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David Nutt is very much pro "lsd as a medicine" and is unlikely to highlight potential issues like HPPD.

 

He is an interesting person and I respect some of his views, but he is too pro-LSD to help our cause. The best hope for us is that the experiment highlights some areas of the brain that we have yet to think of in our search for an answer.

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Sounds like you may be right Jay.. Tho i believe it would still be worth a try, instead of being either or he should make it a "both and"

 

If there using if for other "disorders" then this would have to be an exellent chance for us as our "disorder" was caused by LSD

 

I would like to make our own videos to attract finding for reaserch. Why cant we join forces ? they should really have the intent, "two birds with one stone"..

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There will always be a queue of trippers ready to take LSD in this sort of test environment. I would have been first in too, 20 years ago, as I firmly believed LSD was the answers to the world's problems (as stupid as it sounds... part of me still hangs onto that ideal).

 

these drugs are powerful, profound and really should be explored more for medicinal use. I have heard of a guy with cluster headaches (awful condition) being cured by magic mushrooms. He was very close to suicide.

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I was exited and in need so i contacted them myself. Here is the email dialogue below.

 

Hello :-)
 
My name is....
 
I’m very interested in the study that is taking place as how the human brain reacts after taking LSD.
 
Could you please let me know how I could get in touch with the people who are conducting the trial? Either by email or by telephone.
 
It’s quite important. Please if you could help me that would be much appreciated.
 
Thanks very much
 
Hi .....
Are you able to elaborate a bit more on what you would like to know and I'll pass the message on.
Natalie
 
 
 
 
Hello Natalie,
 
Thank you for your swift reply!
 
I suffer with many other people from a chronic condition called HPPD. Hallucinogenic Persisting Perceptual Disorder. I have had it for over 25 years. It is a horrible drug induced disorder that was triggered by the use of LSD. Please see    www.hppdonline.com and also http://amrglobal.powweb.com/category/hppd
 
I am part of a community of people who suffer badly with HPPD. At the moment there is no treatment or even research going on for this "rare" condition.
I know there can be benefits in taking LSD and that HPPD is rare. Tho we as a community really need help. I would do anything to understand this condition and to be able to find a possible treatment.
 
Can you please consider allowing us or even a Professor who is an expert in the HPPD correspond with the team conducting the study.  
 
The study you are conducting may prove extremely valuable for us in understanding and treating HPPD.
Please consider us.
Many thanks
Kind regards
 
.....

 

 

Hi...., 

I'll forward your message onto the team and bring it up with them next time I speak to them.  May I ask how big the community is of people who suffer from this as if the community is large enough it may be possible to crowdfund a separate study.
Natalie
 
 
 
Ok so can someone please let me know " how big the community is of people who suffer from this ? so i can let her know.
 
If someone is exelent at speaking science, maybe NOW would be good to write them a depth letter. Like hope1 says.
 
I was considering getting my Professor in Neuro Psychaitary to contact them also. Maybe Dr Abriham would be best ...
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Hi Natalie,

Thank you so much!

I am in the process of finding out approximately how many people suffer from this. I will let you know as soon as I find out.

Certainly another specific study would be excellent if we are able to raise the funds.

Also, if you don’t mind I would also like find an expert who is very well versed in science to write about this matter and to pass that letter on to the team so they can have much more clear and depth understanding about the topic im presenting.

Thankyou so much for your help and assistance!

I appreciate it more than words can say J

Looking forward to being in touch soon.

..........

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Yes, at $10,000 the Nutty Professor is a high priced escort.  Nevertheless, he actually may be helpful.  And your contact has got the ball rolling.

 

 

It is hard to know how many members we have here.  With a couple recent gaps, many have yet to appear back.  The founder is involved in other matters for the immediate future.  Also, with the study being in the UK, it may require members there or near there.

 

That said we can start with this DANA article, quote and link:

 

"...about 4% of LSD/MDMA users reported experiencing symptoms of HPPD. This is a substantial number,..."  

http://dana.org/News/Details.aspx?id=43275

 

Four percent of these users is actually millions of people !!!  We simply don't know how many suffer with years of persistence.

 

You've already included the first of the following, but list these:

 

http://amrglobal.powweb.com/category/hppd   HPPD definition

http://amrglobal.powweb.com/a-new-treatment-for-hppd   A new treatment possibility

http://amrglobal.powweb.com/about-dr-a/curriculum-vitae   Papers of Dr Abraham's extensive research

 

These links mention antiseizure meds (Clonazepam) and dopamine as two areas to look at.  That could be important in how and what they look at regarding persistence and possible brain alterations.  Also, Dr A is a serious, recognized researcher (even sharing a Nobel prize).  That helps garner respectability.

 

Well, this is at least a stab at an idea

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There will always be a queue of trippers ready to take LSD in this sort of test environment. I would have been first in too, 20 years ago, as I firmly believed LSD was the answers to the world's problems (as stupid as it sounds... part of me still hangs onto that ideal).

 

these drugs are powerful, profound and really should be explored more for medicinal use. I have heard of a guy with cluster headaches (awful condition) being cured by magic mushrooms. He was very close to suicide.

 

There is no shame in looking for answers for the world in unusual places.  After all, humans have tried all sorts of governments and life styles yet there remains extremely serious problems.

 

It's kind of ironic that after personal disasters, one finds it necessary to focus on immediate blessing that one still has or can avail oneself of ... even if they still ponder for solutions for the planet.

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Ok wow that awesome and amazingly helpful! 

 

  I will forward that to her now :-)

 

This is what she just responded with

 

Hi ....

I'm speaking with Robin next week so will ask him then if he can help with this.  It would be really helpful if you could give me a ballpark figure on the number of people you know who suffer from this as this will really help us understand more about how feasible it will be to crowdfund a study and what the size of the study could be.
 
I will inbox you her email Visual !
 
Thanks so much !!
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Phenomenal OldSchoolAR.

This goes back to the form letter/outreach idea I had. If we sought out and educated researchers that are investigating a drug, procedure that might be applicable to HPPD or a condition that might have similarities then perhaps real relief is one day tenable. Advocacy is the key.

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Thanks very much Hope1

 

Yes truly great Idea of yours! I initially saw the video and posted under  "worlds first imaging study of the Brain on LSD"

 

I don’t know why there seems to be so much promotion now days with video on the internet about LSD and DMT for so called positive uses and outcomes. I see many many videos. It seems like these "new age" groups or internet marketers are trying to raise awareness to create some type of shift in the public’s perception of these substances for a shift in humanity or something..

 

Anyhow.

 

Natalie, the lady im corresponding with  seems very helpful and caring. I think people are looking beyond any associated stigma which is really great.

 

Its exiting she is taking real interest. Who knows, they may consider including us in the current research study. Or if not, I / we would plan to immediately start with setting up funding for our own pilot research study. I feel she would certainly help with this process. These some of the outcomes I would like to see take place anyhow. Yay this is exiting. Sometimes in life amazing things can happen when we least expect it.

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I think any credible researcher would easily recognize that drugs don't effect everyone the same way and given the documentation you've submitted to them regarding the probable number of people afflicted with this condition not only have you grabbed her attention but will have tapped into a community that might be willing to help. I can attest that even after hppd I'm not anti drug but want recognition and relief by any and all means.

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Did they say where they are based? I know Nutt is in the UK, so maybe the whole thing is?

 

If that is the case, I would happily talk to them about the condition and even go through any tests.

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given the documentation you've submitted to them regarding the probable number of people afflicted with this condition not only have you grabbed her attention but will have tapped into a community that might be willing to help.

 

 

Yes.. that was thanks to Visuals Smart and Quick thinking ... perfect respnse to "how many people hppd suffer"

 

Its really exiting. have a feeling we will be in touch shortly after easter break..

 

yes Jay..

 

They are based in London .. Maybe you could meet with them :)

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As I said, there are gifted people well versed in the biomechanics, statistics and all encompassing information on this group revolving around HPPD but unfortunately I'm not one of them. Wish I knew how to source the info that others seem to do. If I could, I'd certainly put pen to paper and attempt some measure of good for this community.

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  • 4 weeks later...

most recent email :

 

 

Sorry for the lack of contact, would it be possible to set up a Skype call to talk about this, my Skype address is ..............  It would be good if we could have a chat so I can understand more about the kind of symptoms you are experiencing and the kind of study that you think might be useful to you and other sufferers of this condition. Then I can speak with the Beckley Foundation to see if they know any scientists who may be able to conduct the research, alternatively, we could potentially design the research, raise the funds with the Beckley Foundation then offer the position of lead scientists to someone.  Please let me know a good time to arrange a Skype, I'm fairly free next week and am in GMT timezone.
 
Best wishes
 
 
yay it looks like i will be speaking with them soon :-)
 
Please share any helpful information you think is relevant and important.
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