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Maybe its time to think about doing real science

Unread postPosted: Sun Mar 24, 2019 3:03 am
by been_too_long
Wonder what we might find if replicated https://www.ncbi.nlm.nih.gov/pubmed/126 ... IldrjisO-Q on PSSD sufferers and compared results. Wonder if there might be some answer to explain our anorgasmia.

Too bad we find it impossible to organize ourselves like other disorders with something like a funded foundation to finance such an endeavor.

Only way to get some results in the future

Unread postPosted: Sun Mar 24, 2019 9:40 am
by lw77
I would like to express a thought about the situation, it may seem pessimistic but unfortunately it is relative to how I see the situation.
At this point, I refer to those who have PSSD in severe form and seriously alter their quality of life.
I fear that we have very few probabilities, at least in the short term (say 10 years), of obtaining some results even if we do something, let alone if we do nothing (something that has happened so far, except for one person who has personally taken charge of finance a study by pulling out 40000 or 50000 euros). This equates to the certainty that nothing positive will happen, neither in terms of recognition of the problem, nor in terms of therapy. In the last year (in which I joined the forum), nothing has happened from the organizational point of view, it means that we still have no idea what the problem is (except the study of Coraggio). It is practically certain that the situation will not progress in terms of knowledge relating to the problem, continuing in this way, that is, hoping that from nothing comes out a substance that systems or alleviates the problem. Not all forms of PSSD are equal in terms of gravity, at this point given the extreme difference in individual response and side effects experienced in response to drugs, we do not even know if there are different causes that manifest themselves with the same symptoms.
I constantly see people protesting, complaining, but concretely what are we doing?
If we only want to think that we have the slightest chance of appearing credible, we need to set up an association, a foundation or whatever may be necessary. Studies are needed, it is absolutely necessary, once the Melcangi study is completed, that it is not guaranteed to find much because a single study can only explore certain aspects of a problem, there will be no one else scheduled. We have to finance the studies, no one will pay for them, it's our problem, we can't think that someone will take charge of it, because it won't happen.
If we collected 50 dollars a year for one of 1000 people (which at this point I believe are on this forum) we would have $ 50,000 a year in the budget. How much time do you want to lose? For as long as you want to see your friends and relatives getting married, having children or having relationships, while we are glued to the forums all day hoping that by some miracle someone will find the cure for the problem? Aren't you tired of knowing that you're not actually doing anything useful to solve the problem, and that hope never healed anyone?

Re: Only way to get some results in the future

Unread postPosted: Sun Mar 24, 2019 11:04 am
by Snake
lw77 wrote:I would like to express a thought about the situation, it may seem pessimistic but unfortunately it is relative to how I see the situation.
At this point, I refer to those who have PSSD in severe form and seriously alter their quality of life.
I fear that we have very few probabilities, at least in the short term (say 10 years), of obtaining some results even if we do something, let alone if we do nothing (something that has happened so far, except for one person who has personally taken charge of finance a study by pulling out 40000 or 50000 euros). This equates to the certainty that nothing positive will happen, neither in terms of recognition of the problem, nor in terms of therapy. In the last year (in which I joined the forum), nothing has happened from the organizational point of view, it means that we still have no idea what the problem is (except the study of Coraggio). It is practically certain that the situation will not progress in terms of knowledge relating to the problem, continuing in this way, that is, hoping that from nothing comes out a substance that systems or alleviates the problem. Not all forms of PSSD are equal in terms of gravity, at this point given the extreme difference in individual response and side effects experienced in response to drugs, we do not even know if there are different causes that manifest themselves with the same symptoms.
I constantly see people protesting, complaining, but concretely what are we doing?
If we only want to think that we have the slightest chance of appearing credible, we need to set up an association, a foundation or whatever may be necessary. Studies are needed, it is absolutely necessary, once the Melcangi study is completed, that it is not guaranteed to find much because a single study can only explore certain aspects of a problem, there will be no one else scheduled. We have to finance the studies, no one will pay for them, it's our problem, we can't think that someone will take charge of it, because it won't happen.
If we collected 50 dollars a year for one of 1000 people (which at this point I believe are on this forum) we would have $ 50,000 a year in the budget. How much time do you want to lose? For as long as you want to see your friends and relatives getting married, having children or having relationships, while we are glued to the forums all day hoping that by some miracle someone will find the cure for the problem? Aren't you tired of knowing that you're not actually doing anything useful to solve the problem, and that hope never healed anyone?


sad but true

Re: Maybe its time to think about doing real science

Unread postPosted: Sun Mar 24, 2019 11:13 am
by chemistry
Funding is really the issue isn't it? Maybe members should have to subscribe to the forums 5 bucks a month ie 60 bucks a year after 3 months of being on it or something idk... Maybe this is because of anhedonia/apathy but it seems particularly difficult to motivate people on the forum in general. So that's why i'm suggesting something like a 5 dollar a month subscription or just something so that, like lw77 said, it'll add up to about 25-50k a year potentially. Hopefully more in the future as more members join in. Not saying this is a good idea just sharing

Re: Maybe its time to think about doing real science

Unread postPosted: Sun Mar 24, 2019 11:25 am
by Snake
To add something positive:
1) Look at mesolimbo's log - it seems that some existing and well-known drugs can help manage or alleviate symptoms up to 90%(?), it's really promising
2) Let's assume that PSSD and PFS have the same root - pfs community is really doing stuff, there is a foundation, on-going Baylor study that soon will be published

I'm just saying that yes - silver bullet may never appear, but there are some drugs that can do something. If only I had a safe access to drugs I would definitely try to copy Mesolimbo's log. Here we are, discussing the same thing once again... Yes, it hurts me that the progress is so sluggish. Definitely I got the feeling that life is passing me by, it sucks because now it's just exisitng, not living.

The only thing that comes to my mind is to start a foundation by someone from the US. Maybe we should ask Healy to help us with that? At least with getting attention when founded?

Re: Only way to get some results in the future

Unread postPosted: Sun Mar 24, 2019 1:22 pm
by Blueturtle
lw77 wrote:I would like to express a thought about the situation, it may seem pessimistic but unfortunately it is relative to how I see the situation.
At this point, I refer to those who have PSSD in severe form and seriously alter their quality of life.
I fear that we have very few probabilities, at least in the short term (say 10 years), of obtaining some results even if we do something, let alone if we do nothing (something that has happened so far, except for one person who has personally taken charge of finance a study by pulling out 40000 or 50000 euros). This equates to the certainty that nothing positive will happen, neither in terms of recognition of the problem, nor in terms of therapy. In the last year (in which I joined the forum), nothing has happened from the organizational point of view, it means that we still have no idea what the problem is (except the study of Coraggio). It is practically certain that the situation will not progress in terms of knowledge relating to the problem, continuing in this way, that is, hoping that from nothing comes out a substance that systems or alleviates the problem. Not all forms of PSSD are equal in terms of gravity, at this point given the extreme difference in individual response and side effects experienced in response to drugs, we do not even know if there are different causes that manifest themselves with the same symptoms.
I constantly see people protesting, complaining, but concretely what are we doing?
If we only want to think that we have the slightest chance of appearing credible, we need to set up an association, a foundation or whatever may be necessary. Studies are needed, it is absolutely necessary, once the Melcangi study is completed, that it is not guaranteed to find much because a single study can only explore certain aspects of a problem, there will be no one else scheduled. We have to finance the studies, no one will pay for them, it's our problem, we can't think that someone will take charge of it, because it won't happen.
If we collected 50 dollars a year for one of 1000 people (which at this point I believe are on this forum) we would have $ 50,000 a year in the budget. How much time do you want to lose? For as long as you want to see your friends and relatives getting married, having children or having relationships, while we are glued to the forums all day hoping that by some miracle someone will find the cure for the problem? Aren't you tired of knowing that you're not actually doing anything useful to solve the problem, and that hope never healed anyone?



I strongly disagree with the notion that it’s practically impossible to significantly improve the state of the PSSD community with action in the next ten years even WITH effort. I’m not sure exactly why you have that sentiment. If anything I actually am cautiously optimistic about improvements in our understanding and ability to help.

I share you skepticism that there will ever be a “cure” for PSSD. However, I am also skeptical we will in the near future ever have a “cure” for other common conditions like Eczema, schizophrenia, learning disabilities, various auto-immune diseases, Etc. Etc.

What I think we can do is significantly advance our understanding of the problem and keep reporting positive responses to medicines because there have been many, and to be honest with you I think a lot of the biology of PSSD may very well overlap with other, much more common problems. Likely overlaps with non-PSSD sexual dysfunction mechanism as well, such as serotonin and dopamine being associated with hypo active sexual desire in women.

https://www.ncbi.nlm.nih.gov/m/pubmed/29198512/

https://www.sciencedirect.com/science/a ... 9616305961

I wouldn’t be suprised if that PSSD may share siginificant biological links to other conditions in other fields like psychiatry, endocrinology, neurology, urology etc. Although what do I know, I’m not a scientist, nor a doctor.

I would 100% agree that we need a foundation for this. There may be significantly more PSSD sufferers in the world then PFS patients for example but our problem has gone more unnoticed by the media and medical professions because SSRI’s are “so so popular and so safe” plus with the mental health stigma that when people report this problem it can be easy to dismiss it as “you’re crazy”. That’s what happened to me when I described my genital anesthesia and ejaculatory anhedonia and genital pain in the emergency mental health part of a hospital when I was feeling suicidal “I think you’re psychotically depressed, you need anti-psychotics and Effexor” which are meds notorious for sexual dysfunction obviously. Useless psychiatrist I saw.

Honestly I’ve been feeling better lately and if anything it’s taught me a couple of valuable lessons, including the importance of my family and friends.

I’m also not sure about the sentiment about the marriage and children stuff, fema has interviewed a man who got PSSD symptoms from anti-psychotics who has had a child, many others on this forum have had some happy relationships. Same to be said about individuals on the PFS forum. Obviously this condition is a big blow to fertility and relationships, as it has been for me personally sadly, losing potential girlfriends, but it’s not impossible to find a happy relationship with this.

Another thing that has given me a bit of peace of mind is realizing how common sexual dysfunction in general is. Lots of people suffer with diabetes, alcoholism, mandatory medication regiments, cancer treatment etc that can potentially wreck havoc on sexual function and fertility so it gives me some peace that I am not alone in my suffering. Also a lot of potential girlfriends actually have pretty low sex drives anyway, and I still have platonic feelings and really love non-sexual beauty in woman so that helps.

But regardless. We need more studies, absolutely. Healy was talking about doing an MRI study awhile back I believe? That would be an interesting place to start. Perhaps a neurosteroid assessment and blood hormone test of over 15 or so patients could be very helpful in finding any trends like with the PFS melcangi study that was pretty helpful and in my view gave a few clues about what may be going on with that group.

Re: Maybe its time to think about doing real science

Unread postPosted: Sun Mar 24, 2019 1:35 pm
by Blueturtle
@Chemistry

Yes, that’s a great idea, funding is important. Some form of donation service here for further research may be a good idea, I’m not sure if I would make it mandatory.

@Snake

Great point about Mesolimbo, not just him but lost_soul’s experiment with estradiol-17b was extremely interesting although I understand his choice not to take it long term for safety concerns.

Re: Maybe its time to think about doing real science

Unread postPosted: Sun Mar 24, 2019 2:57 pm
by afx
Funds are a good idea. But.. I do not want to sound pessimistic, but realistic - getting max 100, not 1000 members to annualy pay 50 dollars is more realistic. Really. So count with something like 5k from member payments per year and I mean if the payments would be equal and mandatory. Otherwise like volunteer payments it would be even much less, maybe some sufferers would be generous every now and then, but it would not exceed funds in total from that mandatory model.

Anyway, 50k per year budget is dreaming and simply impossible, no offense. It would take some very rich and very generous sufferer to fund the majority of this (and to keep funding it every year..) or to create some really strict and financially demanding rules to be a part of PSSD community, not only 50 bucks per year, but then it will be questionable who will take a part in this, in the end just a fraction of those 100 that I mentioned, so the effect in the end would be similar anyway.

Sorry for unoptimistic opinion, just my more realistic view on subject. I may be wrong but not that much wrong, unfortunately

Re: Maybe its time to think about doing real science

Unread postPosted: Sun Mar 24, 2019 4:12 pm
by lw77
Ok, as i expected i see a lot of smart guys in here, with a lot of reasonable ideas. Even where our opinions differ, it is still important to discuss and discuss. I believe that as well as at the organizational level, it would be good for us to have some form of association even on a psychological level. Because even trying to do something can still make us feel better, rather than being like zombies watching life go by. Not to mention that having a website also would make us more visible. Imagine if at this moment a person arrived who wanted to make a donation or help us. Do you believe he would do it, not having a site showing projects, showing anything? He would not even technically know who to donate to, this is just an example, but I think it is acceptable.

Re: Maybe its time to think about doing real science

Unread postPosted: Sun Mar 24, 2019 4:25 pm
by afx
Being able to make a donation is of course a good idea, some effort is always better than no effort. But we have to have some plans with what to do with the money, I personally do not think it would ever be sustainably enough to fund scientific studies, maybe we should think of some more realistic things on how the money should be spent - spreading awareness, getting recognition or something similar - financially affordable