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New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 19/03/2012 22:51:13 »
Hi Hoping,
Good question. I'm glad you asked because I suspect you are not the only one who isn't sure about how this works.
The $33500 is the MINIMUM required to start putting research into action. If we don't make the $33500 by 31st March, we do NOT lose the money for the POIS research. The money we have so far donated stays dedicated toward POIS as long as we keep meeting certain minimum targets (which we have already done for now). What we do lose is the opportunity to set the wheels in motion this year. We would have to wait until April/May 2013. Nothing can happen until we get the $33500. Personally, POIS has taken enough of my life. I don't want to wait another year to get this going and I suspect neither does anyone else.
Here is a quote from the NORD website which expands on the targets:
• If the total of donated funds for research on a specific disease is less than $1,000 after two years without significant donations, the fund will be transferred to general research and related activities.
• If the total of donated funds for research on a specific disease is more than $1,000 but less than $5,000 after four years, the money will be transferred to research on related diseases. (e.g., neurological, metabolic, connective tissue diseases, etc.)
• If the total of donated funds for research on a specific disease is more than $5,000 but less than $10,000 after six years, the money will be transferred to research on related diseases.
• If the total of donated funds for research on a specific disease is more than $10,000 but less than $15,000 after eight years, the money will be transferred to research on related diseases.
• If the total of donated funds for research on a specific disease is less than $25,000 in ten years, the money will be transferred to research on related diseases.
For more information you can visit the relevant web page:
http://www.rarediseases.org/medical-professionals/research-grants/policy
Its important to note that, even if someone finds an effective treatment tomorrow, there would still be more research to be done. There's not much danger of the research fund going to waste even if someone has a sudden breakthrough. We'd still need to know why the treatment works. (eg. niacin helps some sufferers but we don't know why). We don't know the underlying cause of POIS and I suspect it could be slightly different, in different groups of people (eg something different could be going on in those who have muscle aches and sweats to those who don't). We don't know how prevalent POIS is. There are so many questions to answer beyond finding an effective treatment/cure (although that of course is what we need as soon as possible). This is the tip of the iceberg. Its an opportunity to pave the way not only for our own future health but for everyone who suffers POIS in future. And to raise the profile of POIS to reach those who haven't found our forums yet and to inform their doctors so they recognise the symptoms. As Porke said recently, we are pioneers. No one's going to do it for us, at least not with any urgency. So we have to push this on ourselves.
Good question. I'm glad you asked because I suspect you are not the only one who isn't sure about how this works.
The $33500 is the MINIMUM required to start putting research into action. If we don't make the $33500 by 31st March, we do NOT lose the money for the POIS research. The money we have so far donated stays dedicated toward POIS as long as we keep meeting certain minimum targets (which we have already done for now). What we do lose is the opportunity to set the wheels in motion this year. We would have to wait until April/May 2013. Nothing can happen until we get the $33500. Personally, POIS has taken enough of my life. I don't want to wait another year to get this going and I suspect neither does anyone else.
Here is a quote from the NORD website which expands on the targets:
• If the total of donated funds for research on a specific disease is less than $1,000 after two years without significant donations, the fund will be transferred to general research and related activities.
• If the total of donated funds for research on a specific disease is more than $1,000 but less than $5,000 after four years, the money will be transferred to research on related diseases. (e.g., neurological, metabolic, connective tissue diseases, etc.)
• If the total of donated funds for research on a specific disease is more than $5,000 but less than $10,000 after six years, the money will be transferred to research on related diseases.
• If the total of donated funds for research on a specific disease is more than $10,000 but less than $15,000 after eight years, the money will be transferred to research on related diseases.
• If the total of donated funds for research on a specific disease is less than $25,000 in ten years, the money will be transferred to research on related diseases.
For more information you can visit the relevant web page:
http://www.rarediseases.org/medical-professionals/research-grants/policy
Its important to note that, even if someone finds an effective treatment tomorrow, there would still be more research to be done. There's not much danger of the research fund going to waste even if someone has a sudden breakthrough. We'd still need to know why the treatment works. (eg. niacin helps some sufferers but we don't know why). We don't know the underlying cause of POIS and I suspect it could be slightly different, in different groups of people (eg something different could be going on in those who have muscle aches and sweats to those who don't). We don't know how prevalent POIS is. There are so many questions to answer beyond finding an effective treatment/cure (although that of course is what we need as soon as possible). This is the tip of the iceberg. Its an opportunity to pave the way not only for our own future health but for everyone who suffers POIS in future. And to raise the profile of POIS to reach those who haven't found our forums yet and to inform their doctors so they recognise the symptoms. As Porke said recently, we are pioneers. No one's going to do it for us, at least not with any urgency. So we have to push this on ourselves.