Writing to professors who research withdrawal issues

[Vonnegutjunky]

Hello all- so I got a few journal article and found a few people who are actively researching withdrawal syndrome- Giovanni Fava is a doctor from Italy who has been looking into withdrawal. He wrote a paper on why the term discontinuation syndrome was harmful and delivering - anyway I took it upon do myself to write him an email - I have not sent it yet as I would really like this groups input on the letter- I wrote it with my Paxil brain fog so anyone who might want to add to it since I feel like I am soaking for us all in an attempt to get some guidance

Here is the letter- preliminary rough draft- feel free to edit for grammar should you feel the need :




Hello Mr. Fava,
Please let me first apologize for not being able to write to you in your native language.

I have been taking 10mg of Paroxetine for the past 8 years. It served me well and this past year I attempted to discontinue the medication, with the help of my physician. Unfortunately during my tapering off of the medication, at about 5 mg I had what I could only understand as a nervous breakdown. I am 42 years old. I do not use elicit drugs, nor do I drink any type of alcohol. I am healthy and have only ever suffered anxiety and panic- I have never had to have surgery nor had to ever take any other medication. However upon my 5 mg dose, at about 3 weeks into it I began experiencing strange waves that would come and go, of suicidal thoughts. This of course scared me so I went to my doctor and she suggested I resume my medication. I have done that and the thoughts have subsided. I decided to do some research on antidepressant withdrawal. I realized after I went back on my medication that I was experiencing withdrawal as opposed to my original issues returning. I knew this because I kept feeling different than I had ever felt before- and the waves of these feelings would come and go throughout the day! Feeling fine for hours and then feeling suicidal for about 20 minutes. My question to you is: do you know of anything that can help with discontinuing ssris? Or do you know of any place that might be doing research on potential treatments for helping individuals who are ready to stop taking their antidepressants? There are thousands of people who are learning about brain chemistry, and learning about possible supplements that might help reduce the disabling side effects but I feel like it would be helpful to us to have someone guide us for some relief in this process. Please see some of our stories at www.survivingantidepressants.com


Thank you
Sincerely
J....
Fort Wayne, Indiana

Edited May 24, 2015 by mammaP
identifying information masked

[Altostrata]

I have written often to Dr. Fava and just about every researcher with a paper posted in the Journals forum.

 

Dr. Fava and his colleagues originated Belaise, 2012 Patient Online Report of Selective Serotoni...

[Vonnegutjunky]

So they have no answers yet as to the possible reasons or ways to recover aside from slow? Supplements?

 

Thank you alto for all you have already done xoxo

 

I hope someone finds something that can help everyone.

 

Should we keep writing to universities to see if some one will start a clinical trial?

[Altostrata]

Researchers will always want to know where funding for a study will come from.

 

Since the pharmaceutical companies spent huge amounts of money establishing their psychiatric drugs as the standard of care, few researchers are interested in adverse reactions. They may never work for those pharmaceutical companies again.

 

I post everything I find on this site. So far, I don't know of any study about the best treatment for withdrawal syndrome.

[Vonnegutjunky]

What if we did a kickstarter? We could do our own study- hire our own researchers - professors ? I could write grant proposals- I know we could do this - I have a graduate degree - I know how to get studies started- but all of the research I have been involved in is psychological not neurobiology- so there is a lot I absolutely do not know from a biological perspective - but I know this is possible if we have enough people -

[westcoast]

I think a survey to establish the prevalence would help. Just how rare is this? Why do so many people stay in drugs that don't work? (Withdrawal probably.) if it is thought to be very rare, there is not much motive to develop treatments.

[btdt]

The true number of people who are having problems with these drugs and being told it is there illness would likely be an issue when trying to source the "true" numbers in a survey.  When a person has trouble with a drug they go to the doctor that gave them the drug if they are told it is their illness another yet to present part of the illness they believe it.  I did I believed my doctor all the time because he was after all the doctor who should have known everything ...or so I thought. Having an avenue to access the people would be another problem where to find the people I doubt doctors are going to give you a list of names if all the people came from here they would call foul when the results were presented.

 

On the topic of believing our doctor I have learned doctors only know what they are told based on that they can be wrong.  here is a doctor who is speaking out who says he was wrong... not something that happens every day and he explains how and why... Since he is willing to present this maybe he would be willing to hand out surveys to his patients one never knows

peace

 https://www.ted.com/talks/ben_goldacre_what_doctors_don_t_know_about_the_drugs_they_prescribe?language=en

[Laura1981]

I was thinking we could do "Amnesty International"-style letter writing actions. We could write to the minister of health of our respective countries or to other official bodies, arguing that ADs are increasing long term cost of healthcare and social welfare.

 

We could also try to find out who makes the prescribing guidelines for doctors and write to those people. I know that in the UK, there's a book called "Maudsley prescribing guidelines" that doctors rely on. I was thinking: if we could write to the editors, tell them our stories. Maybe we'll find a human being out there who takes our ruined lives to heart and tries to change something.

[westcoast]

Or write and ask them what it  is costing, and then go ballistic. If we acted like a mob of angry taxpayers they' might listen.

[Laura1981]

I don't think they know what it is costing, but money is always a good argument. If we could somehow figure out the cost of antidepressants to society, the media would probably be interested. The problem is how do you quantity.

[westcoast]

In the us there are figures for emergency room visits sorted by class of drug. then there's what public & private health insurers spend, which comes from customers or tax payers. I've wonder why they do it. Abilify is the top-selling drug of any kind in the usa!

 

BTW my previous post didn't emphasize what I meant, which is to "innocently" ask how much is spent. If they could later be lead to see that many or most users want off but can't tale withdrawal, it would be impressive.

 

were you thinking of one latter signed by many, or lots of letters?

[Laura1981]

I found a study that lists US figures, but they sound completely underestimated. That's probably because of misdiagnosis. Doctors don't believe their drugs are causing any harm.

http://www.ncbi.nlm.nih.gov/pubmed/25006837

 

Regarding the letters: I would think: we pick out a target and write one letter each, so that the target receives many letters about the same subject. We would need to figure out who we want to write to. Who would reasonably be able and willing to do something about the situation (fund research, implement laws etc...) but is currently unaware of the mess.

 

Here's some guides on letter writing:

http://www.wluml.org/node/5603

https://217989-www5.dosomething.org/actnow/actionguide/how-organize-a-letter-writing-campaign

[btdt]

You know there was once a effexor petition with 20 some thousand people signed it could be a good guide for a petiton in 2010 it had 23,902 signatures.... that is a lot of letters. Wayback fails after that and I can't see the number of signatures for 2011

 

It is gone now I had to go to the way back machine to find this bit. To:  Effexor's manufacturer, Wyeth-Ayerst Laboratories

Effexor Petition 

We the individuals listed below have electronically signed this petition for the purpose of making it known that consumers treated with the SSNRI antidepressant Effexor have or are experiencing "often ignored" serious side effects of this medication. And that thousands of patients in the US and worldwide are unable to discontinue Effexor or even reduce dosage due to the rapid onset of severe withdrawal-like symptoms which often initiates before a patient begins dose reduction due to the short half-life of Effexor. Documentation of which the manufacturer, Wyeth-Ayerst has gradually disclosed now some 8 years after this drug was first licensed, being aware of these problems all along but failing to communicate this knowledge to the public and the medical community. 

Wyeth-Ayerst misleadingly advertises through its Effexor labeling that only drug abusers are at risk of physical and psychological dependence, and withdrawal problems when tapering back or abruptly discontinuing Effexor usage. Wyeth-Ayerst knows such representations are false, and that all patients, including patients not having a history of drug abuse, are susceptible to withdrawal problems after tapering back or abruptly discontinuing Effexor. 

Effexor as prescribed to us by our doctors resulted in anxiety and agitation, sexual dysfunction, hypomania, weight gain, and many other debilitating adverse reactions such as insomnia and bizarre vivid nightmares, deterioration in eyesight, high blood pressure, dehydrating night sweats, memory problems, thyroid disorders which can cause the very depression this medication was first prescribed to treat, among other serious side effects. These iatrogenic (medication induced) effects were ignored or underplayed by its manufacturer, which resulted in our overall inability to function normally for lengthy periods of time during usage and attempted dose reduction. Nor had proper disclosure been made that benzodiazepines had been co-prescribed during clinical trial in order to minimize the agitation that the manufacturer had recognized this medication could cause. Effexor in many cases is not the "stand alone" remedy that it has been advertised to be. Patient in accepting treatment with Effexor are not being forewarned that by their use of Effexor -- sleeping medication, blood pressure medication, and anti-anxiety medication might become a concurrent necessity. Thus the mis-informed consumer totally unexpectedly finds themselves being prescribed many more drugs than they ever anticipated needing. 

We all know that taking prescription medication involves some risks and that with each medication some percentage of patients are likely to experience adverse results. We strongly feel however, that the risks involved with the usage of Effexor is greater than the medical community and the public realize, certainly greater than we were ever told, and that Wyeth-Ayerst knew of these risks but failed to communicate those risks to the consumer and their physicians. 

Our lives have been negatively, unexpectedly, and undeservingly impacted by the antidepressant Effexor. We were not given full disclosure of this medication's known adverse effects, and many of us suffered greatly because of this failure to warn. Therefore, our purpose with this petition is to share information that we have gathered so that others will have adequate knowledge and be able to fully discuss options and risks of the use of Effexor with qualified medical professionals before they make any final choice regarding initiating these types of medications. Thereby being able to be a knowledgeable consumer and make the appropriate decisions together with their physicians in regards to their own medical treatment and might be spared the suffering we have experienced first hand. 

By this petition let it be made clear that we are not advocating the non-use of Effexor because this medication's possible benefits to the public at large is beyond our scope of knowledge to the extent that each individual now considering the use of Effexor has informational benefits we did not, now that more medical information regarding Effexor has been released to the public. Now that others will have the benefit of this information where we did not, and the benefit of important public websites such as Steve Whiting's -- www.effexorfx.freeuk.com, each person must take responsibility to make their own decision regarding the use of these types of medications, assisted by proper advise from a qualified medical professional, fully knowledgeable of Effexor's profile and side effects. 

But as individuals, and their are a significant number of us, we have found that the disclosure regarding the side effects and efficacy of Effexor that we were given and which is still being propagated, is significantly misleading to the consumer and the medical community at large. This cannot continue and we hope you will support us with our pleas to Wyeth-Ayerst for full and accurate disclosure. 

Sincerely,

The Undersigned

[btdt]

www.effexorfx.freeuk.com

the above site is gone I looked up the guy with the word effexor and got this

http://www.theguardian.com/world/2001/sep/06/medicalscience.businessofresearch

apparently he sued or is suing... guess it takes a long time, so does wd maybe he will be done wd by the time the court hears his case 

found it on way back called back from the dead good title.. 

http://web.archive.org/web/20000620045253/http://www.effexorfx.freeuk.com/

 

I think he likely settled out of court no record of the case not admitting to stuff..is how they do it then he gets a gag order part of which means taking down the site... every man for himself... man overboard... sell out ya but who could blame him

[Laura1981]

Wow, I like that petition. But it has gone to the manufacturer who would probably be the last to do something about the situation.

 

I'm still thinking who to write to. I'll keep investigating a bit more. There has to be decision makers somewhere who release the guidelines for doctors.

[westcoast]

Lawmakers? We could find out which ones have personal interest in this.

 

Media people who buck the trends?

• Dr. Oz is a thought. He was just called out by peers for being a flake on TV, but there's more to it. For one , he does not support ADs, and his flaky stuff is minor IMHO. And guess who lightly trashed him in a letter to NYTimes? Lieborman ! (nasty man, former APA pres, idiot; see Levin on MIA last week.)

I wonder if there's any research on what kind of letters get action?

 

What helps get a reply, or even some action? I can imagine some letters get "binned" upon opening.

--emotionality

--nature of emotion (sad, happily recovered, angry, etc)

--personal experience vs general concern?

--recovered or not recovered?

--complaining, asking, or alerting?

--citing "experts" and/or published research

--cost/benefit in money, health/happiness

 

W

[westcoast]

"decision makers who release guidelines" -- good point. Where does a GP or a psych specialist get info? Do they read Lancet, JAMA, etc? "KOLs" in their fields? (key opinion leaders)

 

I bet there's research on this...adding it to the list, near the top.

 

BTW, I lack a good system for organizing the stuff I run across that looks important or inspires curiosity. I've been pasting links and keywords into a Notes app. Is anyone using something more formal?

[westcoast]

Not free. Maybe their findings are discussed on open-access sites, though.

 

 

Description:

With all the resources they need in one place, Essential Science Indicators can determine the influential individuals, institutions, papers, publications, and countries in their field of study — as well as emerging research areas that could impact their work.

 

This unique and comprehensive compilation of science performance statistics and science trends data is based on journal article publication counts and citation data from Thomson Scientific databases.

 

It is an ideal analytical resource for policymakers, administrators, analysts and information specialists in government agencies, universities, corporations, private laboratories, publishing companies and foundations, as well as members of the scientific press and recruiters.

 

http://thomsonreuters.com/en/products-services/scholarly-scientific-research/research-management-and-evaluation/essential-science-indicators.html(see link to pdf)

[Laura1981]

Media

• Good idea! I don't know Dr. Oz. Is he influential? John Oliver could be of help too.

 

Lawmakers:

• That's a good idea. I have no idea how to get a hold of them though apart from the petition to the European Parliament I logged.

 

"decision makers who release guidelines" -- good point. Where does a GP or a psych specialist get info? Do they read Lancet, JAMA, etc? "KOLs" in their fields? (key opinion leaders)

• In the UK & Ireland, the most influential system is a system called "NICE guidelines". I could try to find a board member and we could write to them. But then again, we would be fighting in Europe, not in the US. But I'm thinking that Europe is maybe a good place to start because sometimes it seems like our defence against corporate interests is still a bit higher than over there in the US.

Would you be interested in trying one of these options? I could PM you and we could do a "pilot" and see if we even get a reply from somewhere. If it works, we can loop in more people.

[btdt]

Not free. Maybe their findings are discussed on open-access sites, though.

 

 

Description:

With all the resources they need in one place, Essential Science Indicators can determine the influential individuals, institutions, papers, publications, and countries in their field of study — as well as emerging research areas that could impact their work.

 

This unique and comprehensive compilation of science performance statistics and science trends data is based on journal article publication counts and citation data from Thomson Scientific databases.

 

It is an ideal analytical resource for policymakers, administrators, analysts and information specialists in government agencies, universities, corporations, private laboratories, publishing companies and foundations, as well as members of the scientific press and recruiters.

 

http://thomsonreuters.com/en/products-services/scholarly-scientific-research/research-management-and-evaluation/essential-science-indicators.html(see link to pdf)

I made a long post about this and it disappeared why does that happen WC do you know tends to be important stuff that is hard to think thru always...poof

 

it said

back up there a bit... 

Since the studies are manipulated starting with design your not putting the correct data in so can't get the right answer out... prozac.. for instance could only get passed the FDA with changes to the trial design ..re. categorizing side effects to make them seem harmless or less harmful and by adding a benzo... and nobody knew any difference till it came out at trial was gag order and leaked anonymously ...years latter..

 

one of the scientists says tell me what you want and I will design the study so you get those results that is what makes him worth the big bucks...read this recently ...think it involved johnson and jonson if you want to look for it... 

 

So garbage in garbage out... you can't get the right answer with bad data all you get is an answer... 

 

No matter what the truth has to be in the data to start with or it is useless...imho

[Muddles]

Laura - count me in. I'll help or participate in anything.

[Laura1981]

Amazing! I'll write something up in the coming days.

 

I may run it by you and westcoast before sending via PM, just to see if there's anything we can improve in the wording. I'll keep you posted about the progress.

[Laura1981]

@muddles: Your messenger seems to be turned off. Can't send you the draft. Let me know in case you want to read it. I totally understand if not, I know wd doesn't make reading the most pleasurable activity.

[oskcajga]

What if we did a kickstarter? We could do our own study- hire our own researchers - professors ? I could write grant proposals- I know we could do this - I have a graduate degree - I know how to get studies started- but all of the research I have been involved in is psychological not neurobiology- so there is a lot I absolutely do not know from a biological perspective - but I know this is possible if we have enough people -

 

Honestly, the best information we have on the subject is here on the internet.  The success stories and the people who wrote them are basically science's only answer for what helps withdrawal symptoms and how people recover.  For this reason, it was a HUGE MASSIVE and dramatic loss to the community when Paxil progress.org closed down.  That website has a tremendous amount of anecdotes from many many people all over the world for the past 10 years or so.  SA is also a good website, but PP had been around since like 1999 and just contained so much information.

 

I remember reading stories from people that had gone through ssri withdrawal who went onto become doctors, etc etc etc. 

 

Who ever the administrator was for that website did the world a HUGE disservice by not selling it or allowing the members to run it independently.  Very selfish.

 

Hopefully SA will not shut down, because I'm not aware of any other resources out there for people like ourselves.

[btdt]

Lawmakers? We could find out which ones have personal interest in this.

 

Media people who buck the trends?

• Dr. Oz is a thought. He was just called out by peers for being a flake on TV, but there's more to it. For one , he does not support ADs, and his flaky stuff is minor IMHO. And guess who lightly trashed him in a letter to NYTimes? Lieborman ! (nasty man, former APA pres, idiot; see Levin on MIA last week.)

I wonder if there's any research on what kind of letters get action?

 

What helps get a reply, or even some action? I can imagine some letters get "binned" upon opening.

--emotionality

--nature of emotion (sad, happily recovered, angry, etc)

--personal experience vs general concern?

--recovered or not recovered?

--complaining, asking, or alerting?

--citing "experts" and/or published research

--cost/benefit in money, health/happiness

 

W

http://www.doctoroz.com/videos/truth-about-antidepressants-pt-1

 

I thought there was something he did but I could not find the video I missed the show but just watched it now.  

There is a write up and lots of comments .. since he mentioned wd I did a search of the page to see if SA was mentioned it was not. 

http://blog.doctoroz.com/dr-oz-blog/antidepressants-are-they-right-for-you

[westcoast]

I saw this while looking for something else. About the professors who tried to get him fired. One had been in prison for medicare fraud.

 

http://jezebel.com/yet-another-dr-oz-shitstorm-is-brewing-1699267080

[oskcajga]

I have written often to Dr. Fava and just about every researcher with a paper posted in the Journals forum.

 

Dr. Fava and his colleagues originated Belaise, 2012 Patient Online Report of Selective Serotoni...

 

Alto, out of curiosity what have some of the professors said in your conversations?

[Laura1981]

I've opened a thread for some coordinated European letter writing: 

http://survivingantidepressants.org/index.php?/topic/9308-europeans-take-action-with-letter-madneess/