Important Announcement About the Rutgers / NORD Study

[Quantum]

Hi Shep, it is our intention to keep good relations with NORD.   They provide us the expertise to reach to the research teams and evaluate different projects, choosing one of those, and also provide all the regulatory environment that will make this study credible, and that will attract research teams with a good reputation, and all that at a relatively low cost. 

[demografx]

I could keel over next week  and shuffle off this mortal coil :-)
Colm

If you do, you will be suspended for one full week as Global Moderator.

However, this decision can be appealed to our Lifetime Satisfaction Survey Committee. Chaired by BluesBrother.

[Observer]

That's very bad news. I think we need to stay focused and be strong, we should not allow this development to stall our continuous progress.

I have a question, because I haven't found the information in this thread - Are we going to recover the full amount that we donated to this research? I mean, it seems that Dr.K is giving back 15,500 $. What about the rest? Can we fund another study?

Even if the answer to the last question is yes, I have another one - Should we get involved with another push for more funds? Count me on board if we decide to make more projects/activities/publicity about this damn POIS!

Best Regards to everyone,

[Jimmy]

Hi,

Have a question here:

Does NORD support grants greater than 33K for the same research opportunity? I mean, if we succeed to increase the amount collected - for example to 50K - would this bring more attention and participation to our RFP?

If the answer is yes, It might be good idea to open the door for more donations prior to the new RFP.

[demografx]

Very good idea, Jimmy. We're discussing now at mods.

[Quantum]

I have a question, because I haven't found the information in this thread - Are we going to recover the full amount that we donated to this research? I mean, it seems that Dr.K is giving back 15,500 $. What about the rest? Can we fund another study?

Even if the answer to the last question is yes, I have another one - Should we get involved with another push for more funds? Count me on board if we decide to make more projects/activities/publicity about this damn POIS!

Best Regards to everyone,

Hi Observer,

About your first question, yes, we have all of our funds back, as stated somewhere in my rather long initial post.

About raising funds to manage projects, there is no resources for that at Poiscenter, currently.  What I see, in the last 2 years that I have been here, is that POIS sufferers struggle just to keep up with their own personal life.  So I hardly see who could manage such demanding endeavors when most members hardly even write more than a single post once every 3 months here, and the vast majority not even a single post ( remember we are over 500 hundreds members here.... where are they ? ).  There is not much spare time left from the moderators team neither  ( Demo is already very active, despite his recent fainting spells!) , and we will concentrate on mamaging the new project with NORD.  Maybe it is because POIS is a very debilitating disease, but resources for projects are very, very scarce, here.   

[demografx]

Hi Observer,

About your first question, yes, we have all of our funds back, as stated somewhere in my rather long initial post.

From Dr K letter to NORD in Quantum's post:

"Therefore, I have instructed the Rutgers University Grants and Management office to return, as soon as possible, the entire amount of funds that the contributors, through NORD, have provided for my project, which according to that office has been $15,500.00 to date (the originally committed funds totaled $31,000.00).  I hope that the contributors will be able to support other research with the returned, plus thus far uncommitted by NORD, funds, to eventually understand and cure POIS."

[demografx]

[daropac]

Brief thoughts while I digest this-

- The calls for legal action against Rutgers/Dr.K are misplaced and counter-productive.   There is likely no legal basis for a suit and there is no court remedy that we could seek which would be consistent with our objectives.   I'm upset too, but this isn't the right direction to head.
- I'm also in the area, spoke with a lady on the phone for a phone-survey where we talked for about ~45 minutes, and was optimistic that I would be selected for follow-up.   Just pointing this out as it's another data point where someone seemingly fit for the role was not selected for further research.   Probably doesn't mean anything.
- Is NORD our only approach to researching the cause of POIS?   Excluding any benefits of going through NORD because of subsidies they are providing (not sure if this is the case?  I'm not too familiar with the process), are there other avenues where we could privately take the funds raised to date + additional raised funds to an alternative research avenue?    We don't have all of the facts of what happened during this recent study, but we do know that we wasted ~3 years of valuable time.  It seems that the moderators have good reason to go through the NORD route, and this may very well be the best option, but are there alternative private options (which may/may not require more funding?)

[Quantum]

Brief thoughts while I digest this-

- The calls for legal action against Rutgers/Dr.K are misplaced and counter-productive.   There is likely no legal basis for a suit and there is no court remedy that we could seek which would be consistent with our objectives.   I'm upset too, but this isn't the right direction to head.
- I'm also in the area, spoke with a lady on the phone for a phone-survey where we talked for about ~45 minutes, and was optimistic that I would be selected for follow-up.   Just pointing this out as it's another data point where someone seemingly fit for the role was not selected for further research.   Probably doesn't mean anything.
- Is NORD our only approach to researching the cause of POIS?   Excluding any benefits of going through NORD because of subsidies they are providing (not sure if this is the case?  I'm not too familiar with the process), are there other avenues where we could privately take the funds raised to date + additional raised funds to an alternative research avenue?    We don't have all of the facts of what happened during this recent study, but we do know that we wasted ~3 years of valuable time.  It seems that the moderators have good reason to go through the NORD route, and this may very well be the best option, but are there alternative private options (which may/may not require more funding?)

No, NORD makes it affordable, and supply the regulatory environment.  $30 000 is very small in the research world.  Even $100 000 is small. NORD's mission is, in part, to make it more affordable for rare disorders to get quality research done.   


To give you an idea that medical research is really about big money, an average clinical drug trial, that is, a single study testing a single drug  ( like in phase 2 and phase 3 clinical trials, when done on humans and compared to placebo or compared to another well-established drug), is around 30 millions to 40 millions dollars , $30 000 000 tp $40 000 000  ( https://www.quora.com/How-much-do-clinical-trials-for-drugs-cost?share=1 )    .  A new drug on the market may have cost as much as  $800 miillions in clinical trials before reaching the market.   Now you may have a better sense that $30 000 is quite nothing, and NORD reputation and help is necessary in order to attract good researchers .


I may be wrong, but I think we have, as a little unknown forum about a rare disorder, as much chances to attract a high profile researcher to be interested in a project on POIS for $50 000 that you have to attract an NBA star in your hometown team of basketball for 100 bucks a game...... so, to be clear, we need some organization like NORD if we ever to attract a good research team.

[demografx]

- The calls for legal action against Rutgers/Dr.K are misplaced and counter-productive.   There is likely no legal basis for a suit and there is no court remedy that we could seek which would be consistent with our objectives.   I'm upset too, but this isn't the right direction to head.

Thanks, daropac, I assume (and hope) that most of us will arrive at this conclusion.

[demografx]

On Apr 3, 2017, at 9:17 PM, demo wrote:

Thanks, Barry. I wrote to NORD to see if we could get the detail report from your first interim report (HRV, etc.). Not the public summary, which we have.

They said that would have to come from you.
Please let me know; ...after 3-years...everyone is anxious for even a sliver of vagus nerve-related info that we can salvage and move forward with. Dr Nan has consulted with one of our members, and also another member (Global Moderator) just completed a 6-month "solo" trial of tVNS:
http://poiscenter.com/forums/index.php?topic=2387.msg20828#msg20828

I think we already have most of the survey info, since that originated at the forum; but the forum is clamoring for VN and associated data that we can primitively build on

Many thanks,
Demo

On Apr 3, 2017, at 9:04 PM, Barry Komisaruk wrote:

Thank you, Demo. I wrote to the IRB about posting the results of the questionnaire; have not heard back from them yet.
Barry
 
Barry R. Komisaruk, Ph.D.
Distinguished Professor of Psychology
Bd of Governors Dist Service Professor
Adjunct Professor of Radiology
Rutgers University – Newark
101 Warren Street
Newark, New Jersey 07102
   
From: demo
Date: Monday, April 3, 2017 at 11:53 PM
To: Dr K
Subject: Fwd: I posted today

From: demo
Date: April 3, 2017 at 11:26:33 AM PDT
To: Allison Seebald <aseebald@rarediseases.org>
Subject: I posted today

 

 

[Observer]

Hi Observer,

About your first question, yes, we have all of our funds back, as stated somewhere in my rather long initial post.

[/quote]

Thanks for your reply quantum.

Maybe it could be a good idea to place a donation thread/link at a prominent place in the forum.

Best Regards,

[Jimmy]

I'm wondering if the forum can communicate with dr. Marcel D. Waldinger to ask him to apply & participate in the new RFP that will be issued by NORD.

He is already doing researches on POIS.

[Defsync]

and this is why you spend money on PR first to gain enough public interest to fund better research rather than a hope and a prayer plus 30k. but seriously folks, dont universities do research on the mentally ill? isnt this research protected from complaints from the mentally diseased being researched? wouldnt a properly setup research group have taken that into account? my forensic files loving brain seems to take issue with the fact research has clearly been done in the past with diseased minds with barriers in place to stop a complaimt from someone suffering from the mental disorder (which in a cycle of inability to control NE this disease can easily be classified). what i smell is an eager university shutting it down because it wasnt something they wanted to approve in the first place. conspiracy theories aside. STOP ASKING PPL FOR MONEY FOR RESEARCH, if you are not going to do your part and get on video willing to explain POIS, what it does, how it affects your life, etc. This shelling bucks out for some casino slots research attempt seems more like a "I dont want to sacrifice my own privacy, so ill have ppl sacrifice their money instead". 

Because all of this 10 years of collecting donations and this failed bs research is a freakin joke, and a damn near waste of everybodys time. It sucks to want to be a fighter for a good cause because you have to show your face to the masses. But thats how PR is done. And until the PR ia done right nobodys going to give a shit about POIS or finding a cure.

im out

[Shep]

Hi. Are there any people here who participated in the NORD study? Do you communicate with them?The meaning of my question is that it is possible to organize a forum branch where people will download their own medical analysis, investigate, and then look for certain relationships between them.And it is even better to find an educated doctor who will be interested in both the scientific side and the financial one, to achieve the result.Such as for example Dr. Marcel Waldinger, but this is from a fantastic area)))
Although everything can happen in our life, the main thing is not to lose confidence and go to the goal!

[Hoping]

Shep raises a good point! As I mentioned elsewhere in the forum, I'd love to hear from the POISers who participated in Dr. K's study. Since the study isn't moving forward, I see no reason they can't share their experiences with the forum. It's my understanding that participants did in fact use a VNS device. Demo- do you know off the top of your head which forum members participated? Have any of them spoken up since we got the bad news from Dr. K?

[Daveman]

Shep raises a good point! As I mentioned elsewhere in the forum, I'd love to hear from the POISers who participated in Dr. K's study. Since the study isn't moving forward, I see no reason they can't share their experiences with the forum. It's my understanding that participants did in fact use a VNS device. Demo- do you know off the top of your head which forum members participated? Have any of them spoken up since we got the bad news from Dr. K?

Hi Hoping,

Information regarding members who participate and their results or even work programs are never revealed in these studies. If information is provided, it is of a general nature and excludes names and specifics. They can't release much technical information, because these studies can't reach any conclusion until all the information is in.

Nobody, not even NORD I beleive, knows who the participants were. If anyone knows, it must be held private.

If I understand correctly, participating members legally may not provide information either until some official conclusion is reached. In this case, the study terminated before such conclusion could be reached.  You may imagine, that even a participating member is not medically qualified to make a judgement. If it helped or didn't, says nothing for the potential of a program until the whole procedure may be discarted, modified or approved.

Sorry. It really is a shame....  This is a bitch of a condition, there are so  many factors...  as they say, it's not over until the fat lady sings!

[Shep]

Is it possible to bring a doctor of the endocrinologist to the forum so that he puts the analysis, and people from the forum post them in a separate branch, so look for common deviations.POIS is probably a failure in the adrenal glands, an incorrect distribution of hormones.
I am from another country and do not know your laws therefore I ask
Maybe there is an opportunity to apply to Dr. Marcel Waldinger, that he would visit at least this forum, but he is a very busy person, but still worth a try.
I have been suffering for more than 10 years POIS, there is a desire to find the truth!