Bio Rip-off, Bio Delusions, Bio Hack?

Print Friendly, PDF & Email
August 16, 2020 | 79 Comments

Comments

    • There was no scientific work to review. RxISK is linked to 2 research power-houses. If we are going to write to everyone we are in contact with suggesting supporting a research effort it is going to be for a properly constituted research proposal – those who have donated to the RxISK Prize would expect no less of us and would be surprised if we were to suggest supporting anything less.

      The other question is the ethical one – is it right take money from vulnerable people offering a cure for something no-one knows anything about.

      RxISK

      • > is it right take money from vulnerable people offering a cure for something no-one knows anything about.

        Isn’t this exactly what every doctor does?

        For that matter, Deya has never claimed to have a cure. Actually he’s very explicit that he doesn’t know of one.

  1. Thank you for your quick reply. I wonder how you would assess Dr.Goldstein’s efforts then, as i am planning to meet him soon.

    • Good question. Irwin Goldstein has a track record as someone who has been studying sexual function for decades, and one of the major figures in this area who has come out and endorsed PSSD as a real entity and as someone who has shared unpublished research results with us and invited questions. His approach makes sense and it appears some people have been helped by him and that he doesn’t think his approach is the answer for all people. He does charge money. So you will get a very standard medical approach from him that may lean a little more toward intervening than we would. His approach leans toward picking things up on MRI – ours leans more toward figuring that at the moment what gets found on MRI is just as likely to show what we can live with rather than what has caused the problem.

      Would be great if you can share what comes out of the consultation

      RxISK

  2. why didn’t you address why you think Dr. Deya research is not legit instead of doing all this confusion, i follow him since i got PSSD and he is obviously the most involved person in this community, the community supports him, what you’re doing is just diabolical

    • Read the email that was sent to RxISK – there is zilch plausible about it. If you think there is something of substance there point it out. Why the third party campaign to bombard us with emails?

      R

      • Just seems like it was written off as a scam instead of given the chance it deserved. What more could be provided to prove this is a legitimate attempt to study this condition? CVs, university approval, and personal information that can be verified have been provided were these not sufficient?

        Perhaps there is some other form of evidence or legal document that you could request from Deya that would reduce your (understandable) skepticism?

        Perhaps it is a scam, but what would change your mind? Im curious

        • It would be a good start if the dude had something published in a respectable journal – about anything. Better again if it was about PSSD. Better again if he wasn’t trying to get money to employ himself. You really don’t smell a rat anywhere in all this?

          Rx

          • I could tell you that someone like Goldstein has all the right credentials and that he uses a standard medical approach. I could also tell you that he charges a fortune and to my knowledge hasn’t cured anyone. So is he helping people, or profiting from desperate people by letting his credentials give him an air of authority that is undeserved in terms of results? I don’t know, maybe both.

            Deya, as far far I can tell, spends a large amount of energy doing what he can to find answers. He doesn’t have answers and he doesn’t claim to have them, but as far as I can tell, he’s trying. That’s a lot more than most people are doing.

            He doesn’t have the right credentials and and not being a researcher he hasn’t and won’t be publishing to a “respectable journal”. I understand how that sets off alarm bells, but while it could be a scam, it could also be an unorthodox attempt by someone to do what they can where very few are willing to try anything.

            Currently this “public discussion” is not doing any good. It’s a game of Chinese whispers.

            You two should have a conversation.

          • > Better again if he wasn’t trying to get money to employ himself. You really don’t smell a rat anywhere in all this?

            Goldstein charges what, thousands of dollars? And what about this button: “Donate to our RxISK Prize campaign”?

            If you’re going to spend money on anything, you need funds.

          • First of all these comments are anonymous and ordinarily would be binned.

            Second in recent months several people with PSSD linked to PSSD forum and other places have sent through theories about what is causing PSSD. Its easy conjure up theories -produce flowcharts about how this has knock-on effects there until – hey presto – and it can look very convincing – enough to get people to take terrible risks. Of every 100 such theories a pretty high proportion will just be elegant flowcharts but nothing else. That said some of the views that have come this way recently have probably not been right but still caused us at least to figure that there are ideas here that need to be borne in mind.

            Nothing has come from DR for any of us to have a look at.

            Third – what has come is evidence that there would be emails just like the ones we have had trying to rope RxISK in. Even without any hints like this beforehand – the overlaps with Ryan Ballow are pretty obvious and scream con-man.

            RB doesn’t seem to be trying to shake us down for money – more the chance to mention a link to RxISK and pick our brains for words he can make money from. The stuff he is pushing is just stuff. Very little rhyme or reason to it but dressed up with some trendy language and dangled in front of people who are desperate it pulls in the dollars.

            Fourth – RxISK made it clear we would not spend any of the money anyone donated on overheads or projects or anyone. The hope was to help raise the profile of the condition and get serious researchers involved and the money would go to someone who found an answer – real answer. Our expectation too is that we will share the details of anything that works reliably with everyone for free. In the meantime, we will not push answers. Anything suggested at this end comes with “tentative” written all over it. In a few cases were there have been encouraging leads that seem safe, we have let people know leaving it up to them to try things and report back.

            Fifth – Re Irwin Goldstein, his position is open to many of the same abuses. But in practice when approached he has shared data and does seem to be operating on the basis of data generated from people who really have the condition rather than just speculating and coming up with nice theories. He is tied into a network of publication and critique which is not going to let him get away with things easily.

            Rx

          • David.

            I feel like I’ve got to address every strange false accusation here. I was not trying to pin rxisk to my name. I appreciate and admire that you seem to be in the fight against SSRIs, but let me make it clear: I do not need anyone attached to me, for the sake of legitimacy. I’ve got 400 + people strong that I’ve helped resolve major issues with, including PSSD. Probably more. I don’t seek validation from you, or anyone. That is what you establishment folks don’t understand about people like me. We’re the guys solving real world problems. You are the folks talking about them.

            Perhaps when the solution is made public, by me, and thousands of men attest to it, you can attach yourself to my name, saying that you wrote a false piece on me, and that somehow catalyzed advances in solution protocols.

            I can tell from the fact that you’ve literally sued universities for not giving you jobs, that you’re quite the antagonistic person.

            You’ll be the first to be bombarded with emails, when the solution goes public.

          • Still waiting for your response, Ive tried on here, and your YouTube channel. $10,000 in escrow if what you say is true and you can relieve me of PSSD. Ill give you my full endorsement.

          • Because I choose who I want to work with. And I sense the antagonistic approach I’m getting on this. I don’t do “escrow” work, nor do I need or want anyone’s 10K.

            DAVID: why haven’t you responded to my refutes of your assumptions?

            Why haven’t you acknowledged it was wrong to, knee jerk, falsely accuse me of a myriad of things WITHOUT HAVING SPOKEN TO ME? D

            Any response to what my ultimate goal is? Any response to how I’ve systematically refuted all of your nebulous, inaccurate, frankly unintelligent points about me? And response to the partial lay out of the mechanisms? Something to date, neither you nor crew has compared to with any degree of sophistication???

            I’ll wait for your responses to all of that, David.

            But no. I don’t work in escrow. And I won’t be swayed to do so by an internet anonymous, who’s already on Healy’s side (oddly), calling me suspicious for rightful agitation over this unintelligible hit piece, littered with falsehoods and ridiculous assumptions.

            However – CHRIS, perhaps YOU can give me a response to the refutes I posted to your assertions? All I see is your proposition. You realize I responded in depth to your assertion that I “cure” PSSD with “nootropics” right?

            This is what I mean. Hold yourselves accountable to actually legitimately debate. This is intellectual child’s play.

            Will await kindly. And be rigorously logical. As I have been.

      • > Why the third party campaign to bombard us with emails?

        Because people are desperately trying to get anyone to do anything.

    • You maybe saw the very clear reasons presented by Dr Healy why this is not meeting any standards. It’s sad nobody does proper research on this, but thinking some opportunist is your savior in unfortunately taking you nowhere.

  3. Thank you for exposing this scam of Deya’s that was obvious to some of us from the start. This guy having ever having PSSD is very questionable to begin with. He actually claimed to have greatly improved and almost cured his own “PSSD” with some regimen that could never be duplicated by anyone else. He also worsened others by playing doctor.
    He threatened to quit multiple times unless he could get more upfront money and the sad, desperate people on his server would give into his demands.
    Not to mention him promising a “cure” from a single Egyptian rat study. The whole thing was just ridiculous from the start.

  4. As someone who has played a part in raising awareness of the Rxisk prize Fund I fully appreciate the fact that you take the utmost care of the money raised so far. So many of us have worked hard to raise the donations level and have done so because we have full faith in Rxisk’s judgement in these matters. It would be a travesty to misuse our trust, and a tragedy for all that Rxisk stands for to be lost, simply by being willing to believe without thorough, close examination of facts. Thank you Rxisk Team for your care, it is much appreciated.

  5. I had been reluctant to email you since we have never had any previous communication or relationship. However, your mentioning of me in your recent article is quite encouraging.

    I understand your point of view. A bit of skepticism is healthy when dealing with matters online, of course — the email does read like a scam, at least for those who have no previous knowledge of me. It’s very commendable that you went out of your way to warn the community of these potential scams.

    The points that you have raised about me are also valid:
    – I do not have any publications, let alone one that has PSSD at its focus.
    – I do not have the required credentials.

    For this reason, I have asked help from my colleagues who have published papers and have previous technical experience with animal research (MSc/PhD) to help with the practical and technical part of the study while my role would be strictly theoretical in nature. But this is behind us now, as I’ve withdrawn the proposition.

    Consider me your younger brother-in-humanity when I offer you my advice:
    The community is very fragile and volatile. There are so many suicidal members and any controversy/drama can and will push some into suicidal ideation and, perhaps, even attempts.I’ve been a member of this community for years and I have seen it first hand as people go into depressive episodes due to drama. Although I have haters, there are people who would jump to my defense as I’ve changed their lives to the better. This creates unnecessary friction between both parties, and might end up leading to boiling bot of despair. Also, there are a few members who took it upon themselves to spread rumors and false claims about me. Please double-check and ask for evidence before taking these claims for granted.

    As for my part to calm down the community, I have done the following to quench controversy:
    1- I have withdrawn the study proposition in its entirety. I have withdrawn it once before, when I heard that Dr. Melcangi is willing to do a study on PSSD but will need fundraising, by the way: (link)
    2- I have declared that I would stop offering consultation service ever since your article. I have also changed my website’s consultation’s page into a list of professionals who recognize PSSD: (link)
    (If you know more I can add to the list, please do mention them).

    I realize that my unorthodox ways can, and probably have, angered some professionals recognizing PSSD themselves. Perhaps my help is appreciated on a personal level, but overall it’s probably for the best to have a stress-free community without controversy. It’s more healthy that way.

    Thanks for your time,
    D. Rabbie

    • This email arrived from DR.

      It seems unlikely that RB will send a similar email – he is much more likely to see himself as being a legitimate business.

      Some of the comments on this post have asked about Irwin Goldstein – rather than the pharmaceutical industry. Thirty years ago Pharma significantly boosted biohacking with their simplistic ideas about serotonin deficits and topping up serotonin levels. Which they knew at the time to be complete crap. Crap that took in mainstream medicine, alternative medicine and was a godsend to both alternative medicine and biohacking – who in selling these messages sell drugs – the little guys feeding off the whale.

      The main point to quibble with in DR’s email is the idea his background would offend professionals. It probably would but as he notes himself this looked like a scam. RxISK has heavily promoted the ideas of “lay” people over professionals – as in Anne Marie with her hunch her SSRI was causing alcoholism. Its championing the ideas of “lay” people about sexual dysfunction and publishing on the appalling responses they get from professionals. It repeatedly says that the people who are failing you most are your doctors. The people we have promoted and supported have not been asking for money.

      Rx

      • David and all. Ryan Ballow here. First – David, I’m unsure why you would write such a post without answering the email I sent to you to connect? Certainly a bit unfair considering you’ve never spoken to me. The bit I posted on your contact info is hardly the sophistication of what I have learned working with real PSSD sufferers (something I do not believe you have experienced with, correct me if I’m wrong).

        The ideas proposed about the consulting part of it: to sufficiently address PSSD, in a client capacity, one needs to spend a hefty amount of time interacting with said client. By degrading what it is I’m engaged in seems more like a subtle attack on entrepreneurship. Which is odd. I’m sure you folks fully understand it’s entrepreneurs who end up usually solving the most complex problems.. right?

        If not – it’ll be clear in time. At any rate, this is a bit strange all together, and people are right to question the motives behind this. You simply could have emailed me, gotten on a phone call, and learned more. You’d of had a much more informed position on this than you do now. You posted a bunch of assertions you obviously quickly formulated, that are unequivocally false.

        Publishing a sufferers email chains and name is also quite alarming. I’ll be in communication with you and your team about this.

        This post is just, extremely strange. Perhaps get out of the articles and into the trenches to understand the complexity of PSSD a bit more, so that maybe you can learn what it really entails? Correct me if I’m wrong but you folks do not have proposed mechanisms for the disorder, nor an attempt at orchestrating a solution yourselves, other than a fund to whoever finds a “cure,” which is a misnomer in and of itself?

        Again. Very strange. I’ll be in touch with you personally.

        • You’re no entrepreneur. Entrepreneurs take risks – that’s the meaning of the word. The people who have PSSD and related conditions are the entrepreneurs. It looks to me like you’re what people call a rentier – a vulture – charging exorbitant prices to people who feel they have no other option and giving them junk.

          DH

          • David.. what? I have zero idea where the false pretenses and attacks are coming from. I’m not an entrepreneur? Do you know what I am doing with my resources to make a solution for this issue quicker and readily available?

            And “JUNK?” Now it’s obvious you have zero idea what you’re talking about, you have ZERO idea what protocols I execute when working with people with this terrible affliction, and again, since instead of communicating with me you decided to write an attack article / comments on me, which quite honestly makes you look crazy.

            Are you in your office drinking whiskey or something? Dude. You’re out of your tree, utterly disrespectful, operating without knowledge that you’re faking to people that you have, and seemingly now doing the community of sufferers an injustice.

            My first comment was an honest attempt at understanding why the hell you would post email chains and instantly dismiss my expertise, WITHOUT TALKING TO ME, and without knowing a shred of what I think / have discovered on the matter. I see that me calling you out on that rash decision is making you more.. rash.

            Honestly. Very strange, man. I’ve got screenshots of all of this in case when you sober up, you realize the mistake you’ve made here.

            Totally unbelievable. Check your assertions, and stop channeling your anger on people you nebulously believe are akin to the pharmaceutical companies that started this mess.

            I am at the forefront trying to solve it. Good day.

            PS: histamine is but a minor part of the issue. Maybe if you decide to have some decency and reflection, we can get into the other mechanistic underpinnings.

            Any off the cuff, knee jerk response shouldn’t be taken seriously. Be a human.

        • Hello Ryan,
          Hmmm interesting I haven’t heard of you till now. So you’re claiming you have the solution for PSSD using nootropics but you charge $3000 for this service is this correct? If so do you have any evidence to support this claim? Any previous PSSD suffers that can will confirm this?

          I have a proposal for you, would you be willing to donate a full $3000 consultation service to a PSSD suffer to prove your claims? Better yet I have $3000 Ill put in escrow and if you can cure me of PSSD Ill pay you for the service. Im a well known in the PSSD community ss Ive been a PSSD suffer going on 15 years.

          Thank you

          • See – this is the issue with listening to a guy that wrote a hit piece without talking to me. No. Nootropics are not the answer exclusively to PSSD. Never did I say that. Healy did (another strange assumption I guess). I worked with a handful of men for FREE, for about 12 months (something Healy didn’t include here, because he didn’t have the foresight, humanity, or diligence to understand my work before he wrote about it) experimenting with various research chemicals to resolve the issue. In that timeframe, I was able to get people into full on windows of anhedonia and sexual function recovery. For some, the windows stayed open after rigorous work.

            But one has to do, and NOT DO certain things. As examples: many things are 5HT agonists. Specifically the 1A receptor. That means during a recovery protocol, people cannot be consuming:

            1. Alcohol
            2. Ginger
            3. 5HTP
            4. Turmeric, Circumin, or any analogs
            5. Tryptophan heavy foods (tuna, turkey, bananas)
            6. CBD (another mistake that keeps people in the hole).
            7. Supplemental Zinc (another 5HT1A partial agonist)
            8. Potato starch (found in a variety of foods – will build extra 5HT)

            And hosts of other things. If a person has any degree of intestinal flora imbalance or permeability issues, that also has to be cleared up. The gut’s response to irritation is… you guessed it, Serotonin production.

            I see Healy making broad brush, mere bandaid suggestions with assertions that DA agonists are part of the solution. They are not. That’s about as unscientific as you can get with PSSD, and Dopamine is but a mere smidgeon of the issue.

            Most people with PSSD do not synthesize dopamine correctly, both because of Tyrosine Hydroxylase malfunctions, and improper functioning of DAT (the Dopamine Transporter).

            D1, and the D like family receptors also appear to be desensitized.

            On the Serotonin side, the 5ht1a heteroreceptor is highly upregulated, while the autoreceptor remains comparable to a manufactured knockout (actually part of the mechanistic underpinnings of SSRI). One will make next to no progress with desensitized autoreceptor function at the 1A site.

            Additionally: through 5HT4 receptor malfunction, likely through some sort of GPCR uncoupling and phenotypic changes, the hypothalamus does not adequately pump out Oxytocin at the right times, contributing to the anorgasmia element of PSSD.

            5HT2C, and 5HT2B receptor function also play, although somewhat minor, a role in persistent PSSD.

            There are various chemicals out there that solve this problem. Essentially, they behave as a sort of “anti-SSRI,” antagonizing the 1A heteroreceptor, while others act to upregulate current 1A autoreceptors, thus controlling 5HT flow.

            But even all the discussion and prominence the 1A receptors get, that still isn’t the majority of the issue. There’s also SERT. SSRIS influence SERT in a seemingly permanent way (that is, until you recover proper SERT functioning). 5HT builds up at the synapse, and keeps the autoreceptors desensitized. There are a few ways that I know of to regain control of the SERT, allowing it to degrade extra quantities of 5HT for recycling and proper re-uptake.

            What people don’t know is that Serotonin IS CRITICAL in the sexual response to stimulus. But when it ends up in the wrong place, or doing the wrong thing, it only contributes to the problem. If the brain knew what to do with the 5HT (like properly shuttling it into cells instead of letting it accumulate in the synapse), you’d have a partial alleviation of PSSD symptoms.

            That was a long winded way of saying: you don’t achieve resolution to PSSD with Nootropics, and I’d challenge YOU DAVID, or anyone else, to prove that I’ve EVER said you do. Because I haven’t.

            On a stagnant community: the mechanisms that underlie PSSD are extremely complex, and it takes someone with a highly functional working memory, to sit down and analyze the (at least) 500 pieces of literature to put the puzzle together. Said person has to have at least themselves to experiment on, but preferably many other people.

            To do that, one has to have a pretty remarkable understanding of neuro-chemistry. One that defies their training, or set of qualifications (me for example, having been studying neuroscience for 12 years, but without academic credentials).

            I do not see that sort of orientation in the community of PSSD sufferers, for the most part. And why should I? People shouldn’t have to be citizen neuroscientists. Their doctors NEVER should have prescribed them SSRIS to begin with. Nonetheless, this is the reason for the stagnation within the community. People only get so far in the puzzle… one of the most complex puzzles to crack of modern times, and one can only fail so many times before they give up.

            I think the learned helplessness (again, rightfully) in the PSSD community gives way to the proliferation of the idea that this condition is permanent. People have the syndrome, go on a crusade of reading, only to formulate the (albeit, incorrect) opinion that it can’t be solved. It can be. And I have seen it in my consulting practice.

            People like David Healy (I’m a bit apprehensive to actually call him a doctor) perpetuate the idea that it cannot be solved. But without a concerted effort, in the trenches, working with people (as I am, daily, for the last 3 years), his and others’ perspectives will remain the same.

            Also I’d like to, in summation, say to people: if you’re relying on the medical establishment (of which Healy is a part) to solve this issue, you’ll become old and grey in the meantime.

            If you’re waiting for someone with “the right credentials” to solve the issue, you’ll be equally old and grey. Problems like this get solved by bright minds, willing to look outside of typical constructs, and sometimes with bold experimentation, that are not bound by a meaningless set of marks by their names, but instead empowered by the indisputable fact that ANYONE with the mental wherewithal, can do the research.

            Chris I think it was? I’ve done what you are proposing. It is partially how I’ve cracked the puzzle. I’m taking this all the way up big pharmas ass, and to do that, requires me to be heavily funded. Once I patent the solution, which admittedly can be a lot more efficient (this endeavor constitutes the majority of my resources these days), I will be extremely public with my findings, both holding pharma accountable, and forcing them to buy the solution. That dynamic, which ultimately goes to serve the entire PSSD community (my main goal, despite nefarious attempts to delegitimize me as some quack out for people’s money), makes it hard for me to give the current solution out for free.

            What I’m doing (which will be proven in time, and though I’m attacked left and right lately, I remain strong and peaceful, confident and charging forward) is far bigger, and will lead to an efficient, readily available solution for far cheaper than my current 3-6 month consults. And if Pharma won’t publish the findings and make the solution available to the masses, I will do it myself through different routes (as I am now, in a downscaled capacity).

            To the community: I WILL GET THIS SOLVED FOR YOU. I have a dog in the game, and it isn’t money. Cash is being used as a mere vehicle to provide a far more efficient, far cheaper, widespread solution to the issue. This is my passion. I’ve found what my purpose is, and what my 12 years of neuroscience research has prepared me for.

            And that is: putting the nail in the coffin of PSSD, forever.

          • Youve claimed to help 12 pssd suffers but yet the pssd community hasnt heard of you till now, very odd.

            Your constant attacking and name calling of Dr. Healy is very suspicious of someone that is in fact lying or hiding something and doesnt want to be exposed.

            My offer still stands Ill put 3k in escrow if you can help me with PSSD ill release the 3k and give you my full support and endorsement. Like I previously stated Im a 15 year PSSD suffer thats well known in the PSSD community so my endorsement would be of a great clout.

            Let me know what you decide.

          • The PSSD community hasn’t heard of me because I do not market to the PSSD community. I’ve been in the trenches working with real people. I do not enter said communities and offer consulting. People that understand the breadth of my knowledge in neurochemistry come to me. And that’s how I want it to be, for now.

            To your point about me seeming suspicious for speaking out against Healy:

            What you’re contending is that it is suspicious to display discontent, with a person that wrote a hit piece on me, without communicating with me, EVER..

            After of course, with good intentions on making an important connection FOR the community, I emailed Healy asking to connect. Instead of just hitting reply, and getting on a call with me (which is what I suggested), Healy writes an unequivocally false article, filled with inaccurate assumptions about me.

            And me being a bit agitated by that is “suspicious?”

            You’re doing essentially the same thing, using assumptive “if then” questions / statements.

            If I’ve achieved resolution in people with PSSD, how come the community hasn’t heard of me?

            Answer: as I explained, I do not market to the community. I’ve read all of their posts, been on all the PSSD discords monitoring, and observed their situations. Marketing to them would ACTUALLY be suspicious and unethical. You’d never see me doing that.

            Does that clear up your confusion? If not, please list where you are still confused, and I will help you to understand.

            Thanks –

            Ryan —

          • Where are your credentials or people you have helped to support your miraculous claims? Of the 12 people how can you be positive they had PSSD?

            Ill ask one more time, a simple yes or no answer is all I ask. Im a long time PSSD suffer, Im willing to try your protocol, Ill put 3K in escrow and if your protocol will relieve me of PSSD then I’ll release the 3k and give you my full endorsement to the PSSD community. Actually ill put $10000 in escrow its yours if you what you claim is legitimate and can relieve me of PSSD. What do you say yes or no?

  6. One thing that seems distinctly ‘American’ is an obsession with men’s sexual health while ignoring women’s sexual health. My adult daughter is suffering from sexual dyfunction too but since she has ‘psychosis’ her sexual health is not viewed as an important issue by most psychiatrists. Indeed, most of her psychiatrists have been more concerned about her being on birth control. Women’s inability to experience an orgasm is considered less important than men’s impotence. Moreover, if the woman experiencing the sexual dysfunction has been labeled with a mental health disorder she is deemed unfit to be a sexual partner, let alone, worthy of procreation. Our research priorities reflect the lower value we place on women. I support this research fund but lament its narrow focus

    • Sarah

      You are right in many ways. But its worth noting that Persistent Genital Arousal Disorder – in many ways the mirror image of PSSD – has one of the only active research groups looking at these issues – based in Queen’s University Ontario.

      There are also a lot extraordinary Facebook Groups where women with this and related conditions share their experiences of treatments they have tried. I don’t get the sense that there are any biohackers feeding on these women although the problems are just as bad. I’m not saying women wouldn’t exploit vulnerable others the way men would — so I wonder what the difference is.

      DH

  7. I believe that Deya is genuine.

    Perhaps the nature of the proposal / request etc. is unorthodox, but given the circumstances, maybe that’s understandable. He’s acknowledged that he doesn’t yet have the requisite background and qualifications that would normally be expected, but is trying to think and act outside of the box to take affirmative action.

    Of course, I also understand and respect Dr Healy and rxisk’s position on this.

    If the research proposal is a no go for the reasons stated, here’s hoping that something else positive and unexpected will arise from these kind of interactions and discussions.

    Best wishes to all.

  8. While reading the last paragraph I just realised , since PSSD I can’t remember a cold with fever, my atopic eczema is nearly gone as well. I was taking the antibiotics every year, from childhood, 12 in total, due to severe, month lasting rhinitis with bacterial infection and that… no longer happens. My frequent visits to dermatologists and ORL specialists ended exactly 8 years ago, in the year I took SSRI and PSSD has started. Coincidence ?

    Were the last person really that wrong, trying to explain those things ? Just because he lacked the combined expertise of neurobiologist, immunologist, endocrinologist and sexologist, so prone to making errors and correctly filter the bits of information from something complex like PSSD ? Is that wrong the people try to generate hypotheses when almost no one cares ?

    People like to act when they see something and no one else dares to do anything. Like in the case of mystery link between PSSD and immunology.

    • Hopefully you won’t find this too harsh but you’re showing here all the elements that let medical quacks, horoscope writers and people like that get away with what they do – you note one word antihistamine and link it to a seeming lower frequency of infections and adding 2 and 2 together you say jackpot. This dude knows little or nothing about antihistamines or antidepressants – its your desperate need for a cure – the same as any of us would be desperate – that has you clutching at nothings like this hoping they offer a lead.

      This is what helps biohackers and quacks in general to get away with what they do – getting us to hand over a large amount of money for junk.

      There are a bunch of people linked to RxISK who have PSSD and between us we scrutinise a lot of pretty sophisticated ideas that come in about what has happened in PSSD – much more sophisticated than the Ballow ideas but even these in our opinion don’t get us to the point of recommending anyone try something based on these ideas. There will be a day when someone cracks this problem and when that comes we will let the close to 1000 people we have links to who have the condition know about this and options that might be safe to try. Meanwhile part of the brief it to scrutinise while claims that might put you at risk of harm and certainly siphon your money away.

      Rx

      • “There will be a day when someone cracks this problem and when that comes we will let the close to 1000 people we have links to who have the condition know about this and options that might be safe to try.”

        But how far out is this? There is currently zero legitimate PSSD research on the horizon.

        Given that you have strong ties to the medical community, what is stopping such research from being conducted on our behalves? Is the condition not well-known enough to warrant grant money?

        There’s a 60k prize pool, but given how complicated this condition is, I find it extremely unlikely that some genius is going to find a blanket cure for this multi-facted condition without formal research of any kind. I don’t quite understand why this money should not be reallocated toward a legitimate PSSD research effort (assuming someone is willing to take on the challenge). It would seem to be a better use of resources.

        I understand that research is a long, cumulative process. But perhaps some leads may open new doors and inspire further research.

        I’ve had this condition over 5 years. I’ve watched my 20s slowly pass me by with no relief in sight.

        People are dead. Many are suicidal. There will be more deaths, unfortunately. We need to find a solution to this — and fast.

        What are our realistic options? What would you do in our shoes?

        – Aaron

  9. healy I’m the most skeptical person too but think with me, do you think biology/biochemistry isn’t a factual matter? then why are we pointing fingers at empirical attempts to solve this??
    honestly, don’t fool yourself, you’re judging people for the place they’re birth not really credentials, instead of looking at the reward Vs cost ratio this poor guy was research reviewing for 8h a day almost everyday this whole year, can you point me a doctor that did the same?? no you can’t bc these guys are sitting at their offices charging $2k for a single consultation bc “credentials”

    • Biology is critical. Part of the problem is that we have consulted professors of pharmacology and others about the issues and they have no idea what is going on. This is a new biological problem and needs engagement from people who know how to do research etc

      It might get solved empirically and in the process the books will get rewritten. And we have lots of people reporting to us the whole time on empirical things they have tried. The objection in this case is to someone like RB taking large amounts of money off people swindling them into thinking he knows what is going on and putting them at risk of harm. None of the people we have respect for who are taking a lot of risks are asking other people to take risks and trying also to extract money from them while they take the risks.

      Your idea of a cool dude and ours seem miles apart

      Rx

      • nice confusion statement, you know i was talking about Deya, who didn’t ask for any money but a little recognition for his monstrous efforts, oh and let’s ignore that a doctor in Egypt makes <1% of the money of a US doctor, that is what we should focus

        • So if neither I nore rxisk has taken a dollar from a single person with PSSD or any related condition and have put thousands of dollars into the Prize Fund – are you asking me to hand this over to some half-baked idea from someone who suggests using a bunch of drugs as treatments that pretty well everyone with PSSD knows don’t work ?

          D

  10. Dr. Healy,

    You said, “Nothing has come from DR for any of us to have a look at.” This was posted on August 17, 2020.

    Several days earlier, Deya Rabbie told his followers on his paywalled Discord channel that he sent research proposals to both you and Dr. Goldstein. He said that you dismissed his research, citing prejudice as the main motive.

    Did you ever receive a research proposal from this man or was that story completely fabricated as well? From what I’m reading, it appears a research proposal was never sent; rather, the first email you are receiving from him is a chance to mitigate damage and save his plummeting reputation in the community.

    All activity displayed by Deya Rabbie has been extremely suspect. Everything reads of inconsistencies and smells of greed.

    You really have to be the scum of the earth to pray on hopeless, suicidal people in order to make a quick buck. Thank you for bringing attention to this scam this has pulled the wool over the eyes of even some intelligent members of our community.

    Aaron

    • Aaron

      I have never had anything from DR – other than the email just posted earlier in this thread. RxISK has had nothing from him either. I doubt if he has ever sent anything to Irwin Goldstein.

      David

        • I need to add a clarification here. I’ve had an email from the first person who emailed me asking whether I received the materials he sent – which included a CV, certificates from the university and a proposal. DR was copied in on this original email.

          The first thing to saw is I hadn’t received any materials in the sense of being aware they had been sent – it was only when I went back to the original email last night that I spotted the materials. My sense from relatively early on in the original email that this was a scam almost certainly caused me to miss the attachments at the end. There are two angles to this – both the content of the email and the fact that it didn’t look like the wording of the person who sent me the email – who has emailed me before.

          I looked at the documents last night. The certificates, CVs and university materials in general (4 documents) are pretty unconvincing. The research proposal is more interesting than the stuff produced by Ryan Ballow and Cortex Labs but its very 1980s, particularly in its use of rats. There was a joke back then that a rat is an animal who when given a drug yields a scientific paper – the implication being most of the papers are worthless.

          So there is some scope in all this for DR to say Healy has got things wrong – is misleading you all. People are going to have to interpret it for themselves.

          Second, I’ve been sent material circulating in threads asking who the fuck is Healy – stole all his ideas from Peter Breggin and things like this. This is par for the course.

          What’s not accurate is this apparently from DR

          If you seek a consultation, there are a few professionals that I know of who recognize PSSD:
          – Dr. Irwin Goldstein, Urologist (USA).
          – Dr. David Healy, Psychiatrist (UK).
          – Dr. David Goldmeier, Sexual Medicine (UK).

          They can be a bit pricey ($200-500+ per consultation) but they might be able to help you out with prescribing either Bupropion, Buspirone, Flibanserin, a dopamine agonist, or even PRP if you are rich enough. You can visit them instead

          There are 2 things not accurate here. If anyone approaches RxISK for a consult on either PSSD or protracted withdrawal problems from antidepressants – with the exception of less than a handful of people with withdrawal problems – over the last 8 years that RxISK has been around we have charged no-one and in fact taken no consults. We make it clear we don’t know what causes either of these treatment problems or how to cure them. We give as much advice as we can for free by email.

          A good example is we ran a recent case involving Venlafaxine withdrawal as a series of posts on RxISK precisely because we figured we couldn’t solve this woman’s problem and didn’t want to take her money off her but wanted to help her if possible.

          RxISK does not – cannot – treat anyone. But if someone needs a report on whether drug X caused problem Y, it it looks like there might be a case we are prepared to interview someone and generate a report. This is once off, takes time and does come with a fee to cover the back-end costs.

          The second inaccuracy is the claim that you may be given Bupropion, Buspirone, Flibanserin, a dopamine agonist, or even PRP – this seems to be just dreamt up. With the rare exception of bupropion for people who are anxious, I never given these drugs to anyone for any reason.

          DH

          • Bupropion, buspirone, flibanserin and various dopamine agonists are all well known within the community. There is no need to pay hundreds of dollars for this information when it’s available for free online. They can also be prescribed by a GP. If you’re in western Europe this sets costs down to a few dollars. Unfortunately none of these work for any notable number of people.

          • You mention the study is “very 1980s, particularly in its use of rats”. Do you have any suggestions for how the study could be improved?

          • Pete

            Most people gave up on rats in the late 1980s. Its not a question of improving on the current study which has certain hypotheses built into for convenience -m this is all that can be looked at – rather than because they are likely to be right

            D

          • Thank you for the clarification. I’m glad it wasn’t a blatant lie. Odd that these emails were sent by separate people, though.

            In any event, there are many reports of questionable behavior displayed by Rabbie. I have not been in his circle long enough or frequently enough to take a firm stance on this. Whether or not he’s legit, we cannot know for sure.

            One would seriously hope that he would not take advantage of folks who are effectively disabled.

            As always, people offering cured or advice should be approached with some level of healthy skepticism.

  11. David – Wonder if Rxisk could give a periodic report to describe what work Rxisk has been doing or is involved with currently or ongoing , eg avenues/theories discarded , others looking promising. I think even if information is needs to be limited for reasons of confidentiality or other sensitivities it would be helpful

    • S

      Would be great if we could. Even with a few people working behind the scenes we don;t have the resources to do this. In terms of everything we do that involves any of the close to 1000 people on our books, we email each individually. This is a vast amount of work.

      D

  12. Dear David,

    I understand your opinion on people with 0 credentials, biohacking, trial-and-error and so on. But what alternatives do we have to be honest?

    Most of us, suffers are young males and we’re literally looking at our lives passing by. I’m experiencing almost 4 years of PSSD and I’m 22 now. Of course I understand the real answer is a legitimate research done by professionals, but how many years do we have to wait for the first study really focused on finding a root and then a potential treatment/ cure? 20 years? 60 years like TD? Because of sluggish pace of progress there is no wonder people are going to take risks for a small chance of slightiest relief. EMA was a huge success, but what has happened since?

    I don’t want to be rude, but what is the purpose for having this 61k $ prize fund? Money is literally freezed and I can’t imagine anybody being encouraged by such prize in pharma business worth billions. I guess it would be enough though to fund dr Melcangi’s study. Maybe those who donated would agree to transfer those funds?

    Apart from that what more can we do? I’d like to know if there is anything we could do as community to get us one step closer to any relief. Being in such state for so long is killing my soul. We, suffers, would definitely throw our money at any possibility of legitimate research! But there is nothing on the horizont! Pace is so slow that we’re starting to give up any hope of normal functioning in our youth…

    Are our lives already lost?

    • The first point to note is that most of those suffering are not necessarily male. There are a lot of women and more women with PGAD who have themselves very organised in Facebook groups and detail the outcomes of a range of different things they do and what the results are. Not sure you will be able to get onto these without 2X chromosomes but might be worth finding a woman who can help you and all men reading this with access to see just how disciplined and thorough these women are.

      You have my view about 0 credentials totally wrong. If you read much on rxisk you’ll see the people whose views we put weight on have had 0 credential. In the case of DR and RB these looked like scams.

      I understand the point of view about having $66K sitting there – its possible if someone came up with a really good proposal that had some evidence of likely success or someone had an instrument that was really going to revolutionise the way these issues are viewed we support it.

      But the PFS foundations have made concerted efforts to get the money off us having already poured a $1M _ down the drain on their own pet theories of what was wrong and now having raised money from people with PFS they are refusing the share the data with anyone.

      As things stand, its an incentive there for anyone taking an empirical approach – accidentally coming up with something that makes a difference – if our volunteers to try it agree it has helped them – the prize will be awarded – but it means that someone will have to agree to make the details of the treatment widely available to everyone for free – and not start a business profiting from as terrible a condition as this. What this post hopefully brings out is that there are people who will happily take your money off you.

      D

      • You’ll never find the solution the way you’re looking for it. BIOHACKERS, and better yet biohackers with the syndrome will solve the issue. Already are. I see this stuff all the time. You academia driven folks couldn’t see a solution if it was right in front of your face, and the convoluted, dinosaur strategy you try to use will be surpassed by people with boots on the ground like Ballow. I’ve been following his stuff for a decade. Haven’t seen you on the scene that long. He mentioned you and this post recently. Probably going to get a bunch of biohackers riffing about your article here. Posts like this disrespect the actual people out there working to solve the issue with legitimate passion.

        Like others have said what else are people going to do? Docs have no solution. Academics sit and postulate all day about it as if they have experience dealing with it, and no one else has a grasp on the chemical mechanisms.

        • If they gave themselves PSSD and biohacked themselves that might be something. Ripping off vulnerable people who will pay anything and take anything is not impressive.

          D

  13. Perhaps it might be a good idea to run a future blog post on some of these sophisticated ideas proposed by RXISK researchers? To give some insight at least.

    Because(and this isn’t to undermine your efforts David) I know for a fact that this community is hugely frustrated at the lack of progress. Personally I would welcome anything that could shed some light into the biological underpinnings of this condition by accredited researchers and professionals. And I know many would feel the same way. Especially as all I’ve really seen so far are theories put forth by unqualified(though well intentioned) forum posters.

    For the record, and having spoken to Dr Rabbie before, I don’t believe he is a scammer. In fact he dedicated a lot of time and effort over the past several years to try and help some of us-giving up his job which provided a better income-and there have been some successes. He has been nothing but transparent and fair.
    The sad fact is, there is barely any help available and we had no alternative but to trust in a stranger from Egypt.

    I also wish to point out that a growing sense of hopelessness is festering fast in this community. There are discord servers which endlessly discuss suicide and how members will never recover. Obviously this is a very dangerous scenario. Newly diagnosed PSSD patients are reading what other posters are saying on discord, Reddit or social media, and instantly deciding that their lives are over. It’s getting worse by the day.

    We need some form of hope, even if it comes from theory crafting or trial and error. I appreciate that this is less then ideal, but people simply can’t afford to wait decades on the off chance this gets properly researched one day.

    Dr Rabbie, at least, was trying to make something happen with the research. However naive he may have been, his intentions seemed pure. It would have been a very poorly orchestrated scam to attempt

  14. Dr Healy,
    Im a long time PSSD suffer going on 15 years. I believe we need to get PSSD to go viral somehow, to grab mainstream media’s attention. I think the best course of action would be to get you on the Joe Rogan Podcast. He has a massive following, and recently signed a 100 million dollar contract with spotify. You on his podcast exposing PSSD would have a profound impact for the PSSD community. Just a thought.

  15. Re:- The Rxisk Prize fund I feel really cross! The guidelines around the Rxisk Prize Fund were clearly explained right at the start. The ‘prize’ would be given for a CURE. The decision as to whether a ‘cure’ had been found would be the Rxisk Team’s valuation of the results, from PSSD sufferers connected to Rxisk. The sufferers would be the ‘guinea pigs’ if you like but the decisions would remain with the Rxisk team. NONE of the funds raised would be used IN ANY OTHER WAY.
    It was in response to these details that so many of us who are not sufferers gave our all in supporting the cause.
    PSSD etc. must be horrific but they are NOT the only lasting side effects of being prescribed psychotic or other drugs. It was the idea that finding the cure may help with understanding other side effects and even withdrawal difficulties that caught my attention from the start.Of course waiting for a cure is difficult but expecting money, donated by trusting non-sufferers, to be thrown at areas which the Rxisk Team find suspicious is WRONG. The fund still has a way to go to reach its target – we should all be concentrating on that. Once reached, it will belong to us who have donated, until a cure is found. Rxisk is the banker and, as such, must honour those guidelines as set.
    I do feel, however, that maybe a closing date should be set for the Prize Fund. If, at that point, there is no sign of a possible cure I would be quite willing for all the donations that our family have made to be transferred to the main Rxisk fund. That would be my personal suggestion – I would not dream of suggesting that all others who have donated should follow my idea. I would never agree to the throwing of my family’s donations to any individual or group that does not satisfy the Rxisk team’s full approval.

  16. Smelling Rats

    How the hell do we know who to trust enough to allow them to take care of our health.. Googling can take us so far but when it get to the complicated physiological stuff there is only so far many of us can go without having to take some leap of faith albeit backed by the addition of the skepticism we have learned about ‘respectable’ ‘academics’ ‘peer reviews’ ‘prestigious journals’.
    I am referring as an example to Prof. Puri (whom I posted very favourable comments on in previous blog)susanne says:
    August 14, 2020 at 12:01 pm

    If there’s a smell of rats it’s worth trying to find them – they can breed unsuspecting followers.. I emphasise that there are no concerns about Puri directly but – and possibly before Puri joined there are a series, not just one or two ,of concerns published on a google search And this as well as the good and the bad testimonials is what would ring bells rightly or wrongly for some of us regardless of the credentials of Puri Again there is nothing pointing the finger directly at Puri . a lot of medics make mistakes, even serious ones during a career same as any other profession but the are a lot referring to the Breakspear.

    He is one of the directors of the Breakspear Clinic. Breakspear Medical (previously called the Breakspear Hospital) is a private medical clinic in Hemel Hempstead, It was founded by Doctor Jean Monro.

    Contents
    1 Controversies
    1.1 2012 General Medical Council complaint against Jean Monro
    1.2 2012 Advertising Standards Authority ruling
    1.3 2004 Sacking of doctor for vaccination mistake
    1.4 1998 General Medicine Council complaint regarding “dishonest” CV
    1.5 1990 World in Action TV episode “The Allergy Busine
    Controversies (Bearing in mind the GMC is and was itself a mess)
    In 2012 the General Medical Council that oversees professional standards for doctors ruled against Jean Monro regarding her treatment of a patient using chelation therapy.[1] The ruling stated:..

    In April 2009, Dr Monro advised HB that he should embark on a program of chelation therapy to remove lead from his body. She did not measure HB’s blood lead concentration, refer him to a specialist in toxicology or lead poisoning or seek the advice of the National Poisons Information Service. Further, Dr Monro did not explain to HB or his GP that the DMSA challenge test alone has no demonstrated benefit in the diagnosis of lead toxicity compared with analysis of HB’s blood lead concentration or that the challenge test had been performed using a substantially greater dose of DMSA than was either necessary or appropriate. In addition, she did not advise HB or his GP of the possible complications from chelation therapy. Her recommendation that HB should embark on a program of chelation therapy was made despite a provoked urine sample alone not being an appropriate test upon which to base a diagnosis of lead poisoning or toxicity; made despite her not having specialist training or expertise in clinical toxicology or in the investigation and treatment of lead poisoning; based on inadequate evidence; and potentially harmful to HB. The Panel has found that her conduct in this regard was not in HB’s best interests. This conduct and behaviour does not meet the standards required of a registered medical practitioner and breaches provisions of Good Medical Practice. It is misconduct which undermines the public’s confidence in the profession and risks bringing the profession into disrepute. The required standards are set out in Good Medical Practice (November 2006), namely, paragraphs 2 and 3. Whilst this misconduct in itself is not so serious as to require any restriction on Dr Monro’s registration, it is necessary in response to issue this formal warning.
    Further, Dr Monro must not carry out any procedures which are inconsistent with the unequivocal guarantee that she has publicly given to this Panel, namely pre and post urine challenge testing and chelation therapy. Failure to comply with her guarantee may be regarded in its own right as giving rise to an allegation of further misconduct.
    2012 Advertising Standards Authority ruling
    In 2012 the British Advertising Standards Authority (ASA) that regulates advertising ruled against Breakspear Medical for claiming chelation therapy was an effective treatment for patients with various diseases including chronic fatigue syndrome.[2][3]

    2004 Sacking of doctor for vaccination mistake
    In 2004 Dr Michael Wetzler was sacked by Breakspear Medical after admitting giving the rubella vaccine to a child patient instead of the intended measles vaccine.[4] He was suspended for two months by the General Medical Council.

    1998 General Medicine Council complaint regarding “dishonest” CV
    In 1998 the General Medical Council became aware of an accusation that Doctor Monro had made false statements on her CV, claiming she had held positions at five hospitals that she had not held.[5] The GMC wrote to her recommending she amend her CV, stating:
    Your CV can be interpreted as implying that you were appointed by each hospital to run a department within that hospital. Such an implication is clearly without foundation.
    1990 World in Action TV episode “The Allergy Business”
    In 1990 British TV channel ITV aired an episode of the current affairs show World in Action entitled “The Allergy Business” which was critical of Doctor Jean Monro.[6] She took legal action and won.
    Jean Monro (Medical Director)
    Alister Monro (Managing Director)
    Neil Monro (Finance Director)
    Basant Puri
    Peter Julu
    Bearing in mind that there is much hostility about these treatments there are still too many past issues to ignore – but it had a good rating in 2018 from the (discredited )CQC
    To be fair –
    Breakspear medical : the good and the bad! – Rosa Rainbowsrosarainbows.wordpress.com › 2017/03/28 › breakspea…
    28 Mar 2017 – It’s been about 2 months since I first went to Breakspear Medical, a hospital which specialises in diseases relating to the immune system.

  17. I totally agree with David Healy’s opinions.
    There are so many charlatans out there, that try to make a quick buck out of the sick and vulnerable.
    If there was a cure for PSSD, some form of cancers, auto immune disorders, cognitive impairments ~ no one in the health industry would be making money.
    From my experience, I was not expecting Western Medicine to damage my good health.
    Once the damage is done, I was put on a ‘giro di carnevale!’
    This is a futile ride of your life that professionals put you on to assess what you have got.
    The tools they use harm and then I had to put my already DAMAGED HEALTH at risk by proving to them what I have got. How absurd is this?
    To make matters worse, I was then put through a battery of tests that made my health maladies worse.
    If I did not have enough common sense to STOP what they were doing to me, I would not be here today, writing.
    They feast on the vulnerable and some have no cares in the world.
    It also depends who you get on the day because if you get someone who cares about money, you are in for a very rude shock, indeed!
    Let’s HOPE that they find a cure for people who are suffering without the added hoo-ha!
    There are so many spin doctors out there and sadly the gullible who believe, do not know any better.

  18. Meanwhile the movers and shakers continue to ignore the obvious. There was an article in the Guardian last week about a minor celebrity who was attempting to destigmatise Borderline Personality Disorder. The male Celeb suggested sexual dysfunction was something you just had to live with, with this ‘illness’ No mention of medication side effects. This is a trend…. Fit Young Celebs both Male and female are persuading their ‘Followers’ that sexual dysfunction is the price you pay for having a MH diagnosis… Lady Gaga, Frank ie from the Saturdays…. Where is the outrage, or 2+2=4 regarding the real cause of sexual dysfunction? I would like to see Celebs who promote especially men:s MH getting involved.. Prince William, Prince Harry, Megan Markle, Russell Brand, Ricky Gervais, The Gypsy King….
    Thank you Professor Healy for your honesty, tenacity and as ever gritty passion…. X

  19. THE RESEARCH ZONE
    Research Review & Articles By Pharm. Rabbie (B.Sc)

    Rabbie
    14 hours ago
    Dr. David Healy: 3 Points & Inspiration
    In order to understand what this article is about, it’s imperative to read this specific article written by Dr. Healy, and its comment section: [Bio Rip-off, Bio Delusions, Bio Hack?].
    Right off the bat, let me start by saying that my article is neither about defending myself nor pointing out any faults of Dr. Healy’s replies or behavior. If you follow my blog, then it’s likely that you already know what I did for the PSSD community over the past years and what kind of a person I am.

    Instead, this article is about some points Dr. Healy has reminded me of and the positive changes he has inspired me to make.
    Point #1:
    It is bad practice to make money off of the community as it will be labeled “preying on the vulnerable”, unless of course you are a specialist with the right credentials.
    This is actually a quite serious matter, and I agree with it. There are some people out there who are, indeed, preying on people who have these lesser-known conditions. I have met such a person myself, in fact, just a few months ago.
    Members of the community do not know who to trust so it’s overall better to promote trusting in people who at least have the credentials even if they can’t help. At least they won’t harm you either.
    Inspiration:
    This has inspired me to terminate my consultation service. Although I’m a pharmacist by trade and many patients have benefited from my consults, perhaps it is better to leave the educated trial-and-error approach to specialists. This way, we are reinforcing the idea that specialty and credentials matter on the Internet, and this makes it a safer place.
    Patients who paid a visit to Dr. Goldstein report that he had prescribed Flibanserin and Bromocriptine before. Although I disagree with both drugs from a neuropharmacological point of view for PSSD, he’s at least putting an effort in the educated trial-and-error approach — something the community direly needs for any possible chance at relief.
    Patients will always try various substances to address their symptoms on their own. This is an undeniable fact. So I hope more specialists would help their patients by educated trial-and-error under their supervision.
    Point #2:
    Despite the neuropharmacological knowledge I’ve amassed over the past decade, I am seen as a small fry both by specialists and the research community since I do not have scientific publications or credentials.
    This is a no-brainer. Hell, even if I were a prodigy in neuropharmacology, no one will take me seriously without publications and without a PhD, preferably from a Western university. This is always good to be reminded of.
    Inspiration:
    I am a fresh graduate (2018), but I have spent my time on PSSD instead of gaining the work experience required for traveling abroad. Working on MSc and PhD actually requires a lot of money.
    By helping the PSSD community full-time:
    1- I’m not making enough money to invest into pursuing higher degrees.
    2- I’m not gaining work experience that would allow me to travel abroad to make said money.
    Healy’s reaction has inspired me to look out for myself first and foremost.
    Point #3:
    No matter how old you are or how educated you are — you are still fundamentally a human being who is prone to following your own confirmation bias.
    This is something I noticed all around me and in different societies. Age, experience, and education don’t matter when it comes to confirmation bias. I find it really thought-provoking. Looking at ‘haters’ replies was very interesting.
    Inspiration:
    This experience has been enriching and it has inspired me to educate myself on different types of bias as well as on human behaviour

    PSSD Collaborative Research
    © 2019 by The Research Zone.

    • There is an anomaly here. DR seems to be giving out about Western academics who pour scorn on his non Western credentials but at the same time he has been pouring scorn on the not-at all credentialed people with PSSD who should listen to him a pharmacist.,

      In fact the RxISK position on pretty well all things linked to all drugs is driven by non-credentialed people. We believe that DR should be listening to people with the condition rather than trying to preach to them.

      The reason to figure his research proposal was not very good was not because it didn’t come with Western credentials but because it was not very good.

      There are a number of Egyptians closely linked to RxISK and hopefully will be more soon

      Rx

  20. It’s funny how DR continues the emotional game with the poor followers. But ok if someone is still willing to provide the life of this guy then just go ahead. Don’t expect to recover. Expect to see limitless number of stories that never end.

  21. David, I am defending Ryan Michael Ballow.

    You seem to utterly reject all of Ryan’s hard-work.

    He is in the trenches working tirelessly to try and figure out a solution, while all you do is judge and critique people like him.

    Where are your theories?

    Help explain to me why cyproheptadine works.

    But it doesn’t work when we dose it acutely.

    In fact, a single dose of cyproheptadine (<1mg), will cause the following effects:
    -Horrible libido.
    -Fatigue.
    -Ravenous appetite.
    -Incredible digestion.
    -Numbing of all my emotions.

    BUT…… It's the REBOUND of cypro…. That CURES us of PSSD.

    DAY 4 and 5 AFTER using 1mg of cypro, there's this incredible SNAPBACK effect….

    Orgasm returns, no more blunted libido, everything amazing.

    But WHY….

    What is happening 4 days after Cypro?

    I need help understanding how to replicate these effects.

    • Great that you are defending RMB, John.
      Perhaps you can itemise for us all the hard work he has been doing on understanding PSSD – all I can see is him ripping off people with the condition and using them to make claims about treatment that don’t hold water.
      Maybe you can tell us all why he is not taking up Chris Governale’s challenge?

      The point you mention about cyproheptadine is not specific to it – happens with lots of different drugs – no response on the drug and then soon after stopping a temporary benefit. Almost everyone who has PSSD knows about this.

      This is part of the reason why we need pharmacologists involved – not RMB. I’ve got a PhD in pharmacology but I still figure we need career pharmacologists to look at this issue which I am sure offers a lead – unfortunately it also offers leads to scammers.

      Just below I have cross-posted the some information from someone with CFS posted earlier today on a different post. This is information shared free with others. We’ve been sharing everything we feel is solid information with people on request or in posts and would feel morally obliged to make any solid advance we come up available for free to everyone. Temporary responses to cyproheptadine does not constitute a solid advance.

      D

      • I agree with dr Healy on this one. If he is so confident in his work why not take up the offer of mr governale and prove the whole pssd community he is what he sais he is. He hasn’t. Near avoiding the whole proposition, and for someone to get our hopes up with little to no proof is just out right ridiculous.

      • “All I see?”

        This is because you see next to zero percent of the picture. YOU ARE MAKING ASSUMPTIONS.

        God – I am blown away by no ones capacity to hold this guy intellectually responsible for his wild, out their claims. David is this how it goes? You can assert anything you want, without evidence, have the CHANCE to get all the evidence you seek (via the email I sent you, which you didn’t answer, and instead decided to write this article), and CHOOSE not to do it for the sake of having some controversial article posted, that makes people think you actually care about whether or not they get better from PSSD?

        And bravo. You have a mark by your name and still have zero idea on what underlies PSSD, and how to resolve it. Can’t even healthfully debate with me on all the points I’ve successfully refuted of yours. Having issues with Alzheimer’s perhaps?

        You’ve done zilch for this community. Go back to inaccurate postulation. I’ll be continuing to solve the problem. Get back with me when you work with clients FOR FREE, for a year, and then end up making substantial progress on PSSD symptom resolution.

        Until then, with respect, you’re no one. You’re a journalist, man. And a bad one at that. Riding on your work years ago, and your self proclaimed magical PhD. In the real world, it means NOTHING.

        This is the real world David. Not some internet play zone. I use to take you seriously. Now, I do not.

        • If you’re prepared to show me the basis for what you do – why not post it here. Otherwise I figure you’re a vulture who will likely just pick on the most vulnerable you can find – who when you give them stuff and things turn out poorly you can tell that this as a probe to test their systems – one more demonstration you’ll tell them that you know what you are doing.

          I’d think this was laughable if I didn’t think it was dangerous.

          D

  22. it’s ridiculous to use an animal who’s physiology is most similar to human for finding the roots of PSSD, but it’s not ridiculous to use the same rat for developing of new PSYCHIATRIC drugs huh?

    • Want to name a drug discovered in a rat? Sure rats and rabbits can get used to look at half-life issues and possible teratogenicity and there was a great deal of interest up to about 1990 to look at the effects of drugs on animal behaviour – but exactly how to you think a rat could be used to work out what’s going on in PSSD?

  23. That “Mr Rabbie” guy is (probably) not a regular scammer, but he is of dubious character and principles and generally acts like a typical narcissist. First of all, he is not an academic “doctor” as most would imagine it, but has a bachelor degree… That is two degrees below a doctor’s degree, even if one allows for it to be a very “demanding” bachelor in his country or whatever (by the way, I have a master’s degree in something unrelated, but I don’t act like some saint or superstar because of it). Then, he is extremely uncommunicative and doesn’t discuss things at all. Ultimately he has taken it to the extreme to shut himself off from everyone but those who pay him… This shows that truth, a treatment and well-being is not his priority, but some sort of feeling of authority and control. Unfortunately this works well with most of his “cattle”. Then, he has repeatedly proclaimed a 100% or near cure for himself, most of them quite primitive and transparent even to an amateur: like acetylcholinesterase inhibitors, NMDA-antagonism (ONLY the one he has chosen, because otherwise it would detract from his special smart choices, which are fairly random). Now there are things to be said for each approach, but especially the first one was such a primitive “it fixes your whole brain” approach like from someone who has heard about supplements for the first time. No-one has copied this arbitrary success of course. His articles mostly ignore getting to the core of the issue and appear to try to show off about his detailed knowledge. Even if he can’t decide on an approach, he shouldn’t be so arrogant, yet he has installed a strict non-tolerance approach to open discussion and has turned the forum very hostile, completely subjected to his magical and absent “authority”.
    It’s a mild “crazy” person, and I do not take him seriously, as he doesn’t behave like a person should and has turned that community into a little cult of sycophants and “guardian” trolls.

  24. I couldn’t agree more.

    It is subtle, but it is possible to spot many “red flags” on his posts and behavior. I could not handle staying on his self-entitled research discord for a month.

    There were many tidbits of Pubmed Abstracts posted almost every day without a research plan. But certainly useful to impress layman with words like “silencing, glutamate, or downregulation.
    Usually, intending to use lots of jargon and terminology that was not just irrelevant but, in fact, entirely off track. Aside from neuro-terminology, there is also noticeable the selection of the most unusual English synonyms, which is a cheap trick to pretend superiority as “talking smart.”

    There was also F.A.Q (ask the guru) sessions. Anyone with a minimum skill in google search can run that with lots of copy and paste of sentences from rat-studies.

    For the surprise of nobody, every time a pretender feels that they’re close to being exposed, they react with contempt, anger, and aggression by himself of his gatekeepers. It is exactly like a little cult of sycophants and “guardian” trolls, as described above.

    Any researcher in neuroscience would feel secondhand embarrassment while reading the made-up “PSSD subtypes.”
    It has broken the record of terminology per paragraph. But worse, It was specially made so that any somatic complaint “fits” in one of the “subtypes.”
    Before being exposed here, he tried to expand his market, offering consultations to other conditions like PFS and any other complaint after taking psychiatric medication.

    In summary, He should be taken seriously as someone that does not have credentials to practice Psychiatry, neurology, endocrinology, sexology, psychology.

    Limiting himself to fill prescriptions, informing patients about food, alcohol, and other beverages interactions at a pharmacy counter. That is the place that he should have stayed since his graduation.

  25. In my experience there are two camps of people in the online psych med injury world: those who are seeking validation about what happened to them, and those who are seeking a solution.

    The validation seeking folks revere you Dr. Healy. They will eagerly post “I had a consult with Dr. Healy and he said it’s true, I have brain damage!”

    But where does that get one?… If you’re trapped in a prison of feeling intolerably horrible it gets you exactly nowhere. Oh what, someone with a degree just confirmed that psych meds can injure you? No shit Sherlock.

    Frankly, the people seeking tangible solutions are able to see that it’s not going to come from you.

    And your defensive and dismissive attitude towards the people rising up in the community and doing their best to find actual solutions and even reaching out to collaborate with you is pretty despicable.

    If you’d like to refute this, then perhaps you can name one person you have helped to tangibly improve their symptoms?

Leave a Reply