/books/NBK556025/
2. https://www.ncbi.nlm.nih.gov/books/NBK556025/
3. https://pmc.ncbi.nlm.nih.gov/articles/PMC5854802/
That is well put Ron, indeed I fully agree. I'm very grateful and lucky to have come across this space that Dr Aftab has created.
On reflection, I missed a pretty important piece of context re: toxicity in my reply, which I would like to clear up and communicate. I didn't mean to go so deep into my story - a researcher's instinct to provide detail is sometimes disadvantageous!
Your original comment helped me to come to what I hope is a valid realisation. The ICI lithium page had, putting it generously, a diverse number of issues. My eye as a patient locked onto toxicity, whereas maybe a psychiatrist might lock onto something else (while in this case you were looking at my article, I could foresee a psychiatrist spotting the lack of mention of benefits of lithium on the ICI site, for instance). I was thinking this might be another potential example where the psychiatrist - patient combination would work really well together.
Thank you very much for the references on the benefits of lithium (and for digoxin and phenytoin refs, which I did not know about, shall make for some interesting reading!)
And thank you for your comments and help. I look forward to reading your comments here and the nuance you add, as well as continuing to read about your insights in your Psychiatric Times articles.
All my best,
Alex
Of course lithium is a poison! So is water... taken in excess, it'll kill you. All meds here are regulated under a poisons authority in Australia, so I'd expect a patient taking lithium to be under the impression they were taking a poison... It's called being honest with patients. Don't regulate the medications as poisons, and then try and pretend to patients that they're not!!! The reality is, as homoeopathy (not that I'm advocating homoeopathy) asserts, it's the dose that matters, not the reality that these drugs do in fact meet the legal definition (in Australia at least) of "poisons". Rather than being appalled that patients might find out the truth (that they are prescribed poisons) - how about educating them that everything, even water, can kill you if you have too much of it, and that most medications are possibly beneficial for people who need them at the appropriate dose and possibly harmful if taken in excess? A bit like sugar...
Personally, I think it's an indictment on the psychiatric system if a random website can influence a patient to cease their meds. If the psychiatrist hasn't built a strong enough therapeutic alliance with the patient, explored the rationale for taking meds, left doors open to explore ceasing meds / alternative treatment strategies... (and I'm inclined to agree best practice psychiatry (which I personally experience) probably hardly ever happens)... then if a patient reads a website like ICI and decides to cease their lithium (hand up, I decided to cease lithium without reading the website!) I suspect it's the routine poor practice of psychiatry that's at fault. From someone who's regularly had fortnightly one hour (and we regularly go over) psychiatry appointments since BPI diagnosis which morphed into mentoring once stable... But I had oodles of opportunities to start and stop meds, endless discussions around them, got lithium toxicity a couple of times (no drama, just ceased the lithium), figured out I needed meds but polyuria and nephrogenic diabetes insipidus is the deal-breaker for me for lithium... (Even mentioned Unshrunk to my psych last appointment - he hadn't heard of it). My point is virtually everyone who will cease lithium based off a visit to this website won't have the kind of care I do. So rather than protest the website, I'd protest the psychiatrists providing routine substandard care. Like what it appears Laura received.
Hi Heather,
Thank you for reading my article and taking the time to write a comment. All the way from Australia no less! So, greetings from the UK. Which part Australia are you from if you don’t mind me asking? I’ve had the opportunity to visit Sydney and the Blue Mountains. Beautiful city. And I’ve heard from friends a beautiful country in general.
You have picked up on a part of the article that used imprecise language… I said the dose makes both the benefits and the poison (borrowing from a common phrase), when really I should have said the dose makes both the benefits and the toxicity.
Thank you for sharing your experience. This topic must mean a lot to you, and it seems that despite what sounds like a supportive experience with psychiatrists, you are well aware of the many pitfalls in the psychiatric system. Has your awareness been through seeing friends go through it? Or some other personal experiences?
It also sounds like you related to Laura’s book. Would you be comfortable telling me what about it you felt related to you? (bear in mind I have not yet had the chance to read it!)
Y’know, there were periods of time where I would curse the names of my psychiatrists. Where I felt powerless, alone and I felt like none of my psychiatrists cared whether I lived or died. I felt like there was no system, no strategy of what medications were being prescribed. My care was left up to me.
Most of my writing so far, in fact I think all of it, has been focused on trying to improve the psychiatric system (some of them are linked in this article). And this will remain the case for the future.
The reason I am holding Cooper, Laura and ICI to the same account as psychiatrists is because I don’t believe it is any old website. One is because of the publicity it has received, through articles in the New York Times and Washington Post, along with Delano’s book (plus previous high-profile articles and profiles of Laura Delano in the past). Two, in my opinion they have positioned themselves as educators, and if the reporting I have read is correct, Laura charges people for her expertise on discontinuing medication. The ICI is in a position of power, which if it is not held responsibly, could potentially lead to harm.
I want to communicate that despite the current state of the psychiatric system, there are a lot of people trying & working very hard to improve it (including me!). Lived experience advisory committees have provided me a window into how much psychiatric & psychotherapeutic researchers value the patient perspective. As someone who resides in the UK I don’t know of the Patient and Public Involvement organisations in Australia, but I would be more than happy to enquire if it is something you would be interested in? It sounds given your extensive experience within the psychiatric system you would add a lot of value.
I have no reason to argue with you Heather. As a fellow patient, numerous articles have caused me to feel angry to the point of wanting to write something.
I only add this as a public interest info for anyone else out there who has read this far down which is now a very long comment! I define poison as a substance intended for harm. And toxicity as the dose of a substance that can cause harm. Also yes, too much water can kill you. But so can no water. I have written this article specifically for the patients where a treatment out there is helping with their symptoms, and could be persuaded to come off of it unnecessarily due to misleading statements.
Thanks,
Alex