A Way to Request some Research

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climb
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A Way to Request some Research

Unread post by climb »

Hello everyone,

A Way to Request some Research -

There is a method in the UK by which members of the public can propose specific research questions for the National Institute of Health Research.

Therefore, I suggest that we all complete the form on the NIHR website with exactly the same request for research (this could be limited to those with UK based IP addresses). The form is very, very short and easy to complete. The request has to be for a specific testable question. We can't just ask for a cure for PSSD, unfortunately. Hence, I have contacted some experts with recent research experience in this area first to request some suggestions for topics that they think might be helpful in obtaining data to stimulate further research.

I believe Dr Healy mentioned the potential usefulness of tracking users of drugs of viagra amongst younger people to try to ascertain the extent of PSSD and PFS and related syndromes in one of his research papers. He kindly replied to reiterate that he thought that research in this area could be useful. It was only Dr Healy who gave a specific enough answer that we can forumulate into a research question of the type required.

Here's my suggestion for completing the short, simple online form. If you agree, you can copy and paste my answers.

(1) - What should we test?

What percentage of people who have been prescribed / purchased viagra between the ages of 18 and 40 had previously been prescribed either an antidepressant, finasteride, or isotretinoin / accutane that they had ceased taking for at least 3 months prior to the prescription for viagra, having never purchased viagra prior to taking the antidepressant, finasteride, or isotretinoin / accutane.

(2)- Who is it for?

People suffering with sexual dysfunction. Specifically PSSD (Post SSRI Sexual Dysfunction), PFS (Post Finasteride Syndrome), Post isotretinoin Syndrome.

(3) - Help us understand what difference the evidence could make to patients and the public, the NHS or social care.

This data would be helpful in tracking the numbers of men who are suffering with PSSD (post SSRI sexual dysfunction), PFS (Post Finasteride Syndrome) and Post isotretinoin syndrome. This is currently difficult to track because of the lack of awareness of the condition. This results in medical professionals being unfamiliar with the condition when sufferers attempt to report their experiences.
The condition itself is debilitating and traumatising for sufferers and has a profound effect on their lives. Data from the proposed research question would increase awareness, stimulate action to support sufferers, and inform further research to develop potential treatments for the condition.
The research could potentially save lives and increase quality of life.
PSSD: https://rxisk.org/post-ssri-sexual-dysfunction-pssd/
PFS: https://www.pfsfoundation.org/about-pfs ... -syndrome/
Post isotretinoin Syndrome: https://rxisk.org/accutane-30-years-of- ... lear-skin/


Here is the link to the site to request the research:
https://www.nihr.ac.uk/patients-carers- ... -topic.htm

Let's all park our cynicism for a moment and give this a try. If we get a load of people doing it, we can follow it up later and see what they make of it.
Last edited by climb on Sun Apr 12, 2020 5:28 am, edited 2 times in total.
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anacleta
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Re: A Way to Request some Research

Unread post by anacleta »

Hi climb! I find your idea really interesting and curious.
it might be a great idea and I hope anyone who reads you does the simple procedure you have indicated!
I'm not from the UK, but I was able to do it anyway! thanks for your initiative
climb
Posts: 170
Joined: Sun Dec 29, 2019 10:09 pm
Contact:

Re: A Way to Request some Research

Unread post by climb »

Hi Anacleta,

that's good to know that anyone in the world could request this.

Best case scenario:
Enough people request it and they actually carry out the research.

Worst case scenario:
It gets the issue on the radar of research professionals who might not aware of it.

It literally takes 2 minutes. I think it is worth everyone doing this.
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