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Take part in new Post-SSRI Sexual Dysfunction (PSSD) study

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A respected research team is conducting a large follow-up study to a just-published paper (abstract here Ben-Sheetrit, 2015 Post-SSRI Sexual Dysfunction: Clinical Characterization and Preliminary Assessment of Contributory Factors... )

 

 

This has came to me from another forum.

 

I think is important that all of us will take part in the research if we are able to,

 

Thanks

 

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Hello everyone,

 

The article "Post-SSRI Sexual Dysfunction (PSSD): Clinical Characterization and Preliminary Assessment of Contributory Factors and Dose-Response Relationship" has recently been published in the Journal of Clinical Psychopharmacology, a respectable medical journal with an impact factor of 3.243, and one the most popular journals dealing with psychiatric medications (psychopharmacology). This is the largest work about PSSD to date and an important step forward in raising awareness to PSSD.

 

On behalf of the research team I'd like to thank each and every one of you who took part in the survey. You made a brave effort, and it couldn't have happened without you.

 

Now it's time to move forward. We want every doctor and every psychiatrist to know about PSSD. We want to prevent PSSD, and to be able to raise legitimate funding for research about PSSD mechanism and treatment.

 

It all depends on being able to convince the medical community. The major obstacles are (1) not enough awareness and (2) arguments for alternative explanations to PSSD, like other medical and psychiatric conditions that can cause sexual dysfunction.

 

In order to present a convincing argument against alternative non-pharmacological explanations, we need a large study that includes comprehensive medical assessment of each participant, carried out and documented by a medical doctor, including:

● Full medical history

● Physical examination

● Comprehensive blood tests, including a CBC, comprehensive metabolic panel, relevant hormone levels

● Standardized evaluation of sexual dysfunction

● Psychiatric assessment

 

Without this, the chances of getting PSSD recognized are unfortunately low. As long as PSSD is dismissed in favor of confounding factors, it's hard to move forward.

 

We are inviting you to take part in a multi-center study about PSSD, which is due to start in about 2 months from now after it will be authorized by an Institutional Review Board (IRB). We will find and contact psychiatrists with interest in SSRI side effects and/or sexual dysfunction from different countries and cities around the world, to which persons with PSSD could approach and undergo comprehensive medical assessment (as outlined above) using a standardized research protocol, which will eventually be analyzed using data from all the centers.

 

We need to know who is willing to take part in this important endeavor. If you want to make a difference and help establish PSSD is a legitimate disorder, help prevent PSSD and promote further research on PSSD mechanism and treatment, this is it.

 

If you are willing to participate in the study, contact the research team at joseph.ben.sheetrit@gmail.com stating your first name, age, name of the medication that was involved (e.g. Citalopram) and the country and city in which you currently live (this is very important so we can locate a doctor working in your city or nearby). We must emphasize again that the study can only take place after it is approved by an IRB; this is only a list to see who is interested in participating. Recruitment for the PSSD multi-center study will be open until the 20th of September 2015. Only if we have enough participants will we be able to carry out this important study. It's up to you.

 

Just so we are very clear about this. Your data is strictly confidential. No details that may expose your identity will ever be published. No data will be handed to any third party without your written consent. As a medical doctor I'm obliged to this by both law and ethics. We have worked hard to publish the survey research, and we will continue to work together to promote research and treatment for PSSD.

 

Sincerely,

Joseph Ben-Sheetrit, MD, Geha Mental Health Center, Petah Tikva, Israel

Lead researcher and first author of the PSSD survey publication.

Antonei B. Csoka, PhD, Department of Anatomy, School of Medicine, Howard University, Washington DC, USA   

 

Dr. Csoka published the first PSSD case reports in the medical literature and coined the term "Post-SSRI sexual dysfunction". He published the first article about a possible epigenetic mechanism for PSSD. 

Dr. Csoka is part of the research team and one of the authors of the recent survey publication. 

 

PSSD Research Team

 

 

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AppleOfSodom

Thanks Alto.

Everyone with PSSD apply, please.

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nz11

Applied

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Futurerecovery

This thread is really important. It should be also visible in other forum categories. Inform everyone you know about it!

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Futurerecovery

I think people with Post-SSRI PGAD should take part in this study, too!

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Hopefull

Done. I just have. I hope something good comes out of this. Thank you Alto for letting us know.

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akakoom

signed up

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Broken

So I volunteered and this was their reply.

 

 

"I am sorry but at this point the study is only intended for treatment-emergent side effects and not withdrawal symptoms (persistent or not)."

 

Sincerely,

 

PSSD Team

 

 

...and I responded with the following.

 

 

PSSD? Post (after cessation) SSRI Sexual Dysfunction.

 

The pharmaceutical industry are aware of sexual dysfunction while taking an SSRI and it's one of the many side effects listed on the patient information leaflet that accompanies the medication.

 

http://www.drugs.com/sfx/celexa-side-effects.html

 

It doesn't however warn the patient of the potential long term and in some cases permanent sexual side effects that can persist following discontinuation.

 

You should change the name of your study and your research team, it's not appropriate.

 

What's PGAD if not PSSD and a side effect following the discontinuation of an SSRI?

 

What's the purpose of your study exactly?

 

I'm confused.

 

Regards

 

Me

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Futurerecovery

That's really weird. Maybe their secretary made a mistake? Let us know what they answer.

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Hopefull

I am sorry, but this study seems to be BS! I got a reply from Dr S, "Sorry we are only recruiting people with continous PSSD problems from SSRI's"! "And not the people whose symptoms have resolved"! Go figure! Broken is still struggling with PGAD symptoms, I had the symptoms for at least 6 months and still no go! This is absolutely ridiculous! I am beginning to wander if the study is even legitimate?

 

F me dead, I don't get it! ????

Sorry for the rant. Dr are d...h...s! Arhhh!

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Futurerecovery

If they don't want to recruit people who don't have PSSD anymore, that's comprehensible. They want that PSSD gets recognized by showing that PSSD isn't psychosomatic or something else. I guess it's problematic to show that when the participants don't have PSSD anymore. For example a blood test would make no sense and would be probably useless.

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Hopefull

Broken is still experiencing PGAD symptoms, but he has been rejected, because the study is intended only for "treatment emergent symptoms ", and not for the "withdrawal symptoms ", from SSRI's!

This is absolutely absurd! We got PGAD symptoms from being treated with SSRI's drugs, " treatment emergent " or not!

We did not pluck it from the thin air!

Fine, if they do not wish to include people whose PGAD symptoms have resolved, but what about people who are still experiencing it?

What is the difference between people getting PGAD symptoms while being on SSRI's or getting of it? It is still a "treatment emergent" symptom!

What is the study going to prove anyway?

We already know that we have been stuffed up by these drugs!

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Futurerecovery

What is the study going to prove anyway?

We already know that we have been stuffed up by these drugs!

They explained it:

"We want every doctor and every psychiatrist to know about PSSD. We want to prevent PSSD, and to be able to raise legitimate funding for research about PSSD mechanism and treatment."

The answer which Broken got doesn't make sense. I guess it's a mistake. Or maybe they don't want PGAD cases or they don't want PSSD cases where the first symptoms began only after the treatment(more difficult to convince the medical community). Though I don't understand it because many PSSD cases experienced a worsening of their sexual dysfunction after stopping the treatment. So this isn't much different than symptoms which started only after the treatment.

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Hopefull

I don't know Furniturerecovery. They obviously don't want patients who have experienced PGAD from SSRI's during or after treatment, which is ironic! They want ,"every doctor and psychiatrist to know about PSSD",yet people who have experienced PGAD symptoms induced by SSRI'S are obviously not "qualified ", candidates!

PGAD is a PSSD symptom for those of us who took SSRI's poison.

People who have not experienced PGAD don't know what hell hole that is! Those doctors should take SSRI's crap themselves, and do a PSSD study. Let's see how they fare.

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AppleOfSodom

A lot of PSSD cases begin only after the cessation of treatment, so I hope it's a mistake that they're only recruiting people whose symptoms have started while on the drugs.

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Futurerecovery

Just got a mail from Mr. Ben-Sheetrit.

They need more participants! They extend the enrollment!

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Futurerecovery

From the yahoo group:

 

Hello everyone,

 

We have 85 enrollments so far for the PSSD study, which is very good – but we need more.

We are extending the enrollment for the study until further notice, which means you can still get enrolled in the study until announced otherwise.

 

The Institutional Review Board (IRB) is due next month, and the study can only begin after its approval. Please note however that IRBs sometimes require amendments for study proposal before it is approved, which can take some more time. We will be in touch and keep you updated from time to time until the study begins.

 

Also, we are making some changes in the study design, to make it more feasible and practical to carry out. After the study is approved, every patient agreeing to take part in the study will need to send us a short letter from his or her doctor, which could be a general practitioner, a psychiatrist, or any other doctor who knows you, which states your general medical and psychiatric diagnoses and current medications (which is quite standard and should not be very difficult to obtain). We will also need you to send some blood tests results, but that’s all we’ll need regarding the medical data – all the rest of the research will be done using video interviews and questionnaires.

 

The in-depth internet video interviews (e.g. via Skype) will give you the opportunity to tell us in detail everything that you feel is important about your condition and will help us to gather valuable information about PSSD, the various symptoms that co-occur with PSSD, treatments you have already tried etc. We think it’s the best way to overcome the geographical distances between us, which obviously span the entire world, without requiring you to travel or spend money and without losing valuable data that is obtained only in person-to-person clinical interviews.

 

New enrollers – please email us at joseph.ben.sheetrit (at) gmail.com stating your first name, gender, age, city and country of residence, the medication(s) implicated, whether you’ve quit the medications or are still taking them, and when did the sexual problems that you have today begin with regard to taking the drugs (have first noticed it before taking the drugs, during drug treatment, or only after stopping the drugs?).

 

Sincerely,

 

Joseph Ben-Sheetrit, MD

and the PSSD Research Team

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nz11

8th Nov 2015 update,

 

Hello everyone,

 

I am glad to announce that the study has been officially approved by the Institutional Review Board of the Geha Mental Health Center.

There are some preparation we have to make before the study can take place, and I will email you again once the study is about to begin.

Please note that we are still accepting new enrollments if you know others who may be interested.


Sincerely,

Joseph Ben-Sheetrit, MD

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AppleOfSodom

Just to remind you that the enrollment for this study is still open. Anyone with PSSD please apply!

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Happy2Heal

i clicked on that link and nothing happened, is the study closed?

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Futurerecovery

There is no link. You have to send a mail to Ben-Sheetrit. As far as I know you can still participate.

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AppleOfSodom

The study on PSSD oficially starts today. If someone is not enrolled I would advise to send an email RIGHT NOW. Maybe you can still get accepted.

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Futurerecovery

From the yahoo group:

Recruitment ends at the 8th of January 2016.

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btdt

So I volunteered and this was their reply.

 

 

"I am sorry but at this point the study is only intended for treatment-emergent side effects and not withdrawal symptoms (persistent or not)."

 

Sincerely,

 

PSSD Team

 

 

...and I responded with the following.

 

 

PSSD? Post (after cessation) SSRI Sexual Dysfunction.

 

The pharmaceutical industry are aware of sexual dysfunction while taking an SSRI and it's one of the many side effects listed on the patient information leaflet that accompanies the medication.

 

http://www.drugs.com/sfx/celexa-side-effects.html

 

It doesn't however warn the patient of the potential long term and in some cases permanent sexual side effects that can persist following discontinuation.

 

You should change the name of your study and your research team, it's not appropriate.

 

What's PGAD if not PSSD and a side effect following the discontinuation of an SSRI?

 

What's the purpose of your study exactly?

 

I'm confused.

 

Regards

 

Me

 

 

From the yahoo group:

 

Hello everyone,

 

We have 85 enrollments so far for the PSSD study, which is very good – but we need more.

We are extending the enrollment for the study until further notice, which means you can still get enrolled in the study until announced otherwise.

 

The Institutional Review Board (IRB) is due next month, and the study can only begin after its approval. Please note however that IRBs sometimes require amendments for study proposal before it is approved, which can take some more time. We will be in touch and keep you updated from time to time until the study begins.

 

Also, we are making some changes in the study design, to make it more feasible and practical to carry out. After the study is approved, every patient agreeing to take part in the study will need to send us a short letter from his or her doctor, which could be a general practitioner, a psychiatrist, or any other doctor who knows you, which states your general medical and psychiatric diagnoses and current medications (which is quite standard and should not be very difficult to obtain). We will also need you to send some blood tests results, but that’s all we’ll need regarding the medical data – all the rest of the research will be done using video interviews and questionnaires.

 

The in-depth internet video interviews (e.g. via Skype) will give you the opportunity to tell us in detail everything that you feel is important about your condition and will help us to gather valuable information about PSSD, the various symptoms that co-occur with PSSD, treatments you have already tried etc. We think it’s the best way to overcome the geographical distances between us, which obviously span the entire world, without requiring you to travel or spend money and without losing valuable data that is obtained only in person-to-person clinical interviews.

 

New enrollers – please email us at joseph.ben.sheetrit (at) gmail.com stating your first name, gender, age, city and country of residence, the medication(s) implicated, whether you’ve quit the medications or are still taking them, and when did the sexual problems that you have today begin with regard to taking the drugs (have first noticed it before taking the drugs, during drug treatment, or only after stopping the drugs?).

 

Sincerely,

 

Joseph Ben-Sheetrit, MD

and the PSSD Research Team

" whether you’ve quit the medications or are still taking them, and when did the sexual problems that you have today begin with regard to taking the drugs (have first noticed it before taking the drugs, during drug treatment, or only after stopping the drugs?)."

 

Seems he should take you  Broken I don't get it.

 

There is always the off chance they have no awareness of your specific issue perhaps they are expecting only can't orgasm or loss of feeling or loss of interest because that is all they know so all they are will to look for... I have had all this and would have  PGAD  added under the heading of PSSD but they are a few decades at least behind the curve so don't have a clue I guess... 

 

I would also add to this list Orgasm Headache 

http://www.migrainesurvival.com/orgasmic-headaches

 

something to look forward to at the end of the road...sorry.. don't shoot the messenger... I have not seen much talk of it on here so far I guess time will tell.

peace

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