Latest Email from London - Reaserch Study

[OldSchoolAr]

Hi .......,

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

 

 

Awesome that i will be speaking with her / them over skype soon...

 

 

So intelligent people....

 

 

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 Give me your smart ideas and  Imput below so i can relay some of the best approaches / ideas to her...

and or,  if your someone with an amazing wealth of knowladge and exparience like Visual.. maybe you could join us on the skype call ?........

 

Thanks....

 

 

 

[onelovez]

It would be great if Visual can make it.

 

At this stage, are we supposed to know what research/study do we want to do? Would it be drug trials or any specific medical tests or both etc. All that can be figured out later, right?

 

The only idea that comes to my mind for start is to show our initiative and prepare some materials for them. We could also point out the most meaningful parts.
http://www.evernote.com/l/AbRsTAeTpEdAK4WUDtw86U-VLIzve9l_4Ks/

 

This is what we are trying to get in the HPPD project, all good info in one place for everybody to study.

Let me know if you think we should keep going. By the way.. there is not too many of us yet in the project, so every help is appreciated.

I have created a google doc if anybody would like to add anything. https://docs.google.com/document/d/1Bm2r9SrtF62EvDK7qYnNXC4v4-2SZnlhWnmVL1693BE/edit

 

This kind of "library" could serve us later.

[Jay1]

i think a collection of qEEG tests from some of the longer term sufferers would probably hold good clues as to what is happening and how it could maybe be treated

[onelovez]

I don't know if there is much more studies with qEEG and HPPD online, I will have a look.

 

Then all we can do is make a post about if people have their diagnoses and are able to send them up. Could any establishded forum member do that? Jay?

[Jay1]

I've never had a qEEG as it was crazy expensive (I have to go private)

 

I know a few members here have, on the old board.. many did (sadly, that forum was completly lost). I think dr Abraham also conducted qEEG tests on hppd sufferers. As far as I know, it is the only test that confirms it is a neurological conditions.

 

This may as well be in Klingon, for me... But maybe someone else can see if it is of help?

 

http://www.lycaeum.org/research/researchpdfs/2001_abraham_1.pdf

[brake]

The Neurofeedback Services of NY charge $650 for a QEEG Mapping and $175 per neurofeedback session. They have the cheapest QEEG mappings in the NYC area that I found so far. I will probably end up getting a QEEG mapping eventually and share my results.

[OldSchoolAr]

I feel like i may need some help in presenting possiblilitys for studys to her..

 

would aneyone like to join us on the skype call tomorrow 7pm sydney time ?

[OldSchoolAr]

wednesday 7pm sydney time

[Jay1]

I can join with you... I'll try and catch you on Skype today

[OldSchoolAr]

ok awesome Jay...

I will add you in on the call..

Its 7pm Sydney time so best to take a look on a time zone converter

[OldSchoolAr]

how about testing on Individuals...? i always thaught a live specamine / candidate would be better, run tests etc and see what responds to.. etc

[onelovez]

But like what tests? MRI or PET scans has been done already and showed hypermetabolism in some part of the brain. qEEG has been done, showing overactivity in the brain.

 

Would gene testing be important? if somebody was able to separate few genes responsible for HPPD, would not that give massive insight into possible treatment no? Idk..

Im sure there are lots of things that can be tested..

 

eg. lets look at schizophrenia as an example:

http://www.nutritional-healing.com.au/content/condition.php?condition=Schizophrenia

 

As you see there: there is different causes/biotypes of schizophrenia. Note that each of the biotype have different substances corresponding that can be beneficial or harmful in case of schizophrenia, but whats more important sometimes they get affected by one particular substance with opposite effect!

Does that reminds you of something? Like meds having different effect for different people with HPPD?. The causes of HPPD seem to be different too. (thyroid problems, stress, alcohol, drugs, ANTIBIOTICS). An anecdote: My Dad has HPPD - but he aquired it most likely from alcohol and/or stress while I did from variety of drugs (slightly different causes but same genes).

 

(going back to DNA tests, maybe "comparing our cases with DNA of people with schizophrenia" or people in general to see if we share any common "defects"?)

 

How many of HPPD'ers checked all different kinds of hormones? The most important are done with most basic blood tests right? should we check the ones less "popular" or the ones considered to be less important?

 

Im sure we can think of many abnormalities that can be checked and that could turn out to be HPPD's common factor (for each different biotype ofcourse).