Author Topic: Free Flow Discussion about POIS  (Read 660046 times)

Stef

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Re: This may seem like a familiar place.
« Reply #400 on: December 13, 2012, 12:22:19 PM »
Most may remember "Squiqqy" in Laverne and Shirley's TV sitcom... he has gone much of his life with a
complex disorder that makes living a pain! It's not POIS, but if you watch this video you'll see
that we have a lot in common.

http://www.youtube.com/watch?v=ubgURSn45jE&sns=em

He knows about us and offers us all of his wishes, that we push hard, as he has done in his life, to beat
this thing. Our solution and the solution for all the POIS sufferes of the world... even those who haven't
heard about our forum, is through RESEARCH

We are ALMOST THERE!!!

ONLY $9,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!

Please give generously. To yourself! NOW!

Click here to PLEASE donate:



 Please Click H E R E

Demo,

What an inspiring and wonderful video!  "Squiggy" -- aka David Landers -- is such a great role model for anyone struggling with a disabling condition.  His going from keeping it a big, dark secret (which must have been exhausting!) to becoming a major spokesperson for the MS Society is truly praiseworthy, to say the least!

I hope the message he sent you, that "he knows about your forum and about the POIS struggle" and "offers all of his wishes that we push hard, as he has done in his life, to beat
this thing..." resonates with the forum members. 

The world needs to know about this brutal condition -- it's still unknown in many scientific circles, and there are undoubtedly many men suffering in silence and isolation due to ignorance of this syndrome and support forum. Getting that one, solid research grant off and running is the only way to make this condition real in the world of scientists.

I've said this before -- the researchers are out there -- it's the funding that's lacking. That first fund must start with you men -- it's the nature of rare disease research.

$9,000 -- that's all you need to go forward -- by the end of March, 2013.   

You guys can do it -- remember -- Ebay sales, perhaps another crowd-sourcing project, some outreach letters to companies that might kick in just a few thousand -- YOU CAN DO THIS!

Stef

mellivora

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Re: This may seem like a familiar place.
« Reply #401 on: December 13, 2012, 03:54:30 PM »
Thanks Stef! Its time to get inspired again friends. We have 3 months. But this year we're in a hugely better position than last year.
It's going to happen.

demografx

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Re: This may seem like a familiar place.
« Reply #402 on: December 13, 2012, 07:26:13 PM »
THANKS, STEF!
           THANKS, MELLIVORA!
:o                 ::)
« Last Edit: December 14, 2012, 01:46:01 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Vincent M

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Re: This may seem like a familiar place.
« Reply #403 on: December 14, 2012, 12:04:36 PM »
Brainfog, thanks for making your first post on the forum and describing your POIS history.

I'd like to remind all of our members to make a post describing your exact symptoms and treatments you've tried here http://poiscenter.com/forums/index.php?topic=81.0 in the Personal POIS Summaries and Histories thread. This way when you post about new treatments you try everyone will know whether your type of POIS is similar to theirs or not. Also it will be a great source of organized and concentrated treatment data. Keep it clear and easily readable if possible.
« Last Edit: December 14, 2012, 12:31:09 PM by Vincent M »
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

mellivora

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Re: This may seem like a familiar place.
« Reply #404 on: December 17, 2012, 07:28:48 AM »
Yep, I'm still about! Been away a bit as always but back again as always. Big up you people that are here 24/7 :) Thanks.
I'm feeling I might have another campaign in me after the festive period...

Vincent M

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Re: This may seem like a familiar place.
« Reply #405 on: December 17, 2012, 10:54:51 AM »
I think we might need to appoint another mod to help deal with all this spam. Not to downplay the amazing job Daveman has been doing running this site for us.
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

mellivora

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Re: This may seem like a familiar place.
« Reply #406 on: December 17, 2012, 12:32:58 PM »
I know I've been away a while but....didn't realise I was considered spam here now ;)

Daveman

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Re: This may seem like a familiar place.
« Reply #407 on: December 18, 2012, 06:28:43 AM »
I think we might need to appoint another mod to help deal with all this spam. Not to downplay the amazing job Daveman has been doing running this site for us.

Thank God for the SPAM filter I have running. Since I've put it in service it has blocked over 38000 SPAM members!! Some still get through though. The filter is blocking over 250 per day now, which is a reflection of WEB visibility! So our visibiilty is getting better all the time.

I have erased about 4 SPAM posts a day.

There's a trick that can be applied which eliminates almost all SPAMMERS, but it means coding... and I just haven't had the time!

I'll see what we can do.

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Daveman

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Re: This may seem like a familiar place.
« Reply #408 on: December 18, 2012, 06:30:32 AM »
I know I've been away a while but....didn't realise I was considered spam here now ;)

By no means at all, LOL.

And BTW, if you are up for a campaign, fantastic, we'll get a good team of 4 or 5 tegether and find a way to go this last little hall to our goal!!!

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

demografx

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Re: This may seem like a familiar place.
« Reply #409 on: December 18, 2012, 07:06:20 AM »
Mel, have you seen our campaigning? (Email+posts)
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

mellivora

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Re: This may seem like a familiar place.
« Reply #410 on: December 18, 2012, 12:32:57 PM »
I have Demo, and what an amazing leap in our total funds as a result!! Good skills by everyone involved, huge thanks to everyone here and to the 'sponsor'. Every effort here benefits everyone whether they are on the forums or currently suffering alone and in silence and I remember how good it feels to be involved in that kind of movement knowing you've done a bit to help. So you and everyone who contributed to recent activities should feel immense! Lets all feel even more immense next year!

Vincent M

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  • Physical overshadows cognitive symptoms. 10yrs.
Re: This may seem like a familiar place.
« Reply #411 on: December 18, 2012, 01:04:51 PM »
Thank God for the SPAM filter I have running. Since I've put it in service it has blocked over 38000 SPAM members!!

Wow I didn't realize there were that many spam members trying to infiltrate. Unreal.
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

demografx

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Re: This may seem like a familiar place.
« Reply #412 on: December 18, 2012, 02:07:16 PM »
I have Demo, and what an amazing leap in our total funds as a result!! Good skills by everyone involved, huge thanks to everyone here and to the 'sponsor'. Every effort here benefits everyone whether they are on the forums or currently suffering alone and in silence and I remember how good it feels to be involved in that kind of movement knowing you've done a bit to help. So you and everyone who contributed to recent activities should feel immense! Lets all feel even more immense next year!


We have until the third week of March, 2013  ****12 more weeks**** to beg, borrow, steal, campaign, sell on Ebay, write to a few companies, approach any donor you can think of -- to reach just under $9,000 more.  This will get us to our goal of funding the first solid, scientific POIS research grant!!

LET'S START IN 2013 -- NOT 2014 -- DO IT NOW!!!

Yep -- it's the truth!

Share your ideas here!

OR just do it!  


Our POIS Medical Research Funding Progress!





 Please Click H E R E



WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!

As Nancy Reagan would say: "Just Say No!" [to 2014!]
« Last Edit: December 19, 2012, 03:34:58 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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  • All of us working together to defeat POIS!
Re: This may seem like a familiar place.
« Reply #413 on: December 30, 2012, 11:45:09 PM »
« Last Edit: December 30, 2012, 11:47:14 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Daveman

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Re: This may seem like a familiar place.
« Reply #414 on: January 01, 2013, 09:05:13 AM »
January 1st 2013, and the format of this forum is going to change.

There is a growing group dedicated to home remedies and theories which heavily undermine donation progress for TRUE Research.

It seems there are two good options for discussing these home remedies, which historically have lead to very little true progress, either producing
relief for only a few or producing waves of hope in a new and promising direction, that eventually fail, because the cure is not aimed at the cause
but at the relief of symptoms.

We all want relief of symptoms, and many herbal and OTC compounds have proven to be helpful to varying degrees to some, but the intense focus in
finding a remedy based on symptomology such does NOT get to the mechanism that stops POIS forever, nor is consistent for all.

We do not want to sell false hope nor lead users down dead end streets especially at the risk of furthering the damage to their systems just to
increase our member base.

This forum is not a playland. We would like our members to have a place to share their suffering and potential remedies, but not at the expense
of deviating from the main intent of desperately seeking real professional research and resolving the POIS puzzle.

This requires HIGHLY EXPERIENCED MEDICAL RESEARCHERS. It is NOT possible for untrained inexperienced individuals to resolve this
very complicated issue. Attempts at this are irresponsible and dangerous. Real research requires specific specialized and heavily experienced professionals
with decades of experience.

NSF and "Feellalike.com" are open and willing to risk amateur medical research. There are few controls and restrictions, the activity is even encouraged.

If you are willing to take the risks and lose valuable time and have your hopes dashed time and again, these may be ideal locations for you to experiment.

We bowed to the pressure, for a time, trying to maintain a collective in the hopes that we could finally achieve the professional research necessary, but
the risks are too high, so we have made the choice to focus in professional research.

As it is, with such heavy redirection of hope in unsupported theories, we will probably not make the March deadline, and will require at least another year
to raise the rest of the funds. So we feel that a slight interruption at this point in our change of focus will have little negative impact.

Our focus will move primarily to research funding efforts, companionship, sharing of potential useful symptomatic remedies, but there will be NO MORE
DISCUSSION of supposed theories for POIS cures.

We, none of us here are trained for it.

We will moderate this new approach strongly.

Feel free to visit sites who permit uncontrolled research and are willing to flagrantly promote false hopes. And good luck.

If we remain with just three members who are dedicated and intent on rolling up their sleeves to go this last mile, we need nothing more.


WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Vincent M

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  • Posts: 477
  • Physical overshadows cognitive symptoms. 10yrs.
Re: This may seem like a familiar place.
« Reply #415 on: January 01, 2013, 11:31:01 AM »
Daveman, so just to be clear. It's still okay to talk about treatments that have relieved symptoms for us, correct?

Would it be okay for someone to describe why they think a treatment might have worked to relieve their symptoms?

I wish I could help with our research fund, but as I am now I can barely maintain my sleep cycle and I can't even work a cash register at a job.
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

Daveman

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Re: This may seem like a familiar place.
« Reply #416 on: January 01, 2013, 11:40:52 AM »
Sure, as you so often have done.

And sure, often it is useful to try to understand what might be working or why. Every little thing may be an eventual link or hint.

But I want to avoid false hopes and or making evaluations that could well have no ground. We can raise doubts and question,
there ARE researchers watching. It may provide clues as to what is going on.

But we just can't be using people as guinea pigs for all that the members may be willing.

We don't know the dangers we could be subjecting people to. And we, at least here want to maintain the focus on
real research. It would be a miracle if we could make it by March.... but alas...



WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Vincent M

  • Sr. Member
  • ****
  • Posts: 477
  • Physical overshadows cognitive symptoms. 10yrs.
Re: This may seem like a familiar place.
« Reply #417 on: January 01, 2013, 01:02:48 PM »
I see. Sounds reasonable to me.
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

demografx

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  • All of us working together to defeat POIS!
Re: This may seem like a familiar place.
« Reply #418 on: January 01, 2013, 03:30:08 PM »
January 1st 2013, and the format of this forum is going to change.

There is a growing group dedicated to home remedies and theories which heavily undermine donation progress for TRUE Research.

It seems there are two good options for discussing these home remedies, which historically have lead to very little true progress, either producing
relief for only a few or producing waves of hope in a new and promising direction, that eventually fail, because the cure is not aimed at the cause
but at the relief of symptoms.

We all want relief of symptoms, and many herbal and OTC compounds have proven to be helpful to varying degrees to some, but the intense focus in
finding a remedy based on symptomology such does NOT get to the mechanism that stops POIS forever, nor is consistent for all.

We do not want to sell false hope nor lead users down dead end streets especially at the risk of furthering the damage to their systems just to
increase our member base.

This forum is not a playland. We would like our members to have a place to share their suffering and potential remedies, but not at the expense
of deviating from the main intent of desperately seeking real professional research and resolving the POIS puzzle.

This requires HIGHLY EXPERIENCED MEDICAL RESEARCHERS. It is NOT possible for untrained inexperienced individuals to resolve this
very complicated issue. Attempts at this are irresponsible and dangerous. Real research requires specific specialized and heavily experienced professionals
with decades of experience.

NSF and "Feellalike.com" are open and willing to risk amateur medical research. There are few controls and restrictions, the activity is even encouraged.

If you are willing to take the risks and lose valuable time and have your hopes dashed time and again, these may be ideal locations for you to experiment.

We bowed to the pressure, for a time, trying to maintain a collective in the hopes that we could finally achieve the professional research necessary, but
the risks are too high, so we have made the choice to focus in professional research.

As it is, with such heavy redirection of hope in unsupported theories, we will probably not make the March deadline, and will require at least another year
to raise the rest of the funds. So we feel that a slight interruption at this point in our change of focus will have little negative impact.

Our focus will move primarily to research funding efforts, companionship, sharing of potential useful symptomatic remedies, but there will be NO MORE
DISCUSSION of supposed theories for POIS cures.

We, none of us here are trained for it.

We will moderate this new approach strongly.

Feel free to visit sites who permit uncontrolled research and are willing to flagrantly promote false hopes. And good luck.

If we remain with just three members who are dedicated and intent on rolling up their sleeves to go this last mile, we need nothing more.




I wish to acknowledge my total agreement with the above.

THANK YOU, DAVEMAN!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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  • All of us working together to defeat POIS!
Re: This may seem like a familiar place.
« Reply #419 on: January 01, 2013, 03:31:51 PM »

[Daveman's Forum Statement quoted directly below] sounds reasonable to me.


Thank you, Vincent M, for your support. You are a valued member.
« Last Edit: January 01, 2013, 10:32:24 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business