Future Research: Consortium to Discuss Theories etc.

This is a place to post research you have done on the topic along with your conclusions.
climb
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Future Research: Consortium to Discuss Theories etc.

Unread post by climb »

Hey everyone,

some of us are working in conjunction with some people with PFS and related organisations (not propecia help at this point).

One of the PFS sufferers who's heavily involved is a medical doctor and has received interest from published neuro-scientist(s) into trying to collaborate on applying for research funding for PFS and PSSD research within Europe and in helping with their PFS organisation.

They're keen to hold a consortium to discuss theories of PSSD and PFS and would like to engage with interested academics and scientists.
I will try to help them with contacting people that they think may be interested and have an appropriate background, but I think they're also quite interested in discussing theories with some people from the forum. If anyone here is interested in doing that to help them develop theories further, let me know, I'll put you in touch with the guy who is organising.

It's a good opportunity to get PSSD on the radar of some of these Neuro Scientists who are already sympathetic to PFS.
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squirtleSquirtle
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Re: Future Research: Consortium to Discuss Theories etc.

Unread post by squirtleSquirtle »

Climb, my good sir. That's wonderful to hear.

Please keep us updated with any news from this.

Although my research expertise is in the area of engineering, I have published many papers and am well read on the topic of PSSD and happy to participate.

Thanks for all your great work and dedication.

Warmest regards and with respect,
-Squirtle
20 mg Prozac, March-May, Septemeber-December 2015
Problems starting at discontinuation: very low libido, erectile dysfunction, watery semen, no morning wood
Current Problems: mild erectile dysfunction
sovietxrobot
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Re: Future Research: Consortium to Discuss Theories etc.

Unread post by sovietxrobot »

I'd like to participate. I am a career research scientist, my formal training is statistics, and I worked in neuroimaging for 10 years and genetics for the past 5.
Frog
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Re: Future Research: Consortium to Discuss Theories etc.

Unread post by Frog »

I’ll send this on to Meso to see if he’s interested. Would be great if he could discuss his theory
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Meso
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Re: Future Research: Consortium to Discuss Theories etc.

Unread post by Meso »

climb wrote: Thu Oct 01, 2020 10:21 am Hey everyone,

some of us are working in conjunction with some people with PFS and related organisations (not propecia help at this point).

One of the PFS sufferers who's heavily involved is a medical doctor and has received interest from published neuro-scientist(s) into trying to collaborate on applying for research funding for PFS and PSSD research within Europe and in helping with their PFS organisation.

They're keen to hold a consortium to discuss theories of PSSD and PFS and would like to engage with interested academics and scientists.
I will try to help them with contacting people that they think may be interested and have an appropriate background, but I think they're also quite interested in discussing theories with some people from the forum. If anyone here is interested in doing that to help them develop theories further, let me know, I'll put you in touch with the guy who is organising.

It's a good opportunity to get PSSD on the radar of some of these Neuro Scientists who are already sympathetic to PFS.
This is nice to read. Although it's exciting that such an opportunity is present, it's very important to also comment on the state of the PSSD community. Without a strong, larger community all those research chances become fleeting at best. We have like 100 members active at any given time, tops.

Perhaps it's not an exaggeration to say that the only real future this community has of tackling PSSD research-wise is through investing in mainstream awareness first and foremost.
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climb
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Re: Future Research: Consortium to Discuss Theories etc.

Unread post by climb »

Hi all,

@squirtleSquirtle
@sovietxrobot
@meso

Thanks for the interest in this. I have sent you all a pm with the email address of the guy who is instigating this. Please go ahead and get in touch to express your interest in participating.
Regardless of whether this does actually lead to research or not, it could still a very worthwhile exercise to further the understanding of PFS and PSSD and also awareness amongst the academic community.

Is anyone able to contact Ghost? I know he's busy with other things, but it would surely be beneficial for him to participate if this does come together.


Meso, you're correct that there aren't huge numbers of ACTIVE PSSD sufferers, which makes it difficult. That's why Dr Healy has encouraged us to work in collaboration with other groups (PFS, PGAD). Actually, the guy who had PFS who is instigating this is doing a really good job and is creating a foundation. They're really keen to work together with us on raising awareness of PSSD, PFS, and want to collaborate on joint strategies for this. I think that there might be a meeting next month to discuss the 'raising awareness' side of things, so if that happens, hopefully we can get people from the various PSSD groups to join.

I think that PSSD is far more common than the 'active' or even 'registered' members of the forum would indicate. Many people probably go to their doctor, get shut down, google their symptoms and find out there is no official treatment or recognition. They have little option but to try and get on with it or play it down. That's how things started off for me.
In the UK, there are often questionnaires sent by doctors surgeries to people with various medical conditions (like asthma) or who had certain treatments. I'd like to see what the responses were like if they organised a survey of those who are or have previously used anti depressants.
Firstprinciples
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Re: Future Research: Consortium to Discuss Theories etc.

Unread post by Firstprinciples »

@squirtleSquirtle
@sovietxrobot
@meso
@ghost

It's me, Simon from the PFS Association.
Great to see so many skilled fellows :)

What Climb is talking about are actually 2 things:

1.) PSSD/PFS Research group:
We have a small PSSD/PFS WhatsApp group which digs through research papers. We come up with theories of the pathogenesis of PSSD, PFS and PAS, try to find pro's, con's and possible study designs. We are also in contact with a few scientists. One of them is very eager to do research on PSSD, PFS. He is an Irish scientist. The Whatsapp group is small (5 people, different backgrounds medicine, molecular biology, self-learnt). Currently, the group has a good size. So I would rather make a second WhatsApp group and be the bridge between the two. The focus could be for example more on drafting papers, developing study designs and screening for scientists who could be valuable PSSD/PFS consortium members in the future. This format worked quite well, so I would be happy to see how far we could get with a second group.

2.) PSSD/PFS consortium:
As told above we are in close contact with an Irish neuroscientist. He investigates the influence of hormone withdrawal on the brain and mitochondria and is involved in identifying and bringing new compounds into trials. He works with transcriptomics, proteomics, metabolomics, cell cultures, genes/proteins silencing, fluorescence microscopy, proteins and RNA analysis, immunohistology etc.
He is very eager to investigate PSSD and has already given his students tasks to develop a model of PSSD and come up with a pharmacological/non-pharmacological solution (don't expect an outcome here, but fascinating how he involves his students). He would love to publish results of surveys on PSSD/PFS and raise awareness. He is also editor of several neuroendocrinological journals. He can offer mouse model studies, multi-omics in patients or even make post-mortem brain investigations, the possibilities are endless.
He proposed to create a PFS and or PSSD consortium (a group of scientists working on PSSD/PFS) and to apply for public grants. A small association that I know received 9 million Euros from EU H2020 for building a biobank and doing research on dementia in children. Public grants sometimes can be up to several million dollars/euros, therefore, I think that's a good step
If you have any scientists in your head that could be suitable for such a consortium I would be happy to hear from you. Also, if you read good studies have a look at the authors, maybe they would make a good match.
JLo22
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Re: Future Research: Consortium to Discuss Theories etc.

Unread post by JLo22 »

How about involving Dr. Amy Pearlman who has been very proactive with her research at The University of Iowa.


Amy Pearlman, MD

amy-pearlman@uiowa.edu

Director, Men's Health Program

Clinical Assistant Professor of Urology

Carver College of Medicine

University of Iowa Health Care
Firstprinciples
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Re: Future Research: Consortium to Discuss Theories etc.

Unread post by Firstprinciples »

JLo22 wrote: Mon Nov 16, 2020 2:08 pm How about involving Dr. Amy Pearlman who has been very proactive with her research at The University of Iowa.
Thanks a lot, I am in touch. She will participate in next month's roundtable
JLo22
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Re: Future Research: Consortium to Discuss Theories etc.

Unread post by JLo22 »

Raising awareness: The facts indisputably show that SSRI and SNRI antidepressants often cause sexual dysfunction in both men and women. I believe that for the sake of prescribers and patients our regulators need to act immediately to implement an effective warning system that can reduce the potentially catastrophic impact on the sexual lives of our citizens which arrives in the form of a prescription.

Respectfully,

Alan K. E. Cassels

Drug Policy Researcher

423 Stannard Avenue

Victoria, BC. V8S 3M6

Cassels@uvic.ca
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