Showing 82 of 82 comments.
Thank you so much for listening : )
Thank you for listening Susan, this felt cathartic to do. Not many psychiatrists are sharing the song on social media though, what a shame! : )
Hi Sam, That sounds like a lot of fun, I’ll start planning my tour of psychiatric conferences! Just imagine their faces listening to this. Thanks for listening.
Hi Someone Else, thank you so much for listening to this.
Hi Rosalee, thank you so much for listening, speaking personally I found much to be optimistic about in this interview and I do believe that we can move towards treating everyone with compassion, empathy and respect whether that’s in everyday life or when someone is struggling.
Thank you for reading Dan, I am so very sorry to hear that things are so tough for you at present. From my perspective you have managed to achieve so much in coming off the drugs after so long. People who haven’t been through it struggle to grasp how fundamentally the drugs inhabit your life and how much change needs to happen to come off them. I think you have done incredibly well. I have heard of people who were decades using the drugs and who had awful times coming off or in the period afterwards, but there are many incredible success stories out there and I believe that the brain and nervous system are capable of healing, but it can take a frustratingly long time. My best wishes to you and I look forward to reading your success story one day, when you are ready to write it.
Thank you Rosalee, I am incredibly grateful to have found MIA. Before I did I felt utterly alone and believed that I was totally broken and in need of ‘fixing’ and I never would have found that inner strength to challenge the falsehoods that were keeping me quiet and compliant. Thank you for your kind words, and you are right, I should celebrate how far I have come, even if I still have quite a challenge ahead.
Thank you for your kind words Pauline. I am shocked and saddened reading the stories of how people are got on these drugs and then simply cut adrift or given further diagnoses and more drugs when they report anything but a ‘life saving experience’. I am so glad that there are people speaking out. The review of NICE guidelines is welcome, but time will tell how much the messages of potential for harm will be softened in the process.
Thanks for taking the time to read and for your wishes too Ann. There are so many struggling that benefit from being part of communities like MIA which provide support, advice and understanding that the medical world couldn’t match, even if it wanted to.
Hi mmarti2007 thank you for sharing, I am so very sorry to hear of your experiences. You mention that you feel you are failing, but from the short note above, I’d say it sounds like you are doing a magnificent job in very difficult circumstances. My best wishes to you.
Thanks so much for reading.
Thank you for reading littleturtle, I know there is nothing particularly unique about my story, but I feel that the important thing is that we share our stories with each each other and with the world was much as we can. As for looking up to me, I’m not that tall : )
Hi Richard, thanks so much for taking the time to read this. I know I’m not alone in experiencing withdrawal effects and that helps hugely. I’m also fortunate to understand some of what is happening to me, many don’t and end up of course with a doctor/psychiatrist just misdiagnosing relapse and prescribing even more drugs and compounding the problem.
Thanks Fiachra, hopefully we can get more public discussion going on this in 2019.
Thank you kindredspirit, have now corrected this.
Hi TRM123, thank you so much for listening and for your feedback too.
Thanks Auntie, at this rate we’ll soon have more episodes than Breaking Bad!
Thanks for listening Eric, I am so grateful for your support.
Hi Richard, thank you for your careful and thoughtful consideration of the issues we are wrestling with. I am very sorry to hear that our first change is problematic for you. I can see that this could appear to be counter to our aim of engaging more people in commenting, but what we aim to do with all of our changes here is enable more choice for the reader/commenter. The choice to read comments or not, the choice to interact more, the choice to be part of the discussion even if not writing themselves for example. Many parts of MIA require making that choice; clicking an external link, listening to a podcast or watching a video, so we feel that this change brings commenting in line with other parts of MIA.
I also want reassure you that all of us behind the scenes are trying to thoughtfully consider how best to balance the many views and strong feelings about how commenting works on MIA. Your feedback on this, as with all the feedback so far, is not falling on deaf ears. We want to make a change, step back for a week or two and then assess the impact on commenting; is there less/more activity for example. I know many commenters would like things to stay just as they were, but we did ask for reader feedback and we are aware that we had equally strong messages from people who will no longer visit MIA if we continue as we had been. This is not to value any group or individual above anyone else, but finding a balance here is a big challenge for us.
If nothing else, the survey and Steve McCrea’s excellent blog have resulted in a very valuable discussion and I am sure that many of us are thinking about commenting and what could be done better both on MIA and how we, as individuals, approach commenting.
I just beg that you are patient with us while we try these changes and review what we find. What we wish to do could well be the wrong direction, but we would like to try and see what happens, that is our intention. We know we won’t please everyone, that is not possible with such a large, active and diverse community. The reader survey told us that there was dissatisfaction, it seems wrong to ask people to tell us about their experiences of commenting if all along we planned to do nothing about it. That goes equally for all the comments made on this blog and Steve’s too.
I really do appreciate your feedback Richard and I have heard and taken in every message that has been left on this subject. The decisions are made by a collective, not just me, so we want to make a change, observe for a while and then review. I hope that explains what we are doing, even if it doesn’t directly address your specific concerns on the ability to hide or show comments.
Julie Greene, among the sites we considered was The New York Times, who made changes to their commenting which are far wider in scope than those we would like to make. All NYT comments, for example, are pre moderated. On top of this, not only readers can like, the NYT moderators can also select comments as picks. The NYT report that their community engagement improved as a result of the changes they made which, in comparison to ours, are draconian. So I disagree that liking comments damages community cohesion to the level that you believe it will. You seem to be quite happy for those that told us what an objectionable place they found the commenting being marginalised. That, to me, is what is not fair about all this.
Hi Stephen, thanks for taking the time to comment. I’m pleased to hear that you and many others don’t have issues joining the discussion, but surely that doesn’t mean we should discount the views of those who told us that their experience was very different. As for “new and better MIA” we are talking specifically about small changes intended to improve inclusivity and put more choice in the hands of commenters. MIA has changed, improved and grown over the years and is quite different now to when it was founded. To stand still is to stagnate in this age where information is available on demand, 24 hours a day at the click of a mouse. I’m very sorry that these proposed changes don’t feel right to you, time will tell if this survey was of value, or a complete waste of all our time.
Hi jspsych, thanks for your comment. I wanted to assure you that we are not ignoring the issue you raise. The difficulty here is that MIA has always been a space for both scientific discussion/exploration and personal experience, reflection, survivor voices, activism, call it what you will. I personally feel that MIA is made much stronger by this combination of views and experiences but I wondered if you had any suggestions as to how we might, as a community, address the issue you raise? Thanks.
kindredspirit I am really struggling to understand how anything in this blog could be construed as ‘making it more difficult for the louder voices to be heard’. The aim of commenting changes and reviewing our moderation approach is to add more voices, not silence anyone. As for the technical changes to commenting, it is simply to allow users to choose how comments are presented to them, there is no ulterior motive. In my opinion, the proposed changes won’t silence anyone nor will they preclude anyone from writing what they wish. Perhaps the reality is that the marginalized group are the ones that don’t feel they can currently join in for whatever reason.
Thanks for your observations on the survey. I can assure you that were no wild assumptions made or conclusions leapt to. We took time to carefully consider the responses and what may have been driving the feedback we collected. Much of what prompted our action, as you noted, was contained within the written feedback rather than us merely relying on tick box selection. We asked questions of our readers experiences and the responses we got often were not comfortable for us to read.
We won’t be providing examples of that feedback here, because we ran the survey anonymously and it may be possible to identify who left a particular comment, especially for those of you who are familiar with each others writing style. Suffice to say, there was enough concern expressed for us to want to take action and the overwhelming majority expressed the view that commenting was problematic. The survey had its limitations, many of these approaches are crude instruments, but we believe it was necessary to check how a cross-section of readers feel about MIA. I think we can all benefit from some self-reflection from time to time.
Hi ConcernedCarer thank you so much for reading this blog and for your comments. You use the word ‘journey’ which I think is so apt here, we are on different journeys, we often don’t travel together or in the same way or at the same speed and it is that spirit of accepting and welcoming diverse views and experiences that we want to foster. I hope that the changes we make will lead to a more open and inviting space for reader comment. Thanks for your feedback.
Thanks for your observations on the blog and the changes we would like to implement. The feedback we had from the survey was that people were feeling discouraged from commenting. I certainly wouldn’t presume to suggest what knowledge our community does or doesn’t have, but I would rather as many contribute to the discussions as possible. This revised commenting approach works well on other community sites, so we feel that it is time to make some changes to encourage more participation. I don’t agree that this will narrow the conversation, I believe it will broaden it, involve more voices and be more diverse and inclusive as a result. As for this being a disaster for MIA, I guess time will tell.
Hi Red Squirrel
Thank you so much for taking the time to share your thoughts on this blog and on content writers. I agree with you that survivor voices are crucial and want to reassure you that we are not changing our approach on this point. While it is true that roughly half of those who commented wanted to read more professional blogs, an equal number, based on this sample anyway, want more survivor stories and personal accounts and less professional blogs. I also want to stress that nowhere in the feedback did I read “we want you to stop publishing personal stories”. Survivor stories and personal accounts are a unique, compelling and powerful part of MIA and we want to keep it that way.
Hi The_cat, thanks for this, we hope to be able to offer the reader the chance to sort comments or not to sort them, so each person can choose as they wish. It depends on what we find in our testing but it may be possible to set a default sorting, which would be in date order as it is now.
Thank you knowledgeispower, you have encapsulated very nicely much of what we are aiming to achieve by seeking reader feedback and using it to try and improve what we do.
Hi Alex, thanks for taking the time to comment. The feedback from the survey was balanced in this regard, so, as is written in the blog, “We take this as a sign that we are holding to our vision as a space for a range of views, experiences and perspectives to come together to enable discussion and debate. We intend to continue to cover a wide range of issues written by a diverse collection of writers.”
Hi kindredspirit, thanks for your comment. As noted in the blog, our aim is to encourage as many as possible to comment and discuss. After having looked at several online communities, it became clear that allowing readers to actively participate is a good way to encourage more commenters and to enliven discussions. Our intention is not to silence dissent, but encourage wider participation.
Thank you SP and I am grateful to you for listening.
Dear littleturtle, thank you, as always for listening and for your kind words, I am so very fortunate to get to chat with pioneers like Julia and very glad we can discuss these issues free from censorship. Thanks again, your feedback means a great deal to me.
Dear littleturtle, thank you so much for listening and for your feedback too, I am fortunate to be able to do what I do and that Mad in America provides a place for us to hear the messages that we just don’t get in the mainstream. I am so grateful to you for listening and taking the time to comment.
Thanks for listening drt, and for your feedback, it was an honour putting this together and supporting W-BAD. So very sorry to hear of your experiences coming off Ativan and Klonopin, wishing you the best and hoping that the further out you get, the easier things will be for you.
Thanks so much for listening, Eric.
Thank you so much for listening Eric.
Thank you for listening, as you say, it is great to hear that the NHS, cash-strapped as it is, is still willing to trial and understand new approaches.
Thanks for listening Fiachra.
Thanks, all of you for taking the time to read and to comment. Campaigning on this, as you can imagine, I get many messages that are deeply troubling and show the impact of this on lives, on families, on careers. This isn’t a problem restricted to drugs for depression, of course, it is common to all classes of psychiatric drug. Unfortunately, ‘antidepressants’ are the visible tip of the iceberg. In the UK, they are the poster child, vaunted as the psychiatric success story in the media. UK Prescribing figures have just been released by our National Health Service, in 2017, we prescribed 67.5 million antidepressants, costing our health services £255 million. That is for a population of 53 million people. In 2007, the figure was 33 million, we have more than doubled prescriptions in a decade and the media response recently has just fuelled that shocking rise. I am so glad that more people are coming forward to tell their stories and share the reality of this and grateful to you all and Mad in America for shouting from the rooftops.
Immediately after this brief interview, Simon Wessely tweeted this:
Oh dear. Time for another round of #pillshaming. #r4today @BBCRadio4 . Antidepressants are not addictive. There is no tolerance, escalation etc etc.
For anyone that is interested, Professor John Read was on BBC Radio 4 on Saturday morning, faced by the wife of Sir Simon Wessely, General Practitioner Clare Gerada. You can listen here:
Thanks for listening littleturtle.
Eric thank you so much for listening and for your feedback too, the podcast would be nothing without people engaging with it, I am very grateful.
Proud Brummie myself!
Hi Auntie, thank you, I’m now looking at my iPad embedded in the wall! Most people…some people…utter bilge, as you say, the commenters don’t hold back. This deserves a parody, “some people find their psychiatrist knows diddly squat about withdrawal, while most people find more sense on Facebook”.
Hi Auntie Psychiatry, thank you, I just wanted to reassure everyone that this is a story we will be following very closely and people will get to comment as the situation develops. Meanwhile, I would love to know what a cartoon anteater makes of all this! Thanks.
Hi Auntie Psychiatry, thank you thank you, as soon as you said “Science Media Centre” everything kinda clicked into place, while it’s still reprehensible reporting, at least I can still trust my (considerable) gut! Your cartoon on the SMC had me howling, your work is peerless, thank you.
Joanna, thank you so much for this elegant and reasoned critique of what have been here in the UK, frankly alarming levels of sensationalism around this study. I stress that this is purely my personal view, but it feels like this study is being used as a weapon, rather than evidence-based science, designed to firmly establish the superiority of antidepressant treatment and to disempower and undermine the critics. The line about “ending the debate about antidepressant efficacy” was repeated in many major UK newspapers with only slight variation in wording. It was clear from the breadth of the coverage, that the announcement of this study via the media was planned with military precision and was partly in response to the wide coverage of Johann Hari’s book Lost Connections (this was even mentioned specifically by psychiatrists tweeting about the study). Of course, when you dig into the detail as Joanna has done, it is clear that the results of the study are not strong enough to justify such a statement. Joanna and many of her colleagues have put great effort into countering the sensational claims, for which I am truly grateful. I couldn’t see the study listed above, apologies if it is already there, but here is a link to the full open access paper should anyone be interested:
Thank you so much for listening littleturtle, the book is definitely worth your time, well researched and engaging too.
Personally, I learned a great deal from reading the book and interviewing Johaan.
The main document will be up Monday at bps.org.uk/PTM-Main
Hi (), the overview has now been released and can be found here: https://www1.bps.org.uk/system/files/user-files/Division%20of%20Clinical%20Psychology/public/INF299%20PTM%20overview%20web.pdf
Hi littleturtle, thank you so much for listening and for your feedback too. I was so pleased to be able to talk to Dr Hunter for the podcast, thank you for taking the time to listen in.
Thank you so much for listening susanne and for your feedback too.
Thank you so much for listening Eric, I feel like I have found my calling with the podcasts, it’s just a shame it’s around thirty years too late! Best wishes. James.
Hi survivingthesystem, that is a powerful article, thank you so much for sharing.
Thank you so much for your feedback Leonie. It was a shock to hear how quickly the drugs can cause numbing, pain and all the other issues too. You are right that if people really were given the facts about the risk of permanent damage to their sexuality, they would be seeking very different options for help with their mental health. I appreciate you taking the time to listen and to feedback too. Best wishes. James
Thank you so much for listening TRM123 and for your feedback too. PSSD is a rarely discussed, but profoundly debilitating problem, I’m very grateful to Dr. Healy for his efforts to make a difference for those that struggle. Best wishes to you. James.
Hi, thanks for the feedback, my apologies, the forum topic for this podcast is now available here: https://www.madinamerica.com/forums/topic/mia-podcast-episode-16-bonnie-burstow-and-nick-walker/
Thank so much for listening Eric and for your feedback too, it is very much appreciated.
Hi Fiachra, thanks so much for listening. I’m very glad to hear that you put the drugs behind you. In the UK, all of the MHRAs funding comes directly from the Pharmaceutical industry. In the US, I believe that more than 75% of the FDA budget is Pharma funded. Also, as Bobby reminds us, many senior positions in both organisations are filled by ex Pharma executives. It’s difficult to see how these regulatory bodies are not unduly influenced by the pharmaceuticals. It’s also very difficult to see how they can represent patient interests. In many cases it has taken repeated Freedom of Information requests to get at the data that they use to approve the drugs, including the unpublished trial results.
Hi Chris, thanks so much for taking the time to comment and to listen to the podcast too. The most helpful and considered advice I have ever recieved about my own psychiatric medications came from Pharmacists rather than doctors or psychiatrists. I think Pharmacists are a very valuable source of information and knowledge on the medications and could be given more of a role in helping patients avoid withdrawal difficulties. I’d be very interested in any feedback on the other interviews. Best wishes. James.
Thanks for posting this Bernalyn. This study is interesting but concerning too. The effects of stopping an antipsychotic or antidepressant in some people can manifest weeks or months after cessation of the drug and can be very different to the immediate withdrawal effects. If this study did only follow participants for a short time then the picture is incomplete. What we need are longer term studies that compare the outcomes of patients that have withdrawn and stayed off the drugs for a significant period. As you point out, hopefully the RADAR study will help the evidence base for withdrawal.
Hi David, thank you so much for your kind offer, I will certainly be in touch to set something up. Best wishes. James
Hi Frank, thank you so much for taking the time to comment, I can confirm that we will be featuring a wide range of views and I am always happy to hear what listeners would like to be featured on the podcast too. This podcast should be a community led initiative. I hope you listen in and give us feedback too if you think there are areas to improve. Thanks. James
Hi Diana, thank you so much for your lovely feedback and observations too, you have made some excellent suggestions which I will be most happy to follow up on. I promise I will try to be less formal in future episodes! Take care.
Thanks so much TRM 123, it’s amazing how powerful it is to hear the raw emotion of these experiences and I very much hope that the podcast will add to the vital work undertaken by this community.
Hi madmom, thank you for the great suggestion of looking into content from Mind Freedom International, it sounds like an excellent resource. Best wishes.
Hi TRM123, I’m very grateful for your feedback and I also hope that the podcast will add to the excellent, mind expanding dialog and discussions that happen within this community. I agree that there is potential for the podcasts to be used as an educational tool, thank you for the suggestion. I’m looking forward to sharing the first episodes with you all.
Hi erin321, thanks so much for your feedback, I’m very excited to share the podcast with you all and I hope it makes a small contribution to the excellent work of this community.
Hi kindredspirit, thanks for your interest in the podcast, you are right, wide exposure for these podcasts is very important to us. The short answer is yes to both, they will be available to listen on madinamerica.com and also available to subscribe to on both Apple iTunes and Android too. There will be links on the pages for each podcast that will hopefully make it easy for us all to decide how best to listen in. Thanks. James
Thanks so much for your feedback Someone Else, I am so sorry to hear of your experiences. So many doctors are not at all up to speed on these issues, you think that given the amount of these drugs that we are prescribing that they would be inundated with people seeking support. It’s difficult not to be cynical about this given the harm that is being caused based on myths and downright fabrications about the origins of mental illness. I hope the podcast at least helps to raise some awareness so that people who have yet to come into contact with psychiatric medications can make that informed choice that we were denied. Best wishes to you too and thanks so much for listening.
Thanks so much for your feedback Dr. Purssey, Rob Whitaker was very generous with his time, very gracious in responding to my questions and it was an amazing experience to be able to interview him. I’m very pleased to hear that you found the interview engaging.
Hi Erin, thank you so much for your support and your encouragement, it means a great deal. That’s what I find amazing is that so many people are willing to help and support others and provide the help that we just don’t get from the medical profession. Prescribing is easy, but where’s the long term support, we are very much left to fend for ourselves aren’t we. I’m so pleased to hear that your husband is past the drugs now, that’s an amazing achievement. I am certainly gaining a great deal of strength from the podcast and from the support of people such as yourself, thank you so much. best wishes. J
Thanks so much Jill, I’ll be in touch, best wishes, James.
Thanks so much for your comments Jill, I will definitely read up and I am keen on the podcast that we get time to talk about alternative approaches that may help people in withdrawal or after they have stopped their psychiatric drugs. Perhaps we could chat for the podcast one day? Best wishes. James
Thanks so much Marion.
Hi andy013 thanks so much for writing. I really am struggling to work out whether doctors actually know about this and just don’t want to admit the problems or whether their patients are not telling them. With my own doctor my experience of withdrawal was written off as “a return of my depression and anxiety” even though it was very different. There is also a worrying trend in the UK to label these kind of problems as merely psychological in origin. While there is clearly a psychological component, there is most definitely a physical impact too and one that can be severe and protracted. I am hopeful that the podcast can play a small part in raising awareness of these issues and I very much value your input. Thank you.
Hi there FeelinDiscouraged, thank you for taking the time to write, I’m so sorry to hear that you feel stranded, I can completely sympathise and, everyone is allowed a bit of a rant now and again!. I do hope you can listen in to some of the podcasts, while it’s not the same as having someone there with you, I find it a source of comfort at times. Best wishes. James
Hi TRM 123, thank you so much for your feedback and for your support with the podcast. To hear that it speaks to medical professionals as well as those with experience of taking these drugs is very important to me. As you say, the gulf in knowledge is truly worrying, especially given that these drugs are so widely available and now routinely prescribed ‘off label’ for insomnia, headaches, chronic pain and even now bed wetting in the very young. If these drugs were mostly benign then it would be less worrying but adding together the adverse effects (which, as you say, can be life changing or even fatal) the dependence/withdrawal issues and the evidence coming to light of poorer long term outcomes and it becomes crucial that we educate and raise awareness in the hope that people can make an informed choice about treatment. Thank you so much for taking the time to share your thoughts, we need many more open minded Physicians like you.