A Way to Request some Research

General Discussion
#1

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, PFS unfortunately. 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 formulate 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, those with 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:


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.

8 Likes
#2

You got one of the PFS’ out of order, you’ve written PSF in there, if people are going to copy and paste, it might be worth proof reading. :slight_smile:

1 Like
#3

Hi Greek,

thanks for pointing that out. I’ve edited it :slightly_smiling_face:

I’ve been informed that it’s possible to submit the request regardless of where you are in the world by someone from outside the UK.

Given that it is so quick to complete the form, I think it’s worth everyone doing this, even if the only outcome is that it gets the issue on the radar of research professionals who might not be aware of it.

#4

If we (from other countries) use VPN we could participare…

1 Like
#5

Two questions I have:

  1. Does copy pasting the exact same words not lead to the impression that something is wrong there and that the quest doesn’t go through? Shouldn’t we better vary the formulation, formating, structure a bit? Otherwise it may look like the same person used several Ema addresses.

  2. How will they get the data? Is the quest feasable for them?

#6

Thanks for taking your time to look into this and being proactive @pssd2020. Application to rare disease funding is part of the long term strategy that the admins here are undertaking and the NIH would certainly be an institution of interest. I personally don’t know how this sort of thing works but your implication that the more people making the same noise about this to them, the more likely they are to take notice sounds logical enough to me on the face of it. However, I do have some reservations about the content of what you propose we should send them. Some of my doubts on the approach in the OP:

This is a very, very narrow focus for investigation into our condition. As we know, PFS/PAS/PSSD aren’t just conditions of sexual dysfunction. Prescription of Sildenafil following Fin/Iso/SSRI use is not a reliable indicator of how many people have this disease. As mentioned, many PFS patients do not have erectile dysfunction; many patients who do have erectile dysfunction may not seek a prescription for ED meds from their doctor. In the UK now, it is available over the counter without the need for prescription. It also obviously obscures the numerous amount of female patients of this condition.

#7

@tzinkman, I believe the proposal to review anonymized insurance databases to identify the prevalence of ED medication usage among former users of fin, tane and ADs is very cost effective. Not ideal research by any means, but cost effective as far as demonstrating that there is a glaring problem with these drugs causing long-term sexual dysfunction in young people. The use of medications commonly used to treat post-drug symptoms could also be reviewed.

A similar analysis found a link between Accutane and IBD, but not Accutane and Crohn’s.

I’m honestly baffled that medical insurers haven’t made more of an effort to utilize their own data to identify problem drugs that lead to higher expenses for them down the road and lobby to place greater restrictions on these drugs.

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#8

I suppose I’m just not sure it would pick something statistically significant up. Anecdotal of course but I’ve never sought Sildenafil or any other ED med prescription from my doctor despite experiencing sexual dysfunction from PFS so this method of determining sexual dysfunction would completely miss me as a data point. I did report my symptoms to the Yellow Card Scheme. Erectile dysfunction as a symptom is one of the things most reasonably well established following use of 5ari/SSRI drugs, listed on the prescribing leaflet for both class of drugs and

the European Medicines Agency formally declared that it was recognizing Post-SSRI Sexual Dysfunction (PSSD) as a medical condition that can outlast discontinuation of SSRI and SNRI antidepressants.

https://www.psychologytoday.com/gb/blog/side-effects/201906/post-ssri-sexual-dysfunction-recognized-medical-condition.

The ED med numbers can only give us an indication as to prevalence but again, it would miss a lot of people.

As I said though, I don’t really know how NIH funding works and how amenable they are to repeated requests from a single patient group. If it’s cheap to research this data and wouldn’t detract from other requests for funding/research them then it can’t hurt. I have to say I’m surprised it hasn’t been run as a matter of simple statistical analysis by medical agencies given these drugs do list these problems as side effects.

This is a really good point. In the US, where the health care system is largely based on insurance companies, you would think they’d have an algorithm for this sort of thing.

#9

Hi guys

indeed, it had crossed my mind that this would not capture everyone.

If anyone would like to suggest an edit for the wording, perhaps to add a caveat that this kind of research would help give an indication into the extent of the problem, but not all due to limitations of the sample and variations in symptoms of sufferers (not everyone suffers from ED), or anything else, please let me know and I will happily amend the original post.

Likewise, if many people think that this research would do more harm than good for the reasons discussed, we can take the post down.

I am frustrated by the continual lack of awareness and engagement from medical professionals and wanted to do something to get this on the agenda.

I did ask the NIHR what the criteria was for them selecting research topics for funding, but it was a bit vague. I have now found another email address that I think might give a better answer. I don’t think making a noise would be sufficient in itself, but if enough people report that there’s a problem, hopefully they’ll listen sooner or later.

I have reported my experience through the yellow card system, but I only found this by hours of emailing and trawling the internet years after it first happened. Most people are going to report it to their GP and get shut down. Some people will be persistent and find a way to report this, but many won’t because there is so much opposition from the Health Service and everything is so bureaucratic. It’s unacceptable and we need to change it.

I think that a big part of the problem is defining the conditions themselves and their symptoms. This hinders subsequent diagnosis. I think that there is a big difference between the ‘reduced libido’ which Doctors might associate with depression or anxiety and what we are experiencing. If we can more specifically define this aspect, it might help. As would remembering to point out things like loss of nocturnal erections.

Correct me if I’m wrong (and if this not a common experience, just my own), but it often feels much more like a disconnect between brain and genitals than just a bit less interest in sex. Whenever I was depressed in the past, my ability to be aroused was not removed. I was just up for it slightly less often. This aspect of the condition is something that confuses doctors.

The problem is, I suppose, that any directive in any health service needs to be backed up by… research…

I’ve contacted 2 research University linked research centres affiliated with the yellow card system. Hopefully they’ll shed some light on whether that’s an avenue that’s worth pursuing.

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#10

Did anybody fill this? I will open this tomorrow.

Thank you PSSD2020!

@mods guys if this form is helpful to us in any way, let’s sticky it?

#11

Any updates on this?