Anyone have details on sharktank.org?

[mesler]

I'm reposting this in this forum, because I initially posted in the newly diagnosed section (where I made my first post.)

I've signed up for the group and am awaiting authorization, as I'm curious to see what types of things they have been discussing on their mailing list since 1998.

Apparently some of the folks there have been publishing papers on some new ways of treating CF which look almost too good to be true. Today, on their site's blog, was a post from one of the people who have been published (Childers), stating that something called BITC (benzyl isothiocyanat) taken transdermaly seems to be working long term (as opposed to the ingested version which worked for a time then stopped.) BITC is apparently something that is considered a supplement.

Seems almost too good to be true, but there are lots of signs that it is not. For example, published journal articles, an Internet presence for the group since 1998.

I'm very skeptical and cautious about many things. However, for this, I'm pretty hopeful. Anyone have any details?

 

[mesler]

I'm reposting this in this forum, because I initially posted in the newly diagnosed section (where I made my first post.)

I've signed up for the group and am awaiting authorization, as I'm curious to see what types of things they have been discussing on their mailing list since 1998.

Apparently some of the folks there have been publishing papers on some new ways of treating CF which look almost too good to be true. Today, on their site's blog, was a post from one of the people who have been published (Childers), stating that something called BITC (benzyl isothiocyanat) taken transdermaly seems to be working long term (as opposed to the ingested version which worked for a time then stopped.) BITC is apparently something that is considered a supplement.

Seems almost too good to be true, but there are lots of signs that it is not. For example, published journal articles, an Internet presence for the group since 1998.

I'm very skeptical and cautious about many things. However, for this, I'm pretty hopeful. Anyone have any details?

 

[mesler]

I'm reposting this in this forum, because I initially posted in the newly diagnosed section (where I made my first post.)

I've signed up for the group and am awaiting authorization, as I'm curious to see what types of things they have been discussing on their mailing list since 1998.

Apparently some of the folks there have been publishing papers on some new ways of treating CF which look almost too good to be true. Today, on their site's blog, was a post from one of the people who have been published (Childers), stating that something called BITC (benzyl isothiocyanat) taken transdermaly seems to be working long term (as opposed to the ingested version which worked for a time then stopped.) BITC is apparently something that is considered a supplement.

Seems almost too good to be true, but there are lots of signs that it is not. For example, published journal articles, an Internet presence for the group since 1998.

I'm very skeptical and cautious about many things. However, for this, I'm pretty hopeful. Anyone have any details?

 

[mesler]

I'm reposting this in this forum, because I initially posted in the newly diagnosed section (where I made my first post.)

I've signed up for the group and am awaiting authorization, as I'm curious to see what types of things they have been discussing on their mailing list since 1998.

Apparently some of the folks there have been publishing papers on some new ways of treating CF which look almost too good to be true. Today, on their site's blog, was a post from one of the people who have been published (Childers), stating that something called BITC (benzyl isothiocyanat) taken transdermaly seems to be working long term (as opposed to the ingested version which worked for a time then stopped.) BITC is apparently something that is considered a supplement.

Seems almost too good to be true, but there are lots of signs that it is not. For example, published journal articles, an Internet presence for the group since 1998.

I'm very skeptical and cautious about many things. However, for this, I'm pretty hopeful. Anyone have any details?

 

[mesler]

I'm reposting this in this forum, because I initially posted in the newly diagnosed section (where I made my first post.)
<br />
<br />I've signed up for the group and am awaiting authorization, as I'm curious to see what types of things they have been discussing on their mailing list since 1998.
<br />
<br />Apparently some of the folks there have been publishing papers on some new ways of treating CF which look almost too good to be true. Today, on their site's blog, was a post from one of the people who have been published (Childers), stating that something called BITC (benzyl isothiocyanat) taken transdermaly seems to be working long term (as opposed to the ingested version which worked for a time then stopped.) BITC is apparently something that is considered a supplement.
<br />
<br />Seems almost too good to be true, but there are lots of signs that it is not. For example, published journal articles, an Internet presence for the group since 1998.
<br />
<br />I'm very skeptical and cautious about many things. However, for this, I'm pretty hopeful. Anyone have any details?

 

[mesler]

Either the whole experiment they are running is a scam, or people don't understand the gravity of it.

Here was what Melanie Childers said in her blog, regarding the hypothesis they have come up with:

<div class="FTQUOTE"><begin quote>

So, what we're trying to do is get a good dose; at a level high enough to get enough BITC into the bloodstream, to cause an induction of the MRP protein in the lungs, liver, pancreas of people with cystic fibrosis. It seems pretty simple, but we'll see what we're actually up against once the tests come back from the latest round of BITC in our carrier. At 10mg, if they don't move those fatty acids, we have to double to the dose. Of course, we're REALLY far away, even doubling the dose, from the LD50, and that's a good thing.
</end quote></div>

And the claim is currently that, a young man volunteering to do the tests on himself has experienced 'miraculous' effects over a 3 month period. This doesn't mean everyone will, but it's enough reason to get excited.

I've been trying to learn about Melanie Childers, and the organization as a whole. She has published at least one paper that has been cited by experts in the field (including an MD from one of the Children's hospitals who specialises in CF care.) Other than that, I don't know anything that wasn't on their site. I'm currently waiting to be approved to read their newsgroup archives, which date back to 1998. I'm inclined to be excited from what I'm seeing, but perhaps someone else here knows more about it and can elaborate on sharktank, their past, and their status?

 

[mesler]

Either the whole experiment they are running is a scam, or people don't understand the gravity of it.

Here was what Melanie Childers said in her blog, regarding the hypothesis they have come up with:

<div class="FTQUOTE"><begin quote>

So, what we're trying to do is get a good dose; at a level high enough to get enough BITC into the bloodstream, to cause an induction of the MRP protein in the lungs, liver, pancreas of people with cystic fibrosis. It seems pretty simple, but we'll see what we're actually up against once the tests come back from the latest round of BITC in our carrier. At 10mg, if they don't move those fatty acids, we have to double to the dose. Of course, we're REALLY far away, even doubling the dose, from the LD50, and that's a good thing.
</end quote></div>

And the claim is currently that, a young man volunteering to do the tests on himself has experienced 'miraculous' effects over a 3 month period. This doesn't mean everyone will, but it's enough reason to get excited.

I've been trying to learn about Melanie Childers, and the organization as a whole. She has published at least one paper that has been cited by experts in the field (including an MD from one of the Children's hospitals who specialises in CF care.) Other than that, I don't know anything that wasn't on their site. I'm currently waiting to be approved to read their newsgroup archives, which date back to 1998. I'm inclined to be excited from what I'm seeing, but perhaps someone else here knows more about it and can elaborate on sharktank, their past, and their status?

 

[mesler]

Either the whole experiment they are running is a scam, or people don't understand the gravity of it.

Here was what Melanie Childers said in her blog, regarding the hypothesis they have come up with:

<div class="FTQUOTE"><begin quote>

So, what we're trying to do is get a good dose; at a level high enough to get enough BITC into the bloodstream, to cause an induction of the MRP protein in the lungs, liver, pancreas of people with cystic fibrosis. It seems pretty simple, but we'll see what we're actually up against once the tests come back from the latest round of BITC in our carrier. At 10mg, if they don't move those fatty acids, we have to double to the dose. Of course, we're REALLY far away, even doubling the dose, from the LD50, and that's a good thing.
</end quote></div>

And the claim is currently that, a young man volunteering to do the tests on himself has experienced 'miraculous' effects over a 3 month period. This doesn't mean everyone will, but it's enough reason to get excited.

I've been trying to learn about Melanie Childers, and the organization as a whole. She has published at least one paper that has been cited by experts in the field (including an MD from one of the Children's hospitals who specialises in CF care.) Other than that, I don't know anything that wasn't on their site. I'm currently waiting to be approved to read their newsgroup archives, which date back to 1998. I'm inclined to be excited from what I'm seeing, but perhaps someone else here knows more about it and can elaborate on sharktank, their past, and their status?

 

[mesler]

Either the whole experiment they are running is a scam, or people don't understand the gravity of it.

Here was what Melanie Childers said in her blog, regarding the hypothesis they have come up with:

<div class="FTQUOTE"><begin quote>

So, what we're trying to do is get a good dose; at a level high enough to get enough BITC into the bloodstream, to cause an induction of the MRP protein in the lungs, liver, pancreas of people with cystic fibrosis. It seems pretty simple, but we'll see what we're actually up against once the tests come back from the latest round of BITC in our carrier. At 10mg, if they don't move those fatty acids, we have to double to the dose. Of course, we're REALLY far away, even doubling the dose, from the LD50, and that's a good thing.
</end quote>

And the claim is currently that, a young man volunteering to do the tests on himself has experienced 'miraculous' effects over a 3 month period. This doesn't mean everyone will, but it's enough reason to get excited.

I've been trying to learn about Melanie Childers, and the organization as a whole. She has published at least one paper that has been cited by experts in the field (including an MD from one of the Children's hospitals who specialises in CF care.) Other than that, I don't know anything that wasn't on their site. I'm currently waiting to be approved to read their newsgroup archives, which date back to 1998. I'm inclined to be excited from what I'm seeing, but perhaps someone else here knows more about it and can elaborate on sharktank, their past, and their status?

 

[mesler]

Either the whole experiment they are running is a scam, or people don't understand the gravity of it.
<br />
<br />Here was what Melanie Childers said in her blog, regarding the hypothesis they have come up with:
<br />
<br /><div class="FTQUOTE"><begin quote>
<br />
<br />So, what we're trying to do is get a good dose; at a level high enough to get enough BITC into the bloodstream, to cause an induction of the MRP protein in the lungs, liver, pancreas of people with cystic fibrosis. It seems pretty simple, but we'll see what we're actually up against once the tests come back from the latest round of BITC in our carrier. At 10mg, if they don't move those fatty acids, we have to double to the dose. Of course, we're REALLY far away, even doubling the dose, from the LD50, and that's a good thing.
<br /></end quote>
<br />
<br />And the claim is currently that, a young man volunteering to do the tests on himself has experienced 'miraculous' effects over a 3 month period. This doesn't mean everyone will, but it's enough reason to get excited.
<br />
<br />I've been trying to learn about Melanie Childers, and the organization as a whole. She has published at least one paper that has been cited by experts in the field (including an MD from one of the Children's hospitals who specialises in CF care.) Other than that, I don't know anything that wasn't on their site. I'm currently waiting to be approved to read their newsgroup archives, which date back to 1998. I'm inclined to be excited from what I'm seeing, but perhaps someone else here knows more about it and can elaborate on sharktank, their past, and their status?

 

[moxie1]

Hi,

I belong to sharktank. It is a group of individuals who either have cystic fibrosis, have a relative with it, or has lost someone due to cf.

Melanie Childers had a son who died of cf and she has made it her mission to eradicate this disease.

Anyway, those on the group have done their own research on cf and let me tell you, they know what they are talking about.

I've only been a member for a few years, so I'm not a huge wealth of information about them, but I do know that anytime a new research article about cf comes out, it is posted to the group to be analyzed by Melanie and the others.

 

[moxie1]

Hi,

I belong to sharktank. It is a group of individuals who either have cystic fibrosis, have a relative with it, or has lost someone due to cf.

Melanie Childers had a son who died of cf and she has made it her mission to eradicate this disease.

Anyway, those on the group have done their own research on cf and let me tell you, they know what they are talking about.

I've only been a member for a few years, so I'm not a huge wealth of information about them, but I do know that anytime a new research article about cf comes out, it is posted to the group to be analyzed by Melanie and the others.

 

[moxie1]

Hi,

I belong to sharktank. It is a group of individuals who either have cystic fibrosis, have a relative with it, or has lost someone due to cf.

Melanie Childers had a son who died of cf and she has made it her mission to eradicate this disease.

Anyway, those on the group have done their own research on cf and let me tell you, they know what they are talking about.

I've only been a member for a few years, so I'm not a huge wealth of information about them, but I do know that anytime a new research article about cf comes out, it is posted to the group to be analyzed by Melanie and the others.

 

[moxie1]

Hi,

I belong to sharktank. It is a group of individuals who either have cystic fibrosis, have a relative with it, or has lost someone due to cf.

Melanie Childers had a son who died of cf and she has made it her mission to eradicate this disease.

Anyway, those on the group have done their own research on cf and let me tell you, they know what they are talking about.

I've only been a member for a few years, so I'm not a huge wealth of information about them, but I do know that anytime a new research article about cf comes out, it is posted to the group to be analyzed by Melanie and the others.

 

[moxie1]

Hi,
<br />
<br />I belong to sharktank. It is a group of individuals who either have cystic fibrosis, have a relative with it, or has lost someone due to cf.
<br />
<br />Melanie Childers had a son who died of cf and she has made it her mission to eradicate this disease.
<br />
<br />Anyway, those on the group have done their own research on cf and let me tell you, they know what they are talking about.
<br />
<br />I've only been a member for a few years, so I'm not a huge wealth of information about them, but I do know that anytime a new research article about cf comes out, it is posted to the group to be analyzed by Melanie and the others.

 

[mesler]

Thanks Moxie

I'm very excited. When I was reading about it, it seemed so romantic and wonderful that I had to question it's legitimacy. I'm still somewhat guarded about it, but time will tell. I get teary-eyed just thinking about it.

Before I read anything about Sharktank, I was kinda looking at the situation like Melanie is. Basically, our child is sick, what do we need to do to resolve it? Research is needed. Ok, what options do we have there? We can either fund the research directly, fund it through a 3rd party (CFF), or we can contribute directly. My wife (currently home with our daughter) is very interested in the body already, being a massage therapist, and so I'm trying to convince her that she can, and should, learn about this disease and to contribute to the available pool of knowledge. We are going next week to visit a researcher at the LSU medical center, to take a tour and let her see what the medical research word entails, but I'm also very interested in what the sharktank folks are doing.

Thank you for your response.

 

[mesler]

Thanks Moxie

I'm very excited. When I was reading about it, it seemed so romantic and wonderful that I had to question it's legitimacy. I'm still somewhat guarded about it, but time will tell. I get teary-eyed just thinking about it.

Before I read anything about Sharktank, I was kinda looking at the situation like Melanie is. Basically, our child is sick, what do we need to do to resolve it? Research is needed. Ok, what options do we have there? We can either fund the research directly, fund it through a 3rd party (CFF), or we can contribute directly. My wife (currently home with our daughter) is very interested in the body already, being a massage therapist, and so I'm trying to convince her that she can, and should, learn about this disease and to contribute to the available pool of knowledge. We are going next week to visit a researcher at the LSU medical center, to take a tour and let her see what the medical research word entails, but I'm also very interested in what the sharktank folks are doing.

Thank you for your response.

 

[mesler]

Thanks Moxie

I'm very excited. When I was reading about it, it seemed so romantic and wonderful that I had to question it's legitimacy. I'm still somewhat guarded about it, but time will tell. I get teary-eyed just thinking about it.

Before I read anything about Sharktank, I was kinda looking at the situation like Melanie is. Basically, our child is sick, what do we need to do to resolve it? Research is needed. Ok, what options do we have there? We can either fund the research directly, fund it through a 3rd party (CFF), or we can contribute directly. My wife (currently home with our daughter) is very interested in the body already, being a massage therapist, and so I'm trying to convince her that she can, and should, learn about this disease and to contribute to the available pool of knowledge. We are going next week to visit a researcher at the LSU medical center, to take a tour and let her see what the medical research word entails, but I'm also very interested in what the sharktank folks are doing.

Thank you for your response.

 

[mesler]

Thanks Moxie

I'm very excited. When I was reading about it, it seemed so romantic and wonderful that I had to question it's legitimacy. I'm still somewhat guarded about it, but time will tell. I get teary-eyed just thinking about it.

Before I read anything about Sharktank, I was kinda looking at the situation like Melanie is. Basically, our child is sick, what do we need to do to resolve it? Research is needed. Ok, what options do we have there? We can either fund the research directly, fund it through a 3rd party (CFF), or we can contribute directly. My wife (currently home with our daughter) is very interested in the body already, being a massage therapist, and so I'm trying to convince her that she can, and should, learn about this disease and to contribute to the available pool of knowledge. We are going next week to visit a researcher at the LSU medical center, to take a tour and let her see what the medical research word entails, but I'm also very interested in what the sharktank folks are doing.

Thank you for your response.

 

[mesler]

Thanks Moxie
<br />
<br />I'm very excited. When I was reading about it, it seemed so romantic and wonderful that I had to question it's legitimacy. I'm still somewhat guarded about it, but time will tell. I get teary-eyed just thinking about it.
<br />
<br />Before I read anything about Sharktank, I was kinda looking at the situation like Melanie is. Basically, our child is sick, what do we need to do to resolve it? Research is needed. Ok, what options do we have there? We can either fund the research directly, fund it through a 3rd party (CFF), or we can contribute directly. My wife (currently home with our daughter) is very interested in the body already, being a massage therapist, and so I'm trying to convince her that she can, and should, learn about this disease and to contribute to the available pool of knowledge. We are going next week to visit a researcher at the LSU medical center, to take a tour and let her see what the medical research word entails, but I'm also very interested in what the sharktank folks are doing.
<br />
<br />Thank you for your response.