Post Orgasmic Illness Syndrome (POIS)

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Offline pois1

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« Reply #14650 on: 17/09/2011 23:54:17 »
Had another O and this time I immediately took Benadryl and aspirin.  I feel surprisingly good given two Os so close to each other.  I'll have to try the green tea/fenugreek.

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Offline GoingCrazy

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« Reply #14651 on: 18/09/2011 03:09:52 »
Had another O and this time I immediately took Benadryl and aspirin.  I feel surprisingly good given two Os so close to each other.  I'll have to try the green tea/fenugreek.

I took a Benadryl last time I had POIS.  It made me really tired and I could tell it stayed in my system for about 2 days, I just took one pill.

Is there anybody here that has heavy heartbeats at night?  Seems that especially right before bed I experience heavy heartbeats.  It will beat and than stop for a moment longer than beat again but much heavier, than return to a normal heavy heartbeat.

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Offline Quasar

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« Reply #14652 on: 18/09/2011 13:27:08 »
Had another O and this time I immediately took Benadryl and aspirin.  I feel surprisingly good given two Os so close to each other.  I'll have to try the green tea/fenugreek.

I took a Benadryl last time I had POIS.  It made me really tired and I could tell it stayed in my system for about 2 days, I just took one pill.

Is there anybody here that has heavy heartbeats at night?  Seems that especially right before bed I experience heavy heartbeats.  It will beat and than stop for a moment longer than beat again but much heavier, than return to a normal heavy heartbeat.

I also get that. I think it's called PVC's. It's usually a benign condition. People get them when they are nervous, or sometimes if you are low in some minerals (magnesium, potasium...).

I get more PVC's when i'm under Pois. I also get more orthostatic hypotension when i'm under Pois.

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Offline WeEndThemAll

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« Reply #14653 on: 18/09/2011 14:07:22 »
Who is the admin on the new forum poiscenter, the registration process needs to bee faster it take to much time to get approved by the administrator.

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Offline Guthrie

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« Reply #14654 on: 18/09/2011 18:42:45 »
Hi all, an update on my experiences with niacin.  When I first took the niacin (about a month and a half ago), I did so with 300 mg, and had a flush that lasted about one hour.  The next day, my POIS was reduced to about 15-20%.  So that was promising. 

But, I thought that a one-hour flush seemed a little bit long.  So, in subsequent attempts, I only took 100 mg or 200 mg.  This still produced a full flush, but one that didn't last as long.  However, with these, I found that my POIS-reduction was not as significant.  So that made me think that maybe the niacin wasn't working for me.

But then, on Friday night, I decided to try 300 mg again.  This time, I had an O about 2 hours after taking the niacin, and then the next day, my POIS was reduced to about 15-20% again. 

This makes me think that perhaps simply 'experiencing the flush' may not be the sole factor to consider -- one can achieve the flush with lower doses (100 mg/200 mg), but it may be that that the higher (300 mg) dose may be doing other things as well.  (E.g., perhaps, using up greater stores of histamine, so that one has a less-strong histamine reaction in response to O.) 

So, I think this could be an important thing to consider: 'achieving a flush vs. not achieving a flush' is not the only thing going on, and so we should not focus just on that.  Rather, a flush could simply be an outward sign of something else that the niacin is doing, and while a lower dose may still achieve the flush, it may not be as effective at doing that 'something else.' 

And, it could be the case that if that 'something else' is something like using histamine stores (or something similar), it could be that the niacin could still have that same effect, even if one built up a tolerance to the flush-effect.  In this case, it might be possible that taking niacin every day could be helpful for POIS, even if that lessened the effect of the flush in particular.

What do others think? 
« Last Edit: 18/09/2011 19:07:20 by Guthrie »

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Offline Quasar

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« Reply #14655 on: 18/09/2011 19:46:31 »
Hi all, an update on my experiences with niacin.  When I first took the niacin (about a month and a half ago), I did so with 300 mg, and had a flush that lasted about one hour.  The next day, my POIS was reduced to about 15-20%.  So that was promising. 

But, I thought that a one-hour flush seemed a little bit long.  So, in subsequent attempts, I only took 100 mg or 200 mg.  This still produced a full flush, but one that didn't last as long.  However, with these, I found that my POIS-reduction was not as significant.  So that made me think that maybe the niacin wasn't working for me.

But then, on Friday night, I decided to try 300 mg again.  This time, I had an O about 2 hours after taking the niacin, and then the next day, my POIS was reduced to about 15-20% again. 

This makes me think that perhaps simply 'experiencing the flush' may not be the sole factor to consider -- one can achieve the flush with lower doses (100 mg/200 mg), but it may be that that the higher (300 mg) dose may be doing other things as well.  (E.g., perhaps, using up greater stores of histamine, so that one has a less-strong histamine reaction in response to O.) 

So, I think this could be an important thing to consider: 'achieving a flush vs. not achieving a flush' is not the only thing going on, and so we should not focus just on that.  Rather, a flush could simply be an outward sign of something else that the niacin is doing, and while a lower dose may still achieve the flush, it may not be as effective at doing that 'something else.' 

And, it could be the case that if that 'something else' is something like using histamine stores (or something similar), it could be that the niacin could still have that same effect, even if one built up a tolerance to the flush-effect.  In this case, it might be possible that taking niacin every day could be helpful for POIS, even if that lessened the effect of the flush in particular.

What do others think? 

Yes, it's perfectly possible. Niacin has been studied as a potential migraine preventive agent, and in those studies is usually taken every day for few months, and usually at higher doses than 100 mg. But be cautious, because Niacin at high doses can be toxic.

Take a look at this:

" It is not known if PGD2 causes vasodilation of the intracranial arteries, but niacin's ability to abort acute migraine headaches suggests that this might be what is occurring. Old reports cited by Bicknell and Prescott [24], demonstrate that niacin does indeed cause vasodilation of the cerebral and spinal vessels, and that intravenous administration increases the rate of intracranial blood flow in human beings for 20–60 minutes without any significant change in blood pressure. Unfortunately, there have not been more recent reports examining the effects that niacin has upon cerebral blood flow in human subjects."

"Some of the reports did demonstrate prophylactic benefits when niacin was administered orally every day. It is now recognized that a deficit of mitochondrial energy metabolism (i.e., impaired mitochondrial phosphorylation potential) plays a role in the pathogenesis of chronic migraine headaches [28]. Niacin maintains adequate mitochondrial energy metabolism by increasing substrate availability to complex I [29], and this is how it might function as an effective prophylactic agent for migraine prevention. Two other nutritional agents (riboflavin and coenzyme Q10) augment complex I of the mitochondrial respiratory chain, and have been subjected to clinical trials demonstrating their effectiveness for the prevention of migraine headaches [30-32]. A deficit of mitochondrial energy metabolism may play a role in the pathogenesis of migraine. Since niacin improves mitochondrial energy metabolism by increasing substrate availability to complex I, it might also be an effective agent for migraine prevention."

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Offline Vincent M

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« Reply #14656 on: 18/09/2011 19:58:14 »
The only thing about fenugreek is I can't take it before bed cuz it'll keep me up all night. If I take it around 1pm I'll be able to go to sleep by midnight. So I generally take 2 pills in the morning and 2 around noon.
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline Guthrie

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« Reply #14657 on: 18/09/2011 20:35:41 »

Yes, it's perfectly possible. Niacin has been studied as a potential migraine preventive agent, and in those studies is usually taken every day for few months, and usually at higher doses than 100 mg. But be cautious, because Niacin at high doses can be toxic.


Actually, I think we should be more specific with regard to claims about 'high doeses of Niacin'.  Obviously, it is important to be cautious in taking any supplement.  However, in pretty much all the different sources I've looked at, the 'liver-risky' dosage is often listed at 3 g (= 3000 mg) per day.  The lowest number that I've seen anywhere for a 'liver-risky' dosage is 1 g (= 1000 mg) per day.  On top of that, it is specifically the slow-release form of niacin that has the most risks for the liver.  As such, from what I've read, it seems that taking up to 1000 mg per day of the 'regular' (i.e. 'flushing') variety of niacin does not appear to be dangerous for the liver.  And so 300 mg per day would certainly seem to fall well within this non-risk range.

If I'm wrong about this, please correct me -- we shouldn't gloss over risks, but we also should avoid over-stating them.

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Offline Starsky

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« Reply #14658 on: 18/09/2011 21:57:13 »
The only thing about fenugreek is I can't take it before bed cuz it'll keep me up all night. If I take it around 1pm I'll be able to go to sleep by midnight. So I generally take 2 pills in the morning and 2 around noon.


I noticed it too but now after a month of taking i can take how much i want before bedtime and i sleep very well.

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Offline demografx

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« Reply #14659 on: 18/09/2011 22:03:32 »

We shouldn't gloss over risks, but we also should avoid over-stating them.


Guthrie, excellent point to remember for ALL dosing trials and experiences!

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Offline Quasar

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« Reply #14660 on: 18/09/2011 22:37:47 »
I've got a question: is it equally effective to take Niacin (or any other vitamin) alone, than to take a B-complex that contains the same quantity of Niacin?

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Offline Guthrie

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« Reply #14661 on: 18/09/2011 22:50:54 »
I've got a question: is it equally effective to take Niacin (or any other vitamin) alone, than to take a B-complex that contains the same quantity of Niacin?

I would think that in principle the Niacin could still be effective if taken in a B-complex.  However, I think that the form of niacin in most B-complex vitamins is nicotinamide, i.e. the non-flushing type -- so it might be that factor, rather than the presence of other vitamins, that might make B-complex less effective for niacin-treatment of POIS. 

Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

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Offline horizon

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« Reply #14662 on: 18/09/2011 23:07:18 »
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

Or also compare Niacin with L-Histidine.

http://psychology.wikia.com/wiki/Histamine
Sexual response
Research has shown that histamine is released as part of the human orgasm from mast cells in the genitals. If this response is lacking this may be a sign of histapenia (histamine deficiency). In such cases, a doctor may prescribe diet supplements with folic acid and niacin (which used in conjunction can increase blood histamine levels and histamine release), or L-histidine.



if L-histidine works too (prior, like niacin) then it could point towards low histamine at orgasm as a feature of POIS, if you get my drift.

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Offline POIS-SUFFERER

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« Reply #14663 on: 19/09/2011 02:15:56 »
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

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Offline GoingCrazy

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« Reply #14664 on: 19/09/2011 05:52:01 »
Had another O and this time I immediately took Benadryl and aspirin.  I feel surprisingly good given two Os so close to each other.  I'll have to try the green tea/fenugreek.

I took a Benadryl last time I had POIS.  It made me really tired and I could tell it stayed in my system for about 2 days, I just took one pill.

Is there anybody here that has heavy heartbeats at night?  Seems that especially right before bed I experience heavy heartbeats.  It will beat and than stop for a moment longer than beat again but much heavier, than return to a normal heavy heartbeat.

I also get that. I think it's called PVC's. It's usually a benign condition. People get them when they are nervous, or sometimes if you are low in some minerals (magnesium, potasium...).

I get more PVC's when i'm under Pois. I also get more orthostatic hypotension when i'm under Pois.

Thanks for the response, I always wondered if I was alone with this.  Maybe I am nervous and just need to relax and not always worry about this condition.

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Offline GoingCrazy

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« Reply #14665 on: 19/09/2011 06:00:51 »
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

Regarding the anger part, I think its just really frustrating not "O'ing" so we cannot get rid of our testosterone.  I have built up anger throughout almost all of these days and try to keep it inside.  Any little thing will tick me off.  My brain fog seems a lot better, to the point where it's probably not even there anymore.  It is pretty much gone besides sometimes while I am sleeping.

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Offline Guthrie

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« Reply #14666 on: 19/09/2011 10:01:51 »
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

Niacinamide is a synonym for nicotinamide -- so if it is effective for you, this could further indicate that it is not necessarily the flush per se that is the indicator.  It would be good for someone to test both the flushing and non-flushing varieties comparatively.

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Offline Quasar

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« Reply #14667 on: 19/09/2011 12:36:03 »
I've got a question: is it equally effective to take Niacin (or any other vitamin) alone, than to take a B-complex that contains the same quantity of Niacin?

I would think that in principle the Niacin could still be effective if taken in a B-complex.  However, I think that the form of niacin in most B-complex vitamins is nicotinamide, i.e. the non-flushing type -- so it might be that factor, rather than the presence of other vitamins, that might make B-complex less effective for niacin-treatment of POIS. 

Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

But on the other hand, i have read that B vitamins compete with each other for absorption. I mean, if you take too much Niacin, you may downregulate another B vitamin. So, i'm still not sure if it's the same to take 100 mg of Niacin alone, or take a B-complex which includes 100mg Niacin, supposing i could find one with the flushing-type.

So, now we can count at least 3 theories about Niacin:

A) It helps in cases of Histapenia (low histamine). Could be proved if L-Histidine also works for us.

B) It helps because it causes cerebral vasodilation (the same reason XN works).

C) It helps because it helps energy mitochondrial metabolism. This last theory can be proved if we try for a long enough period the two other agents that help energy: riboflavin and coenzyme Q10.

The two last theories (B and C) are the main reasons why Niacin is considered a migraine/headache preventive/abortive.

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Offline lauracostis

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« Reply #14668 on: 20/09/2011 04:12:10 »
I've got a question: is it equally effective to take Niacin (or any other vitamin) alone, than to take a B-complex that contains the same quantity of Niacin?

I would think that in principle the Niacin could still be effective if taken in a B-complex.  However, I think that the form of niacin in most B-complex vitamins is nicotinamide, i.e. the non-flushing type -- so it might be that factor, rather than the presence of other vitamins, that might make B-complex less effective for niacin-treatment of POIS. 

Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

But on the other hand, i have read that B vitamins compete with each other for absorption. I mean, if you take too much Niacin, you may downregulate another B vitamin. So, i'm still not sure if it's the same to take 100 mg of Niacin alone, or take a B-complex which includes 100mg Niacin, supposing i could find one with the flushing-type.

So, now we can count at least 3 theories about Niacin:

A) It helps in cases of Histapenia (low histamine). Could be proved if L-Histidine also works for us.

B) It helps because it causes cerebral vasodilation (the same reason XN works).

C) It helps because it helps energy mitochondrial metabolism. This last theory can be proved if we try for a long enough period the two other agents that help energy: riboflavin and coenzyme Q10.

The two last theories (B and C) are the main reasons why Niacin is considered a migraine/headache preventive/abortive.
I think L-Histadine would be a good test to try.  It seems counter intuitive in regards to our auto-immune theory, but I have been thinking about trying it for a couple years now after I felt bad all day after taking claritin one time.

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Offline lauracostis

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« Reply #14669 on: 20/09/2011 04:38:26 »
Here is something interesting to read about L-Histadine.


"Researchers are aware of the effects of increased levels of L-histidine, a precursor to Histamine, which can produce sensations of intense warmth that quickly spreads throughout the body. This warming effect is secondary to a release of the histamine that produces a dilation of blood vessels and capillaries, which results in subsequent increase in blood flow. The vasodilatation of the blood vessel is very similar to the flush felt instantaneously during sexual excitement. Orgasm is triggered when histamine is released in the body from the mast cells. These cells function as part of the immune system, but also cause the sexual flush experienced during arousal. For both functions, the active ingredient is histamine. When there is insufficient histamine in the body, histamine production is low and women find it difficult, sometimes even impossible to achieve orgasm. Individuals who release Histamine easily generally do not have difficulty in achieving an orgasm.         Pfeiffer, C. 1975. Mental and Elemental Nutrients: A Physician\rquote s Guide to Nutrition and Health Care. Keats. New Canaan:Connecticut."

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Offline Quasar

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« Reply #14670 on: 20/09/2011 11:25:41 »
I'm not sure if i had an allergic reaction to Niacin. The few times i've taken it, i feel something rare in my breathing. It's not severe, as i only took 100mg. Do you also feel something different in your breathing? It's like it's a little more difficult to inhale air. But not by much. Maybe it's just the flush  [???]

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Offline Guthrie

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« Reply #14671 on: 20/09/2011 12:30:47 »
I think L-Histadine would be a good test to try.  It seems counter intuitive in regards to our auto-immune theory, but I have been thinking about trying it for a couple years now after I felt bad all day after taking claritin one time.

Yes, it seems that, even if POIS is related in some way to the autoimmune system, it could potentially be a matter of TOO MUCH histamine or NOT ENOUGH histamine. 

And with the niacin, it seems like it could potentially be doing either as well: either using up excess histamine, so that it isn't over-released in a negative way during POIS, or providing extra histamine, so that POIS doesn't cause a negative depletion of histamine.

But, testing L-histamine could potentially help to determine whether one of these possibilities seems more likely.  (Although it could also be that neither of them turns out to be the case -- but we'll only know through testing!)

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Offline Itsthatskater

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« Reply #14672 on: 20/09/2011 21:14:09 »
Well guys, this is kinda sad, Pois is ruining my life, Im missing school because im so sick from it and im too embarrassed to tell the nurse whats wrong. This is ruining my life. It really sucks

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Offline daveman

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« Reply #14673 on: 20/09/2011 22:51:36 »
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

An individual thread has been opened on the SMF forum for a brief discussion of  the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.

Your friendly POIS Forum Moderators,
Demografx
Daveman

How does Murphey do it??

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Offline Quasar

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« Reply #14674 on: 20/09/2011 23:58:03 »
Well guys, this is kinda sad, Pois is ruining my life, Im missing school because im so sick from it and im too embarrassed to tell the nurse whats wrong. This is ruining my life. It really sucks

I know...I also had problems with school. And now i have problems at work because of Pois. And i'm afraid to get a girlfriend because:

A) My sexual potency is very poor when i'm under Pois, nearly impotent. Does this also happen to you?

B) If she wants to have sex regulargy, i would be always in Pois.

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Offline lauracostis

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« Reply #14675 on: 21/09/2011 01:01:42 »
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

An individual thread has been opened on the SMF forum for a brief discussion of  the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.

Your friendly POIS Forum Moderators,
Demografx
Daveman


we should be sending requests for donations to organizations and private donors who give money.  One or two outside donors could easily fund the minimum amount we need to get started.  I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them.  We should start soliciting these entities ASP.

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Offline Guthrie

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« Reply #14676 on: 21/09/2011 02:22:32 »
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

A new and enouraging development: when I read POIS-SUFFERER's response, I was somewhat surprised.  Niacinamide (= Nicotinamide) is a non-flushing form of niacin.  So, since we had generally had been attributing the success of both niacin and XN to its flushing properties, then one would think that the non-flushing form wouldn't be effective for POIS.  But, it apparently *was* working for POIS-SUFFERER.  So, what to make of this seeming contradiction?

I said to myself, "Hmmm, what would Galileo do?"  So, I went out and got a bottle of Niacinamide (which is a non-flushing form -- not the same as 'slow release niacin', which *is* flushing, but has a spread-out, rather than concentrated effect).  Last night, I took two 550 mg capsules, for a total of 1100 mg.  There was no flush whatsoever.  Two and a half hours after taking the capsules, I had an O.  The next day: essentially 90% POIS-free!!!  Possibly even 95%! And, this was in terms of basically all of my normal POIS symptoms: brain fog, mood, concentration, energy.  Definitely a noticeable difference even from the effect of my last trial, with 300 mg of the regular (flushing) variety of niacin, and which had worked pretty well (80-85%).  It may be that the overall amount (1100 mg vs. 300 mg) had something to do with it as well.

So, while I'll have to test it again to rule out one-time effect or placebo, the non-flushing Niacinamide seems pretty clearly to have worked *very* well.  This seems to reconfigure our basic hypotheses about why niacin works: from this result, it would seem that it is not the flushing that makes a difference at all!  Rather, it would seem to have to be some property that regular (flushing) niacin also shares with the non-flushing variety.

So, what is that property?  Not sure at this point, but even just this result can help point us in the proper direction.  I will certainly be testing it again, and others may want to try Niacinamide/Nicotinamide to see how your results compare to the flushing variety.  In my case, it was also an added bonus not to have to experience the flush, which was often pretty uncomfortable for me with the itching/heat.

We shall see...
« Last Edit: 21/09/2011 02:25:41 by Guthrie »

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Offline helloworld

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« Reply #14677 on: 21/09/2011 02:38:42 »
Without reiterating all the affects everyone else has that I also experience, what I've found that works consistently to speed up feeling "normal" again is blending (not juicing) the following: kale (about a cereal bowl full,) blueberries (about one handful), strawberries(4-6), 2 bananas, Hershey's cocoa (non-alkalized -- about two teaspoons,) 1 celery stalk, baby leaf spinach (about half a cereal bowl,) red globe grapes (seeded, including the seeds, about 10-15 grapes) and a half red bell pepper. I generally make about 4 full mugs full and drink it in one sitting. If you try this, be warned, your stool will be quite unpleasant the first one or two days. I had two experiment with the kale dosage, as I was feeling very nauseated/dizzy using more than one bowl the next day when I was experimenting (still doing so, but so far, this blend is working for me.) Also be careful if you're on a low-oxalic diet, spinach and kale, and the berries do have a lot of oxalic acid. Hope this helps some people.

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Offline demografx

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« Reply #14678 on: 21/09/2011 04:11:13 »
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

An individual thread has been opened on the SMF forum for a brief discussion of  the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.

Your friendly POIS Forum Moderators,
Demografx
Daveman


we should be sending requests for donations to organizations and private donors who give money.  One or two outside donors could easily fund the minimum amount we need to get started.  I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them.  We should start soliciting these entities ASP.

Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?

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Offline Itsthatskater

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« Reply #14679 on: 21/09/2011 04:38:14 »
Well guys, this is kinda sad, Pois is ruining my life, Im missing school because im so sick from it and im too embarrassed to tell the nurse whats wrong. This is ruining my life. It really sucks

I know...I also had problems with school. And now i have problems at work because of Pois. And i'm afraid to get a girlfriend because:

A) My sexual potency is very poor when i'm under Pois, nearly impotent. Does this also happen to you?

B) If she wants to have sex regulargy, i would be always in Pois.


Yeah, when im with a girl its really hard for me to last because i put myself on a dry spell because of POIS. I have a doctors appointment coming up and im going to tell her all bout Pois and what she thinks can help, its worth a shot.

It sucks, I suffer from Pois for about 48 hours and then im good. So i mean i dont think I would have to worry that much but i definitly think Allergy medicines and stuff like that helps.

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Offline POIS-SUFFERER

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« Reply #14680 on: 21/09/2011 06:24:06 »
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

A new and enouraging development: when I read POIS-SUFFERER's response, I was somewhat surprised.  Niacinamide (= Nicotinamide) is a non-flushing form of niacin.  So, since we had generally had been attributing the success of both niacin and XN to its flushing properties, then one would think that the non-flushing form wouldn't be effective for POIS.  But, it apparently *was* working for POIS-SUFFERER.  So, what to make of this seeming contradiction?

I said to myself, "Hmmm, what would Galileo do?"  So, I went out and got a bottle of Niacinamide (which is a non-flushing form -- not the same as 'slow release niacin', which *is* flushing, but has a spread-out, rather than concentrated effect).  Last night, I took two 550 mg capsules, for a total of 1100 mg.  There was no flush whatsoever.  Two and a half hours after taking the capsules, I had an O.  The next day: essentially 90% POIS-free!!!  Possibly even 95%! And, this was in terms of basically all of my normal POIS symptoms: brain fog, mood, concentration, energy.  Definitely a noticeable difference even from the effect of my last trial, with 300 mg of the regular (flushing) variety of niacin, and which had worked pretty well (80-85%).  It may be that the overall amount (1100 mg vs. 300 mg) had something to do with it as well.

So, while I'll have to test it again to rule out one-time effect or placebo, the non-flushing Niacinamide seems pretty clearly to have worked *very* well.  This seems to reconfigure our basic hypotheses about why niacin works: from this result, it would seem that it is not the flushing that makes a difference at all!  Rather, it would seem to have to be some property that regular (flushing) niacin also shares with the non-flushing variety.

So, what is that property?  Not sure at this point, but even just this result can help point us in the proper direction.  I will certainly be testing it again, and others may want to try Niacinamide/Nicotinamide to see how your results compare to the flushing variety.  In my case, it was also an added bonus not to have to experience the flush, which was often pretty uncomfortable for me with the itching/heat.

We shall see...

Yep was not lying :-) I have clearly demonstrated with myself that it is not placedo, I do not get 90-95% however, more maybe 75%, but I have never up'd the dose to 1500mg, always 1000mg. 500mg per capsule.
I have been using it for many many months, my doctor told me to try it after I described all my
"issues", I spoke of it also months ago, but no one was on the XN/B3 path yet.......

PS.

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Offline daveman

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« Reply #14681 on: 21/09/2011 11:36:36 »
That's interesting about your doctor suggesting it!!! He must be very astute.

What type of doctor is he? Did he have any suggestions as to why you should try Niacin(amide)?

How does Murphey do it??

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Offline POIS-SUFFERER

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« Reply #14682 on: 21/09/2011 18:53:11 »
That's interesting about your doctor suggesting it!!! He must be very astute.

What type of doctor is he? Did he have any suggestions as to why you should try Niacin(amide)?



Wish I could remember, it was all very complicated as I had many symptoms, but she said I had a "damp kidney"? she is a real MD but practices as a homeopath. She also tried to get my stomach acid to increase but I had to stop that due to VERY bad heartburn. I had to stop seeing here also, $135 per hour! I hope someday to have enough money to start seeing her again.

She was also very clear that I was to ONLY buy Niacinamide and not any of the others... She wrote not Niacin, not Nicotinic Acid, not the one called No Flush, not the one called extended, and not Nicotinamide. She said that Niacinamide should not cause a flush, but the "No Flush" type is not Niacinamide it another type with an added component to cause no flush.

Guthrie, you said you took 1100mg and got very good results, it would help to know your weight, I am 210lbs and I am curious if you got better result due to a lower body weight.

BUT I must also stress I am much better also once off CAFFEINE, people should try this!!!

My theory on POIS is we are all working with stressed out systems, and an O just puts our systems over the edge....

PS.
« Last Edit: 21/09/2011 19:09:32 by POIS-SUFFERER »

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Offline Guthrie

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« Reply #14683 on: 21/09/2011 21:26:33 »

Yep was not lying :-) I have clearly demonstrated with myself that it is not placedo, I do not get 90-95% however, more maybe 75%, but I have never up'd the dose to 1500mg, always 1000mg. 500mg per capsule.
I have been using it for many many months, my doctor told me to try it after I described all my
"issues", I spoke of it also months ago, but no one was on the XN/B3 path yet.......

PS.

POIS-SUFFERER, I didn't mean to cast doubt on your initial statement! :)  I just wanted to try it for myself as well. 

Can you tell us how long ago you started taking the Niacinamide?  Have you been taking it every day since then?
« Last Edit: 21/09/2011 21:30:20 by Guthrie »

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Offline Guthrie

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« Reply #14684 on: 21/09/2011 21:28:53 »

Guthrie, you said you took 1100mg and got very good results, it would help to know your weight, I am 210lbs and I am curious if you got better result due to a lower body weight.


I am about 165 pounds, so my body weigh is a little bit lower.  Who knows, that could potentially be a factor.

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Offline demografx

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« Reply #14685 on: 21/09/2011 22:41:05 »

That's interesting about your doctor suggesting [Niacin(amide)]!!! He must be very astute.

What type of doctor is he? Did he have any suggestions as to why you should try [it]?



Just wanted to chime in with MY "very interesting" too!
« Last Edit: 21/09/2011 22:45:10 by demografx »

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Offline demografx

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« Reply #14686 on: 21/09/2011 22:42:17 »

helloworld, welcome to the POIS thread of The Naked Science Forum!




Here are some POIS resources which may be helpful to you:

Our new POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion!
http://www.POISCenter.com/forums/index.php
Our 4-year-old POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.

The Learning Channel's (TLC)  feature TV presentation on POIS, featuring our member here at this forum, "Animus". It was aired on May 22, 2011. Here is a link to the file for that TV documentary, "Desperate Measures", which can be downloaded and played. The segment starts at about 12:20..
http://www.fileserve.com/file/cUtJa9R/TITLE01.mp4

Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

The POIS Information Website is home to the famous POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat

Post Orgasmic Illness Syndrome "POIS": Case report

Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt

For more info, check out emi_b's  SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen


Available Upon Request:

1. and 2. POIS Research Studies, 2011

These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggests one possible avenue of treatment.

3. First POIS Research Study, 2002

We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD,PhD, and Dr. Dave Schweitzer, MD.

  
4. Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


5. British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


How to get any or all of the above 5 studies: send me or "daveman" a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and we'll send you back the PDF(s).

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around the recipient's name, i.e., "demografx", or "daveman".


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN OUR HEADS'! "

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum, which has already been referenced in respectable sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 4 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus over 1,300,000 page visits. Not bad for a rare malady!



SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: more than 4 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.





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Offline demografx

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« Reply #14687 on: 21/09/2011 23:12:23 »
POIS RESEARCH FUNDING PLEDGE DATABASE

Guys, this is CRITICAL. Feedback, please!!


What do you think of yesterday's post by me and daveman?
http://www.thenakedscientists.com/forum/index.php?PHPSESSID=f1c91646606fe05966112da4a8b83702&topic=6576.msg367730#msg367730

What do you think of OUR OWN database pledge program? Or would you prefer to use  www.thepoint.com with someone else managing your donations (and tax deductions)?

Let's PLEASE get this out in the open! Post a reply. YOUR input is needed!

YOUR POIS-FREE FUTURE DEPENDS ON THIS, SO PLEASE SPEAK UP. NOW!!!
« Last Edit: 22/09/2011 20:55:18 by demografx »

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Offline daveman

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« Reply #14688 on: 21/09/2011 23:30:26 »
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

Or also compare Niacin with L-Histidine.

http://psychology.wikia.com/wiki/Histamine
Sexual response
Research has shown that histamine is released as part of the human orgasm from mast cells in the genitals. If this response is lacking this may be a sign of histapenia (histamine deficiency). In such cases, a doctor may prescribe diet supplements with folic acid and niacin (which used in conjunction can increase blood histamine levels and histamine release), or L-histidine.



if L-histidine works too (prior, like niacin) then it could point towards low histamine at orgasm as a feature of POIS, if you get my drift.

Excessive autoimmune response also causes histapenia. POIS is known to cause CFS, for the drain on histamine production. So we still can't discount the auto-immune theory.

I think it's already quite clear that there is low histamine production at orgasm. What's more it seems that the components used to produce the histamine to make up for the shortfall, are the ultimate cause of the POIS symptoms. The same components that are used to produce histamines are base components for the eventual balance in neurotransmitters that control sensitivity to the nervous system, that when unbalanced produce myalgia and cognitive disorders.

These base components are supported by the B vitamine complex. If L-histadine worked too, it would just support the same theory wouldn't it?
How does Murphey do it??

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Offline demografx

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« Reply #14689 on: 22/09/2011 00:26:37 »
POIS RESEARCH FUNDING PLEDGE DATABASE

Cross-posted from the SMF forum:
http://poiscenter.com/forums/index.php?topic=213.0


Great idea guys!

I cannot believe that we are having such difficulty getting POIS sufferers to contribute.

If one considers the lost income over a lifetime due to this plague, I would have thought everyone would jump at a chance to get real help.

$100 is such a small sacrifice compared to what other things cost... Just Do It!!!!!!!!!!!

Definitely count me in!!



Thanks, EDS!

« Last Edit: 22/09/2011 00:36:33 by demografx »

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Offline POIS-SUFFERER

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« Reply #14690 on: 22/09/2011 02:43:22 »

Yep was not lying :-) I have clearly demonstrated with myself that it is not placedo, I do not get 90-95% however, more maybe 75%, but I have never up'd the dose to 1500mg, always 1000mg. 500mg per capsule.
I have been using it for many many months, my doctor told me to try it after I described all my
"issues", I spoke of it also months ago, but no one was on the XN/B3 path yet.......

PS.

POIS-SUFFERER, I didn't mean to cast doubt on your initial statement! :)  I just wanted to try it for myself as well. 

Can you tell us how long ago you started taking the Niacinamide?  Have you been taking it every day since then?

Almost everyday for many months now.

I also take some pills to help digestion now and again, as it feels like food is just sitting there and taking a lot of energy out of me try to digest it on my own, these pills seem to help also. (digestive enzymes)

PS.

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« Reply #14691 on: 22/09/2011 05:24:34 »
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

An individual thread has been opened on the SMF forum for a brief discussion of  the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.

Your friendly POIS Forum Moderators,
Demografx
Daveman


we should be sending requests for donations to organizations and private donors who give money.  One or two outside donors could easily fund the minimum amount we need to get started.  I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them.  We should start soliciting these entities ASP.

Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?
I would but I start a clinical rotation on monday and I will barely have a enough time to complete regular activities of daily living. 

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Offline CertainlyPOIS

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« Reply #14692 on: 22/09/2011 16:47:06 »
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

An individual thread has been opened on the SMF forum for a brief discussion of  the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.

Your friendly POIS Forum Moderators,
Demografx
Daveman


we should be sending requests for donations to organizations and private donors who give money.  One or two outside donors could easily fund the minimum amount we need to get started.  I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them.  We should start soliciting these entities ASP.

Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?
I would but I start a clinical rotation on monday and I will barely have a enough time to complete regular activities of daily living. 

am going to see what i can do, do you have a clue where to start. And is anybody else willing to do it.

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Offline demografx

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« Reply #14693 on: 22/09/2011 17:46:09 »
Thanks, CC! Maybe Laurac knows?

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« Reply #14694 on: 22/09/2011 19:03:04 »
Thanks, CC! Maybe Laurac knows?

Seconded.... the help really appreciated, and maybe it's all we would need. One or two that have good hearts and lots of money.

Also, there may be parallel interests out there that have similar medical mechanisms, looking for anybody to have a cause that provides a mechanism to investigate.

We can proceed with our plan, and if that one special donor comes along (s)he can tip the pot.

Who knows.....
How does Murphey do it??

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Offline Vincent M

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« Reply #14695 on: 22/09/2011 23:33:55 »

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.

I'm confused. I thought we had years to raise that money.
« Last Edit: 22/09/2011 23:44:08 by Vincent Marcus »
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline demografx

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« Reply #14696 on: 23/09/2011 00:14:30 »

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.


I'm confused. I thought we had years to raise that money.


We do. If that's how long you want to wait.

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Offline daveman

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« Reply #14697 on: 23/09/2011 01:23:50 »

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.

I'm confused. I thought we had years to raise that money.

We don't loose anything if we don't make the minimum by the time mentioned (other than time). The grants are processed once a year in March. If we don't make it this year it will be a year more.

...and a year more .... and a year more etc.

Personally I don't understand why there's so little interest. (with all respect and gratitude to those who have shown their seriousness already)

We will NOT find a cure without the grant. This means until we do the research we can spend all the time in the world here for nothing.

It might be argued that we have found testosterone, niacin, fenugreek, desensitization, discovered many posibilities, but we still can't go to a doctor and have him take us seriously. We could find the cure, and it won't do us a darn bit of good if we can't convince the doctors that they must treat us with it.

It's like buying a wind-up toy and not winding it up. It's like having a million dollars and living in a shack with a mattress made of money. Do we understand this?

There are many of us that don't believe the auto-immune theory, there have been no other proper studies. We have nothing. Do we understand that?

If we carry on like this, what does it serve us to discuss ANY theory? Do we understand this?

We're talking $50 per month for 6 months. We can take out a small loan, sell a couple of things, work overtime. Or we will just carry on as we have for 4.5 years.

How does Murphey do it??

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« Reply #14698 on: 23/09/2011 05:38:12 »

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.

I'm confused. I thought we had years to raise that money.

We don't loose anything if we don't make the minimum by the time mentioned (other than time). The grants are processed once a year in March. If we don't make it this year it will be a year more.

...and a year more .... and a year more etc.

Personally I don't understand why there's so little interest. (with all respect and gratitude to those who have shown their seriousness already)

We will NOT find a cure without the grant. This means until we do the research we can spend all the time in the world here for nothing.

It might be argued that we have found testosterone, niacin, fenugreek, desensitization, discovered many posibilities, but we still can't go to a doctor and have him take us seriously. We could find the cure, and it won't do us a darn bit of good if we can't convince the doctors that they must treat us with it.

It's like buying a wind-up toy and not winding it up. It's like having a million dollars and living in a shack with a mattress made of money. Do we understand this?

There are many of us that don't believe the auto-immune theory, there have been no other proper studies. We have nothing. Do we understand that?

If we carry on like this, what does it serve us to discuss ANY theory? Do we understand this?

We're talking $50 per month for 6 months. We can take out a small loan, sell a couple of things, work overtime. Or we will just carry on as we have for 4.5 years.


                       
What exactly is the grant going to do to help find a cure?

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« Reply #14699 on: 23/09/2011 12:08:33 »
I had a simple thought. Its obvious really but quite timely given I've also just read on here the latest ideas on raising cash for the NORD grant.

A traditional way to raise funds for a cause might involve a sponsored run or bike ride or some such where you get family and friends to sponsor you to complete such an event. As has been discussed before, POIS has the major drawback of being an awkward thing to talk to family and friends about which makes such sponsored fundraising difficult for us.

However, in reality, all one would need to do is to name the National Organisation of Rare Disorders (NORD) as the organisation one is raising money for with an outline of what they do, helping largely unheard people find relief for little known debilitating illnesses. I think that could be as unquestionably acceptable to people as say raising money for a cancer charity, children's charity or wildlife charity. You could just say you wanted to do a sponsored event and when you heard about NORD it somehow seemed a worthy cause. It should be possible to then ensure that this money is channelled in to the NORD POIS fund when it is received. I don't think that is too deceptive. I'm sure friends and family would donate to a POIS fund anyway if they truly knew our suffering and at the end of the dsay the money is indeed going toward a NORD project.

Bizarrely this has only just occurred to me so I haven't taken action but I wanted to throw it out there in case it inspires anyone who already has fundraising ideas,