Free Flow Discussion about POIS

[LAPOISSE]

Nightingale,

I Agree 100% with everything you said ans thank you for the scientific method scheme ; it make sense. Nord research is the best thing we can do right now and we'll learn a lot about our condition. I'm not criticizing, I just share my opinion regarding CNS related disease and dystonia as I've been diagnosed for neurovegetative dystonia years ago which is, as I understand very close to the Dr Komisurak's hypotethis regarding POIS.

Of course, we'll give a warm welcome to Dr Komisurak ; We have a lot of thing to learn from him...and maybe he has a little ti learn from us as expert Poiser experiencer

[LAPOISSE]

Additionally I think it would be a pity not to profit from some members point of view especially Kurtosis who has a good knowledge about all that and who is actually cured. After discussing with many Poisers and my personal experience, I really think that digestion is the key ; If digestion is impaired, absorption of vitamins, mineral, amino acid, etc is impaired leading potentially to many problems with CNS probably one of the most potent of them. Observing and confirming that something is wrong in our brain is probably very useful, understanding why it's wrong would be the Graal.

[Colm]

To corroborate some of the discussion on digestion and Thyroid. I've been (along with Demo and some others) trying to live with this and self-helping with POIS "cures", for 40 years.

I can confirm in the early days of my POIS back in the 70's, Thyroid problem was a major component of the illness for me.

For the duration of my POIS, I have also had a digestion problem that when food hits my stomach, there is an automatic nervous tension response which forces me to chew the inside of my (mouth) gums. I have had this reaction since teen years.

I am NOT cured of POIS, but have made some very slow progress to feel a bit better each decade.

My most notable progress or leaps (from the 100's of things, therapies, ologies and diets I have tried) are:

- 10 years of taking a high grade St John's Wort.
-  Removal of alcohol, most dairy foods and wheat/gluten.
-  Taking herbal teas for years.
-  In the last few months, the positive impact that Niacin has had on some occasions for me (although not all occasions). I am still trying Niacin flush.

I don't have a scientific mind, and struggle to understand and interpret all the myriad of new ideas being presented here and on NSF, but I am very impressed with all your knowledge and thinking guys, and agree here with what Nightingale is saying. I am sure Dr. K (with his knowledge of the brain and orgasm) has a good reason to point the research in the direction he proposes.

I will endeavour to contribute by travelling 6K miles at my cost to hopefully provide my own fMRI to the cause. I don't wish this on any 20 year old struggling with this.

Daveman has said the research team seem keen to "establish a good POIS profile". Also suggesting "they are very interested in knowing all of the details of POIS, symptoms, onset, progression, remedies, histories, everything". With this in mind, there must be some format (the research team could advise us on) in which we can contribute our knowledge and highlights of trends and symptoms, what's helped etc, but in a manner that they (the research team) can analyse and find trends, rather than in free hand contributions on the board, which can't then be analysed easily. (D & D), would this be an item for agenda on next Skype call you have with the team? Could we then be collating this data appropriately for later use, as we await Rutgers approval for fMRI's. Can we thus add some value to the research in this way, to help all get the most out of their ultimate hypotheses and outputs from the research.
 
It is possibly unhelpful to have unstructured feedback and information presented to researchers, who I think like structure and data that can be validated and that can potentially form part of this evidence based approach. Am possibly stating the obvious here or could we repeating what others suggested.

[Daveman]

Their announcement should be forthcoming here VERY shortly. It should include some information as to procedures, requirements, and much of what you indicate.

They can't get started actually testing until they get official approval of the test program from their local facility, which could take 2 months. In that time we can get all formats for interchange of information in order, and preparations for "volunteers etc."

In the meantime it never hurts to share here with them in the place allocated for that on the forum.

[Colm]

Thanks for re-clarifying forthcoming announcement and what they will be doing.

[Stef]

It's interesting how the title of the study already give some kind of conclusion ; I didn't know researcher already had a theory to verify even before starting the research ; In my opinion there is pro and cons ; pro is that it's more go forward and I guess with limited fund they need to go straight to the point but if the theory is untrue we go back to 0. For exemple if Waldinger is right(remember, our 2011 POIS hero) and POIS is auto immune, not sure we see something in the MRI.

This is the scientific method:



When you refer to "some kind of conclusion," I think you are confusing this with their hypothesis. There is no title of the study, I don't see why they would need one?? There will be a title to their paper, that they publish once they, test, experiment, analyze then communicate the results. And, they have the freedom to change their hypothesis during testing! If the hypothesis is not being backed up, they can definitely change approaches in this study!

I don't see how fMRI has much of any chance of gettting us 0 progress... this is one of the most knowledgeable researchers in the field.  We might know a lot ourselves, but we havn't been able to fix each other. I think an outside, expert evaluation is needed, and that's exactly what we are getting.

Waldinger may be a hero is some respects, but who is to say this is autoimmune? It is still inconclusive. You are right in suspecting that Komisurak is looking to find out if there is pathology in our nervous system, but I am puzzled why there is so much worry that looking at fMRI will be a waste. The brain is the one best place to look to find out what is going on throughout the body. The brain responds and depends on feedback from the nerves.

There are many possibilities here, and I think the waste would be to rush. We are all wanting this fixed. Now. Right now. But the research that we have "bought" with all our money doesn't care about "right now."  It is careful, methodical, and evidence based. We have very little evidence that any of our own pet theories work, but Dr Komisurak has LOTS of evidence to back up his hypothesis. Now, he should know we have a lot of knowledge ourselves, and should listen carefully to us. But we should listen carefully to him. And be patient! We already have a doctor doing research on the autoimmune side of things with Waldinger, and he has not delivered. Let him keep trying. But we have a world class neurologist now, and that gives us a new weapon against POIS.

The brain is the most complicated thing in the known universe, and now we have an expert who studies it. I think we should give him our attention! He may not find "the cure", but I have a STRONG suspicion he will find something important. And that is what we should expect. If each of us wants to find the cure our own way, we should raise our own money and find our own NORD, so we can do exactly what we want. But I'm glad it didn't happen this way! NORD spent most of a YEAR deciding who would best help us, looking at a variety of specialist and scientists. I think they have set us up for success.

It's too early to start criticizing... please, lets give the Dr. a chance, and PLEASE give him a warm welcome when he starts posting.  Last thing I'd want to see is a bunch of critics critiquing his hypothesis before he even gets to talk to us directly... I hope I'm saying the obvious here!

Nightingale,

What a great post!!!


Stef

[demografx]

I second that (e)motion, Stef!

GREAT SCHEMATIC, NIGHTINGALE!!!!!


 

[demografx]

[Daveman] They are very determined to establish a good POIS profile first, and are also interested in taking the many and serious cognitive aspects into account as well.

They should be contacting the forum quite shortly. If not tomorrow, at least before the end of the week... but sooner than later.

All eagerly awaiting initial contacts from Dr. Komisaruk's team ?

[demografx]

This is just ONE (1) example -- it is NOT necessarily a POISCenter recommendation -- of numerous programs that might help you consider traveling to and participating in the Newark POIS Studies:



http://www.patienttravel.org/

[Chris]

Thanks Demo for pointing that out.
I would love to participate to the research and the fMRI tests even though i have a very busy year with school and the distance of course being so big.

It would be a huge experience and a chance to get to know with each other and discuss live.
This is our big chance guys! What we were waiting for all this time!

[Ccconfucius]

This is just ONE (1) example -- it is NOT necessarily a POISCenter recommendation -- of numerous programs that might help you consider traveling to and participating in the Newark POIS Studies:



http://www.patienttravel.org/

I will add MEGABUS and SPIRIT AIRLINES has sweet deals especially when planning ahead.

[demografx]

CertainlyPOIS, thank you! Very helpful to know all the options getting to Newark!

I'm sure we'll see more about it, especially after the University approves fMRI's of our POIS condition.

[demografx]

I will add [cost-effective patient travel to Newark]

1. MEGABUS

and

2. SPIRIT AIRLINES

has sweet deals especially when planning ahead.

[demografx]

All eagerly awaiting initial contacts from Dr. Komisaruk's team ?

The research group at Rutgers University-Campus at Newark has just received a grant from the National Organization of Rare Diseases (NORD) to characterize the physical and cognitive symptoms of POIS and test for possible vagus nerve involvement. Upon making all the necessary preparations for the study (which will take approximately 2 months) we will post here a detailed description of the research procedures and a
consent form for your possible participation. In the meantime, if you have questions, please feel free to contact us.
Pooja Lakshmin, MD plakshmin@psychology.rutgers.edu
Barry R. Komisaruk, Ph.D. brk@psychology.rutgers.edu

[cross-posted from Rutgers Research Announcement]
http://poiscenter.com/forums/index.php?topic=1225.msg11331#msg11331]

[demografx]

FROM NORD

"Cheers to 2014!!!

Since your last grant we have a donation of $320.00 from April 1 - Dec 31, 2013

Hope this helps

Kind Regards,

Cecilia Hall
Accounts Receivable Coordinator
National Organization for Rare Disorders (NORD) "

[demografx]

[demografx]

Daveman and I had a Skype conference today with Barry and Pooja.

Went well, I thought. It was an introduction to understanding POIS and how best to study it with Forum Volunteers (Defsync already has his bags packed

There will be a 1-2 month delay to get Rutgers' official approval to do fMRI's on POISers.

I think FMRI is a good first step, if we can prove that there are physiological changes in the brain of poisers, than trying to find the cause can be the next step.

Laurac, you're a longtime member and one of our most medically sophisticated members, so...THAT'S GOOD NEWS!!

[Prancer]

Daveman and I had a Skype conference today with Barry and Pooja.

Went well, I thought. It was an introduction to understanding POIS and how best to study it with Forum Volunteers (Defsync already has his bags packed

There will be a 1-2 month delay to get Rutgers' official approval to do fMRI's on POISers.

I think FMRI is a good first step, if we can prove that there are physiological changes in the brain of poisers, than trying to find the cause can be the next step.

Laurac, you're a longtime member and one of our most medically sophisticated members, so...THAT'S GOOD NEWS!!

This is fantastic!

[demografx]

There are some forms of dystonia like Dopamine-responsive dystonia (or Segawa's disease) which seems to have good improvement with l-dopa.

Interesting, b_jim!

Maybe this is a hopeful early clue that there _IS_ a solid way out of this miserable condition.

For everyone!!!

[demografx]

Seems like males are easier to study than females at Rutgers.

4,000 _less_  nerves in men.

Maybe that's why women's orgasms are often described as more intense and complex than men's.

As shown above, the clitoris has 8,000 nerves, while the penis has "only" ( ) half as much:  4,000 nerves!