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.
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.
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.
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.
If you were a man you’d be able to cope w a public response
Dude you are a fucking total dick. YOU DO NOT CARE ABOUT PASD SUFFERERS.