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Quote from: daveman on 04/01/2012 12:45:24Quote from: badgerstripe on 02/01/2012 13:29:15Hi demografxI sorted through most of the messages on the link to the other fourm and just wanted to clarify something as there was a lot to sort though...When the funding goal is reached will it be directed towards cause or cure or is that still to be decided along the way? Not that the former excludes the latter of course. A precis of the situation would be good to encourage donations.Badgerstripe,Very good question!The whole research process, not only at NORD but throughout the medical industry, goes through several stages. In our case, we are at the very first stage. POIS is new and for the most part little known, so this first phase, the seed phase, is required to establish POIS as something real!Although to us $33,500 sounds like a LOT of money, in terms of research, it's peanuts. Normally it wouldn't be enough to do hardly anything, but thanks to NORD, with their whole infrastructure built to manage rare disorders, they are in a position to get the best for the money, where administration costs and management boards of the highest level are shared between all of the projects at all levels.Research is very complex, and must follow a very strict protocol. Controlling a project must be done within the strictest of ethics and must guarantee, true and real dedication to the actual cause. This seems logical, but very often research projects with lesser ethics and guidelines may try to cut corners and dedicate potentially to parallel anomalies of a condition because it better suits the investigator's needs.So one of the greatest restrictions in working with NORD is that the MAC, a highly experienced board of medical researchers creates the research project and makes the final selection of investigators based on what they see as the best solution to the cause. We cannot specify preferences or even what we feel to be the best approaches. THEY are the experienced ones in doing medical research, and know what is best for the cause.The curricula of the members of the MAC are extraordinary.At the seed level, it will probably be necesary to establish as a minimum "what is POIS". If nothing else is found, and I feel that we will see much more than that, the answer to this question will very valuable to us. In this moment, we don't know what it is. We fight even between ourselves because of this. We can be lead off far too easily into some dead end street because of this.POIS symptoms parallel many other maladies, and at least two times a month we have new members saying, "because of our symptoms maybe we have so-and-so and not POIS". We desperately need the answer to the question, "what is POIS". Without knowing what it is, we won't know the cause, without knowing the cause, we won't know the cure.BUT, there's nothing that says that finding "what it is" won't directly lead us to what causes it and maybe what even cures it.We are the only POIS group in the world raising funds for research. We are a BIG group of POIS sufferers and have more potential for gathering information and knowledge about POIS than anyone else in the world. NO researcher, not one in the world, has as much access to information on POIS as we do. Not one of them has a collective feel for POIS as we do, we just don't know how to put it all in real and researched medical perspective.So what we want to do, is involve our group in the provision of solid information about POIS. We can't sway or influence them, nor do we wish to. None of us would want to take the responsibility of directing a serious investigation down a mistaken path based on only a gut feeling. But what we can do is show them more information than they may have access to, tell them how POIS feels, how and when it shows it's ugly face, basically give them a very good starting base.As we've seen, no POIS researcher knew about niacin before us. Most still don't, and those that do have found out from us. We can't tell them that niacin is the solution, but we can make them aware of it and how it seems to work. they can take it from there.In this way, we hope to cut years off of the investigation.We will be puting together a format for the recompilation of this information. The more thorough and professional it is the better. It would need medical back up, reliable internet sources, perhaps blood test and controls. We will look for a format that is common in the medical industry and open threads on SMF to produce these "reports". A true investigation cannot overlook this kind of information during it's formative phases.So to make a story short. We don't know exactly the form the investigation will take, except that the best approach will be taken. We can inform and provide input, I think this will be of tremendous value in our case to give the investigation the best kickstart possible.Thanks DavemanThat was the kind of update and summary i was looking for and makes me much more comfortable about donating (though it won't be this month, maybe in a month or so!)My understanding of what you say is that *the end goal of the research IS to find a solution to POIS* but there are steps along the way, the first of which is to establish scientifically that the condition really exists. Is that right?I have looked at the NORD website and it seems like a really solid scientific and ethical organisation. I agree that our forum can't steer the investigation but i hope, as you say, that they look closely at our experiences of POIS and remedies to get to solutions more quickly than without our experiences.I am still experimenting with the Niacin and results are mixed, i will post some more of my experimenting when i have a few more Os under it's influence.
Quote from: badgerstripe on 02/01/2012 13:29:15Hi demografxI sorted through most of the messages on the link to the other fourm and just wanted to clarify something as there was a lot to sort though...When the funding goal is reached will it be directed towards cause or cure or is that still to be decided along the way? Not that the former excludes the latter of course. A precis of the situation would be good to encourage donations.Badgerstripe,Very good question!The whole research process, not only at NORD but throughout the medical industry, goes through several stages. In our case, we are at the very first stage. POIS is new and for the most part little known, so this first phase, the seed phase, is required to establish POIS as something real!Although to us $33,500 sounds like a LOT of money, in terms of research, it's peanuts. Normally it wouldn't be enough to do hardly anything, but thanks to NORD, with their whole infrastructure built to manage rare disorders, they are in a position to get the best for the money, where administration costs and management boards of the highest level are shared between all of the projects at all levels.Research is very complex, and must follow a very strict protocol. Controlling a project must be done within the strictest of ethics and must guarantee, true and real dedication to the actual cause. This seems logical, but very often research projects with lesser ethics and guidelines may try to cut corners and dedicate potentially to parallel anomalies of a condition because it better suits the investigator's needs.So one of the greatest restrictions in working with NORD is that the MAC, a highly experienced board of medical researchers creates the research project and makes the final selection of investigators based on what they see as the best solution to the cause. We cannot specify preferences or even what we feel to be the best approaches. THEY are the experienced ones in doing medical research, and know what is best for the cause.The curricula of the members of the MAC are extraordinary.At the seed level, it will probably be necesary to establish as a minimum "what is POIS". If nothing else is found, and I feel that we will see much more than that, the answer to this question will very valuable to us. In this moment, we don't know what it is. We fight even between ourselves because of this. We can be lead off far too easily into some dead end street because of this.POIS symptoms parallel many other maladies, and at least two times a month we have new members saying, "because of our symptoms maybe we have so-and-so and not POIS". We desperately need the answer to the question, "what is POIS". Without knowing what it is, we won't know the cause, without knowing the cause, we won't know the cure.BUT, there's nothing that says that finding "what it is" won't directly lead us to what causes it and maybe what even cures it.We are the only POIS group in the world raising funds for research. We are a BIG group of POIS sufferers and have more potential for gathering information and knowledge about POIS than anyone else in the world. NO researcher, not one in the world, has as much access to information on POIS as we do. Not one of them has a collective feel for POIS as we do, we just don't know how to put it all in real and researched medical perspective.So what we want to do, is involve our group in the provision of solid information about POIS. We can't sway or influence them, nor do we wish to. None of us would want to take the responsibility of directing a serious investigation down a mistaken path based on only a gut feeling. But what we can do is show them more information than they may have access to, tell them how POIS feels, how and when it shows it's ugly face, basically give them a very good starting base.As we've seen, no POIS researcher knew about niacin before us. Most still don't, and those that do have found out from us. We can't tell them that niacin is the solution, but we can make them aware of it and how it seems to work. they can take it from there.In this way, we hope to cut years off of the investigation.We will be puting together a format for the recompilation of this information. The more thorough and professional it is the better. It would need medical back up, reliable internet sources, perhaps blood test and controls. We will look for a format that is common in the medical industry and open threads on SMF to produce these "reports". A true investigation cannot overlook this kind of information during it's formative phases.So to make a story short. We don't know exactly the form the investigation will take, except that the best approach will be taken. We can inform and provide input, I think this will be of tremendous value in our case to give the investigation the best kickstart possible.
Hi demografxI sorted through most of the messages on the link to the other fourm and just wanted to clarify something as there was a lot to sort though...When the funding goal is reached will it be directed towards cause or cure or is that still to be decided along the way? Not that the former excludes the latter of course. A precis of the situation would be good to encourage donations.
Question - Has anyone entered "Advanced POIS" (POIS that no longer goes away at day 4+) and gotten OUT of it? How?!? Constant pois is awful.I have a new theory that my Advanced POIS is caused by miniature NE's every night. I've never found evidence of a NE, but I feel by far the worst in the mornings, indicating that something might be going on while sleeping. I'm going to try to wake up midway through the night and pop some Niacin. as Dave suggested.
Quote from: jferr on 04/01/2012 21:01:46I tend to try and stay active in the gym and such. After activity like basketball I usually feel weak and shake, Jittery.. Feels like it could be hypoglycemia type symptoms but I'm not sure. Does anyone else feel this and what can be done about it?Thanks all.Jon.Nope. In fact, it is the contrary with me. Sports are one of the very few activities that improve my condition. After having played a basketball match i feel SO good! At the beginning of the sport activity i can feel i'm not 100% because of the Pois symptoms, but after a few minutes of getting the blood flowing i feel great. About the alzheimer topic, i'm sorry but nobody in my family has ever had alzheimer or memory issues. In fact, i have a very good memory, specially long-term memory. My family has no history of any mental diseases, or any type on disease in particular. I guess i'm the member with the worst health issues in my family.
I tend to try and stay active in the gym and such. After activity like basketball I usually feel weak and shake, Jittery.. Feels like it could be hypoglycemia type symptoms but I'm not sure. Does anyone else feel this and what can be done about it?Thanks all.Jon.
Hi everyone!Yesterday I bought a bottle of Niacin 500 mg capsules. On the bottle it says NO FLUSH. I am wondering if this also works for you guys? Does the FLUSHING one works better than NO FLUSH one for you?Please let me know.Thank you!
Quote from: Mer on 05/01/2012 09:58:45Hi everyone!Yesterday I bought a bottle of Niacin 500 mg capsules. On the bottle it says NO FLUSH. I am wondering if this also works for you guys? Does the FLUSHING one works better than NO FLUSH one for you?Please let me know.Thank you!Flush works best for me. Also discourages me from taking too much by giving me a nice obvious feedback within about 10 minutes of taking it.
Really nice description of the process DavemanBadgerstripe, I'm glad you are thinking of donating. Don't forget you can make a pledge (promise to donate) now and cough up the cash later. As I understand it, the deadline for getting a NORD research grant this year is March (funds will still go towards a grant next year if we don't make one this year). By making a pledge now, you can make it known how much you can contribute and help us know how close we are to our target. When the pledged amount reaches our target, we all hand over our promised donations and away we go...Of course if you do want to make an actual donation direct to the NORD fund now that's even better. We have had some big pledges. I hope this doesn't stop anyone who can only afford a very small donation from coming forward through feeling their contribution would seem inadequate. Any and every contribution adds to the total and is much appreciated whether its $5 or $10000
Quote from: CCconfucius on 12/12/2011 03:52:45that is my biggest fear. I am almost constantly in pois to. When i heal, i still get a good amount of duh moments or i should have got that faster than that and bad memory, but am funnier and able to hold conversation much better, enough to be the center of it. So i attribute that to the body needing time to fully heal from so long of pois, 16 years is freaking long for repeated damage. i have couple of things that i read will help brain neurons am going to use to bring my brain to 100%when we finally figure this pois out. and i am suspicious of food, because on days i heal i feel much better in the morning than towards the evening. thanks for the response. It's very helpful for me to know that you're going through the same thing. What you say is exactly what I'm talking about - Out of pois I'm also funnier and even feel somewhat comfortable being the center of attention - But my memory....It's still soooo bad! Ccconfucius, can you send me that thing you read, or tell me about it? I'm thinking about going to see a neurologist to get my brain mapped and analyzed for deficiencies. I'm not even sure they do that but I view this as a very serious problem.Per foods affecting you, I've found high fructose corn syrup as a repeat offender on me. I have to make an effort to cut out all those non-natural sodas out of my diet.
that is my biggest fear. I am almost constantly in pois to. When i heal, i still get a good amount of duh moments or i should have got that faster than that and bad memory, but am funnier and able to hold conversation much better, enough to be the center of it. So i attribute that to the body needing time to fully heal from so long of pois, 16 years is freaking long for repeated damage. i have couple of things that i read will help brain neurons am going to use to bring my brain to 100%when we finally figure this pois out. and i am suspicious of food, because on days i heal i feel much better in the morning than towards the evening.
Is anybody able to recommend a Niacin brand in the UK that is not 'flush free' - it seems to be a major selling point and it is proving tricky to find Niacin that will cause the flush. Any help greatly appreciated. Thank you.
About omega 3, I have eaten lot of salmon and seafruit during last days. And I had zero symptoms durin my last Pois episode.
Sorry, the correct word is seafood (eg : oyster, mussel, homarus..). But I suspect salmon to be the main "culprit".This is the second or third time I experiment this. So, it proves anything. Placebo or not, i can't say.I have already try omega3/fish oil supplements without success. B3 ? There is a lot of B3 in salmon compared to other food (15-25mg for 100g) but normal compared to a caps of B3 (20 to 500mg / caps ). Better assimilation?B5 ? B6 ? B1 ? B12 ? D ?Salmon is an excellent source for all these vitamines but once again supplements have stronger concentrations...From all anti-inflammatory(or Anti-Pois at least ) food I've tried salmon is the best. Some nutritionnists think Astaxanthin is a good anti-inflammatory. In fact, it is the pink pigment of salmon, shrimp...
QuoteIt sounds like you experienced this without taking Niacin before the O in this case?I took 20mg I think, not significant. I have never took more than 150mg. But I don't think B3 can block what I call the step 1 of Pois (inflammation). Maybe it helps with step 2 (cognitive). But if step 1 is reduced or avoided, there is no step2. When I have no flu-like symptoms during day 0, I know my Pois is finished.Anyway Mellirova's topic proves B3 is the best supplement according to the Pois community. This is the only one who deserves to be reported to dr Waldinger for the moment.Thank you Kurotsis for details for krill oil tip. I will have a look on this. I have bought a lot of useless supplements but the effect of salmon is something to consider for me.I can give you a tip for vitamin C. A strategy I have learn to maximize its effect is to take 200mg each 120 min instead of only 1 gr. The objective is to keep a good stable level in blood. The other point is to keep a low blood sugar (avoiding insuline spikes). Anyway I have to say vitamin C never helped my Pois.
It sounds like you experienced this without taking Niacin before the O in this case?