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

[Gracee]

Sadly, I've found that doctors won't read past two sentences of any letter or documentation provided to them.  Why?   Time is money.   They have no interest.   They don't care.  It annoys them.

[Bluewisp]

Dead links in the Letter To Doctors and Psychiatrists.txt from the first post of this thread:

http://www.pulsetoday.co.uk/clinical/clinical-specialties/mental-health/nice-antidepressant-withdrawal-guidance-misleading-and-without-evidence/20037572.article?fbclid=IwAR3_NZV0ZKhaSx5ghUQjcoX_EVF9REEL_NTdLki3GuBWTfF-KPVvsd8U5Ao

New working link: https://www.pulsetoday.co.uk/news/clinical-areas/prescribing/nice-antidepressant-withdrawal-guidance-misleading-and-without-evidence/

 

Dead link: http://prescribeddrug.org/wp-content/uploads/2018/10/Davies-Read.pdf

New working link: http://prescribeddrug.org/wp-content/uploads/2019/02/Davies-and-Read-final.pdf

[ChessieCat]

Thanks for providing the new links BlueWisp.  It's greatly appreciated.  I will update them in the relevant post.

 

 

[Ariel]

This is not strictly a letter of evidence; it is also not not a letter of evidence. I post it here in case it prove useful to anyone else, for any purpose. 

 

What I share below is the content of an email written and sent to my former therapist. It is something I wanted to do ever since learning about withdrawal syndrome and PAWS. For a long time it felt like a daunting task, and somehow it still feels that way. I wanted the text to be perfect: clear, complete, effective, undeniable, cataclysmic, catalytic. I have accepted that I cannot articulate the issue ideally. That attachment to perfection reveals a profound hunger for change to occur and this collective, global problem to be fixed. If only I had the magic word to unlock the ultimate paradigm shift and heal the world! Of course this is a fantasy. Any individual communication, including this one, is a drop in the ocean and can only ever be so, regardless of the singular successes or failures of its formulation. Moreover, and perhaps most importantly, I have no control over its reception. But for me in healing process it was a big deal to express myself, however imperfectly, and speak out about my experience to a relevant third party. That is worthy in and of itself. Every droplet in the ocean contains the ocean. The rest is a matter of magnitude, volume, amplitude, time, oscillations -- ripples. 

 

*

 

Hi ____ ,

How are you? I hope this finds you well. 

 

I am writing to let you know that I'm going through protracted antidepressant withdrawal syndrome (PAWS) after coming off of escitalopram (lexapro) in 2018. It's a debilitating, chronic iatrogenic illness that is not yet officially acknowledged by the pharmaceutical industry nor the medical/psychiatric community. It took me many years of suffering and desperate research on my own to finally get to the bottom of what on earth was going on with me. It has been baffling, terrifying, and a complete nightmare. When I last wrote to you in February 2021, I did not yet know that I was suffering from PAWS. A few months later I stumbled upon the online peer support site, https://www.survivingantidepressants.org, and realized I was not alone in what I was going through. 

 

I wonder whether you are aware of withdrawal syndrome, protracted withdrawal syndrome, post-acute withdrawal syndrome, etc. This iatrogenic condition can occur upon tapering/cessation of antidepressants, and can also occur in cases of tapering/cessation of other psychiatric medications. I tapered off of antidepressants under the supervision of a psychiatrist, and have since learned that the taper was conducted wrong, which caused me harm. I do not doubt that the psychiatrist had the best intentions; they were, however, like the majority of the medical community, woefully, tragically ignorant as to how to properly taper off of psychopharmacological medication so as to minimize risk. It's not possible to avoid with any certainty an outcome of developing withdrawal syndrome (the only sure thing is abstinence -- never taking psychiatric drugs in the first place), but there are steps that can be taken to reduce harm. Needless to say, none of those steps were taken by my doctors at any time.  

 

In the interest of public service, I am sending a link to a recent Nation article about this, as well as attaching a scientific paper (please see below). If you would like to know more, I'd be happy to connect about my story, share what I've learned, and send links to further resources. (This email is, despite its length, the short version.) 

https://www.thenation.com/article/society/ssri-antidepressant-side-effects/

 

It's vital that mental health care professionals, as well as and including their various prescriber colleagues, educate themselves on this issue. It's the only way they will be able to responsibly inform patients/clients of the potential serious risks associated with taking psychiatric medication, so that patients may provide informed consent. In my case, I was first medicated when I was a minor, at an in-patient psychiatric hospital; at the time, I received a chronic diagnosis and was told I'd have to remain on medication for the rest of my life. I cannot adequately express my grief around this turn of events, and how it started me down a more than 25-year long path of psychiatric patienthood (incl. up to a dozen different diagnoses over the years) and being poly-drugged (with a total of dozens of different medications altogether, incl. every class of drug) -- my entire adult life to date. Unacceptably, my story is far from unique. As I write this I am overcome with sorrow over the lost years, mine and those of millions of others across the world. I rue the day I had my first psychiatric encounter and took my first dose of psychoactive medication. Now that I am no longer drugged, I am just beginning to reckon with the profound existential ramifications and tragic loss this whole experience entails. 

 

I cannot stress enough how devastatingly serious this iatrogenic illness can be. I'm currently in my fifth year of illness and am functionally disabled, basically bedridden and housebound. It's been years since I've been able to hold gainful employment, and since withdrawal syndrome is not recognized by the authorities, I do not qualify for disability. On a daily basis I suffer a wide variety of physical and mental symptoms, ranging from the profoundly uncomfortable to unimaginably horrific. The experience of recovering from psychiatric medications is exponentially worse than any condition I have ever, ever had to contend with leading to my being put on these drugs in the first place -- and I trust you know that's saying something.  

 

I hope you know that I hold you in the highest regard. I am so grateful for the time we worked together and how much you helped me through those years. I know you to be a caring, compassionate, consummate professional. This is why I'm reaching out to you today to share with you about my experience and, most importantly, to sound the alarm. You are not (as far as I know) a prescriber, but I am guessing you still work with a population who is either already taking these drugs or vulnerable to being medicated in the future. Whether or not to take psychopharmacological medication is not a trivial choice, and it is all too often treated lightly, with a cavalier attitude, as if these were standard-issue vitamin pills. The truth is that ingesting psychiatric drugs can have far-reaching, unpredictable, complex consequences that are beyond the scope of any known proactive restorative treatment, cure or reversal once things go awfully wrong. These drugs affect the entirety of one's whole body systems, from their broadest to subtlest functioning. Once withdrawal syndrome sets in, there's nothing to be done beyond possibly, to a limited extent, implementing some rudimentary symptom management; primarily, though, it's a matter of waiting for the brain and nervous system to heal themselves, which can take anywhere from years to upwards of a decade. It's brutal. 

 

Thank you for listening, and please spread the word. 

All my best to you,

____

 

*

 

Note: the scientific paper I refer to attaching is available here: https://pubmed.ncbi.nlm.nih.gov/33489088/

 

[dA2021]

I've saved this template as I think it may help me because with my autism I find it difficult to concentrate and if it's written it is traceable too.

[dA2021]

Thanks @Aerial

 

Dawn

[Ariel]

Some members have had difficulty opening the provided templates from links to text files, so I thought it might be useful to copy-paste the template letters' text in full for easy access. 

 

The following template letter of evidence is from @Caspur

 

 

 

8^th October 2018

 

 

Dear Dr *********,

 

I hope this letter finds you well.

 

I would like to draw your attention to the reports enclosed with this letter. On a couple of occasions, I have mentioned to you that I suspect that the terrible episode I faced late last year and for the first few months of this year was caused by withdrawal from stopping the venlafaxine I was taking. 

 

Following the last consultation I had with yourself on Sept 5th, you stated you thought I was susceptible to discontinuation syndrome, due to the apparent difficulties I am now experiencing trying to taper off quetiapine, and the possibility of including this information is a case report. For this reason, I have considered documenting my previous experience to make it clearer about how the episode occurred, the symptoms and the eventual recovery which you witnessed at close hand. To be honest, I don’t feel I need to do that now (although I will endeavour to do so for your information). To my mind, the enclosed reports provide adequate evidence that my assertion is probably correct. 

 

I would like to state that I think I was very lucky to be able to reinstate the medication and recover in such an extraordinarily short period (both for venlafaxine and quetiapine) having suffered such hideous symptoms when trying to stop both drugs. Many people cannot. But that still leaves me with the problem of safely stopping these medications, and indeed the same applies for many thousands of other patients.

 

I would also like to make it clear this letter is not intended as a personal criticism of you or your colleagues. Rather, I am just wanting to provide evidence that prescribed drug withdrawal is a very big issue for affected patients, for medicine and psychiatry. The approach to correctly diagnosing these problems and supporting sufferers must be reformed. Moreover, the acceptance by pharmaceutical companies this issue exists would be an even bigger step. However, my cynical mind doubts this will ever happen.

 

The enclosed reports and the associated in press paper are all referred to at http://prescribeddrug.org/

Recent activities around this groups work have made front page news in the Times and other national newspapers and is very prevalent on social media. The press release for the reports is here: http://prescribeddrug.org/many-doctors-failing-to-warn-patients-about-the-risks-of-antidepressants/

 

Lastly, once I have successfully tapered off the current quetiapine dose and I am fully stable and well, I would like to request your support for tapering the venlafaxine as well. To have the support of a psychiatrist whilst doing this would hopefully be a learning experience for both of us.

 

Yours sincerely,

 

<name>

 

Encl:

All-Party Parliamentary Group for Prescribed Drug Dependence (2018). Antidepressant Withdrawal:

a Survey of Patients’ Experience by the All-Party Parliamentary Group for Prescribed Drug Dependence. Published on http://prescribeddrug.org/ 36pp

 

All-Party Parliamentary Group for Prescribed Drug Dependence (2018). The Patient Voice: an analysis of personal accounts of prescribed drug dependence and withdrawal submitted to petitions in

Scotland and Wales. Published on http://prescribeddrug.org/ 17pp

 

Davies, J. & Read, J. (in press). A systematic review into the incidence, severity and duration of antidepressant withdrawal effects: are guidelines evidence based? Addictive Behaviours.

Abstract at https://pubmed.ncbi.nlm.nih.gov/30292574/

[Ariel]

The following template letter of evidence is from @TreeElf

 

 

Dear (DOCTOR’S NAME)

 

I am writing to provide some information that I feel may help you support me as a patient.

 

I have been weaning off/stopped taking (DRUG AND DOSE) since (DATE/MONTH/YEAR) and have experienced severe withdrawal, including extreme physical, mental and cognitive symptoms. (STATE WHERE YOU ARE IN THE W/D PROCESS AND WHAT YOUR INTENTIONS ARE GOING FORWARD, I.E. TO REDUCE FURTHER, STABILIZE, DISCONTINUE COMPLETELY ETC.) However, it is a very difficult and at times dangerous, process for which I need your support.

 

After some research and discussion with others who have experienced similar, I have been encouraged to provide you with evidence so you can help not only me, but all of your patients who are going through this with little to no support from anyone in the healthcare system.

 

You may have seen the recent media reports surrounding this issue. A well-known MP’s wife recently spoke out about the severe withdrawal she experienced after discontinuing a psychiatric medication. There are around ten recent articles I’ve seen across various publications, and one of many reports determined the following:

 

“Nearly half also said they experienced withdrawal symptoms for more than a year, and 30% claimed they gave up work due to withdrawal."  

http://www.pulsetoday.co.uk/clinical/clinical-specialties/mental-health/nice-antidepressant-withdrawal-guidance-misleading-and-without-evidence/20037572.article?fbclid=IwAR3_NZV0ZKhaSx5ghUQjcoX_EVF9REEL_NTdLki3GuBWTfF-KPVvsd8U5Ao

 

There is also an ongoing review of the effects of prescribed drug dependence by the UK government ( All Party Parliamentary Group for Prescribed Drug Dependence) after a request from Public Health England last year. PHE is an executive agency of the UK government to monitor and improve health and social care delivery in England. The committee working on this project consists of many people, ranging from psychiatrists, doctors and psychologists through to people who have recovered from medication withdrawal and now campaign for change. 

 

The details of the review are here: https://www.gov.uk/government/collections/prescribed-medicines-an-evidence-review  

 

I would very much appreciate if you could take the time to read this press release from the All Party Parliamentary Group for Prescribed Drug Dependence website: 

 

Millions at risk from antidepressant withdrawal, new review concludes

The Journal of Addictive Behaviors has today published a new systematic review which shows that antidepressant withdrawal is much more widespread, severe and long-lasting than indicated by current guidelines, with millions of antidepressant users in the U.K. potentially affected. ‘A Systematic Review into the Incidence, Severity and Duration of Antidepressant Withdrawal Effects: Are Guidelines Evidence-Based?’ was undertaken by Dr James Davies, University of Roehampton and Professor John Read, University of East London, on behalf of the All Party Parliamentary Group for Prescribed Drug Dependence. 

 

The review indicates that an average of 56% of patients who stop or reduce their antidepressants experience withdrawal symptoms, with 46% of these reporting their symptoms as severe.  Furthermore, most of the studies reviewed on duration found that a significant proportion of patients experienced withdrawal symptoms for more than two weeks, and that it is not uncommon for patients to experience symptoms for several weeks, months, or longer. According to one study, 40% of patients experience symptoms for at least 6 weeks, and another indicates that 25% experience symptoms for at least 3 months. 

 

Based on this data, the authors estimate that around 4 million people in England may experience symptoms when withdrawing from antidepressants, and around 1.8 million may experience these as severe.  In all, these findings contradict current national clinical guidelines (issued by NICE – the National Institute for Health and Care Excellence), which state that antidepressant withdrawal symptoms ‘are usually mild and self-limiting over about 1 week but can be severe’[1]. 

 

Dr James Davies: ‘This new review of the research reveals what many patients have known for years – that withdrawal from antidepressants often causes severe, debilitating symptoms which can last for weeks, months or longer. Existing NICE guidelines fail to acknowledge how common withdrawal is and wrongly suggest that it usually resolves within one week.  This leads many doctors to misdiagnose withdrawal symptoms, often as relapse, resulting in much unnecessary and harmful long-term prescribing.’  

 

Sir Oliver Letwin MP, chair of the APPG for Prescribed Drug Dependence: ‘This systematic review provides important new data on antidepressant withdrawal which will be considered by Public Health England as part of their current review into prescribed drug dependence.  The data suggests that existing medical guidelines in this area should be urgently updated to reflect the fact that antidepressant withdrawal is much more common, severe and long-lasting than previously stated. Furthermore, we hope that other medical bodies will take note of this new research, and update their own guidance accordingly.’ 

 

The review can be found at http://prescribeddrug.org/wp-content/uploads/2018/10/Davies-Read.pdf

 

Further articles were published in the Guardian and The Independent, as well as the following:

https://www.heraldscotland.com/news/16979395.scotlands-secret-addicts-the-patients-hooked-on-antidepressants-and-harmed-by-withdrawal/?ref=fbshr&fbclid=IwAR0tV-u06Jqo88Jpu4-LRC9lB2pX0Nw8UixEMSvuX4afFL8st-T9LyAWB1Y

https://www.dailymail.co.uk/debate/article-6236567/SARAH-VINE-given-antidepressants-cope-black-dog.html?fbclid=IwAR29N0KXyUbLqsOFwhF6ol0rV1fkcPG9ta_1y0nvv8VPQmV-3Pi3JjiwWz8

https://doctorterrylynch.com/prescribed-drug-dependence-psychiatrys-appalling-response-to-research-findings/?fbclid=IwAR0S8hIYqUrZENw_uD7nyHGjiOReS8dcwx4Nntdu4GJUtnKV8-qg0LMtOD0

https://www.bbc.co.uk/news/uk-scotland-45794690?intlink_from_url=https%3A%2F%2Fwww.bbc.co.uk%2Fnews%2Ftopics%2Fcwlw3xz04egt%2Fmental-health&link_location=live-reporting-story&fbclid=IwAR2rh09FCARSMCaDigDcJHnaC2fuj1C_qAk3-IyROXNM5wT40F9zirc7e1M

https://www.psychologytoday.com/us/blog/side-effects/201810/antidepressant-withdrawal-said-affect-millions?fbclid=IwAR3XVkOQ4R9TjDlF1lPssiPEQR_eA2uq3hdZjvikGHIDYQnwsA5_cBm-peQ

https://www.madinamerica.com/2018/10/results-world-largest-antidepressant-study-look-dismal/?fbclid=IwAR1RCSf6jgUfyggs6_Xp1MB2i3g-JpHROQRiEniYTs1MsKPHTCNrX8K4Lgw

https://www.youtube.com/watch?v=mNxBEpYSJEc&fbclid=IwAR0uOAUEU1XDtHoayZbEubap-FeHBQ3Z3xwDhJ_eTqubh8tktc1jOXIwXUM

http://www.greenmedinfo.com/blog/antidepressants-cause-severe-withdrawal-symptoms-hallucination-mania-anxiety-new-?fbclid=IwAR1FSwIJuau28EdiVLHKV2TOdu5BQET9th4bZCDygXsyUw3zg7591QuExAk

 

Aside from the media coverage and investigations, if you would like an honest picture of how protracted withdrawal syndrome affects real people, please see www.survivingantidepressants.org. There are countless stories of people, some with former diagnoses and many with little to no previous mental health issues, having their lives destroyed by antidepressant use and withdrawal. There is no denying the fact that most of these drugs are largely experimental in nature, there has been no research done in regard to long term effects, and we still don’t know how they work on the brain. (The ‘chemical imbalance’ theory has long since been debunked, yet is shockingly still used by many doctors and psychiatrists). It would be criminal to ignore this while still prescribing excessively, at the cost of potentially many lives. 

 

I believe that the withdrawal effects from this drug have caused severe symptoms that operate in a ‘windows’ and ‘waves’ pattern, and need the support of health care professionals especially when these critical episodes occur. That means, support that does not include simply increasing medication dosage, but the recognition that my condition is related to a withdrawal reaction from a powerful drug. Countless individuals are being told this is simply ‘a return of their original condition’, and are either prescribed more drugs or diagnosed with more severe illnesses and disorders. But the evidence points to this not being the case.  

 

I would really appreciate if you could forward this information to (HEAD OF DOCTOR’S PRACTICE), and any other professional who has the power to prescribe to patients exhibiting mental health problems. It is of paramount importance that people within the healthcare system begin to recognise, investigate and alter their care for the most vulnerable. It is no surprise that we have a mental health crisis on our hands, yet we are still prescribing these medications with little thought of the long term dangers. 

 

Many thanks for taking the time to read this, I hope I have your support in (WEANING OFF/COPING WITH W/D). My nervous system has become so sensitive that even a 1mg drop affects me severely for many months. If you read the numerous stories of other peoples’ experiences, you’ll find this is very typical and not at all out of the ordinary for those in withdrawal (<< EDIT THIS TO ACCOMMODATE YOUR OWN EXPERIENCE OR ADD ANY SPECIFICS). This information is vital if medical professionals are to do their job and provide real, well-researched, constantly evolving care for patients. I’m happy to speak to you further about this if you would like.

 

Kind regards,

(NAME)  

 

 

 

 

[Ariel]

The following template letter of evidence is from @FarmGirlWorks

 

 

November 26, 2018

 

This is a short letter to urge all of you to not prescribe or suggest SSRIs, SNRIs, or benzodiazapenes unless: 

•    absolutely necessary
•    short-term
•    closely monitored
•    patients are clearly told of mental and physiological risks

 

I have Protracted Antidepressant Withdrawal Syndrome (PAWS). It has been 20 months since I tapered sertraline. The taper was six weeks and far, far too fast. Thus, I am now in the unfortunate position of experiencing physical and mental symptoms while my destabilized CNS heals. I recovered from a brain tumor and believe this experience to be exponentially, logarithmically worse. I know antidepressants are often the first line of treatment tried for many health issues from post-partum depression, general anxiety, to smoking cessation. Too often the effects of getting off psychotropic substances is difficult, sometimes dangerous; for instance, most school shooters were on or going off an antidepressant. Also the dramatic increase of suicides in the US have been linked to increased usage of antidepressants. Patients need to be told of these dangers clearly before being given these powerful drugs.

 

There is no denying the fact that most of these drugs are largely experimental in nature, there has been no research done in regard to long term effects and most studies being funded or run by pharmaceutical companies, not independently. We still don’t know how they work on the brain (the ‘chemical imbalance’ theory has long been debunked, yet is shockingly still used by many doctors and psychiatrists).  Most individuals are being told this is simply ‘a return of their original condition’ and are either prescribed more drugs or diagnosed with more severe illnesses and disorders. But the evidence points to this not being the case. 

 

Aside from recent mainstream media coverage (New York Times, NPR, BBC, The Guardian, Time, and others) and medical journals (New England Review of Medicine and others), if you would like an honest picture of how protracted withdrawal syndrome affects real people, please visit SurvivingAntidepressants.org; it is a peer forum of people suffering PAWS with knowledgeable tapering advice as well as information about symptoms, finding meaning, relationships, media coverage, and (most importantly to me) Success Stories of people who got off antidepressants long-term. 

I stopped taking 75mg of sertraline April 1, 2017 after 5 years with a 6-month break after few years; the break sent me into withdrawal (I thought it was “relapse”) and I ran back to the pills. Since last April, I have experienced severe withdrawal consisting of extreme physical, mental, emotional and cognitive pain. 

 

Symptoms I’ve experienced include:
•    Agitation/anxiety
•    Severe depression
•    Suicidal/death ideation (not to be confused with actively making plans)
•    Depersonalization/derealization
•    Akathisia
•    Cognitive decline/ ‘cog fog’
•    Burning skin
•    Tears without crying, ‘leaky eyes’
•    Head pressure -- internal (not to be confused with headaches)
•    Headaches with the sensation that my brain is ‘stretching’
•    Anhedonia, feeling like a shell without feelings inside, walking corpse
•    Facial nerve twitches, pins and needles
•    Dizziness

 

I support my destabilized CNS with exercise, yoga, nutrition, magnesium, probiotics, low caffeine and histamine, the occasional Benadryl, and, most significantly, connect with others going through this process both online and in person. I hosted a support group last winter for people in withdrawal until symptoms forced me to stop.  A person I know has a high-powered transportation position and tried to withdraw but couldn’t and recently had to increase her dosage of sertraline.

 

I would not wish this horror on my worst enemy.

 

I am better than last year when I was in acute. There are still dark periods followed by fragile stabilization but I am hopeful there will be significant recovery in 2019. My new PCP is supportive and actually referred to my condition as ‘withdrawal’ instead of the pharmaceutical euphemism ‘discontinuation syndrome.’ She can’t help much as the die has already been cast but at least acknowledges what I am going through. She also didn’t try to diagnose me as “bipolar” or some other nonsense. Of course, my life situation is, and has been for several years, not the happiest, but through kundalini yoga, AA and no drugs, I strive to improve.

 

It is critical that people within the healthcare system begin to recognize, investigate and alter their care. Doctors could look at the powerful drugs as a spare tire -- use it for emergencies, but get off it as soon as possible. Recommending people stay on the spare tire for life is not a viable solution.

 

Much appreciation for all the work we’ve done together and I send this with respect and the hope that you hear what is being said.

 

Sincerely,