John Hopkins Survey - please answer

[yarkadin]

Everyone using this board, please answer this survey below.  I'm sorry if it has been mentioned before, though I couldn't see a clear link for it.  Please everyone BOMBARD this site, everyone on hppdonline.com, to let them know that this is for real and is not isolated to a few random people.  John Hopkins Center for Psychedelic and Consciousness Research are compiling these data for at least several months now.  I just filled it out myself.  I don't know how this may help us.  My hope is that given enough answers they may start to take the condition into account and bump it up in their list of priorities.  They clearly have more money than any of us here alone.

https://hopkinspsychedelic.org/hppdsurvey

 

This should only take max 15 minutes to fill out

Edited January 6 by yarkadin

[brake]

I completed both the Johns Hopkins and University of Melbourne surveys a long time ago.

Oh and btw John Hopkins turns out to be pro-psychedelics! The intense backstabbing continues. Even after me and a bunch of others filled out that survey.

Psychedelics Research and Psilocybin Therapy

Edited January 2 by brake

[yarkadin]

Yeah, that org is pro-psychedelics, but it's all the more reason to share info that is anti-psychedelics, or that explores the adverse impacts anyway.  It's only a 10 minute survey, even if they only publish the results sometime it will be positive.

[Sweetbean]

2 hours ago, yarkadin said:

Yeah, that org is pro-psychedelics, but it's all the more reason to share info that is anti-psychedelics, or that explores the adverse impacts anyway.  It's only a 10 minute survey, even if they only publish the results sometime it will be positive.

Absolutely!I will do my due diligence myself unfortunately I feel any studies that come out or information they use may be skewed unfortunately.I feel this way about mosh studies on psychedelics as they down play the risks and dangers and boast any benefits

[Jay1]

We have to accept that psychedelic treatment is going to expand and will have people pushing it for the right reasons and the wrong reasons. We just have to provide a vocal and concise argument about the side effects and after effects this treatment could bring.

It's a grey area and I would not even consider myself as anti-psychedelics.

[brake]

12 hours ago, yarkadin said:

Yeah, that org is pro-psychedelics, but it's all the more reason to share info that is anti-psychedelics, or that explores the adverse impacts anyway.  It's only a 10 minute survey, even if they only publish the results sometime it will be positive.

Well non of the scientists ever responded to me. The perception foundation and visual snow initiative has. 

[brake]

4 hours ago, Jay1 said:

We have to accept that psychedelic treatment is going to expand and will have people pushing it for the right reasons and the wrong reasons. We just have to provide a vocal and concise argument about the side effects and after effects this treatment could bring.

It's a grey area and I would not even consider myself as anti-psychedelics.

I disagree, I never had any disorders and I had perfect vision prior to psychedelic use. Had I known the possible risks prior to trying psychedelics I would have never tried them. Now they finally added the warnings relatively recently. Back when I was Googling this stuff they didn't have this information. I also tested myself for a bunch of things and I have no underlying conditions. My last brain scan in 2015 showed perfect results and now I'm due for a 10 year follow up. If there is no deterioration usually associated with schizophrenia and psychosis then it totally proves that I have a completely different diagnosis which is... Visual Snow and/or HPPD. Completely different unique brain network.

[Spartan]

Getting to the bottom of hppd can only benefit them . Otherwise it will come to bite them. I would not be  dissing John's Hopkins as they are key players in research. Why take shit so personal, unless one has an exaggerated sense of self importance.. Yarkadin is doing awesome to get this out there. It maybe beneficial to take the stance or neither pro or anti when the purpose is to fund further research. 

Edited January 4 by Spartan

[boyo4202]

Not to sound cynical guys but we only stand to gain from psychedelic research and pro-psychedelic rhetoric, despite the harm it may cause many. Just sayin’

[brake]

17 hours ago, Spartan said:

Getting to the bottom of hppd can only benefit them . Otherwise it will come to bite them. I would not be  dissing John's Hopkins as they are key players in research. Why take shit so personal, unless one has an exaggerated sense of self importance.. Yarkadin is doing awesome to get this out there. It maybe beneficial to take the stance or neither pro or anti when the purpose is to fund further research. 

Yeah idc if it's John Hopkins or the president. This is an old survey that many people filled out and I think it's a big lack of decency and disrespect to act like visual snow and HPPD doesn't exist. But yeah of course we should keep an open mind, anything is possible in the unknown.

 

John Hopkins better not disrespect me lmfao

Edited January 4 by brake

[Spartan]

3 hours ago, boyo4202 said:

Not to sound cynical guys but we only stand to gain from psychedelic research and pro-psychedelic rhetoric, despite the harm it may cause many. Just sayin’

thankyou for sharing though you may not be informed on current research happening  that is solely HPPD focused. 

[Rhino]

I think that it is a bit of a double edged sword in some ways.

 

Unfortunately, there isn't really any financial motivation for them to try and understand/solve HPPD, which frustratingly for us all, is considered ultra rare. Especially when we are talking about people suffering with it chronically and not for say a couple days / weeks.

 

The cynic in me thinks that their likely motivation is to explore potential therapies with psychedelics that would start off with say treatment resistant depression patients or chronic alcohol addicts. And then if they prove successful, they could then be rolled out to the masses and cash in financially.

 

I agree with your point Brake about the lack of HPPD awareness and feeling like you were never properly warned. In the UK, HPPD isn't listed anywhere at all on our National Health Service website. Not even under the hallucinations section.

 

My first HPPD bout was LSD induced and 5 months long. And after that I fully recovered and naively thought I had some "allergy" to LSD and that if I stayed away from that then all would be fine. But if I new there was a chance of triggering a second bout with other drugs lasting 7 years and counting, I wouldn't have abused drugs in the same way at all.

 

I also think that if some people considering psychedelic therapy  were to sit down and talk to any of us for half an hour about HPPD, they would probably think "fuck no am I risking trying that."

 

The other edge of the sword is that although there may even be a slight tendancy for John Hopkins to want to brush over the risks, understanding the mechanism of action for psychedelics is only going to come from other people taking them and being studied, scanned even biopsied. Hypothetically if all psychedelics vanished from the Earth overnight, us HPPDers would likely never get the answers and potential solutions we all crave.

[Spartan]

18 hours ago, Rhino said:

I think that it is a bit of a double edged sword in some ways.

 

Unfortunately, there isn't really any financial motivation for them to try and understand/solve HPPD, which frustratingly for us all, is considered ultra rare. Especially when we are talking about people suffering with it chronically and not for say a couple days / weeks.

 

The cynic in me thinks that their likely motivation is to explore potential therapies with psychedelics that would start off with say treatment resistant depression patients or chronic alcohol addicts. And then if they prove successful, they could then be rolled out to the masses and cash in financially.

 

I agree with your point Brake about the lack of HPPD awareness and feeling like you were never properly warned. In the UK, HPPD isn't listed anywhere at all on our National Health Service website. Not even under the hallucinations section.

 

My first HPPD bout was LSD induced and 5 months long. And after that I fully recovered and naively thought I had some "allergy" to LSD and that if I stayed away from that then all would be fine. But if I new there was a chance of triggering a second bout with other drugs lasting 7 years and counting, I wouldn't have abused drugs in the same way at all.

 

I also think that if some people considering psychedelic therapy  were to sit down and talk to any of us for half an hour about HPPD, they would probably think "fuck no am I risking trying that."

 

The other edge of the sword is that although there may even be a slight tendancy for John Hopkins to want to brush over the risks, understanding the mechanism of action for psychedelics is only going to come from other people taking them and being studied, scanned even biopsied. Hypothetically if all psychedelics vanished from the Earth overnight, us HPPDers would likely never get the answers and potential solutions we all crave.

I believe there is alot money to be made in areas of screening for susceptibility etc there is a specific words for it though it's not coming to me right now. Biomarker* 

Edited January 6 by Spartan

[Spartan]

I just feel like we may be a smaller population tho we are people , we are humans and we matter ! It's serious shit to attempt to live with and we cannot give up the fight. 

There is no issue more important than the human being. * 

I'm some ways with the mass resurgence of psychedelics, it is Likley many others will succumb to hppd, then it will come back to bite them on the arse. 

I feel that is can only benefit them, maps and other organisations to understand both sides the proposed positives and when things go wrong i.e. hppd.

[Spartan]

They can try to brush it under the rug tho not for long, the 800kg rhino will emerge.. metaphorically. 

As I understand it John's Hopkins as well as kings college London , Henery Abraham etc etc  have been extremely pro active in hppd research. It's just the 800k USD $ ' that is not YET obtained ti fund it. 

 

Edited January 6 by Spartan

[brake]

On 1/4/2025 at 1:31 PM, boyo4202 said:

Not to sound cynical guys but we only stand to gain from psychedelic research and pro-psychedelic rhetoric, despite the harm it may cause many. Just sayin’

I've come to my senses lol and realized that you're absolutely right. I think unfortunately even in ideal conditions some of these research participants will develop some sort of HPPD and or Visual Snow Syndrome, maybe even other disorders.

[yarkadin]

47 minutes ago, brake said:

I've come to my senses lol and realized that you're absolutely right. I think unfortunately even in ideal conditions some of these research participants will develop some sort of HPPD and or Visual Snow Syndrome, maybe even other disorders.

They absolutely will, and it is tragic that they are ignoring this.  I'm almost ready to call John Hopkins but I'm not sure of the right approach.  I don't represent and I'm not the employee of any organization, so it's doubtful they will listen to some random guy.  I have read that the John Hopkins center in the survey apparently has 55 million dollars in funding.  Less than 2 percent of that would fund a study for HPPD research. 

Colorado has just recently started psychedelic therapy, if anyone here can research who to contact to intercept them that might also be an avenue of discussion: https://apnews.com/article/colorado-psilocybin-psychedelic-therapy-legal-ptsd-veterans-99fc5a0703d85daa0903d5a2b2acc9be

 

[brake]

1 hour ago, yarkadin said:

They absolutely will, and it is tragic that they are ignoring this.  I'm almost ready to call John Hopkins but I'm not sure of the right approach.  I don't represent and I'm not the employee of any organization, so it's doubtful they will listen to some random guy.  I have read that the John Hopkins center in the survey apparently has 55 million dollars in funding.  Less than 2 percent of that would fund a study for HPPD research. 

Colorado has just recently started psychedelic therapy, if anyone here can research who to contact to intercept them that might also be an avenue of discussion: https://apnews.com/article/colorado-psilocybin-psychedelic-therapy-legal-ptsd-veterans-99fc5a0703d85daa0903d5a2b2acc9be

 

So in my spare time I've been emailing scientists who share positive results from using psychedelics and the authors of these articles and this has been my format for now. I'm sure it can be improved upon. There are many other articles we can add and clinical trials as well pertaining to the topic of Visual Snow Syndrome and HPPD. I got absolutely zero responses. Only the perception foundation and the visual snow initiative responded to me and of course we were talking about other things instead of making them aware (they are obviously already aware).

 

Edited January 6 by brake
More examples

[yarkadin]

It's a good letter, but I think the format suggests you are not looking for a response, you are just spreading information and knowledge.  Don't get me wrong - I think it's great what you are doing, but maybe that needs to be worded another way and should include some key people to contact including yourself for more information?   I also think doctors tend to ignore email and messages of this type... they are probably more prone to act on PHONE CALLS.  Yes, I know... they will never pick up the phone either, but a phone call (provided we have a number to call, also a big variable) is more practical and actionable than an email... for all we know they got buried in all sorts of irrelevant emails when they post them up in public. 

Probably the high profile doctors and specialists don't even check the emails themselves - they have some assistants do that who are clueless.

UPDATE: Sorry, I didn't see the second letter with your questions.  Questions definitely help.  I don't think any of them would bother to check the numerous links, unfortunately.

Edited January 6 by yarkadin

[brake]

11 hours ago, yarkadin said:

It's a good letter, but I think the format suggests you are not looking for a response, you are just spreading information and knowledge.  Don't get me wrong - I think it's great what you are doing, but maybe that needs to be worded another way and should include some key people to contact including yourself for more information?   I also think doctors tend to ignore email and messages of this type... they are probably more prone to act on PHONE CALLS.  Yes, I know... they will never pick up the phone either, but a phone call (provided we have a number to call, also a big variable) is more practical and actionable than an email... for all we know they got buried in all sorts of irrelevant emails when they post them up in public. 

Probably the high profile doctors and specialists don't even check the emails themselves - they have some assistants do that who are clueless.

UPDATE: Sorry, I didn't see the second letter with your questions.  Questions definitely help.  I don't think any of them would bother to check the numerous links, unfortunately.

Look dude then call them, I won't stop you or criticize you lol

[yarkadin]

I didn't write that as a personal challenge or provocation, I was just thinking aloud.  Sorry if I gave the wrong impression... Like I said, that you send those letters is great.  It won't make things any worse for anyone.  I'm just thinking of ways to be more proactive.  It doesn't mean I'm going to take the lead myself and start dialing every psychedelic therapist on the planet, I don't have the nerves for that.  But if someone else does, it's definitely worth doing...

[Rhino]

On 1/6/2025 at 5:58 PM, brake said:

So in my spare time I've been emailing scientists who share positive results from using psychedelics and the authors of these articles and this has been my format for now. I'm sure it can be improved upon. There are many other articles we can add and clinical trials as well pertaining to the topic of Visual Snow Syndrome and HPPD. I got absolutely zero responses. Only the perception foundation and the visual snow initiative responded to me and of course we were talking about other things instead of making them aware (they are obviously already aware).

 

I think it's a great idea and essentially anything that can push HPPD to the forefront of people's minds, whether they are members of the public, doctors or scientists can only be a positive. And yes we may be a small population, but sometimes that requires us to be more vocal.

This is a screenshot of the hallucinations page on the NHS website, which is the national health service in the UK. And low and behold there is absolutely no mention of HPPD. The closest thing is drugs and alcohol. But that doesn't quite cut it IMO. None of us are still intoxicated per say.

[Rhino]

On 1/6/2025 at 1:09 PM, Spartan said:

I believe there is alot money to be made in areas of screening for susceptibility etc there is a specific words for it though it's not coming to me right now. Biomarker* 

I know what you mean about screening. My first stint was triggered by LSD and that was the first and only time I did it. I was smoking spice for 3 months prior, which likely increased my vulnerability. But I'm not the first person to have done spice and LSD.

 

I have seen it referred to a few times online that some people develop it after their very first use of LSD, which does suggest some biomarker / or psychological vulnerability to developing it.

[brake]

3 hours ago, Rhino said:

I think it's a great idea and essentially anything that can push HPPD to the forefront of people's minds, whether they are members of the public, doctors or scientists can only be a positive. And yes we may be a small population, but sometimes that requires us to be more vocal.

This is a screenshot of the hallucinations page on the NHS website, which is the national health service in the UK. And low and behold there is absolutely no mention of HPPD. The closest thing is drugs and alcohol. But that doesn't quite cut it IMO. None of us are still intoxicated per say.

Exactly I would also like to see HPPD and visual snow syndrome listed on every mainstream list but I'm not sure if HPPD qualifies because it causes pseudo hallucinations and not actual psychotic hallucinations

[Rhino]

1 hour ago, brake said:

Exactly I would also like to see HPPD and visual snow syndrome listed on every mainstream list but I'm not sure if HPPD qualifies because it causes pseudo hallucinations and not actual psychotic hallucinations

Yeh I know where your coming from in regards to the pseudo hallucinations, or I suppose my take on it is that the mental health side of things is not manifested organically and is much more like being infected by some parasite. And the emotional element is like a comorbid symptom.

 

When you look at Charles Bonnet Eye syndrome, my understanding is that that is very much just pseudo visual hallucinations with no real mental health implications beyond that other than people finding them slightly unsettling when they first happen. And definitely none of the depersonalisation and derealization elements or depression, anxiety, suicidal elements that some HPPDers suffer from. And their visuals also aren't worsened by external stimuli to the central nervous system etc.

 

Yet there is a whole code for them that kinda matches;

 

The ICD-10-CM diagnosis code for Charles Bonnet syndrome (CBS) is H53.16, which is for psychophysical visual disturbances. The code became effective on October 1, 2023.