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LTC79

UEL research study on psychedelics and well-being: participants for an online study needed

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Hello everyone

I am an MSc psychology student at UEL and I am interested in advancing the research on psychedelic drugs.
 
More specifically I am conducting a research to understand the long term effects of psychedelic drugs by exploring whether there are differences between the perceived wellbeing, life satisfaction and mood of psychedelic drugs users and non-psychedelic drug users. 
 
For psychedelic drug users, I am further investigating the relationship between the quality and the context of their experience often referred to as 'mystical' and their perceived wellbeing.
 
Everyone who is over 18 years of age (psychedelic drugs users and non-drugs users) can take part anonymously and remotely by clicking on the link below:
 
 
I would really appreciate if you could complete the anonymous questionnaire and/or if you could help disseminate it. 
 
I am happy to share more about my research with anybody who is interested in the topic and to feedback on the findings once it is completed.
 
Thank you!  

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You know what the problem is? The problem is that psychedelic scientists like you are doing fuck all to research and cure HPPD. Do something about it!

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I'm all for studies, that's fine.  However, understand that this forum is for those of us who are suffering from the repercussions of using psychedelics.   Long term well-being isn't exactly what many of us are experiencing.

For what it's worth.

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Hope1, please calm down. Attacking people who are interested in this field, but not your very specific field is pointless and  will just push people further away.

It is worth noting that well being can be negatively affected as well as positively. Having long term negative impacts on well being will, i'm sure, be interesting to people making this survey.

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Of course, I am not happy with reckless research. Jay and others then usual me after they did, with questions and verification of the research methods, and I look who is doing it and I usually know if there is or is not good science coming from the lab. 

I have yet to check this, and I am here because I was speaking with a reseacher about HPPD and some unique factors that may shed see insight into this area. So, I opened this thread up.

I am not going to police behavior, but in the medical and research community the fanatics are the first not to be taken seriously. Tim Leary did little to help their cause.

In 2004ish, A prominent German researcher said to me, "I have read countless years of research with LSD, and have yet to find one case about HPPD. He had good reasons in his mind to think I was full of shit. HPPD is not dose dependent and it isn't always on the first time, but maybe the 64th time. Millions of people have taken LSD, so why have I not heard of it. "

He did do a tremendous amount of research. He was not acting in bad faith. I told him, honestly, I can't explain these things and it bothers me also. I can't say with 100% certainty that I didn't get infected by a parasite that day. But, what I can say, is I have over 1000 people who come from backgrounds in the military, legal, medical, students, caretakers, teenagers, teachers, members of our government and more that I have spoken with and we all share the same symptoms and all attribute it to the same type of event and we all react paradoxically to drugs like Risperdal. I can tell a person on the phone to not tell me about their symptoms, but I will tell them what they see before they say a word, and I have for some of you. So, all I can say to this researcher is open your mind at least to it being real and one major causal agent is hallucinogens like LSD. 

His email said, I can't argue with a level headed response like that. You are willing to question it yourself, but statistically and in your experience it would ridiculous to think otherwise. I believe you. 

A few years later a case report and discussion comes out and a first case of HPPD published with a new psychadelic and he is the first name. 

Another researcher, very intelligent and one of the most influential in psychadelic research was embarrassed when they saw my bibliography of studies. But, I didn't get an audience with them because I told him he was doing the wrong thing, because I was not one of the people that asked to get treated. 

I am giving HPPD people the most grief because our actions are what helps control our boat. I made a few bad decisions, and because of my influence it affected us all. When I am sending out applications and talking with researchers, the Lab I work in might just be doing pro-psychadelic work because our areas and needs might be very closely aligned. Until proven otherwise, nobody is an enemy. Potential allies. 

Jay is 100% correct. The largest study to characterize HPPD so far, which was published in a Drug & Alcohol Research Journal. The authors include Earth & Fire Erowid, two people that provided me excellent advice and also a very comprehensive review of HPPD. 

Also, some of my biggest allies that have spoken out and discuss with my cases of HPPD include leaders in their field of psychedelic research.

Honestly, if I had to take the statistical odds and I was not a person with HPPD but I did have PTSD from combat, when the choice is between taking an SSRI and maybe an antipsychotic for my life (perhaps develop tremor) or take two pills of MDMA with certified therapists with use of these substances, then I would choose the MDMA. MDMA has been a tremendous tool for PTSD, BUT I would also want as a patient to have an informed consent form and a researcher that can talk to me about the realistic risks of HPPD. Perhaps, they ask if I took mushrooms: would you agree that you can take much less mushrooms and trip just as hard as your friends? I know this was my case, and perhaps it is 70% of the cases. Then, this would be a disqualifying item for participating in research. 

Psychedelics help cluster head suffers. This is literally the only pain so severe that a person without any psychopathology have killed themselves just to end the pain  They come in clusters, injections of Heroin would not help. They are nickbamed uicide headaches and I have witnessed them and I would probably ripy eyes out before going through them all my life. But, somebers started finding that mushrooms aborted an entire yearly cycle more. 

As a community, we have been prejudged as malingers, people faking a disorder or just people with normal symptoms but we are just paying to much attention to them. Where have I gotten the biggest pushback? Anti-drug people. I have received calls from people at a conference after they spoke to a NIDA representative who called HPPD most like malingers. My earliest allies, where the people who were on the front lines. 

It does suck when research is not going your way with funding. Look at Visual Snow Initiative. They have put a few 100,000 in research labs hands and the executive director/founder is a development and messaging genius. 

Hey, but like Greg and I would do back in 2002: a drunken post comes out and swears I am stealing money or because I had a section on the website for current drug users worth HPPD to write messages because it is triggering to average users, then I was enabling and swearing. Then, I fight back. Next day, all is good and usually apology about writing messages at 4 AM when in a bad mood. 

Hug a psychadelic researcher, because they just may be the person that secures you funding because the argument they should help with funding because nderstanding HPPD will prevent a possible catastrophic participant experience that could threatren all of their research future may just be on someone's mind. 

 

I am still out and personal medical issues outside of HPPD. I stopped making promises until I do something new. 

 

David, Actual 

Edited by David S. Kozin
Can't spell my own name.
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The problem here is that there is so much money behind psychedelics that insiders will risk nothing to jeopardize this gravy train of revenue. In reading the article there are psychedelic wellness clinics popping up, self proclaimed shamans appearing out of the woodwork and a booming medical tourism model all built around “consciousness enlightenment” so when this guy come here without ANY regard to our plight, I can’t help but be a bit angry because he and his colleagues are in a position to help, have access to technology, facilities, funding and resources that we don’t; in effect, he and his colleagues can help us but they won’t.

its all about the money because if there were one patient class deserving the most help from psychedelic research, it would be us...

https://www.google.com/amp/s/www.nytimes.com/2019/06/12/books/lsd-books-pollan-waldman-doyle.amp.html

 

 

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Yes. the researcher is stating their desire to advance research into these drugs. However, a biased researcher wanting glowing reports about people tripping then having great lives would NOT advertise their survey on this web site. ;) 

Hey Hope1, I was just putting up the results of the new HPPD survey while reading your post, and a Master's degree thesis is a recent graduate with a Bachelor's and I have a soft spot for this group.


The researcher could just as easily be a person with HPPD, and asking this question:

There question the researcher is asking: 

More specifically I am conducting research to understand the long term effects of psychedelic drugs by exploring whether there are differences between the perceived well-being, life satisfaction and mood of psychedelic drugs users and non-psychedelic drug users. 


So, the experiment: Is there a significant different between the perceived well-being, life satisfaction and mood between people who take  psychedelics differ than non-psychedelic drug users.

So, Hope1, you are a psychedelic drug user. You would probably answer very negatively on all of these areas. You would probably be way down at the bottom. But, by including HPPD individuals in the test, it allows for a representative sample to be included that (on face value) would have negative results (generally).

Generally, assuming the basic premise is as stated,  research design would ask if a person has HPPD or ask questions that would inform that a person does, and use item response theory techniques to look to see if answers are highly predictable based on association with HPPD (i.e. participants that marked that they received an HPPD diagnosis could predict a person's overall score more than any other question). This should not invalidate the responses, but this becomes part of the discussion and also advanced statistical techniques can help control for this. 

I have not checked up on this student and their adviser, but I think it is good science to develop a protocol to include advertising the survey on sites where people have a majority of likely negative responses while probably advertising on sites like Erowid or others that would skew towards the positive. 

But, for feel good news:

I agreed to put my name on research with a conclusion that MDMA did not show significant negative side effects for a large battery of neurocognitive tests because I thought the design with the control groups was smart, I created the database of responses for import into the statistical software (lots of numbers), spent some of my best hours sitting next to one of the top 10 psychiatric researchers of the century discussing the results and statistical methods to investigate the responses and worked on part of the manuscript related to my work. 

It doesn't look good on my HPPD resume, but I dare someone in the pro-psychedelic community or any research community to claim I am biased against psychedelics/enactogens, and when I do talk about the negatives and HPPD then my opinion is easier to digest without judging me as biased against psychedelics. So, I hope when I ask for research participants with the visual snow group that I don't receive a strong backlash against research because some very vocal visual snow folk have fought with me over VS having nothing to do with HPPD. The rationale was because HPPD is defined by requiring a hallucinogen, so I argued that the definition is made by humans and I know them and I know how the DSM is made and it could very well be called Altered Perception Disorder, Hallucinogen onset vs APD, not otherwise specified. However, it was an emotional argument, so I left. The point that the DSM diagnosis are often not based on a biological reality or a proven etiology, and at the time they were biased so that when 1 psychiatrists sees a patient and diagnose them with HPPD then 9 others would make the same diagnosis independently. The phrase, to cast a wide net, would apply to the methods for creating a diagnosis. The content validity of this diagnosis was sacrificed so that the diagnosis would be reliably reproducible. In many other diagnostic entities this was fixed, but until the last few years HPPD has been the ugly duckling forget about them group. Dr. Abraham is retired. He was the one sending in tons of information to prove otherwise. This is why I am so excited that my plans and a few other researchers are coming together at the right time. 

I am sure you saw it, and I have this feeling (ok, I was watching the server processes queue and it looked more like a certainty) that anyone that listed a desire to be notified about research or perhaps (be notified about anything at all on this site) received an email about the Faces of HPPD research that is both published in an academic journal and Dr. Lewis's wisely had the graphics of the main conclusions available for the community without having to violate copyright. 

So, if you missed that, check out:

 

 

 

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