Our Love Life Needs You to be Wiked

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August 3, 2022 | 15 Comments

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  1. Crikey now have to study all this. The only thing I know about The protein p63 is that it’s a Tumor Suppressor and p63 is mediated through ACE2 receptors and the Covid ‘vaccines’ spike protein binds to ACE 2 recepors. But I got thrown off this when Karen kingston said – to the effect – the whole mRNA vaccine being given to the public is not true – what people are getting is toxins via a nano lipid carrier and she certainly has shown a patent for this. Seems to me though, it’s still very much unclear what is in these ‘vaccines’ and therefore what is actually going on. Harms and terrible regulation issues, freedom of speech are certainly being shown in the Pfizer trial and FIOA documents. So are you saying this p63 is involved in erotic stuff as well as cancer?

  2. Intermittent Fasting has been shown to successfully reverse diabetes, metabolic syndrome, and pharmaceutical drug and processed food damage.

    I think the idea is that while the body isn’t busy digesting food, it can work on healing other parts.

    It’s the type of approach that can be independently tested by the person themselves.

    It doesn’t cost anything – but this could also be a problem.

  3. Your donations are needed to fund scientific research into post-SSRI sexual dysfunction (PSSD) and other enduring sexual dysfunctions. The aim is to better understand the biology of these conditions and hopefully find treatments.
     
    £17,036 raised of £50,000 goal

    86 donations

    https://rxisk.org/pssd-research/

    Money disbursed

    £13,925.15 to Professor Luisa Guerrini on 26 July 2022.
    Transaction fee of £5 on 27 July 2022.

  4. Wiki App…
    What I think you need is a template copy of the basic Wikipedia/Wikimedia software. This one:
    MediaWiki 1.35.7 – current long-term support (LTS)

    It is a wiki -that not surprisingly- looks like and operates exactly the same way as Wikipedia. Also, it is free to down load and use. No real building required, just a bit of customising.

    It can be customised with your logo top left instead of the WP globe of letters. Editors can be password resricted. Trusted editors can be given Administrator passwords to do general house keeping etc. An important point is a lot of people already know how to use this type of wiki.

    It must be a decade since I messed around with this software pakage and so can say with confidence that it is relitivly easy to do. Whoever looks after your website needs only to instal L.A.M.P. (also free) onto a server (or virtual server) and load MediaWiki on to it and you’re good to go.
    I’m not in a position to customise it for you (such as replacing their logo with yours) but the thought has come to me that someone in the Wikipedia/Wikimedia community may be willing to help with these less obvious to accomplish tweeks ( I can link you to where they dwell). By and large they seem to score high in alturisum (they are volunteers after all) and alway willing to advise.

    As an example of what other have done with this Wiki temple see:
    https://me-pedia.org

      • A Wiki is not something to be rushed into without some prior consideration about features, so I suggest an article first about determining what RxISK (and we as potential contributors) need.
        Having an ‘open platform’ is great but too ’open’ can invite vandalism etc. So some control needs to be built in. It also needs to be relatively easy to maintain and administer. Reinventing the wheel and learning the hard way will ensure a short life to any half-baked wiki project. So I think there should be some sort of minimum specification or requirement put on paper for us to see first.

        Although I am most familiar with the MediaWiki wiki, RxISK is a small orgainzation and an all-dancing-all-singing wiki may not be the best choice. Whilst starting with a blank sheet and building a wiki from scratch is not a practical nor realistic option.

        So for those here interested in looking and considering alternitive off-the-shelf or turn-key Wiki engines I point them to this comparative list of features:
        https://en.wikipedia.org/wiki/Comparison_of_wiki_software

        From the point of view of being able to customise it ourselves, the free version of the BlueSpice MediaWiki looks IMO to be best. For those that intend to help out with this project there are some
        Video-Tutorials to give an indication of user friendliness. It looks easier to customise than my previous suggestion of MediaWiki 1.35.7
        I’m very conscious of what is easy for me may not be easy for someone else and if it is not easy for contributors to RxISK to use it will just become another ”well it seemed like a good idea at the time” project.

        https://en.wiki.bluespice.com/wiki/Video-Tutorials

        Everything else one needs to know about the BlueSpice version can be found here:

        https://bluespice.com/products/bluespice-free/

        For my part I would be happy to spend a few hours each week transferring content over and creating pages and so forth. I can also edit images and upload them. We could have Forum & Help Desk page with a ToDo List where such requests could be posted if the contributor can’t do it themselves.

        I have only installed WikiMedia engines on desktops.
        You need at least an IT professional who knows how to set up a server properly, located in a safe country (whose government won’t shut it down) with automatic backups. All the while ensuring you have control and own the domain name and so on. Then nominate someone to be the Main Administrator and gate keeper. This is because being open for anybody to edit means anybody can create havoc too. So someone will be needed to block IP address of any trouble makers. After that though, we should be able to do the rest…

        This leaves me with three questions.

        1) It would be interesting to know how many other people here already know how to edit, upload images etc., to Wikipedia and so feel they can hit the road running?

        2) Would a Wikipedia style lay out be more familiar and so encourage more people to contribute?

        3) Should we choose some other Wiki engine.

        • Pogo

          So what about a page on RxISK within WordPress
          with a forum where people submit target proteins and papers and feedback on researchers contacted
          which is moderated in order to avoid dud or spam material being added
          and the plausible stuff is posted

          David

          • I have no hands-on experience with WordPress, you will have to ask someone else. Would imagine though that it is far more user frendly.

            Having mulled things over, I think RxISK’s target contributors
            ( we ) need not so much the best from a geeks point of view (which would need some oversight from a IT professional) but something very easy to use.

            I’ve had a quick look at WordPress and there are now some Content Management System plugins available for small enterprises. For the non-technically minded, the main functional difference of a Small Enterprise Wiki is that they can’t be scaled up to support countless contributors. However, their smaller less complex engines allow their user interface to (sometimes) be made more user friendly.

            Now, I have only just come across this Helpie Knowledge Base WordPress plugin but it appears to be capable of doing everything DH is envisioning on just one site- and it happens to be a wiki.

            It can configured so that content added by new users needs to be approved by a moderator but trusted editors can work in real time and so grow and expand the site quickly. This gets over my concern that with open public platforms the moderators can get overwhelmed and feed up if they have no gate-keeping controls and editors get frustrated at having to sort out other peoples mess instead getting on building up the site.

            Another advantage is that the Helpie team provide the tech support for all the software issues and of course WordPress has a good reputation as a reliable platform. Also, before any commitment is made, we can spend a week playing around with it to test its efficatousness. Here’s Helpie’s blurb about their plugin…

            Helpie Knowledge Base is a self-hosted knowledge management software used as a plugin with WordPress CMS. It is a reliable and affordable tool for knowledge management for startups and small businesses. With Helpie, you can quickly create and share knowledge within an organization. It is also a great tool for creating a collaborative knowledge library for any use case like an internal team knowledge base, customer helpdesk, or a public facing wiki website.
            It works with WordPress, which is beginner friendly platform. You can create your knowledge management website with Helpie and WordPress. Here are some resources to help you.
            1. Create a WordPress website
            2. Installing and using Helpie on your WordPress website
            Best Features of Helpie Knowledge Management Tool for WordPress CMS
            Content control and Access management – you can control who can add, edit, publish, and approve content. Access can be given to User Groups (roles) and individual Usernames.

            https://helpiewp.com/wp-content/uploads/2019/06/Helpie-Knowledge-Base-features.png

            Front-end editor – a text and media-rich visual editor like the one Medium.com has and with it you can add any type of content like text, images, GIFs, Video, etc.,
            Revision System – can see the different versions of edited content and choose the best version to be published.
            Advanced Styling and Branding – every part of Helpie knowledge base can be customized to match your brand.
            Integrations -Since it uses WordPress, it leverages the ability to integrate with many other tools available.
            Pros
            * It is a fully collaborative knowledge management tool, and it promotes knowledge sharing.
            * You get complete control of your knowledge repository.
            * It is a very affordable solution
            * Can have an unlimited number of agents and users
            * Can be integrated and customized to fit any of the use cases and needs like a CRM, Ticketing system, HR system, etc.,
            * Comes with all required knowledge base tools
            * Pre-made demos for knowledge management system examples
            Cons
            People have inhibitions because it uses the WordPress platform. But using WordPress is actually an advantage.
            Helpie Knowledge Base Pricing
            Helpie Knowledge base has 3 pricing plans based on the number of sites you need. All 3 plans have full features.
            There is a 7-days free trial for Helpie Knowledge base.

          • A Proposed plan.
            Have a sysop at Data Based Medicine Global Limited instal WordPress on one of their servers.
            Then instal the Helpie plugin.
            Both of these tasks (unlike installing Wikimedia) are run-of-the-meal-jobs to a sysop.

            After making copies of the master passwords he can give one to a RxISK volunteer who is willing to be an Administrator. He or she (the new admin) can then grant admin rights to other volunteers. [ I am willing to be an admin]
            This involves mainly clicking boxes and so on.

            Before the Wiki goes public, the legal stuff like TOC & Privacy polocies need to be cut & pasted , bespoken etc., and then locked so that only the System Administrator at Data Based Medicine Ltd can modify them.

            Then the volunteer administrators can take over and give the wiki structure.

            For example:
            Set up the main page (home page) welcoming visitors and outline RxISK’s mission.

            Set up some main categories into which like pages can be grouped.
            So for instance, the sections and pages on PSSD, PFS, PRSD can be in a category of syndromes (for want of a better term).

            Pages on proteins and enzymes can be added to the category ’Targets’

            Direct links to these categories can be then added to the main page to aid first time visitors navigate quickly.

            Activism, such as Emailing researchers and recording responces from emails sent, can all be grouped in a category.

            I found organising information like this soon becomes instictive and thus gives the wiki systems the advantage over other collaborative information management systems.

            Once we have a basic structure laid out it will be easier for editors to see where is the best place to add each of their contributions in an organised way and expand the structure themselves as the need arrises.

            Two heads are better than one when it comes to structuring sensible in a way that going to makes sense to others.
            Since there is no software coding to do, I think just a few of us could set up the wiki just using what we already know. Having several administrators also means that it will be easier to keep abreast of things as house keeping can be done whenever we have a few minutes spare thru out the week.

            Anyway I’ve said enough and it is really up to the will of others as well, to help make this happen. A resource on this neglected area of medicine, one would all agree, is badly needed. I can see the possibility, that done well, this resource and knowledge base will develop it own momentum as word of its existence spreads exponentially through cyberspace, attracting a flood of visitors and hopefully more…

            What do people think?

          • This has all been very helpful and a few of us are thinking about how to do it.
            There does need to be some gatekeeping.

            David

          • Noticed you have asked for help with a Wiki on twitter too, again without being specific.

            Have you thought of seeking a ‘Wiki sysop’ (rather than just some help) on:

            The LinkedIn Volunteer Marketplace: Connecting Professionals to Nonprofit Volunteer Opportunities
            https://blog.linkedin.com/2014/01/15/the-linkedin-volunteer-marketplace-connecting-professionals-to-nonprofit-volunteer-opportunities

            Or do it via VolunteerMatch

            https://vmhelp.zendesk.com/hc/en-us/articles/215343787-Connecting-your-opportunities-to-LinkedIn

  5. Dear Dr.Healy & Co.

    Creating an “encyclopedia” on PFS/PSSD/PRSD is a good idea. At the moment, the information is scattered throughout the scientific literature and the Internet. This can be very confusing for a researcher because it can be an additional barrier for someone who wants to learn about this syndrome. However, I think we need to be very careful to avoid common pitfalls. As you mentioned in some of your blog posts, the PSSD/PFS/PRSD community is full of scammers trying to make money out of people’s desperation. If such a tool gains popularity, the vultures will start circling. Malicious people will leverage such a tool to gain credibility. For all these reasons, I think we need to keep a close eye on the content published on such a tool. Every piece of content should be reviewed by people we trust. If we can closely moderate the content, that would be a great idea.
    I also wanted to share a potential lead. Maybe this lead has already been proposed. Let me know if it has. Below I describe the reasoning behind it. English is not my native language, so please bear with me if a wording is strange :

    A GOOD APPROACH: ISOLATE/EXPLAIN
    In one of your last blog posts, you presented a good approach of isolating a specific symptom and explaining it : to start with a specific symptom in order to explain the bigger picture. I agree this is the best way to avoid dispersion and establish a clear goal that everyone can focus on. One symptom you mentioned was genital numbness, as it offered us a very specific target. I agree that the explanation of genital numbness will lead us to a more comprehensive explanation. However, although the explanation of genital numbness is less complex than that of anhedonia or low libido, I still think that this specific symptom is very complex and can have a wide variety of causes. In fact, genital numbness can be caused by peripheral nerve damage, altered gene expression (e.g. the one that codes for prokineticin as you mentioned), central nervous system… Most importantly, genital numbness can be caused by the failure of different organs. Therefore, we have to take into account different organs in our reasoning, which adds a lot of complexity. Therefore, I think that genital numbness remains a very difficult symptom to study, while being less complex to study than anhedonia or low libido.

    WHAT OTHER SYMPTOM COULD WE FOCUS ON?
    A symptom reported by people with PFS/PSSD/PRSD that has been evaluated in an observational study might be a good symptom to focus on. Many people have reported oligospermia, especially early in the syndrome. They commonly refer to this symptom as “watery semen” because oligospermia usually manifests itself as a different semen texture (notably less white). A reduction in sperm count has been observed in patients taking SSRIs and finasteride during intake (DOI: 10.1016/j.fertnstert.2013.07.2000). Interestingly, this symptom was described in an observational study in patients with PFS : androgen levels and semen parameters among former users (doi:10.1001/jamadermatol.2014.3234). Despite the obvious limitations of this study (no control group, selection bias …), it gave interesting results: 16% of patients with PFS had severe oligospermia. The study did not have a control group and therefore compared this percentage to data from a WHO study that assessed sperm count in the general population. 3% of the general population has oligospermia. A problem with sperm motility was also observed in this study among former finasteride users. Despite the limitations of this study, and given the frequency with which this symptom was reported in the PFS/PSSD/PRSD community, we can assume that it is a symptom of PFS/PSSD/PRSD.

    WHY IS THIS SYMPTOM RELEVANT?
    What is interesting about this symptom is that oligospermia mainly involves one specific organ: the testis. However, semen does not only come from one organ, as the prostate is also involved, spermatozoon production involves the testis as this is where spermatogenesis takes place. Of course, spermatogenesis is also regulated by endocrine pathways. The secretion of FSH will induce the secretion of Inhibin by the sertoli cells which will in turn reduce the secretion of FSH. As you can see, the process of spermatogenesis is controlled by a feedback loop involving the hypophysis and sertoli cells. I have simplified the mechanism that controls spermatogenesis here, there are other hormones involved in spermatogenesis other than FSH or inhibin but these are the main ones. If you complain to a doctor about infertility, FSH is normally the first hormone he will check. A decrease in FSH compared to a control group has been observed in patients taking finasteride or SSRIs (Finasteride: DOI: 10.1016/s0039-128x(98)00005-1 / SSRI: DOI: 10.1097/JCP.0b013e31817e6f80). This could be an explanation for the decrease in sperm count observed in SSRI or finasteride users while taking them (DOI: 10.1016/j.fertnstert.2013.07.2000). Unfortunately I could not find any observational study evaluating FSH and LH in patients with PFS/PSSD/PRSD compared to a control group. I have only found forum reports of patients with low FSH and LH, but due to the obvious selection bias, it is difficult to infer whether this is a common hormonal marker of PFS/PSSD/PDSP. It would be interesting to have such data from a cohort of PFS/PSSD/PRSD patients compared with healthy patients. I am not saying that PFS/PSSD/PRSD is due to a deficiency of FSH or any other hormone, but rather that explaining why some patients experience oligospermia after discontinuation of treatment may help us understand the overall picture, just as explaining genital numbness would help us understand the underlying mechanism that leads to PFS/PSSD/PRSD.

    WHAT TARGET COULD CAUSE SUCH SYMPTOMS?
    We can look for a target that could explain both the “emotional” symptoms and the oligospermia, assuming that this problem does not originate from the endocrine pathway (e.g. low FSH). By looking for proteins that are both expressed in the organs that can trigger such symptoms: the brain and the testis. I used the following tool: the Human Protein Atlas (https://www.proteinatlas.org/). The Human Protein Atlas is a project that aims to map all proteins in cells, tissues and organs. It allows to identify gene expressions shared between different organs. For example, we can search for a gene expressed in the brain and in the testis. Among all the genes expressed in the brain and testis, some seem to be “genes of interest”: KISS1, GPR54. The KISS1 gene encodes the Kisspeptin protein while the GPR54 gene encodes a G protein receptor that binds to Kisspeptin.

    WHAT ARE THE KNOWN FUNCTIONS OF KISSPEPTIN IN OUR BODY?
    Kisspeptin is involved in several reproductive processes. The best known role of Kisspeptin is to control the secretion of GnRH by increasing its concentration. Kisspeptin “activates” the GnRH neuron, which leads to the release of GnRH that induces the release of FSH and LH from the hypophysis. A role for Kisspeptin has also been established in the initiation of puberty. Mutation of the gene coding for the Kisspeptin G protein receptor leads to a syndrome called hypogonadotropic hypogonadism. These examples are far from an exhaustive illustration of the role of Kisspeptin in the human body but highlight the endocrine role of Kisspeptin. Kisspeptin receptors have been found (using immunological tools) in several regions of the brain, suggesting a broad role for this protein.
    Here is the interesting part. A recent study highlighted the involvement of kisspeptin in sexual behavior. According to the study, “kisspeptin administration increases limbic brain activity specifically in response to sexual and couple stimuli”. A cohort of 29 healthy patients were evaluated when given kisspeptin versus no kisspeptin. When given Kisspeptin, participants showed a higher response to sexual and couple-bonding stimuli. In addition, “Kisspeptin enhancement of limbic brain structures correlated with psychometric measures of reward, drive, mood, and sexual aversion, providing functional significance”. Full study: kisspeptin modulates sexual and emotional brain processing in humans (https://doi.org/10.1172/JCI89519). A video where one of the lead authors, Waljit S. Dhillo, presents the methods and results of the study can be found here: https://www.youtube.com/watch?v=nMtSSCV1yvY . What is interesting about their finding is that kisspeptin appears to be involved in “romantic love”, as couple-bonding stimuli are enhanced when kisspeptin is administered. The lack of ability to feel love or form emotional bonds has been widely reported in individuals with PFS/PSSD/PRSD.
    Interestingly, kisspeptin receptors have also been identified in the testes using immunological tools (immunocytochemistry), suggesting a role in testicular function. Waljit S. Dhillo and colleagues have also published a paper on the role of kisspeptin in the testis (http://dx.doi.org/10.3390/ijms21082958). However, there is some evidence that kisspeptin is involved in sperm function, but its exact role is a matter of debate. One observational study found a correlation between semen quality and kisspeptin in seminal fluid (https://doi.org/10.1155/2019/5129263). We can speculate that the decrease in semen quality observed in PFS/PSSD/PRSD may be due to a dysfunctional mechanism involving Kisspeptin.

    CONCLUSION
    Reading the above will certainly leave readers with more questions than answers. My knowledge in these areas is limited and an informed opinion would be welcome. The main symptoms of PFS/PSSD/PRSD are: low libido, decreased genital sensation, erectile dysfunction, weak or pleasureless orgasms, abnormal semen, flat emotion or anhedonia. Some of these symptoms seem to correlate with the role played by Kisspeptin in our body. Perhaps a damaged mechanism involving Kisspeptin may be a cause of all of the symptoms exhibited by people with PFS/PSSD/PRSD. There are many hypotheses: conformational change of a receptor, desensitization of a receptor, a subset of neurons undergoing death, an autoimmune reaction targeting an antigen involved in a Kisspeptin mechanism… Anything that someone can imagine. A starting point could be to assess the level of kisspeptin in serum and semen of patients with PFS, PSSD, or PRSD and compare them to a control group. An informed opinion might be of interest.
    Sincerely

    • Johann

      Thanks for these thoughts. Kisspeptin is a great addition to the proteins and other targets we should be checking out. And you’ve also outlined some great ideas for people interested to chase other leads

      David

  6. Thank you so much for suggesting keeping an open mind about the etiology of PSSD/PRSD/PFS. As most of the time discoveries are surprising and unexpected!

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