[demografx]

Good work in contacting Dr Schweitzer demografx!

It would certainly be very exciting to have Dr Schweitzer looking further into POIS. A great number of people could benefit from potential POIS treatments!

Hurray, I hope it's ok with you, I'm sending your post to Dr Schweitzer as an indication of the interest here.

[demografx]

Thanks so much Demografx.  In fact, I have been in contact with Dr. Waldinger.  He said a couple months ago that he would have another paper in 6 months (according to him there is hope and that we have to remain patient); I didn't explicitly mention his name because I didn't want to unfairly raise hopes.  He knows about this thread; a second outside reminder would probably be a good thing though!  There is also another MD PhD who "definitely" wants to study our case. He also said he would be willing to take on a graduate student for this, if anyone is interested. I intend on showing them our survey results.

Great work everyone.

Thank you, Counterpoints. I have spoken to Dr Waldinger as well, and B_Jim has. But he has been too distracted with new projects recently.

Dr Schweitzer I feel is our best emissary right now.

"Another paper in 6 months"? That's what he told me 5 years ago []

[demografx]

Counterpoints, I really hope we can get the experience of Waldinger-Schweitzer on board. As to other researchers, they would have to start from scratch. Please don't get me wrong, if we can't get the experienced team on board for whatever reason, timing, priorities, etc., then we should absolutely keep looking for people in endocrinology/internal medicine.

My only concern is for the possibly steep learning curve of someone unfamiliar with POIS. Even Dr Waldinger took a few years to understand POIS patients' complaints and symptoms.

[martin88]

Absolutely fantastic Demografx !!! Many thanks for this. I've read the paper kindly sent by Pyropeach and i was very surprised. I knew all the story on Dr Waldinger and POIS by this forum but it's an other thing to read it for the first time.  I'm looking forward to read them again. And even if this is going nowhere, you've tried, this is the main thing. After all these years of misery one more deception won't be so terrible, we just have to continue in the same way.

Girlwind i wanted to do this test after your initial post. It will be interesting to do it again  after you take the supplement. (I can't find where it's written 16mcg of iodine.)
I'm not sure if you've done an other test for the thyroid, it should be showing something if the tincture test is meaningful.

[demografx]

Absolutely fantastic Demografx !!! Many thanks for this. I've read the paper kindly sent by Pyropeach and i was very surprised. I knew all the story on Dr Waldinger and POIS by this forum but it's an other thing to read it for the first time.  I'm looking forward to read them again. And even if this is going nowhere, you've tried, this is the main thing. After all these years of misery one more deception won't be so terrible, we just have to continue in the same way.

Girlwind i wanted to do this test after your initial post. It will be interesting to do it again  after you take the supplement. (I can't find where it's written 16mcg of iodine.)
I'm not sure if you've done an other test for the thyroid, it should be showing something if the tincture test is meaningful.

Thank you, martin88! This is one of the most promising times for this crazy, wicked illness!!

[hurray]

Good work in contacting Dr Schweitzer demografx!

It would certainly be very exciting to have Dr Schweitzer looking further into POIS. A great number of people could benefit from potential POIS treatments!

Hurray, I hope it's ok with you, I'm sending your post to Dr Schweitzer as an indication of the interest here.

Absolutely fine by me. With over 100 POIS sufferers posting on this forum alone, I think we represent the tip of the iceberg. As POIS awareness grows, I believe that thousands of people could ultimately be helped - these are exciting times for those of us looking for a cure!

[Counterpoints]

Counterpoints, I really hope we can get the experience of Waldinger-Schweitzer on board. As to other researchers, they would have to start from scratch. Please don't get me wrong, if we can't get the experienced team on board for whatever reason, timing, priorities, etc., then we should absolutely keep looking for people in endocrinology/internal medicine.

My only concern is for the possibly steep learning curve of someone unfamiliar with POIS. Even Dr Waldinger took a few years to understand POIS patients' complaints and symptoms.

I think we should have as many serious medical researchers looking into this as we can get, even if Waldinger-Schweitzer are also investigating.  It will offer additional expertise and perspective. And a researcher could catch up on current progress very quickly - it's what's demanded in their profession.

I'm very excited by all this though. .  I agree it would be wonderful to have Waldinger and Schweitzer helping us.

[girlwind]

The only thing that worries me is that we might get our hopes up too high about the idea of definitive "CURE"
for POIS. Having been through the roller coaster ride of CFS for 30 years, and having had so many potential hopes for
curing that turn sour, with minimal or no results, I fear that we may be really disappointed if these experts don't have
the big cure for POIS that we want so badly. Maybe it might be better emotionally to frame it up with a wait and see
what they have attitude. I just don't want us to feel devastated, if they fail to give us the silver bullet we want.

[demografx]

I think we should have as many serious medical researchers looking into this as we can get, even if Waldinger-Schweitzer are also investigating.  It will offer additional expertise and perspective. And a researcher could catch up on current progress very quickly - it's what's demanded in their profession.

I'm very excited by all this though. .  I agree it would be wonderful to have Waldinger and Schweitzer helping us.

The only thing that worries me is that we might get our hopes up too high about the idea of definitive "CURE"
for POIS. Having been through the roller coaster ride of CFS for 30 years, and having had so many potential hopes for
curing that turn sour, with minimal or no results, I fear that we may be really disappointed if these experts don't have
the big cure for POIS that we want so badly. Maybe it might be better emotionally to frame it up with a wait and see
what they have attitude. I just don't want us to feel devastated, if they fail to give us the silver bullet we want.

Counterpoints and girlwind, you both make different yet shared viewpoints to some degree, i.e., "let's not put all our eggs in one basket."

Very interesting!

I wonder how researchers would feel about "competing"? Also, I think our "research" should be geared fully toward a cure, and not just publication material. Research papers alone would be very interesting but too many people here desperately need a definitive end to this POIS nightmare of ours.

Meanwhile, I'm thrilled we have made this amount of progress in just a year and a half. on several fronts: proof that "we're not alone", understanding the amazing variety of symptoms in POIS suffering, worldwide publicity, a video, a survey research form site, shared insights, potential cures never imagined previously, sifting through the laughable (Joe Anthony is angry that I deleted his advertising, which he claims is a CURE for POIS) and camaraderie!

[demografx]

girlwind, in my last post I didn't fully respond to your well-stated thoughts about emotional levels of disappointment.

I agree 100%, it's easy to become devastated when hopes are soaring, but the reality comes crashing down that success is minimal, or worse, non-existent.

At this time, I don't think any researcher would promise a cure - only the charlatans who periodically visit and entertain us. Perhaps I use the word "cure" too frequently; my reason for it is to make sure we're focused on our true objective and not get side-tracked to some other channel...like becoming famous (e.g., published or part of a TV documentary), or becoming a social network, etc.

I agree. "Wait and see" is a healthy way to be.

[martin88]

Demografx, normally that is the case for me too, NE = orgasm. I am stumped as to what is going on here, sorry I have no answers, perhaps we will know in time.

For me nocturnal emission and orgasm are causing severe pois.
But i can notice some differences between the two :
NE occurs while sleeping, wake me up, and put me in an awful state of insomnia with a strong desire to sleep but it isn't possible because of a racing mind for the rest of the night(very pronounced symptom). I think NE stop an important phase of sleep. After NE i'm more depressed in the next days, it's really unbearable.
I'm not sure of the following because usually i avoid nocturnal emissions (by having orgasms instead), but i think NE cause a bit less physical fatigue and a lot more mental fatigue/depression than orgasm.
 

[demografx]

Schweitzer-Waldinger update

Email to me today from Dr. Schweitzer:
Dear Sir,

Thanks for your e-mail. I have contacted Dr. Waldinger yesterday (Dutch time). He advised me to send his e-mail adress to you for further correspondence.

Sincerely,

Dave Schweitzer MD.

My email to Dr Waldinger:
Dear Dr. Waldinger,
 
We spoke a few years ago. I wanted to write to you first but I could not locate your current email address.
 
I am a POIS sufferer and also the moderator of The POIS Forum.
 
Below is my letter to Dr Schweitzer which explains everything.
 
Can you help us?
(letter I posted yesterday to Dr Schweitzer follows)
==============================================================
To all:
I was a tad disappointed with the "Dear Sir" from Schweitzer and the simple pass-off to Dr Waldinger (although Dr Schweitzer yesterday on the phone clearly emphasized that Dr Waldinger is the prime conceptualizer and Dr Schweitzer is only the implementer)

Am I being too sensitive?

[demografx]

For me nocturnal emission and orgasm are causing severe pois.
But i can notice some differences between the two :
NE occurs while sleeping, wake me up, and put me in an awful state of insomnia with a strong desire to sleep but it isn't possible because of a racing mind for the rest of the night(very pronounced symptom). I think NE stop an important phase of sleep. After NE i'm more depressed in the next days, it's really unbearable.
I'm not sure of the following because usually i avoid nocturnal emissions (by having orgasms instead), but i think NE cause a bit less physical fatigue and a lot more mental fatigue/depression than orgasm.

It's such a shame that something as pleasant as NE can cause such great misery!

[girlwind]

Schweitzer-Waldinger update
==============================================================
To all:
I was a tad disappointed with the "Dear Sir" from Schweitzer and the simple pass-off to Dr Waldinger (although Dr Schweitzer yesterday on the phone clearly emphasized that Dr Waldinger is the prime conceptualizer and Dr Schweitzer is only the implementer)

Am I being too sensitive?

No, Demografx, you're not being too sensitive. This is why I would like to urge emotional restraint, when it comes to getting
these researchers' attention. We have all been in such need of help for SO LONG for this malady-without-end. So it's real tempting
to get overexcited by the possibility of hope for that illusive POIS cure. At this point, that's ALL it is. There is no promise of any-
thing more than that YET. Which is not to say that real good things aren't on the brink of happening, but rather that we are in
the process of finding out what might happen next. Everybody loves certainty, me included, but life is rarely that generous.

[hurray]

It's hard not to get excited when the likes of Dr Waldinger and Dr Schweitzer are aware of our efforts!

It's a positive move for Dr Schweitzer to have spoken to Dr Waldinger, who has invited you to e-mail him. While we may be desperate to seek cures for ourselves, POIS is only one part of the professional lives of these two doctors, and they may not be able to invest significant amounts of their time in POIS research at the moment.

The very fact that this large forum exists is proof to the doctors that many people suffer from POIS, and that their POIS research was a significant discovery.

I'm sure that this forum will be a very valuable resource for Dr Waldinger if he follows up his POIS studies - I look forward to being able to support him in his research when his professional duties allow him the time to do so.

Thanks for your continued fantastic work on this forum, demografx - the more we can raise awareness of this issue, the more likely it will be that medical professionals will add their expertise to our efforts

[demografx]

No, Demografx, you're not being too sensitive. This is why I would like to urge emotional restraint, when it comes to getting
these researchers' attention. We have all been in such need of help for SO LONG for this malady-without-end. So it's real tempting
to get overexcited by the possibility of hope for that illusive POIS cure. At this point, that's ALL it is. There is no promise of any-
thing more than that YET. Which is not to say that real good things aren't on the brink of happening, but rather that we are in
the process of finding out what might happen next. Everybody loves certainty, me included, but life is rarely that generous.

Many thanks, girlwind! I feel very hopeful and somewhat confident that we're getting closer to a POIS cure - yet realistic, based on my own experience. You can relate to this: after 30 years of searching, I finally gave up hope long ago. Until this Forum started, which made me more aware of my POIS and how everything I do might affect it. Levitra now cures about 75% of my POIS agony. Cialis was a disaster; my hopes were super-high for a 100% cure yet it didn't work at all!

I'm hoping that further serious study by outside researchers of the Levitra-Cialis success-failure may have implications for everyone! I hope that's not too egotistical, and maybe that will even have implications for women's POIS. It's a great start, in my opinion. And John21's early garlic success, and others here who have had symptom improvement with other experiments...this all sounds really good and positive and not dreamland.

I'm not arguing, girlwind. I'm just suggesting that too much emotional conservatism can lead to pessimism, but there is much evidence that success is attainable in the not too distant future.

ps - my usual WARNING to everyone: if you don't have ED, Levitra in my opinion should not be attempted until further research is completed. What works for my POIS in Levitra is unknown. But even for those with ED, it can affect the heart and, some say, vision.

[demografx]

It's hard not to get excited when the likes of Dr Waldinger and Dr Schweitzer are aware of our efforts!

It's a positive move for Dr Schweitzer to have spoken to Dr Waldinger, who has invited you to e-mail him. While we may be desperate to seek cures for ourselves, POIS is only one part of the professional lives of these two doctors, and they may not be able to invest significant amounts of their time in POIS research at the moment.

The very fact that this large forum exists is proof to the doctors that many people suffer from POIS, and that their POIS research was a significant discovery.

I'm sure that this forum will be a very valuable resource for Dr Waldinger if he follows up his POIS studies - I look forward to being able to support him in his research when his professional duties allow him the time to do so.

Thanks for your continued fantastic work on this forum, demografx - the more we can raise awareness of this issue, the more likely it will be that medical professionals will add their expertise to our efforts

Hurray, I don't know how to thank you for that wonderful post, it was beyond encouraging! And you're absolutely right, curing worldwide POIS - as crucial as it is to us - simply may not be their highest priority at this time. Sobering thought.

[girlwind]

I'm not arguing, girlwind. I'm just suggesting that too much conservatism can lead to pessimism, but there is much evidence that success is attainable in the not too distant future.

I am cautiously optimistic. I've been promised too much too often with CFS to be jumping up and down with glee
just yet. But I am happy that we are making progress on this journey.

[demografx]

I am cautiously optimistic. I've been promised too much too often with CFS to be jumping up and down with glee just yet. But I am happy that we are making progress on this journey.

My sentiments exactly, Dr Girlwind! []

[martin88]

There is also another MD PhD who "definitely" wants to study our case. He also said he would be willing to take on a graduate student for this, if anyone is interested. I intend on showing them our survey results.
Great work everyone.

Great work to you Counterpoints. Not all is lost Demografx.
And maybe we'll have help from Dr Waldinger. Not necessarily in the forum but in a further paper. If he decide to post here he'll be very welcome. It's a long way to go!