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AbbyElfie

Template Letter Of Evidence To Doctors/Psychiatrists - feel free to use!

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AbbyElfie

Hey all,

 

A couple of weeks ago I typed up a letter and sent it to my GP outlining some evidence I'd summed up from this site as well as recent studies on withdrawal. It summarized my current condition along with my request that they consider the information provided and also support me in a slow taper off the remainder of medication. The letter is attached below as a text document - I've removed bits of personal info to make it more generic, and put in brackets the parts where you will need to add your own information. (You may need to copy and paste it to a Word document or similar to format it properly).

 

The outcome was very successful - I hadn't heard anything back so I rang a week later and requested a call back from the doctor, as I wanted her to also pass it on to my new psychiatrist. A while later I got a call from the head pharmacist at the local chemist. My doctor had asked her to call me, which at first confused me a bit. But the pharmacist basically said she had also read the letter and appreciated the information I'd provided - that they understand there is some evidence now that indicates 'some' individuals experience protracted withdrawal, but they also have to work within their system and the current evidence they use. However, both her and the doctor are prepared to support me in a very slow taper off the remainder of the Prozac, and she gave me a guideline plan of reducing by 0.1mg approx every 3 to 6 months (I want to go extra slow now), with the intention of getting off it completely.

 

I was really impressed with how pro-active and understanding this lady was, and also how readily she listened to the evidence. Initially I'd been a bit defensive and ready to have an argument with them, but she had a plan all laid out for a super slow withdrawal and was happy to help with it. It apparently costs more to prescribe liquid fluoxetine and she will have to justify ordering it for me for such a long period by saying that the intention is to come off it completely. She did suggest that, for now, this is still considered an 'unusual' case (HA!), but I'd say that is a big step forward all things considered.

 

Please feel free to use this template letter, edit it to include your own personal information about withdrawal, and pass it on to any healthcare professionals you are involved with. I hope you guys have similar success, you may be surprised. Thank you very much to @Caspur too, who provided all the online evidence via links and who also shared a template letter in the 'In The Media' section of the site x

Letter To Doctors and Psychiatrists.txt

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AbbyElfie

No problem, thanks for the links :)

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composter

Abby, this is golden. The content of your letter reads very clear, professional, and informative. I have been wanting to write something similar to provide to my neurologist (the original prescriber of my med). I will use this as a guide and I can share a version of my letter here (perhaps a US-focused version) once I have it.

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AbbyElfie

Aw thank you @composter. That's a good idea, I hope it helps! Definitely let me know how it goes

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India

@AbbyElfie Do you think it would be worth adding the FAVA Study?

Withdrawal Symptoms after Selective Serotonin Reuptake Inhibitor Discontinuation: A Systematic Review

Fava G.A.a, b · Gatti A.a · Belaise C.a · Guidi J.a · Offidani E.c 

https://www.karger.com/Article/FullText/370338

 

My sister works in the medical profession and many of her friend's are junior doctors, and radiographers. From my interactions with her, and my own GP, I know that they are less likely to consider media articles as a reliable source, particularly tabloid journalism like 'The Daily Mail'.* . It is all about an 'evidence' base, Is there a 'study' for this? That is how my sister was trained, though she is more liberal in her thinking but must follow strict procedures in relation to her patients.  I think utilising academic articles in letters are likely to be more persausive. Doctor's tend to prefer 'logic' over  what might be perceived as an emotional/sensationalist appeal of the journalistic style.

 

*I first sent my family an article on Viscount Hitchingbrooke and his experience with SSRI withdrawal and their response was, "It's the Daily Mail". Only when I started to provide other sources credited by studies and critical psychiatrists did they start to come round to accepting it's legitimacy.

 

I think the media articles are still relevant as they are a survey of studies and lived experiences but I think the more academic/medical studies collated to add to the letter the better.

 

 

What does everyone think?

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India

I have just re-read the template and realise you have included the Davies study and parliamentary review. I am currently in the process of composing a letter to my GP with links. It's taken me hours ( something that would have probably only taken me 30 mins in the past!!).

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Altostrata

I would include references to journal articles for doctors, and references to media articles for non-doctors.

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India
2 hours ago, Altostrata said:

I would include references to journal articles for doctors, and references to media articles for non-doctors.

Good idea.

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AbbyElfie

Hey @India - yeah totally, feel free to add to it or change it to suit. I wrote this very quickly on the spur of the moment one day and just handed it in before I could change my mind lol, I also cringed putting anything from the Daily Mail in there. But I knew I'd have a limited amount of time to make an impression on my doctor, as I suspected she'd skim through it so just put what down what I had available there and then. It'd definitely be a good idea to add more studies and journal articles, making them succinct but still getting the right information across. It's tough to know what is best to include when you've probably got a very limited time span in which to catch their attention - sort of like being a salesman ha. Hope your letter went well, keep me updated

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India

I just had a phone conversation with gp and he says that my memory problems are a continuation of depressive symptoms? Even though I never had any of these memory issues before! Arrrgh. If anyone finds a paper on memory issues and ssri withdrawal then I'd be grateful. 

@AbbyElfie I agree, since there are very few studies on long term use how else can you represent the wide plethora of lived experience. These are collated in media articles that are easy to access. There has to be an interaction with patient experience. Afterall, we are the biggest drug trials!! The longitudinal guinea pigs!!

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AbbyElfie
20 hours ago, India said:

I just had a phone conversation with gp and he says that my memory problems are a continuation of depressive symptoms? Even though I never had any of these memory issues before! Arrrgh. If anyone finds a paper on memory issues and ssri withdrawal then I'd be grateful. 

@AbbyElfie I agree, since there are very few studies on long term use how else can you represent the wide plethora of lived experience. These are collated in media articles that are easy to access. There has to be an interaction with patient experience. Afterall, we are the biggest drug trials!! The longitudinal guinea pigs!!

 

Gaaa, that's so frustrating. I always use the line 'I've generally always been quite a 'sharp' individual - top of my class/workplace for efficiency, organisation etc, even during periods of depression and emotional turmoil - you don't suddenly start losing your memory at 28 years old for no reason'. Or something like that, basically making clear that it's all very coincidental that these issues appear in withdrawal. Because I was such an over-intellectual nerd and obsessed with learning and knowledge, I can see the contrast very obviously. Nowadays I can barely remember what I did yesterday. (Also, try a brain training app, I think it's helping with this).

 

And yes, we ARE the drug trials! I posted something similar on instagram recently - the need for healthcare professionals to realise that the system they're working within is essentially little more than a mass scale guinea pig trial. That alone should help them develop a bit more compassion and open mindedness.

 

 

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India

My sentiments exactly on the memory. Writing on an iPhone and so will write a proper response tomorrow. 

One thing I wanted to ask members of this forum. What do you say to friends, family and doctor's about those that don't experience side effects after taking SSRIs for long periods of time and withdrawing. How does the brain remodelling not affect them? Is it liver enzymes that metabolise or? That's the trouble when I propose the adaptation/cns theory. Obviously it doesn't negate those that suffer but I wonder wht we  experience such viscious effects. Perhaps it's genetics . I don't know. I'm not scientist and like you , my once Lucid mind can barely get through a few paragraphs of complex medical journal articles.. I've heard things like "well my other patients haven't had problems coming off " ( when I have asked whether they've encountered it). 

 

Will wrote more on memory tomorrow. 

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AbbyElfie
On 11/6/2018 at 12:59 AM, India said:

One thing I wanted to ask members of this forum. What do you say to friends, family and doctor's about those that don't experience side effects after taking SSRIs for long periods of time and withdrawing. How does the brain remodelling not affect them?

 

I've thought about this too. I generally just go on the basis that everybody's nervous system is wired differently, many people are more robust, plus I believe the longer you're on meds the more damage they do gradually over time. So if you were once able to stop with no problems, that doesn't necessarily mean you won't have issues later on. Overall, I try to return to the fact that these drugs are largely experimental, so doctors cannot affirm their long term safety, the information just isn't available. So that alone should give us enough to question them.

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AbbyElfie

Another update on the above - I went to a psych assessment at the hospital this week. I thought it would be with a psychiatrist but it was a community psych nurse. Glad to say she was brilliant - she was somewhat with protracted withdrawal immediately, said she had had a woman in the previous week with the same issue, and listened to everything I had to say. I didn't feel I needed to convince her of anything.

 

She did a full assessment and said that there was no point referring to psychiatry because they simply won't accept it yet (she had tried with the previous patient, they just disregard evidence). Plus, they can only really prescribe meds. But, she did say I will be supported as much as possible since my notes are now all with them, and gave me information for something called the Recovery College. It's a program of courses designed to support people recovering from mental ill health, ranging from mindfulness, psychosis management, understanding depression etc. It's patient centered and they're always adding new programs, plus it's good social support in general. She suggested if I was ever able to I could start one on medication withdrawal.

 

She also mentioned that there is a psychiatrist here in Belfast who has apparently been doing research on withdrawal for the past few years. I'm going to try and get in touch with him. Generally it was a really good experience, this lady was very understanding, practical, and I could feel she was restricted by the system in place, although she said it was gradually changing and would in time. Those 'higher up' so to speak just can't allow an entire psychiatric model to collapse over night.

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India
On 11/8/2018 at 10:10 AM, AbbyElfie said:

Another update on the above - I went to a psych assessment at the hospital this week. I thought it would be with a psychiatrist but it was a community psych nurse. Glad to say she was brilliant - she was somewhat with protracted withdrawal immediately, said she had had a woman in the previous week with the same issue, and listened to everything I had to say. I didn't feel I needed to convince her of anything.

 

She did a full assessment and said that there was no point referring to psychiatry because they simply won't accept it yet (she had tried with the previous patient, they just disregard evidence). Plus, they can only really prescribe meds. But, she did say I will be supported as much as possible since my notes are now all with them, and gave me information for something called the Recovery College. It's a program of courses designed to support people recovering from mental ill health, ranging from mindfulness, psychosis management, understanding depression etc. It's patient centered and they're always adding new programs, plus it's good social support in general. She suggested if I was ever able to I could start one on medication withdrawal.

 

She also mentioned that there is a psychiatrist here in Belfast who has apparently been doing research on withdrawal for the past few years. I'm going to try and get in touch with him. Generally it was a really good experience, this lady was very understanding, practical, and I could feel she was restricted by the system in place, although she said it was gradually changing and would in time. Those 'higher up' so to speak just can't allow an entire psychiatric model to collapse over night.

Amazing news!!! Haven't been able to reply due to being in a wave. Will be in touch 

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AbbyElfie

No problem @India, take care of yourself x

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FarmGirlWorks

Your template @AbbyElfie has inspired me along with the CBT list I read last week here that suggested instead of stewing with vitriol at the pharmaceutical company that harmed you (and I have spent many hours doing that) to write a letter instead. I am going to send this to my former PCP. I will reword it a bit to send to my former therapist. The advice here was great and I revised some of the links for the more mainstream publications and added the Karger abstract (I am in too much of a wave to find others). Thanks for that @India. I did add quotes to increase readability and offered to send it in digital form.

 

Any feedback? I figure it's been 19 months and a few more days won't matter.

 

On 11/5/2018 at 4:59 PM, India said:

What do you say to friends, family and doctor's about those that don't experience side effects after taking SSRIs for long periods of time and withdrawing. How does the brain remodelling not affect them? Is it liver enzymes that metabolise or? That's the trouble when I propose the adaptation/cns theory. Obviously it doesn't negate those that suffer but I wonder what we  experience such viscious effects. Perhaps it's genetics . I don't know. I'm not scientist and like you , my once lucid mind can barely get through a few paragraphs of complex medical journal articles.

I know I should feel glad for people who get off easily and don't go through this hell but honestly I feel hella jealous.

 

ltr2pcp.txt

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AbbyElfie
On 11/15/2018 at 1:08 AM, FarmGirlWorks said:

I am going to send this to my former PCP. I will reword it a bit to send to my former therapist. The advice here was great and I revised some of the links for the more mainstream publications and added the Karger abstract (I am in too much of a wave to find others).

 

You're very welcome FGW, and I think it's great you're taking these steps especially while in a wave. I hope it helps, let us know what kind of response you get. I found it helped sending it in advance and requesting they read it, then calling a few days/a week later for a response, rather than going into an appointment and just handing it to them. It means they have to read it and respond properly.

On 11/15/2018 at 1:08 AM, FarmGirlWorks said:

I know I should feel glad for people who get off easily and don't go through this hell but honestly I feel hella jealous.

 

Tell me about it lol. I read about a semi-famous guy this week who was talking on instagram about how he'd been heavily medicated on anti-d's for years, as well as dealing with alcohol/street drug addiction - he is off all meds now for several years and doing better than ever. Which is great, but also WHYYYY/HOW?? lol. It doesn't seem fair sometimes. Take care of yourself x

 

*Edit - just realised you attached the letter. Had a read and sounds good to me.

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FarmGirlWorks

Changed the letter (attached) significantly and "borrowed" some wording from other SAers. However, this message has been bouncing around in my poor brain and now I can put it to rest. Sent this to 2 former PCPs, current PCP, and my former therapist. Decided to just get to the heart of what I hope they hear: use caution when prescribing and clearly tell patients of the risks. Thanks for the inspiration though, @AbbyElfie.

 

 

Untitled.txt

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manymoretodays

Hmmmm,  FGW, can you post it formatted somewhere on site.  It goes to my notepad unformatted or saves as document unformatted.  Anyone else with that problem?  I can format later myself if this is a problem for you.

I was not able to access AE's letter either.

Sheesh, just when my skills "seem" better a new doozie challenge to surmount.

Thanks.

mmt

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FarmGirlWorks
13 minutes ago, manymoretodays said:

Sheesh, just when my skills "seem" better a new doozie challenge to surmount.

Oh I feel you: there are so many things on my computer that I just kick the digital can down the road. * I had to put the letter in plain, unformatted text to get it uploaded... and I can't get the PDF to upload. Arrrgh!!!

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manymoretodays

I got it FGW.  It wasn't too difficult to reformat.

 

Not sure that I would get the same response as AE did.

As I'm now off medications and moving along fairly swimmingly.

 

Don't forget to add in some of the references as well.

The Davies article(2018) and there are a bunch in Caspur's original template letter.

I've got that formatted(Caspur's original letter)now, and will see if I have seen and/or have on file somewhere, most of those references, as well.

 

At most and at best.......I hope we all raise awareness........and get some new standards of practice established,  and formulations(tapering strips, compounded medications that are affordable and tolerated) going, for when those behind us wish to taper, and eventually live medication free.

 

And understanding.......oh, just plain understanding and acknowledgement of what we've been through(I guess that's my ego talking......yet it's been a huge part of my life)

 

signed: one competent and able mmt, for I shall always carry that cross of being "mentally ill".  It doesn't go away. 

It has for me, however(most days and hours and minutes)

It's a nice cross, fairly lightweight, and my wings support it.

 

 

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FarmGirlWorks
5 hours ago, manymoretodays said:

It's a nice cross, fairly lightweight, and my wings support it.

💙

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AbbyElfie

FGW well done on getting it sent, it can take a leap of faith to do so. I hope you get some positive responses, or at the very least some acknowledgment.

 

MMD - yes, plain understanding would be good. I still have days where I feel ok and think 'am I making it all up?', then a wave happens and I realise I'm not the only one. This is a real issue. Tapering guidelines and support would be a good change to see. My friend noticed a new sign in the doctors surgery the other week, saying 'Medications are a temporary option. Talk to you doctor about reducing', or something similar. Which was good. Some level of awareness seems to be happening very quickly all at once here, for some reason. Glad to hear you're doing well :)

 

Hoping others can open the documents ok? The notepad thing is annoying but I think I saved it as a plain text so people could copy/paste and edit.

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SkyBlue
4 hours ago, AbbyElfie said:

I still have days where I feel ok and think 'am I making it all up?', then a wave happens and I realise I'm not the only one.

 

Abby, what a wonderful document, and thank you so much for sharing it.

 

Interestingly, I sometimes wonder "am I making this up?" in a bad wave, not a window. The windows to me show me very clearly that this is an actual thing, a physical thing, and I thing I am healing from and will heal from. Interesting that we seem to come at it from different ways : ) . 

 

I was able to open the document just fine. Having it in a text file is a great idea. 

 

Keep spreading the good word! 

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FarmGirlWorks
6 hours ago, AbbyElfie said:

I still have days where I feel ok and think 'am I making it all up?', then a wave happens and I realise I'm not the only one. This is a real issue.

I have this too. I had a reasonable day yesterday and was doubting that it was "real" and maybe just unresolved childhood trauma issues (and that is there too). But today, dipped again and feel like my brain is "stretching" and realized that it is definitely not my imagination.

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powerback
46 minutes ago, FarmGirlWorks said:

I have this too. I had a reasonable day yesterday and was doubting that it was "real" and maybe just unresolved childhood trauma issues (and that is there too). But today, dipped again and feel like my brain is "stretching" and realized that it is definitely not my imagination.

HI folks exactly what I'm feeling lately myself. nice to have even a glimmer we are in there .

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FarmGirlWorks

Ugh. First response received from the PCP who prescribed me Zoloft. This is it in entirety:

 

"Glad you're doing better!

Sounds like you have found a treatment that is working well for you."

 

WTF. Not surprised but definitely disappointed.

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AbbyElfie
On 11/27/2018 at 4:23 PM, SkyBlue said:

 

Abby, what a wonderful document, and thank you so much for sharing it.

 

Interestingly, I sometimes wonder "am I making this up?" in a bad wave, not a window. The windows to me show me very clearly that this is an actual thing, a physical thing, and I thing I am healing from and will heal from. Interesting that we seem to come at it from different ways : ) .  

 

I was able to open the document just fine. Having it in a text file is a great idea. 

 

Keep spreading the good word! 

 

You're welcome! And it's comforting to hear others feel this too. I often feel embarrassed after a wave, like, was I being melodramatic? If it wasn't for people here I might think I'm crazy. I'm grateful to know this is a real, intense process and not just me being silly. Glad you found this useful, I hope it helps :)

 

On 11/28/2018 at 7:41 PM, FarmGirlWorks said:

"Glad you're doing better!

Sounds like you have found a treatment that is working well for you."

 

 

Wtf, that's barely even a response? It's almost passive aggressive lol...'great, thanks for sharing. all the best.' I'm sorry, although not overly shocked.

But maybe some part of what you wrote to them planted a seed, and hopefully that will lead to something positive in the future. So fair play for doing it.

 

 

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manymoretodays
On 11/28/2018 at 12:41 PM, FarmGirlWorks said:

Ugh. First response received from the PCP who prescribed me Zoloft.

 

Oh FGW.......par(as in golf, which I have not taken up......yet).  Yet, I feel your pain and frustration.  I do.

 

I was running through my health insurance options for next year........and really felt somewhat validated, by the woman who was willing to guide me through the changes, in my present plan.  A complete stranger on the phone, no less. 

 

I was able to get addresses of a couple of the mental health professional prescribers' in my past.    And hey, they are still on my plan.

I don't know today, right now........if I will write them, and back up some of my experiences, with references, from the journals that they might read.

Or.......go see them, for a $40.00 U.S. dollars co-pay.  And present my summary of some 30 years.  I've rounded up on the years.  The before, during, and aftermath......and just stick with the medications/drugs.

 

As perhaps my time, and attention, and actions now are key........as far as my continuing journey goes.  The validation.......well, that's an inside job for me.........right now.

 

Undecided.  I may be in the middle though.  Which is good too.  For me.

It sounds a little selfish, me thinks. 

 

Love, peace, healing, and growth......and gratitude,

mmt

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DMV64
On 10/28/2018 at 1:02 PM, AbbyElfie said:

Please feel free to use this template letter,

This is AMAZING! thank you SO much for sharing it!

And yes! I also feel embarrassed after a wave, like I am making it more than it is.

 

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AbbyElfie
On 12/4/2018 at 10:23 PM, DMV64 said:

This is AMAZING! thank you SO much for sharing it!

And yes! I also feel embarrassed after a wave, like I am making it more than it is.

 

 

You're very welcome! I hope it helps your situation in some way.

 

And yes, it doesn't help the terrible self doubt and lack of confidence that has surfaced in withdrawal - feeling like you might be being melodramatic. But I think it's safe to say these drugs do powerful things to our brains and you're not alone in feeling this way.

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Cleerity
On 11/8/2018 at 4:10 AM, AbbyElfie said:

Those 'higher up' so to speak just can't allow an entire psychiatric model to collapse over night.

 

That's the problem.  Acknowledging the truth that there is no science to back the psychiatric drug industry would entail a lot of change:  shrinks that would have to pop the bubble of delusion they live in; a willingness for the industry to publicly admit its error(s); an insurmountable number of apologies to all those harmed; an untold number of law suits; a re-writing of textbooks; a crash in the drug (money) market; a loss of faith in psychiatry...  These are just things in the front of my mind.  It would mean a dismantling of the APA as we know it.  BUT, first, a large host of people need to be swayed (seriously enough) to to come out of the denial that they live in, the illusions/lies that they breathe and perpetuate every day.  People (especially "esteemed" professionals/doctors) don't like admitting that they are wrong.  Heck, I was/am experiencing some uncomfortable cognitive dissonance just reading Anatomy of an Epidemic!  This lady is still marinating with all that I am learning, but I do (at some point) want to do my part to have my voice heard.  I pondered a "what if" as I read this thread...  What if all those who are (or were) in the throes of withdrawal from psychotropic medications created webpages (using free site builders) containing a journal/summary (of sorts) of their experience with and withdrawal from psych drugs?  I realize many are probably already doing this, but what if enough (MORE) folks could be encouraged to do this?   It would surely help.  I can envision more and more people catching on, following suit.  Could a critical mass for change be reached, with something as simple as this?

 

Great work on the letter, Abby!  

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AbbyElfie
On 12/12/2018 at 11:32 PM, Cleerity said:

 

That's the problem.  Acknowledging the truth that there is no science to back the psychiatric drug industry would entail a lot of change:  shrinks that would have to pop the bubble of delusion they live in; a willingness for the industry to publicly admit its error(s); an insurmountable number of apologies to all those harmed; an untold number of law suits; a re-writing of textbooks; a crash in the drug (money) market; a loss of faith in psychiatry...  These are just things in the front of my mind.  It would mean a dismantling of the APA as we know it.  BUT, first, a large host of people need to be swayed (seriously enough) to to come out of the denial that they live in, the illusions/lies that they breathe and perpetuate every day.  People (especially "esteemed" professionals/doctors) don't like admitting that they are wrong.  Heck, I was/am experiencing some uncomfortable cognitive dissonance just reading Anatomy of an Epidemic!  This lady is still marinating with all that I am learning, but I do (at some point) want to do my part to have my voice heard.  I pondered a "what if" as I read this thread...  What if all those who are (or were) in the throes of withdrawal from psychotropic medications created webpages (using free site builders) containing a journal/summary (of sorts) of their experience with and withdrawal from psych drugs?  I realize many are probably already doing this, but what if enough (MORE) folks could be encouraged to do this?   It would surely help.  I can envision more and more people catching on, following suit.  Could a critical mass for change be reached, with something as simple as this?

 

Great work on the letter, Abby!  

 

Exactly. And that's funny because this idea came into my head too today, I've been toying with the idea of keeping a blog. What stops me is the fierce self doubt and delusional mind I get during a wave, I'm not sure I could write openly and honestly at that point. But I might give it a try...

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