Where’s Anonymous?
The following email arrived last week from someone who is unknown to me – has never filed a RxISK report about PSSD, never contributed to the RxISK Prize, never previously been in touch that I know of – at least under the name offered – doesn’t sign off, and is unwilling to engage in a public discussion but starts off on very familiar terms.
David,
I have followed your work for years and have respected and appreciated you discussing PSSD. No one else at scale has discussed it like you.
But the post you put up on biohackers discrediting them lost my respect for you, as well as the rest of the community. Have you been in the Facebook forums and YouTube posts on lately?
The consensus is: you made a bad move discouraging people from actively trying to fix the issue working with people. Look up ergogenichealth YouTube channel and recent video. People think you’re acting moronic, and frankly I do too.
If you want to be a champion for pssd sufferers, you need to be a champion for pssd sufferers. You don’t do that by discouraging recovery experimentation. I interact with many people prominent in the community, and the sufferers tone is that you made a grave mistake, and the now leaders in the field have been shown a large support by community members, in response to your post.
I’m not sure what prompted you to turn your back against recovery protocols, but it has left a sour taste in the communities mouth around you, and sadly, me too.
I used to respect you. Now I realize you’ve done nothing for us. Nothing at all. Your theories on it aren’t even correct, and you somehow seem against the idea of a resolution. After all if it was solved you’d have no more speeches and books to profit from.
Use to respect you. So did the community. Now we do not. I think we now realize you never genuinely wanted to help us, but instead, yourself.
Bad Move David
For the Record
The Bio-Rip-Off post was not discrediting bio-hackers. It was against vultures who rip people off.
High in the list of vultures who rip people and governments off are pharmaceutical companies. Most of the people who end with Enduring Sexual Dysfunction are people who probably didn’t need the drugs they took, and who were not informed of risks that were known about in the 1980s.
As part of a marketing of their pills industry created a biobabble – loose and meaningless talk about neurotransmitters that replaced a psychobabble that had gone before it. This junk was incorporated into the complementary medicine and healthfood industries who talk about how this and that can adjust your serotonin or dopamine – and increase the sales of drugs in the process. And it also laid a basis for bio-hacking and wellness hacking.
Many of these who have been biohacked and bio-ripped off by pharmaceuticals are in Once Bitten Twice Shy country. They will never go near a Rip Off merchant. They are quite safe from the Ryan Ballows and Deyan Rabbies of this world. Many put in a huge amount of work instead to raising the profile of the condition and getting research going rather than taking risks with more chemicals. Most of the work behind RxISK is done by people in this group.
There is another group – and I would probably fall into this group if I had an Enduring Sexual Dysfunction – who research the options and likely know more than any Ballow or Rabbie and who experiment with a variety of possible treatments. Many get in touch with me for any thoughts I have about the wisdom of trying X or Y. I respond to pretty well every query – several every week – usually supporting whatever it is that is being tried and asking for feedback on the outcomes. In some cases that look promising I pass on the information to others to try – but nothing interesting in one person so far has appeared to generalise to others.
There have been a huge amount of things tried but no solid leads so far – other than confirmation that many things can produce a temporary response, typically after they have been stopped. This suggests that PSSD does not involve permanent damage or that at least the damage can be counter-balanced.
There is another group of people – much smaller, perhaps younger, maybe less confident in their own research abilities, who have fallen into the clutches of the Ballows and Rabbies. The post was about alerting them to the risks.
Never Wanted to Help Us
RxISK has been running for nearly 10 years now. The Enduring Sexual Dysfunctions (EDS) came on our radar very early on along with a host of serious problems that antidepressants and other drugs can cause.
We feature the work of people affected in identifying the culprit drug, and sometimes an answer to the problem as with Anne-Marie and SSRI induced alcoholism, which is the most read post we have ever had. We have people at present working on putting a grid in place that might offer possible leads for people with EDS or SSRI withdrawal to try, which hopefully will be posted soon. Vanishingly few academics or doctors featured on these posts.
In the case of EDS, all the contacts with people have been done for free.
Hyper-concerned about people’s privacy, when we get in touch with the 800 or so people on our books we email each individually – there is no group mailing. This is an incredibly time-consuming and close to physically painful procedure – something that would be a lot easier if people ‘came out’ but we respect the difficulties almost everyone has with this.
In a lot of this work, RxISK acts as a focus for a growing number of people who are doing the work – chasing leads, chivvying people to commit to doing things and sharing information about what might work to raise the public profile of EDS and steering people away from reinventing wheels based on things we have learned from committing to the task for the long run.
In terms of the RxISK Prize, all funds are held in trust. Not a cent has been spent on anything or would be spent on anything other than rewarding a genuinely effective and safe treatment/cure. As part of the price of rewarding whoever finds an answer we would insist on making the knowledge of what works available for free to everyone who suffers with EDS.
Another part of the Prize is its role in perhaps saving lives. Someone looking at what the Ballows and Rabbies have to offer might just pause for thought – if they haven’t claimed the prize, do they really have something that works.
If the Prize is not claimed we envisage handing back all moneys to all donors. We will alert people so that even anonymous donors, if they can show what they donated and when, will get their money back.
In a sense we are not holding money. We are holding pledges and if there is a very wealthy person out there who wants to pledge money rather than donate, this might be an inexpensive way forward for everyone.
If the Prize Fund were half a million dollars, mostly made up of pledges, perhaps that would incentivize more research. Something for potential pledgers to consider.
High Stakes
Something else to consider is that people are dying. Younger people mostly. They have done research and figure that certain hypotheses like the very widely cited epigenetic hypothesis has nailed the problem and that there therefore must be treatments to reverse these epigenetic changes. They are prepared to take risks with drugs like this. Failing that they can’t see a point in living.
David Stofkooper was one such person. He got in touch. We listened to him and didn’t persuade him not to biohack. We set up a meeting with some very serious researchers who looked like the best bet to be able to let him know how solid these epigenetic ideas actually are and what treatments if any might do what he wanted. All of this was done for free.
I don’t know if things were free with the researchers he met – it’s likely he paid nothing. Ultimately however he felt nothing could be done and he took his own life. David’s mother is now one of those doing the most to raise the profile of the condition and the researchers he saw are now actively engaged in research in this area.
What keeps the RxISK effort going is trying to avoid more deaths like David’s and a hope that it might be possible instead to end the terrible suffering of those who are affected.
There is no effort to stop people taking stuff. But it is unquestionably the case that wherever there is suffering there will be people who spot an opportunity to make a fast buck. Ballow seems to me to fit this bill.
What next?
Does Anonymous figure the Ballows and Rabbies should just be given a free pass? A group of people willing to celebrate rip off merchants is not my idea of a community. Judge for yourself.
A
DH
If you were a man you’d be able to cope w a public response
A
Dude you are a fucking total dick. YOU DO NOT CARE ABOUT PASD SUFFERERS.
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I am probably one of many pssd sufferers sitting on the sidelines reading these blogs hoping for a cure. You so called “biohackers” will always be viewed as vultures until you come out with an actual cure. Stop attacking the one credible person that attempts to out you and persuade pssd sufferers to not get mixed up with you people and fall into an even deeper hole. come out with a cure and I’m sure that’ll shut us all up and prove you guys are what you say you are. Other than that, continue collecting money from vulnerable, disparate people and keep us out of it.
Everyone should be concerned about the harms being caused obviously ,but splits amongst campaigners so often benefits those who are holding the control, and leaves ‘sufferers’ with few trustworthy places to go.in this case pharma, GPs, psychs – all the well known culprits will love to see energy being disapated by rows between those who could be looking for a way to collaborate – Its unsurprising that people are massively fed up but Rxisk shouldn’t be made the whipping post. To keep going against all the odds can be exhausting.
David I think it’s useful to have given the information published above epecially including what actions have been taken and what will be posted soon. (I haven’t read all the back logs so some may have been published already)As much transparency as possible about what is happening behind the scenes .is encouraging and engenders trust . Some of us have no expertise some have a great deal through observing themselves and ;sharing’ the information – there is nowhere else it can be examined and taken seriously – And not just the physical symptoms – the attitudes and ignorance of ‘professionals’ is not documented to the extent Rxisk has done – There is some evidence that the work of Rxisk has influenced some at last even if it is not always acknowledged. It would have remained a hidden scandal for much longer without years of resilient work by Rxisk.Anonymity has meant a lot of information could be gathered via the blog but a name could have been given to David and the letter published anonymously – if there is going to be a run on negative e mails they may be meant to undermine but many people need and respect the work and find it a constant support. The opinions have been aired so surely that should be enough now.
Regarding who contacts Rxis, and other forums – they tend to be young (what ever the cut off for ‘young’ is) so is there a reason for this? ‘Older’ people have grown up with computers so contacting forums wouldn’t put them off? Are youger people being given more prescriptions and suffering more adverse reactions?
I have paid a high price for coming to Rxisk and saying it as it is!
Why is someone taking out all their anger and frustration on RxISK even if they offer no solution. Why offer any solution if there is no solid science by what one can offer?
There are so many charlatans out there profiting out of the sick and vulnerable and as far as I am concerned many in their field have offered NO HOPE for sufferers out there.
If anything, rxisk has given me a voice to raise issues that no one is prepared to talk about because many have become sheeple and are too scared to rock the boat.
Stone walling, is another method used by those who don’t want people like us to speak up!
My opinion: The only solution that can be given to sufferers out there is to stay away from people who can’t offer any solid solutions.
Stay away from medicines or other magic lotions/potions that compound to your health issues.
Rxisk is not for anyone’s entertainment or enjoyment.
It is a place where people can raise issues and be supported by many who have a journey that is not exactly for the faint hearted.
If RxISK is unable to offer solutions, at least it is being HONEST about it!
Many don’t see it this way because they want a ‘quick fix’ solution to health issues that we don’t have at the moment.
My advice is genuine and sincere.
STAY away from those who don’t care about your physical and mental well being.
There are so many people out there that make so many false promises and then leave you in a lurch when the damage is done.
Without Rxisk, many of us would not have a VOICE and in these uncertain times people who speak up are needed.
We need more people involved with RxISK to keep the sharks at bay.
Tis a quandary.
Without clinical trials we are uncertain.
With clinical trials we are uncertain.
I’ve never really been one for ‘supplements’ that purport to do this or that. Years ago I tried the Cal/Mag thing to help with Paxil withdrawal. It didn’t do what it said on the tin.
I’ve never really understood anonymous comments either. If anyone wishes to strengthen an argument why fly under the radar? I can understand why victims of PSSD would wish to remain anonymous, it’s not something that would be understood by a lot of a victim’s work colleagues and a PSSD victim going public could become the brunt of jokes.
Looking into this bubble it appears, to me at least, that all was going swimmingly well until you highlighted the flaws. It appears you’ve criticised something that may have been lucrative for the vendor.
Hence the backlash.
I’m guessing the business model didn’t include, ‘what should we do if we are rumbled’.
BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m3260 (Published 24 August 2020)
Cite this as: BMJ 2020;370:m3260
Raymond M Johnson, associate professor of medicine (infectious diseases)1, Peter Doshi, associate professor2, David Healy, professor3
This week’s poll
Covid-19: Should doctors recommend treatments and vaccines when full data are not publicly available?
No 79.67% (1,489 votes)
Yes 20.33% (380 votes)
Thesis: “Post-SSRI Sexual Dysfunction: Exploration of the Sexual Domains and Symptoms” 2020 http://dspace.library.uu.nl/handle/1874/399427
I appreciate RXISK and all that’s done behind the scenes. I only hope that at some point we find something to give relief to us out there just trying to live a normal life with all of this.
Thanks for this post, Dr Healy. I found it helpful.
Obviously, everyone with PSSD is looking for hope and reasons to be optimistic that the situation will be better.
I think there have been some people who were excited about the possibility of research, or at least dialogue regarding it, and who have trusted Deya and believe him to have been genuine in his efforts (regardless of the perceived rights or wrongs of the methods). I suppose that some of these people have felt (again, rightly or wrongly) that a perceived avenue of hope has disappeared, and feel upset about this.
I hope that those people who felt angry or upset about that (like the person who sent the email in this post) will read this post and get a more balanced perspective and greater understanding about what RXISK does and understand it’s position in regards to bio-hacking etc.
We all need to stick together and work together to keep raising awareness and discuss potential solutions.
Thanks Dr Healy for your continued efforts.
Deya was clearly attempting to provoke a reaction by quitting after David called him out. No one who believes in what they are doing gives up so easily. His magnificent meltdown speaks for itself.
Ummm m only today saw that Ryan Ballows is now suggesting PSSD can be a result of taking Benzos.. That is not true… There is no Scientific evidence for this…. Could it be Ryan B is now targeting Benzo users as well as those on anti-depressants???
I am not keen on the use of words like “cure” or “remedy” when discussing complex health issues. Being complex there is never a singular solution. The solution comes from identifying a myriad of contributing factors then dealing with each as best one can in some sort of coordinated manner.
Solutions for such chronic health issues, in addition to being complex, do not work overnight. It is unrealistic to expect the “cure” to work, if there ever is one, or the remedies to work if a person has been in a deep hole that is getting deeper and such for what may be decades. It is like the journey of a thousand miles, the solution may take a lot of persistence and a heap of patience.
Finally, I can understand the immense frustration sufferers feel especially when there appears to be no effective solution. My heart goes out to you.
Keep strong!
Q. Why are zombie movies so popular? Maybe because so many (too many) people identify with the walking dead. What ever the reason it’s clear that far too many folks are dragging around feeling half dead. There was a program on Netflix about crowd sourcing solutions with regards to medical problems called DIAGNOSIS, predicated on the possibility that SOMEONE somewhere might have an answer/solution to a medical mystery or condition. All input was welcome though not all input was deemed helpful but It was the spirit of collaborating to help an individual in need of a medical miracle that tapped into global knowlege . I thought it was a brilliant model/method of global problem solving—one that could/should be used much more to solve difficult or perplexing medical conditions.
RE The series DIAGNOSIS – crowdsourcing solutions for medical mysteries/problems.
Contact information is:
Dr Lisa Sanders RE Diagnosis
203.867.8117.
203.789.4044.
203.789.3007.
Email. lisa.sanders@yale.edu.
Lisa Sanders, MD, FACP < Yale School of Medicine
Dr. Lisa Sanders crowdsources diagnoses for mysterious and rare medical conditions in this documentary series based on her New York Times Magazine column.
Perhaps you can get PSSD on the show for next season, or else do your own version of the show.