SurvivingAntidepressants.org mentions and honors

[Altostrata]

From Dr. David Healy's blog

 

Quote

 

The Horrific Effects of Not Being Believed

April, 18, 2018

 

....

The New York Times recently ran an article on Antidepressant Dependence and Withdrawal. This was dissed by British College of Psychiatrist figures from Wendy Burn to Simon Wessely.

 

It was surprising the NYT ran this article given they – like the guardian – have become active promoters of statins and vaccines but they did.

 

It was jaw-dropping to find Psychiatric Times, a periodical that offers a voice to American Psychiatric Association members, offer just as punchy an article as the NYT or even more so.  Psychiatric Times acknowledged that we don’t know what is going on and that psychiatry needs to wake up fast or its congregation are going to stop believing in it and turn to other sources like Surviving Antidepressants.

....

 

 

[manymoretodays]

Magnificent.  Awesome.  Wooohoo!!!!!!  We matter!  Not that I ever thought we didn't.......

 

 

[Altostrata]

SurvivingAntidepressants.org has played a role in development of Cinderella Therapeutics tapering strips.

 

Dr. Peter C. Groot has spearheaded this development. I have been corresponding with him for years.

 

14 minutes ago, Altostrata said:

....

Dr. Groot also told me:

 

I am aware of the discussions on [SurvivingAntidepressants]. In fact, one of the comments on your website has been extremely helpful for us and has changed my way of thinking. After we presented the first tapering strip I got the comment that what I was doing was great but that tapering paroxetine from a dose of 20 mg in 1 month was way too fast. After my initial disappointment about this comment (I had been working so hard to work out this scheme) I realized that the schedule we proposed could work for some patients (as it turns out probably only for a very small minority), but not for others. As a result, I started thinking about a more flexible solution, beginning with the addition of a very limited number of extra strips, and finally resulting in the very flexible system that is now in place.

 

 

See our discussions here

 

Groot, 2018 Antidepressant tapering strips to help people come off medication more safely

 

Netherlands organization is producing tapering kits

 

Petition calling for tapering kits in the UK

 

Daily Mail: Tens of millions of Americans are struggling to get off antidepressants - and going to extreme lengths to quit

[Rabe]

WOW!  How wonderful!  Thank you..I emailed Dr. Groot while back before I found SA and asked if there were tapering strips for Viibryd...he got back to me so promptly and was so kind...no strips but I was very impressed!  

[Altostrata]

SurvivingAntidepressants.org Introductions topics were the basis for this May 2018 paper in the The International Journal of Risk and Safety in Medicine:

 

Stockmann, 2018 SSRI and SNRI withdrawal symptoms reported on an internet forum.

 

 

[SkyBlue]

On 6/27/2018 at 2:13 PM, Altostrata said:

SurvivingAntidepressants.org Introductions topics were the basis for this May 2018 paper in the The International Journal of Risk and Safety in Medicine:

 

Wow!!!! 

[mammaP]

🎉🎉🎉🎉

[Altostrata]

SurvivingAntidpepressants.org appears on CEPUK's Support page http://cepuk.org/support/

 

CEP co-founder Luke Montagu mentions us here http://cepuk.org/2016/03/07/cep-co-founder-luke-montagu-gives-talk-bma-meeting-prescribed-drug-dependence/

 

British Association for Counselling and Therapy site, with a kind remark from Jame Moore https://www.bacp.co.uk/bacp-journals/therapy-today/2017/september-2017/what-the-doctor-ordered/

 

Welldoing.org for therapists https://welldoing.org/article/what-you-need-to-know-about-coming-off-antidepressants

 

On MadinAmerica https://www.madinamerica.com/2017/07/surviving-antidepressants-2/

 

Wikihow (with a familiar method) https://www.wikihow.com/Get-off-Paxil ("read 107,358 times")

 

Laura Delano's The Withdrawal Project https://withdrawal.theinnercompass.org/page/about-withdrawal-project

 

Asylum magazine http://asylummagazine.org/resources/alternative-sources-of-support/

 

World Benzodiazepine Awareness Day site http://w-bad.org/tapersupport/

 

On site of Ann Arbor, MI psychotherapist Rebecca Hatton http://drrebeccahatton.com/links.html

 

British Medical Journal comment by Marion Brown https://www.bmj.com/content/356/bmj.j268/rr-1

 

plus in countless comments (some by me) on blogs, forum sites, and social media sites such as Reddit and Quora.

                                                                                                                                                    

[Altostrata]

October 6, 2018 blog post by Christopher Lane on Psychology Today online

 

 

Quote

Given the scale and gravity of these results, patients concerned about the drugs’ adverse effects are strongly advised NOT to terminate treatment abruptly, but instead to taper carefully and gradually by microdoses over a course of several months, always in consultation with their doctor, to ensure their own safety. Peer-reviewed, specialist information on discontinuation issues is available on the website Surviving Antidepressants, with a forum devoted to “Tapering.” Much of the bibliography on withdrawal is also detailed here, in this 2011 post on Side Effects.

 

[Frogie]

Congratulations Alto! It is well deserved 😊

 

Take care,

Frogie xx

[Glosmom]

Most definitely...Congratulations!...  and thank you for your work.

[Altostrata]

In an e-mail, Dr. Lane urged me to continue maintaining the withdrawal information on this site, he perceives it as so badly needed.

[papaloapan]

Thank you so much to the administrators: Altostrata and Jemima.

 

Thank you so much to all the moderators: mammaP, bubble, JanCarol, SkyBlue, scallywag, ChessieCat, Gridley, manymoretodays, brassmonkey, Rhiannon, Shep, Karma, apace41, baroquep, Carmie, dalsaan, Dan998, elbee, Petunia, Skeeter, Songbird and ten0275. 

 

Thank you so much to members that posted on my intro & topic: Dwell, Plshelp, AliG, ZombieMode, Madeleine, peng, Happy2Heal, Zharul, ktp and kokoro1974.

 

All of you literally saved my life. Thanks to all of you, I am recovering and I know how to. Psychiatrists didn't know how to get me off the meds.

The work you have done is priceless, and more because of doing it for free. In the future when I'll be able to work and have a job again and when I save enough money, I will donate some to SA. You've saved many lives like mine. You all deserve the best. 

 

 

[powerback]

On ‎10‎/‎27‎/‎2018 at 12:29 AM, Altostrata said:

In an e-mail, Dr. Lane urged me to continue maintaining the withdrawal information on this site, he perceives it as so badly needed.

Maybe DR lane can get together much more like minded DRs  and make sure much more patients and DRs  are aware .plus this site will always be accessible to others .

the DSM and FDA scare the living day lights out of me beyond belief ,I could just imagine what could happen if it got on there radar .its a justifiable fear.safety in numbers is key ,not this many people can be wrong .

Its not about blame ,its about validating peoples reality .

God bless you Alto 🙏.

[Altostrata]

Dr. Lane published a book debunking "social anxiety" and treatment with Paxil.

[ChessieCat]

Is this it?

 

https://www.amazon.com.au/Shyness-Normal-Behavior-Became-Sickness-ebook/dp/B001VEJ7VW

 

"In the 1970s, a small group of leading psychiatrists met behind closed doors and literally rewrote the book on their profession. Revising and greatly expanding the Diagnostic and Statistical Manual of Mental Disorders (DSM for short), they turned what had been a thin, spiral-bound handbook into a hefty tome. Almost overnight the number of diagnoses exploded. The result was a windfall for the pharmaceutical industry and a massive conflict of interest for psychiatry at large. This spellbinding book is the first behind-the-scenes account of what really happened and why.
 
With unprecedented access to the American Psychiatric Association archives and previously classified memos from drug company executives, Christopher Lane unearths the disturbing truth: with little scientific justification and sometimes hilariously improbable rationales, hundreds of conditions--among them shyness--are now defined as psychiatric disorders and considered treatable with drugs. Lane shows how long-standing disagreements within the profession set the stage for these changes, and he assesses who has gained and what's been lost in the process of medicalizing emotions. With dry wit, he demolishes the façade of objective research behind which the revolution in psychiatry has hidden. He finds a profession riddled with backbiting and jockeying, and even more troubling, a profession increasingly beholden to its corporate sponsors."

[JackieDecides]

On 10/26/2018 at 4:29 PM, Altostrata said:

In an e-mail, Dr. Lane urged me to continue maintaining the withdrawal information on this site, he perceives it as so badly needed.

 

it really is, you are doing really necessary work and we appreciate it. ❤️

[Altostrata]

Quote

 

In recovery — from antidepressants. How patients are helping each other withdraw.

 

Beth Greenfield

Senior Editor

Yahoo Lifestyle January 3, 2019

....

“I remember a few days after I started [Lexapro], I felt hyped up, but not in a good way,” [Sheila Wojciechowski] says, “and my doctor was like, ‘Just increase it. Take double,’” which she did. And it seemed to help. “I was like, ‘I’m just someone who needs medication to help me function.’”

 

But that idea plagued her, so she tried going off the drug a year later, following her doctor’s advice to “just cut it in half for two weeks” and be done. That caused what she describes as “weird brain zaps” and increased anxiety, so she went back on — until it seemed to stop working altogether. She returned to her psychiatrist, who told her, “Your life seems fine. You don’t have any reason to be depressed, so you must be bipolar.” For that new mood-disorder diagnosis (which she believes now was incorrect), he opted to put her on Abilify — an antipsychotic that’s used so often and for so many disorders, including depression, that it was America’s top-selling drug of 2014.

 

It proved disastrous — leaving Wojciechowski “flat” and “numb” and causing crazy mood swings and swift weight gain — so the doctor added the antidepressant Wellbutrin to the mix, at her request, as well as the anti-anxiety pill Klonopin. A 14-year long push-pull with her meds ensued, and a growing, ever-present desire: to be drug-free — putting a stop, hopefully, to side effects, and allowing her to get to know herself again.

 

“I had this gut feeling,” she says about needing to get off her drugs. “And then I was desperate.”

 

So she turned to the internet, where she found a whole world of people in her shoes.

*****

Wojciechowski is, according to federal data, just one of the 37 million Americans (13 percent of the population) taking antidepressants — drugs widely hailed by psychiatric practitioners and by the millions of patients who have used them and found relief.  

 

She’s also one of 18 million people (7 percent of the population) who have been  taking antidepressants for at least five years, a rate that has almost doubled since 2010, and which has more than tripled since 2000. This is despite the fact that the drugs were originally intended and approved for short-term use, to get someone through a six- to nine-month crisis. Later studies found that longer-term usage could keep depression at bay for some patients, but such studies of SSRIs have rarely lasted more than two years.

....

They don’t work in the same way for everyone, though, and today, while there are no official numbers on how many people, like Wojciechowski, are attempting to wean themselves off their drugs, a recent study of 1,829 users of antidepressants found that about 75 percent had tried, just over 30 percent of them quitting successfully; the others found the withdrawal symptoms too hard to bear.

 

This much is clear: Thousands, if not millions, of people who are on antidepressants want to get off them — for reasons that range from unwanted side effects (including sexual dysfunction, emotional numbing and weight gain) to a nagging desire to know who they are without them. Still others, told they had a serotonin deficiency, feel they were needlessly diagnosed and prescribed from the get-go, and now want to put that belief to the test.

 

Whatever the motivation, they are finding that withdrawing is no easy feat — especially considering this startling fact: There is absolutely no psychiatric protocol to guide them.

“To my knowledge, there is no ‘official,’ professionally endorsed, week-by-week protocol for safely tapering patients off antidepressants,” [Dr. Ronald] Pies tells Yahoo Lifestyle. “This is a serious gap in our knowledge base and practice guidelines.”

 

And it’s why many, like Wojciechowski, are taking matters into their own hands, through a collective effort that represents a burgeoning international movement.

 

Consisting largely of peer-led, online communities, the virtual spaces provide mutual support in people’s quest to become drug-free — sometimes after years or even decades of struggling, in some cases, with what are known as “iatrogenic effects,” meaning that the drugs seem to exacerbate the issues that made people take meds in the first place.

 

The grassroots support and advice forums run the gamut from strictly layperson-led guidance hubs like the Withdrawal Project, Surviving Antidepressants and Everything Matters Beyond Meds to the more structured counsel of “holistic” psychiatrists such as [Peter] Breggin and Kelly Brogan, whose pricey Vital Mind Reset Program provides patients access to a private Facebook support group.

 

What the systems provide is twofold: communal support for a process that can bring excruciating and long-lasting mental and physical withdrawal symptoms, and practical advice and instructions about how, exactly, to taper off these meds. The reach of the grassroots groups is powerful — not only for the patients who rely on them, but for the clinicians who turn to them in the absence of formal protocols.

 

“I learned this entirely from my patients. Entirely,” says Brogan, an MIT-educated physician whose entire psychiatry practice is focused on helping patients get off their psychotropic medications....“These drugs are more habit-forming than any chemicals on the planet — more than alcohol, cocaine, crack, Oxycontin. I could taper someone off of an opiate in days, but sometimes, with these meds, you need years to come down sometimes by a milligram. This is, like, an international emergency.” (The question of “habit” is a point of contention; while studies have found that many patients do find their SSRIs addictive, the APA notes that antidepressants are “not habit-forming.”)

 

To learn about the safest, most effective ways to taper off, “I read every [tapering] blog and chat room there was,” Brogan says, “and I learned that there are millions of people doing this around the world on their own today, because they cannot find [doctors] like me who are willing to support their journey.”

 

That may be starting to shift ever so slightly, thanks to the efforts of people outside the profession, says Robert Whitaker, the investigative science journalist behind the psychiatric-history critique Anatomy of an Epidemic (which used reams of medical evidence to question the broad diagnostic criteria for mental illnesses, the promotion of the “chemical imbalance” theory and the often too cozy relationship between many leading lights in psychiatry and the pharmaceutical industry). He is also the founder of the website Mad in America, whose mission is to “serve as a catalyst for rethinking psychiatric care,” arguing that “the current drug-based paradigm of care has failed our society.”

Whitaker, who is widely revered in withdrawal communities, and whose book is basically seen as the bible of the movement, tells Yahoo Lifestyle, “For the longest time, people wanting to get off [meds] would so often not find any support from their prescribers. But that has changed now, and one reason, I think, is grassroots.”

 

Recent developments include the establishment of the International Institute for Psychiatric Drug Withdrawal — an international consortium of mental health professionals and other experts (including Whitaker) that hosts withdrawal workshops, including one on Jan. 19 in Norway — as well as a new “deprescribing” initiative at the Yale School of Medicine, which aims to teach aspiring psychiatrists lessons about withdrawal.

 

“We have to come up with guidelines, because there are no guidelines, and there are no [financial] incentives to create those guidelines,” Swapnil Gupta, the assistant professor of psychiatry behind Yale’s informal effort, tells Yahoo Lifestyle. She says that she, too, relies on consumer forums and patients to learn about withdrawal.

 

Gupta was stunned at what she saw as overprescribing — patients on four or five different psychotropic medications at a time “without any specific pharmacological rationale” — when she arrived in the United States from India for her residency several years ago. Since then, she has  focused on the topic of safe withdrawal, adding lectures to the Yale curriculum and co-writing several review articles. A forthcoming book that she co-authored with colleagues will join Breggin’s Psychiatric Drug Withdrawal: A Guide for Prescribers, Therapists, Patients and Their Families in filling the void, providing details on how to cut back on prescriptions in every medication class, including antidepressants and benzodiazepines — anti-anxiety meds, such as Klonopin and Xanax, which are often prescribed alongside antidepressants, and are highly addictive and are frequently misused, according to a new report.

 

Also adding to the growing withdrawal conversation has been the October release, in the United Kingdom, of a major government-commissioned review in the journal Addictive Behaviors.  It analyzed 24 studies to create a more accurate portrait of the experience of withdrawal. The main objective was to examine the severity and duration of antidepressant withdrawal effects, and whether or not they matched the official U.S. and U.K. warnings given to patients — which say that effects are “self-limiting (typically resolving between 1 and 2 weeks)” and “usually mild,” according to APA guidelines as well as the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

 

Researchers, as it turns out, found major discrepancies.

 

“Current clinical guidelines are in urgent need of correction,” noted the researchers, John Read, a psychologist, and James Davies, a cultural anthropologist, who wrote about finding a much more bleak reality: “While in some people, such reactions may be mild, of short duration and manageable … in other people, even with slow withdrawal, these reactions are severe, long-lasting and can make normal functioning impossible. Typical AD [antidepressant] withdrawal reactions include increased anxiety, flulike symptoms, insomnia, nausea, imbalance, sensory disturbances, and hyperarousal. Dizziness, electric shock-like sensations, brain zaps, diarrhea, headaches, muscle spasms and tremors, agitation, hallucinations, confusion, malaise, sweating and irritability are also reported,” along with “mania and hypomania,” “emotional blunting and an inability to cry,” and “long-term or even permanent sexual dysfunction.”

 

The study, which Read tells Yahoo Lifestyle was inspired in part by the grassroots withdrawal community, also found this: that 64 percent of patients say their doctors never warned them about the risks or side effects of antidepressants.

....

Learning from each other, not psychiatrists: ‘revolutionary’ 

A growing number of people wanting to withdraw from SSRIs are in firm agreement with Breggin — including about 30 who gathered in a bland, small conference room at a Connecticut Sheraton last spring. They had come to join a workshop, “Psychiatric Drug Withdrawal 101: A High-Level Overview of What a Risk-Reducing Medication Taper Plan Looks Like,” as part of a weekend conference by Advocacy Unlimited, a mental-health rights nonprofit.

....

Learning from mistakes 

The power wielded by care providers, according to those who have attempted to taper off antidepressants and anti-anxiety meds — at least among the 15 people who shared their stories with Yahoo Lifestyle — can lead to a huge amount of frustration.

....

Upstate New York writer Chase Twichell, 67, has been on various meds for 32 years, including the antidepressant Paxil; the first time she tried tapering off of it was in 1992. She went too quickly, and wound up with “weakness, fainting, nausea, vomiting, disequilibrium, a weird feeling of electrical currents running through my body, shocklike feelings in my head.” At the ER, she was told she had the flu.

 

“It was the worst experience of my life,” she tells Yahoo Lifestyle. “I knew it was the Paxil, but no one would believe me.”

 

She went back on and tried weaning again in 2005, but the same thing happened. Now, for about nine months, she’s been giving it another, more informed go, using the specific recommendations on the Surviving Antidepressants forum. “The site is not run by medical professionals, but is very carefully and responsibly moderated,” she says. “I find it immensely helpful to compare notes with others.”

....

A psychiatrist who won’t prescribe 

 

Brogan does virtual one-on-one counseling for a handful of patients, but is focused these days on helping people taper off psychiatric meds through her books and programs. That includes a “reset” preparation that involves first making major dietary changes (no more dairy, wheat or sugar), getting a battery of blood tests (to rule out issues such as thyroid problems that could mimic depression), and making lifestyle shifts such as prioritizing sleep.

 

“I don’t taper a milligram before this 30-day reset is accomplished,” says Brogan, who stresses that people should “never ever ever ever just stop taking your meds” suddenly, and who adds that, while withdrawal is certainly possible, “It’s not for the faint of heart.” She describes her role in the support process as “basically like a home birth midwife,” explaining, “I’m there, I have total confidence that it’s going to be cool, and I’ll reflect that to you, like, ‘You’re rocking it out, keep going.’”

 

Her private patients — all women, as she believes “women, in particular, are sold a bill of goods around pharmaceuticals” — are typically in their 40s, having been medicated since their 20s, when going to college or other transitions caused distress.

 

“I meet with women, and they’re on three to five meds — and these are not women drooling in Bellevue, these are women who work [in New York City], who from the outside in look totally quote unquote ‘normal,’ and they feel unwell. They come to me unwell on medication, basically they’ve had enough, because their psychiatrist says, ‘Let’s just add this one on.’ … So then we have to create a new terrain. We have to figure out the why they were ever put on meds before we take them off — the real why.”

 

Brogan rejects not only the so-called chemical imbalance theory, blaming it on messaging gone awry due to unregulated direct-to-consumer marketing (“The FDA absolutely turns a blind eye,” she says). She also rejects the whole diagnosis of clinical depression. “I do not believe it’s a disease entity, and the reason is because there is not a shred of evidence that it is. Do I believe that it’s an experience? One hundred percent.” Learning to live diagnosis- and medication-free, she says, is difficult, and not helpful for everyone, because “it means that you have perhaps far less evidence [to explain] what you feel is still off or wrong inside you.”

....

 

 

Our discussion at

 

Edited February 13, 2020 by Altostrata
updated link

[Altostrata]

From discussion with one of the authors, I have been informed SurvivingAntidepressants.org played a key behind-the-scenes role in this major step forward.

 

Our topic Why taper? SERT transporter occupancy studies show importance of gradual change in plasma concentration , started by  @dcrmt in 2014, was a basis of this paper, along with other of our discussions.

 

 

 

[Shep]

Surviving Antidepressants and Altostrata are mentioned in the recent Mad in America article and podcast: 

 

Peer-Support Groups Were Right, Guidelines Were Wrong: Dr. Mark Horowitz on Tapering Off Antidepressants

 

Quote

The website that was far and away the most helpful was Surviving Antidepressants, run by Altostrata. It’s a wonderful resource with a quite incredible number of people involved in it. I think there are hundreds of thousands of posts and tens of thousands of people all talking about experiences that were just like mine. And it was the first time that I felt that I had a handle on things when I went on that website. And I soon learned that people came down off their medication much more slowly than guidelines recommended. And I began following their guides, thinking it’s useful that these people were around, but how come I need to go to peer support websites for this, when there are so many doctors and psychiatrists and professors around? Why is this? Why is the best information around on a peer support network?

 

[Altostrata]

Surviving Antidepressants received prominent mention in this April 1, 2019 New Yorker article, titled "Bitter Pill" in the print edition.

 

 

[papaloapan]

Alto, Shep, administrators and all the moderators deserve a nobel prize. I am so grateful with you guys. Is this the right thread to post this kind of posts?

[Altostrata]

Any place is the right place to post this! On behalf of the staff, thank you very much.

[JackieDecides]

On 4/3/2019 at 8:05 PM, Altostrata said:

Surviving Antidepressants received prominent mention in this April 1, 2019 New Yorker article, titled "Bitter Pill" in the print edition.

 

 

 

 

congratulations! 

[Altostrata]

SurvivingAntidepressants.org cited in article published in Therapeutic Advances in Psychopharmacology

 

 

Quote

I was aware this was just one person’s experience. However, I came to realize I was far from the only person who had experienced this problem. At a conference I met others who had gone through similar experiences. There, I heard about the Surviving Antidepressants (SA) website,4 which offers peer support for tapering off psychiatric drugs and managing withdrawal symptoms. Many people report finding such resources necessary in the absence of sufficient understanding and support by mental health services;5 this is borne out by SA’s 12,000 registered users and 300,000 hits per month.4

 

[Altostrata]

Psychiatrists referred to SurvivingAntidepressants.org to learn about tapering in a 2019 article by Dr. Jim Phelps (free registration required) on deprescribing in psychiatry. (Psychopharmacology Institute is a company that provides continuing medical education for prescribers.)
 

Quote

 

Finally, regarding withdrawal symptoms (like for antidepressant withdrawal), in my view, you should be able to avoid these by laying out a taper process that simply keeps them from happening in the first place. But when they do, I think it’s important to provide support, and see if you can buy time with interventions like with fish oil, for example, and avoid going back up. Now, in extreme cases, I would simply refer the patient to survivingantidepressants.com and say, "Study up on what patients have done there", while trying to maintain my treatment alliance.

 

 

Full transcript here:

 

 

Edited May 23, 2020 by Altostrata
updated

[Giulietta]

Congratulations to you, Alto, for beginning and developing SA - and the many moderators and leaders who shine light on it.

[Altostrata]

https://journals.sagepub.com/doi/full/10.1177/2045125320922738

 

Karter, J. M. (2020). Conversations with clients about antidepressant withdrawal and discontinuation. Therapeutic Advances in Psychopharmacology. https://doi.org/10.1177/2045125320922738

 

"Following this discussion, providers should inquire about what may have been unclear and what questions this conversation brought up for them. It is important that providers be open to hearing clients’ frustration with the lack of information about these issues that they may have been provided at the outset, and be honest about the limitations of the current science. Research suggests that the quality of the relationship between the provider and service-user impacts expectations about taking or coming off a medication.¹⁴ As a result, the professional can significantly affect the experience of discontinuation and contribute to the effectiveness of the intervention. Therefore, it is recommended that providers utilize motivational interviewing skills throughout these conversations by expressing empathy, normalizing the ambivalence about discontinuing, and supporting self-efficacy and optimism. For additional information, providers may want to reference the new “Guidance for Psychological Therapists: Enabling conversations with clients taking or withdrawing from prescribed psychiatric drugs,” developed by the Council for Evidence-based Psychiatry (available at: https://prescribeddrug.info/guidance-for-psychological-therapists).¹⁵ Service users may also benefit from peer support and information provided by networks for those discontinuing antidepressants including Surviving Antidepressants, the Withdrawal Project, Inner Compass, and Mad in America."

 

[Shep]

From Mad in America:

 

Psychiatry’s Top Experts Acknowledge Lasting Harms of Antidepressant Withdrawal

 

Quote

Burn set out to learn more about this by speaking with the service user and survivor groups who called themselves the “prescribed harm community”; this included Altostrata, which is a forum that provides peer support to those tapering off antidepressants.

 

 

[Altostrata]

Thanks, Shep. Professor Wendy Burn's letter is here:

 

https://blogs.bmj.com/bmj/2020/09/25/wendy-burn-medical-community-must-ensure-that-those-needing-support-to-come-off-anti-depressants-can-get-it/

 

Quote

 

Wendy Burn: Medical community must ensure that those needing support to come off antidepressants can get it

September 25, 2020

 

 

In 2018, while I was still President of the Royal College of Psychiatrists (RCPsych), I co-signed a letter to The Times which stated that “in the vast majority of patients, any unpleasant symptoms experienced on discontinuing antidepressants have resolved within two weeks of stopping treatment.” 

 

To my astonishment the letter sparked a furore. A group of psychologists, psychiatrists and patients complained publicly. They were unhappy as they had found stopping antidepressants led to symptoms in patients that were often misinterpreted as a relapse of depression, which in turn led to taking medication for longer periods of time. 

Formal complaints were made to RCPsych and to the General Medical Council. I was widely and upsettingly trolled on social media, as were several of my colleagues. 

In my many years of clinical practice, stopping antidepressants had not been a problem that my patients had reported to me. Possibly because I have always slowly tapered any medication that my patients were on.

 

While our letter had been in line with the NICE guidance on antidepressant discontinuation which states  “symptoms are usually mild and self-limiting over about one week” we had not included the further guidance from NICE that stated symptoms “can be severe, particularly if the drug is stopped abruptly.” 

 

As the President of the College I felt it was my responsibility to find out more from patients who were experiencing these symptoms and consider how they could be supported

Over the next year, I met patient groups who reported harm from using antidepressants. They describe themselves as the “prescribed harm community.” 

 

I visited a charity in Bristol which supports people coming off psychiatric medication, working with their doctors. I attended an event run by a group called “Drop the Disorder” who challenge the culture of medical psychiatric diagnoses. 

 

Many people attending this event told me they had been damaged by antidepressants, particularly by their experiences of coming off them.  

 

I talked to “Altostrata” in San Francisco who founded the Surviving Antidepressants website in 2011, this supports people who are having problems stopping psychiatric medication and has a huge collection of case histories. She describes experiencing acute withdrawal symptoms, followed by Post-Acute-Withdrawal Syndrome (PAWS) with ongoing symptoms.

It became clear that I had underestimated the number of people experiencing difficulties in stopping antidepressants and that the problem was widely under-recognised across healthcare.   

 

I spoke to people who reported feeling abandoned with little or no support for symptoms after stopping their antidepressants. Meanwhile, I feared that heated and often polarised arguments were deterring people with mental illness from speaking about their experiences and seeking support.

The College’s position in 2018 had not been right.  

 

We worked together with patients, GPs, psychiatrists, stakeholders, campaigners, NICE and PHE to produce a statement on antidepressants and depression which changed our position and gave clear recognition to the difficulties that can arise for some people when coming off antidepressants.

 

With this position statement we put patients at the centre of our work, listening to critics with an open mind and using this to inform our practice—a significant step in the right direction.  

 

The following extract from the position statement marks this vital change to our approach: “Whilst the withdrawal symptoms which arise on and after stopping antidepressants are often mild and self-limiting, there can be substantial variation in people’s experience, with symptoms lasting much longer and being more severe for some patients. Ongoing monitoring is also needed to distinguish the features of antidepressant withdrawal from emerging symptoms which may indicate a relapse of depression.” 

 

We also recommended that better support is provided to people who are stopping antidepressants. 

 

Following this update, NICE changed its guidance to reflect the importance and range of withdrawal symptoms. NICE also advise people on antidepressant medication to talk to their practitioner before stopping and to get their support with managing withdrawal symptoms.

 

This week RCPsych is launching a Patient Information Resource on withdrawing from antidepressants. The resource offers advice to patients on carefully managing the process for stopping antidepressants. 

 

It’s been written by a pharmacist and a psychiatrist with their own personal, as well as professional, experience of withdrawal symptoms, along with input from multiple stakeholders. 

The online patient resource, available free on the RCPscych website, has been endorsed by the Royal College of General Practitioners and the Royal Pharmaceutical Society. 

I’m hoping that the whole medical community will get behind this work to ensure that those needing support to come off antidepressants can get it. Most of all, I hope the resource proves helpful to people on antidepressants, and that no one experiencing mental illness is shamed or intimidated from seeking help.

 

Wendy Burn, Consultant Old Age Psychiatrist, immediate past president of Royal College of Psychiatrists, National Mental Health Clinical Advisor to Health Education England and Chair of Equally Well Clinical Group.

Competing interests: None declared.

 

 

[Shep]

I don't see these items listed here, so I'll add Alto's interview over on the Mad in America site: 

 

Surviving Antidepressants: An Interview with Alto

 

A research study co-authored with Alto: 

 

Hengartner, 2020: Protracted withdrawal syndrome after stopping antidepressants: a descriptive quantitative analysis of consumer narratives from a large internet forum

 

This study was explored over on the Mad in America site:

 

Researchers Document Protracted Withdrawal from Antidepressants

Edited February 19, 2021 by Shep
fixed link

[DataGuy]

 

Wendy Burn, past president of the Royal College of Psychiatrists has endorsed Altostrata's work, as has Allen Frances, the chair of the task force in the creation of DSM IV.

 

 

[Nomansland]

Outstanding work!

 

@Altostrata and all the other poeple here, everyone who is trying to help someone to get out of one of the biggest medical issue (withdrawal) is a hero!

Wendy Burn seems to be a very smart woman recognizing withdrawal, while thousand of medical practitioner deny everything.

 

But our time will come.....sooner or later....there is no way back!

 

(Have already shared this article and tweet in the german taper forum)

[Altostrata]

Thank you. The paper may be read, downloaded, or shared from this link:

 

Framer, A. (2021). What I have learnt from helping thousands of people to taper off antidepressants and other psychotropic medications. Therapeutic Advances in Psychopharmacology. https://doi.org/10.1177/2045125321991274

[Altostrata]

I was recently interviewed by Will Hall in this a Madness Radio podcast

 

https://www.madnessradio.net/medication-withdrawal-******-framer-madness-radio/

[elbee]

On 4/19/2021 at 10:37 PM, Altostrata said:

I was recently interviewed by Will Hall in this a Madness Radio podcast

 

https://www.madnessradio.net/medication-withdrawal-******-framer-madness-radio/

 

I appreciate all of Will's work, but in this case, I would have liked to have heard more from the interviewee than the interviewer 😉