Information on participating in Ulm research

This is a place to post research you have done on the topic along with your conclusions.
raven100
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Information on participating in Ulm research

Unread post by raven100 »

For those wanting to take part in the Ulm research that's currently being organised by sulawesi please would you provide a comprehensive list of the medication and supplements you have taken in the past, and underline the medications you feel you are currently suffering the side effects/post discontinuation effects of.

Also please provide the main symptoms of PSSD you are suffering with.

Please PM me instead of replying here, all information will be kept confidential

E.g. for me

Medication taken:
Sertraline 50mg for 1 month

Supplements:
Vit D, Vit C powder, omega 3 oil, magnesium, multivitamin

Symptoms:
Low libido, anorgasmia, weak erections, anhedonia/numb emotionally, pressure in forehead
PSSD Since March 2016 after 4 weeks on Sertraline
Conditioned worsened and peaked in April, since then possibly seen a 20% improvement
Would be useful for data collection if people could add their histories in their signature
Kinncrimson
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Re: Information on those wishing to participate in Ulm research

Unread post by Kinncrimson »

Why are you opening a thread regarding Sulawesis Study? What's that to you?

Let sulawesi do that on his own!

I think, you should delete this thread raven...
sjv16477
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Re: Information on those wishing to participate in Ulm research

Unread post by sjv16477 »

Did B.A. asks this information about partecipants?
Last edited by sjv16477 on Mon Feb 20, 2017 2:45 pm, edited 1 time in total.
raven100
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Re: Information on those wishing to participate in Ulm research

Unread post by raven100 »

sulawesi asked me to make this thread. If we go to the researcher and it turns out all 20 of the people we've nominated to take part in research are suffering multiple side effects for multiple non-SSRI drugs then it will harm our credibility. This is just to eliminate those who are suffering persistent effects of other drugs.

"raven, that is a good idea. You can ask all the participants in the forum in a new thread to make a list like this


a. my name: f.e. sulawesi

b. My most annoying PSSD Symptoms:
- f.e. no Libido at all
- f.e. genital anesthesia
- ...

c. All psychiatric medication that I took (and how long more or less)
"
PSSD Since March 2016 after 4 weeks on Sertraline
Conditioned worsened and peaked in April, since then possibly seen a 20% improvement
Would be useful for data collection if people could add their histories in their signature
raven100
Posts: 536
Joined: Wed Jun 08, 2016 11:36 pm
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Re: Information on those wishing to participate in Ulm research

Unread post by raven100 »

I apologise future-recovery I didn't realise it would be deleted permanently. You are worried that the sample we select will be skewed, which is fair enough. How about people PM me instead of posting here, and then I raise a flag with sulawesi only if it seems a significant number of people are suffering multiple non-SSRI drug induced symptoms. That way sulawesi's decision on who should take part won't be effected by seeing drug histories, yet we can avoid the case where everyone is suffering a host of non-PSSD symptoms that will create uncertainty in the fMRI results.
PSSD Since March 2016 after 4 weeks on Sertraline
Conditioned worsened and peaked in April, since then possibly seen a 20% improvement
Would be useful for data collection if people could add their histories in their signature
future-recovery
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Re: Information on those wishing to participate in Ulm research

Unread post by future-recovery »

raven100 wrote:That way sulawesi's decision on who should take part won't be effected by seeing drug histories,
Sulawesi decides nothing. The research team decides.
I have already told sulawesi weeks ago that B.A., etc need to differentiate who participates.

When/if the study is approved, the research team will tell us what to do. But it's not our job.

So everyone: Don't send anything to raven, he/she has nothing to do with the study. The research team will decide what to do, not raven
Last edited by future-recovery on Mon Feb 20, 2017 7:40 pm, edited 1 time in total.
German fmri study about PSSD could be possible! Criteria: http://www.pssdforum.com/viewtopic.php?f=5&t=1020
Send a mail to user sulawesi: sulawesi1@web.de
raven100
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Re: Information on those wishing to participate in Ulm research

Unread post by raven100 »

Research team decides the 20 who go out of all the info the volunteers provide? But surely we want to ensure that there are at least 20 of us not suffering multiple drug induced problems right? I don't see what the harm is me just making sure we have that. Like you said I have no part in this process so all I can do is ask that we try and find more volunteers if necessary.
PSSD Since March 2016 after 4 weeks on Sertraline
Conditioned worsened and peaked in April, since then possibly seen a 20% improvement
Would be useful for data collection if people could add their histories in their signature
sjv16477
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Re: Information on those wishing to participate in Ulm research

Unread post by sjv16477 »

In the meeting sulawesi can ask if B.A. wants only pure SSRIs pssd or simply pssd sufferer.
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Ghost
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Re: Information on those wishing to participate in Ulm research

Unread post by Ghost »

Let's look to Csoka et al., 2006 to help determine what criteria should be used.

I can see how getting a good applicant pool could be good to make us seem credible, AND we have to make sure that the researchers follow a protocol similar to Csoka et al., 2006.

Nothing done on the forum can replace that, but I think that in general they will pick only good applicants if they want their study to be accepted by the scientific community. If they didn't care (I'm not saying they would, just a hypothetical) and would just try to publish anything, then they aren't the researchers that we want to spend time and money on anyways.

Is it possible for everyone to wait to collect info for a bit until sulawesi has had a chance to meet with them in the coming weeks? If people have questions they should contact me, sonny, moderators, or sulawesi (who is in contact with researchers).

More than anything, we can't be fighting within ourselves, and need to stay focused on getting that study approved. I say we stay still until we've heard from researchers when sulawesi visits on the 8th of March.


From Csoka et al., 2006

"Among the respondents, three, whose
cases the authors judged to be highly credible as
based on the internal consistency of their posting
history to the group over a 2-year period, were
selected for and consented to be interviewed as per
University of Iowa IRB #200611715. The structured
interview protocol included systematic
questioning of concerns, symptoms, and changes
related to libido, quality of arousal and genital
sensitivity, quality of orgasm, and overall sexual
satisfaction during four baselines: most typical
functioning prior to SSRI use and prior to experiencing
the condition treated with SSRIs; during
the condition being treated but prior to SSRI use;
during SSRI use; and after discontinuing SSRIs.
Significant physical and mental health history,
history of any evaluations investigating alternative
causes for the persisting sexual dysfunctions, and
the impact of the persistent sexual problems on
quality of life were also explored. Outcomes of physical
exams, blood work, and other diagnostic
procedures and assessments were reported here
based on patient report."
- Medical Student & Friendly poltergeist - Lexapro Sept '14. [Hx] [PSSD Lab] [r/PSSD] [Treatment Plan] - Add "Ghost" in replies so I see it :)
krawt
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Re: Information on participating in Ulm research

Unread post by krawt »

Is it too late to help with the study/research? I've been away for months from the forum.
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