hope1

AGGRESIVE ADVOCACY

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"The brain is your most precious organ. You need to have every neuron in your system working to its optimal capacity. It has always mystified me as to why anybody would be so foolish as to monkey with the biochemistry of their own brain."

haha, either the guy is a buddhist monk, or a complete hypocrit that most likely drinks caffiene, alcohol and takes various other substances that "monkey with the biochemistry of his own brain"

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These people are absolute morons that think like that, the brain fucks with its own chemistry hence mood, hes probably got a wife who spends all day at home drinking wine knocking back valium like fuckin wine gums while he drinks coffee all day and various headache tablets or what not. Cant stand hipocrits

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I think if you do some research about that guy Mcgreer, you will find that he literally does "monkeying with the brain's biochemistry". I can just image the Dr. Mengele-like tests, this guy has fronted, on poor simian victims. Monkeys being strapped to chairs for days, giving them all sorts of mind-altering drugs. Probably cutting out pieces of monkey's brains and seeing how they act. Just plain laboratory torture. This guy sounds like he has some latent depression; i think he needs a "Dr. Freeman", ice-pick lobotomy. lol

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If the only thing I do in helping out this community is to stir things up and collectively we yell and scream in demanding help from those who can then I've done my job. Please, all of you, keep seeking out anyone, anywhere that is doing research on neurological conditions, inform them of HPPD and that we deserve care, attention and hope

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"The brain is your most precious organ. You need to have every neuron in your system working to its optimal capacity. It has always mystified me as to why anybody would be so foolish as to monkey with the biochemistry of their own brain."

"Everyone has the right to be a sucker once"- Clint Eastwood

Some eggheads have lived more isolated lives or, some, in special communities (in often helps in the formation of an egghead - a delicate or perhaps indelicate process :wacko:). He may be from a different culture. He may be 'in love' with neurons - whole life absorbed in the wonders of that world.

$(KGrHqJ,!ogE9c6ODJNqBPYQTYFfhQ~~60_35.JPG

Certainly the 'dangers' of drugs have been well publicized for decades now. His response didn't seem offensive but rather indicative of living in his own world and not 'getting it' - the purpose of your email. Still, in the end you got a referral.

As for diapers ... we all got that comming. Perhaps a giant neuron will attack...

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And, as has been mentioned, several members (not just Visual) got HPPD/DP/DR or the like from other things such as antibiotics. For those with biases, these accounts may be of use. Even without bias they provide valuable information.

Bias or not, one would think that studying HPPD would be fascinating. Most understanding of the brain has come from studying disease/disorder/defects - stroke, TBI, MS, etc.

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Certainly the 'dangers' of drugs have been well publicized for decades now. His response didn't seem offensive but rather indicative of living in his own world and not 'getting it' - the purpose of your email. Still, in the end you got a referral.

Just to be clear It was a different doctor who gave me the referal, that guy never responded to my reply.

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Here in America there is a TV show called "The Doctors". I haven't ever really watched it but I think they basically talk about medical conditions and bring people suffering from unusual things on. Anyways I think we should all use this link http://www.thedoctorstv.com/main/tell_us_form/1814

to contact the show and hopefully one of us get an invite on to the show. My symptoms have gotten better so its unlikely that I would be chosen because healing makes the story less interesting but would really appreciate if everyone would use this link to contact them HPPD is an interesting condition and there is a good chance that one of us could be brought on this show which would raise awareness and hopefuly get us some answeres. When you fill out the form remember to focus on your most intrigueing symptoms (but be honest) beause the show is more interested in viewers than helping us. Also you might want to try to not sound like a complete druggie as they will want the audience to sympathize with us, again dont lie but maybe replace "ive ttaken hundreds of tabs of acid" with "I tried LSD multiple times". Take time writing your story to them because this might be one of the best shots that we have.

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I really got to applaud what you guys are trying to do here. One thing I noticed when I read this thread was from one of the people that replied stating that the email had been quarantined. Basically if you spam 150-200 or so people at one time it is probably being recognized as spam and being routed as such. About a year and a half ago I emailed about ten or fifteen guys that would be applicable to this field. I got about three to five responses buy nobody could give me much guidance. I really believe that something is on the horizon as far as HPPD is concerned. This wasn't meant as any sort of bragging or some stupid shit that I got responses, I'm just saying taking the time to break up the emails instead of mass sending them might get more responses. I really do applaud what your doing. Please, keep it up. Also, as much as I guess I'm assuming that nobody would want to hear it, contacting or emailing the NIMH might provoke some response. Hallucinogen use has definantly risen in the last couple of years. You would think there would be more interest in the subject. NIMH would have all the resources and ability at their fingertips I would think, they do a lot of clinical trials and research and they might have an easier time pooling something together. Also MAPS if their still around, I don't think they like to hear about HPPD but they should. Aggressive advocacy, keep it up!!!

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A new center of neuroimmunology at the University of Virginia School of Medicine will bring together researchers from across disciplines to unlock the secrets of complex diseases and disorders ranging from multiple sclerosis to autism to Alzheimer’s.

The creation of the Brain Immunology & Glia center, known as BIG, positions UVA among the leaders of a young but increasingly important field of research. Neuroimmunology seeks to better understand the role of the immune system in the health of the brain and nervous system, laying the groundwork for future treatments and cures. “It’s very difficult to manipulate the brain directly, yet we can manipulate the immune system in many ways,” says Jonathan Kipnis, PhD, the director of BIG. “People are now looking more and more at targeting the immune system to defend a diseased brain.”

BIG is housed in UVA’s Department of Neuroscience but already includes researchers from five other departments. Kevin S. Lee, PhD, Chair of the Department of Neuroscience and an enthusiastic architect and leader of interdisciplinary studies, notes the importance of breaking down the barriers between disciplines to advance this promising field: “This,” he says, “is where the discoveries come from that lead to future therapies.”

“The idea is that a lot of neurological disorders have an immunological component, and it’s targetable,” Lee says. “I think this type of center has a unique opportunity to have breakthroughs. … There aren’t a lot of centers around the world that are working on this.”

In addition to the experts already on board, a key goal for the center is to hire two new faculty members. Kipnis is eager to hear from those who want to be part of the work. “I would love people to come and join us,” he says. “The beauty of science is when people from different disciplines meet together and discuss ideas – and this center will allow that. The whole idea is to bring people from different disciplines and ignite their interest.”

Alban Gaultier, PhD, a multiple sclerosis researcher at UVA involved in the new center, says he is excited about the possibilities ahead. “This is an opportunity for me to raise the bar for my science because I will have access to Dr. Lee’s and Dr. Kipnis’ expertise as well as other specialists in different fields,” he says. “It’s a very exciting time.”

The new center is receiving support from a wide array of sources, including the School of Medicine, the Dean’s Office, UVA’s Vice President for Research and the National Institutes of Health. “They have recognized this and put their resources into it as well, and that’s really greatly appreciated,” Lee says. “Without their support, these types of endeavors just won’t take off.”

Steven T. DeKosky, MD, Vice President and Dean of the School of Medicine and a neuroscience researcher himself, says the new center will play a vital role in fostering the collaborations that will lead to future breakthroughs. “The brain is an incredibly complex organ. When disease attacks the brain, the additional complexity demands innovative ways to study the disorder and experts in several fields to optimize understanding,” DeKosky says. “BIG is one of our efforts to support brain research, a major focus of our Neuroscience Center of Excellence initiative, and Dr. Kipnis is an extraordinarily bright, thoughtful leader of what we hope will be a great differentiator and a source of hope for our patients. It will also be a great place for our faculty to work together and train the neuroscientists of the future. This is where neuroscience and new therapies meet.”

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OBAMA SEEKS $7.2 BILLION FOR PTSD/TBI TREATMENT

President Obama's fiscal 2012 budget proposes $7.2 billion in funding to research and treat the invisible wounds of war: post-traumatic stress disorder and traumatic brain injury.

The Veterans Affairs Department said it plans to spend $6 billion in 2012 to enhance its ability to provide the best possible specialized care for those with PTSD, TBI and other mental health needs.

This is a $765 million, or 14.6 percent, increase over VA's entire proposed 2011 budget for mental health, which, in addition to PTSD and TBI treatment, covers substance abuse treatment, mental health care for the homeless and inpatient treatment.

VA officials said the 2012 PTSD/TBI budget also will support collaborative programs with the Defense Department, including outreach to veterans, as well as new but unspecified types of treatment. It promises to lay the groundwork for psychological treatment "for many years to come."

Defense proposed to spend $677 million to treat PTSD and TBI in 2012 and another $415 million for research, for a total of just under $1.2 billion. Defense had requested $1.1 billion for PTSD/TBI treatment and research in its 2011 budget.

Both Defense and VA are awaiting congressional approval of their 2011 budgets by early March, when a continuing resolution that funds the entire federal government expires.

(show me the money bitch)

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http://www.2013.isrii.org/

Can we raise the funds to send me? I will prepare http://www.2013.isrii.org/registration/scholarships/

Then the Abstract is due In a week. I am submitting my application with support from a founding member and support for:

The Society for Participatory Medicine will grant a partial or full scholarship to any individual orInnovator Organization who demonstrates involvement in participatory medicine for whom the membership fee would be a burden.

This will allow me to use the Society's Logo on Presentations and add it along with my ability to present. I will speak with a few scholars in the field who may want to co-author a presentation.

The Time to Change the Narrative for HPPD (More accurately, the collection of visual & other perceptual alterations often associated, but not required for the onset, with hallucinogen use and currently has no valid diagnostic criteria despite a distinct history in the literature of medicine as having distinct diagnostic boundaries currently ignored by the APA's DSM-5 substance abuse work group because we lack epidemelogical data and characterization. I have a characterization survey ready, and I am working on finding a co-sponsor w/IRB to approve the test to be administered to our group.

We must direct the message clearly, and do so without holding on to old ideas in order to allow ourselves to accept new changes if the science and results show something different than the scare articles about HPPD say.

- dk

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Now, is this an abstract pertaining to the study of eHealth interventions, or of any human pathology [ie- mental illness, cancer, heart disease, etc]???

I would be more than happy to help.

If it is not about solely the study of eHealth then i have some ideas.

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My specialty, and proven success, was leveraging the message community of dpselfhelp.com and listening to the issues and creating Internet-based survey's passing IRB approval (I consulted to Harvard's Biomedical Sciences Database Administrator and the Project Lead on implementation and concerns).

I have 10 years with message boards. More years than this with Internet-based development. Dr. Abraham stated I was a pioneer using the Internet as a source of research in the field of epidemiology and the biggest problem we have is one of identity.

The diagnostic criteria in the DSM-IV could not be any less accurate if it were not for Dr. Abraham shoving in his list of visual symptoms in as descriptors, but everywhere in the diagnosis the word TRANSIENT, EPISODIC, HALLUCINOGEN INTOXICATION (RE-EXPERIENCING) and the damn name is technically:

Hallucinogen Persisting Perception Disorder (Fl;ashbacks)

So, here is a group of individuals banded together that can fill out a characterization survey. Part of the survey would ask for frequency of each symptom descriptor and also the duration (when it occurs, how long does it last?).

Hypothesis: Individuals that experience symptoms of HPPD constantly, unremetting and often for more than one year will list duration as ("Constant") versus (30 min, 1 hour, half day) etc. No big news to us, but news to 99.9999% of the medical population.

I just showed my girlfriend the HPPD diagnosis from the DSM-IV-TR and she said, "That is all? You wrote 150 pages and they write a total of 1 and have it incorrect."

Yes, this is the problem. Never before has the two symbols ( and ) be used to attach a paranethetical to a name to completely invalidate it from the title. Yes, there are Flashbacks, but this type is not the one found distressing to most.

The research is easy. Other questions would include asking about Tinnitus, and other areas of functioning. Dr. Roger Davis, co-author of the MCMI-III and friend to our community (he created most of the vision simulators for us) is ready and open for working on the test.

If we can show two distinct entities exist, then we argue that HPPD diagnosis contains two sub-types at the very least, or re-write the entire thing based on the results of the test. The power of test would be based on responses and I wrote the survey already.

The e-Patient and participatory medicine component is to show the community and how easily the main source of suffering -- INVALIDATION of their experience -- can be fixed and done so by the community. Never before could 300 HPPD sufferers be found to take a survey to create statistical power and robustness required. I have two studies related to physical measurements for HPPD I would like to conduct.

Talk soon,

David

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OK. So essentially that's the problem.

I feel that regardless of DSM-IV and whatever name you want to call this nebulous disorder, to us it's existence is obvious.

So what is the solution?

There is no solution. You just treat the symptoms.

This is not akin to treating a bacterial infection.

There are a million different directions to go, in terms of future studies.

In reality, there are very little studies under the name HPPD.

In some ways the DSM IV politicizes psychiatric disorders. [just so they can twiddle their ding-dongs.]

You break things into 10 different subtypes and 10 different subtypes below that.

Then all these disorders seem to overlap, and can exist in one patient.

I'm not here to talk to hear my voice.

So the issue is that we [most likely] don't have the perfect medicine for treating HPPD.

Without a real identity, it makes pharmaceutical studies for such a nonexistent disorder difficult.

For example, the drug may already exist and is being used for something else but testing it in a controlled environment in a way that is recognized by the medical community, takes at least a proper naming and classification of aforementioned disorder.

But that's a bunch of garbage.

Money talks. We just don't have any.

It's obvious that the HPPD society [or whatever you want to call it] has no intention of handing out a $100,000 grant [..at least not that i see].

There will be strides made with better treating the disorder in the future but i may sooner see the collapse of Social Security before these progressions are theorized to take place.

Our brains are far more complex than we are; we are just too stupid to learn how to harness all its power. [..to renounce Machiavellianism]

The only real obstacle is politics.

[

..And i leave out money because politics is what's dictating the cash-flow and where it goes].

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1) Fixing the diagnostic error would improve lives by allowing for the creation of treatment guidelines, which are drafted by clinicians & participatory patients.

2) DSM-5: Politics. I have been on a Task Force for suggestions related to a disorder, and I heard it from the APA Work Group lead in our field..

3) Characterizing the disorder would point out important treatment methods, identify point prevelance estimates (how many people have PPD symptoms, how severe, can this be given orphan disease status which is open for special grants).

more to come.

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DSM-IV [MACH-IV]

"And, now the Guise is dead, is come from France/ To view this land, and frolic with his friends"

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DSM-5: Drugs, Stats & Melancholy - 5. I do appreciate the APA's enthusiam for using the new - 5 versus the Roman Numerals to make it more friendly to the Arabic numbers we use. (Want to make bets it never goes to print?) ;)

@dsm_5 (one of my better twitter names I hold, just in case i needed it. :)

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