5 ms·

I found this to be pretty interesting. I know someone with a little girl who has CF. The whole situation is just sad all around. There is a long history of sel

I found this to be pretty interesting. I know someone with a little girl who has CF. The whole situation is just sad all around. There is a long history of selling dietary advice in book and newsletter form. Hard to say without knowing the details but if you feel like you have something to share it's worth seeing if anyone cares to find out about it. I'd be willing to try just about anything if one of my daughters had CF. Price isn't really a factor to people in that frame of mind. A blog, forum, and one on one advice site for this seems like it could work assuming your results are real and repeatable (not saying they are or aren't just saying really). Seems like that'd be worth a monthly subscription.

Mz 15y ago
My estimate is that the US currently spends roughly $3 Billion (with a B) on medical care for a mere 30,000 people with CF. This is mostly covered by insurance, state aid, federal aid, and charities. The families are typically under enormous financial stress and can ill afford to spend money on some risky unproven source of advice, which is the category my experiences fall into. I think it's very repeatable and people who have chosen to act on even limited bits of my advice have reported very good results. I have so far not had anyone tell me "I tried that and it so failed". Given the degree to which I am routinely vilified by the CF community (for advocating "dangerous" things like eating better), I strongly suspect if there were any significant failures of my approach, I would never hear the end of it. The fundamental problem appears to be that people define CF in the following manner (quote from a doctor): "People like you don't get well." Since I got well, I must be lying. I can't really have CF. I have no plans to charge money for information. I have no idea how it would be monetized. I generally assume I am better off pursuing other things for money and keeping this fairly low on the radar. Attempts to shout it from the rooftops has only served to convince people in the CF that I am a liar, a charlatan and a snake oil salesman -- that I suffer from Munchhausen Syndrome and am doing this out of a sick need for attention rather than a sincere desire to help other people like me. Anyway, there is a link to my site in my profile. It's the one with the word "health" in the URL. :-) I have no idea how that $3 billion could be tapped into to support a saner, more humane and cheaper treatment approach. God knows I would be on it in a heartbeat if I could figure that out as I have a pile of debts from getting myself well. Peace.
- gfodor 15y ago
  While I appreciate the sentiment, I have to take issue with your comments here. I have cystic fibrosis, and have been diagnosed since I was 3. As you surely know, this disease is not the same for everyone, since it is caused by a wide array of genetic defects that manifest themselves differently in each patient. Beyond this, the major health effects of CF are not directly due to these genetic defects. The main symptom of CF is the build up of thick mucous in the lungs, however the battle against CF is a battle against infection, not against mucous. It's only recently that the role of the immune system has started to be understood. Needless to say, CF is a manifestation of a large, complex system of things, all of which vary from patient to patient, and change dramatically as the patient goes through life. It's taken decades to unravel the puzzle thusfar, with many roads leading to dead ends. As you surely know, CF was a disease that was supposed to be cured 10-15 years ago. But, it's proven difficult. There are reasons for hope. The truth is that your particular struggle with CF may have made it possible for you to get well through certain dietary changes, but the fact is this is a complex, ever-changing disease and dietary changes, while helpful, certainly are insufficient for most CF sufferers to feel well. Decades of medical research have brought about drugs that, after years of study, have proven reliability in increasing FEV1. (I was one of the patients in the Phase II trial of Pulmozyme many years ago.) These have been a godsend for myself and other CF sufferers. Your blog seems to make many claims unsupported by medical research, and has a long series of hypotheses and theories about how certain things affect yourself and your child. There are a few things that I see in your writing that I suggest you reflect on as part of the reason you are having a time being accepted by the CF community: - You seem to have an attitude that your solution is so simple, "boring", and hard work, that you've managed to figure out the solution when all these foolish doctors and researchers have had their heads up their asses. It's not easy, and they haven't. This attitude manages to tell CF sufferers that its their laziness keeping them sick. I can assure you all of us work hard and would gladly do what we need to get well if we knew it was possible. - You play the victim card, alienating anyone who hasn't heard of your blog before. - You make logical fallacies. You claim that nobody telling you your technique failed is proof-positive that it probably works. You claim that people tell you that they have had success as proof as well. These are classic fallacies in medical research, and is part of the reason medical research is so hard to do correctly. In order to make a positive impact on the CF community, I'd encourage you to attempt to reach out to researchers and collaborate with them in a constructive fashion. I'd suggest you do the research on what has been learned so far about CF. I'd suggest you educate yourself on biology, genetics, immunology, and basic medicine as much as you can. I hope you can channel your energy into organizing information in an honest, informative manner without having it be tarnished by the various things I mentioned above. Good luck, and I hope you and your son continue to see good health. Edit: for those interested, I'd encourage you to check out the CF foundation's drug pipeline: http://www.cff.org/research/DrugDevelopmentPipeline/ http://www.cff.org/research/DrugDevelopmentPipeline/ The CF foundation has done some good and some not so good things in the past, but this page at least is accurate and up-to-date. VX770 right now stands to be the most promising path to alleviating the symptoms of CF sufferers in a large way.

Mz 15y ago

My estimate is that the US currently spends roughly $3 Billion (with a B) on medical care for a mere 30,000 people with CF. This is mostly covered by insurance, state aid, federal aid, and charities. The families are typically under enormous financial stress and can ill afford to spend money on some risky unproven source of advice, which is the category my experiences fall into. I think it's very repeatable and people who have chosen to act on even limited bits of my advice have reported very good results. I have so far not had anyone tell me "I tried that and it so failed". Given the degree to which I am routinely vilified by the CF community (for advocating "dangerous" things like eating better), I strongly suspect if there were any significant failures of my approach, I would never hear the end of it. The fundamental problem appears to be that people define CF in the following manner (quote from a doctor): "People like you don't get well." Since I got well, I must be lying. I can't really have CF. I have no plans to charge money for information. I have no idea how it would be monetized. I generally assume I am better off pursuing other things for money and keeping this fairly low on the radar. Attempts to shout it from the rooftops has only served to convince people in the CF that I am a liar, a charlatan and a snake oil salesman -- that I suffer from Munchhausen Syndrome and am doing this out of a sick need for attention rather than a sincere desire to help other people like me. Anyway, there is a link to my site in my profile. It's the one with the word "health" in the URL. :-) I have no idea how that $3 billion could be tapped into to support a saner, more humane and cheaper treatment approach. God knows I would be on it in a heartbeat if I could figure that out as I have a pile of debts from getting myself well. Peace.

gfodor 15y ago
While I appreciate the sentiment, I have to take issue with your comments here. I have cystic fibrosis, and have been diagnosed since I was 3. As you surely know, this disease is not the same for everyone, since it is caused by a wide array of genetic defects that manifest themselves differently in each patient. Beyond this, the major health effects of CF are not directly due to these genetic defects. The main symptom of CF is the build up of thick mucous in the lungs, however the battle against CF is a battle against infection, not against mucous. It's only recently that the role of the immune system has started to be understood. Needless to say, CF is a manifestation of a large, complex system of things, all of which vary from patient to patient, and change dramatically as the patient goes through life. It's taken decades to unravel the puzzle thusfar, with many roads leading to dead ends. As you surely know, CF was a disease that was supposed to be cured 10-15 years ago. But, it's proven difficult. There are reasons for hope. The truth is that your particular struggle with CF may have made it possible for you to get well through certain dietary changes, but the fact is this is a complex, ever-changing disease and dietary changes, while helpful, certainly are insufficient for most CF sufferers to feel well. Decades of medical research have brought about drugs that, after years of study, have proven reliability in increasing FEV1. (I was one of the patients in the Phase II trial of Pulmozyme many years ago.) These have been a godsend for myself and other CF sufferers. Your blog seems to make many claims unsupported by medical research, and has a long series of hypotheses and theories about how certain things affect yourself and your child. There are a few things that I see in your writing that I suggest you reflect on as part of the reason you are having a time being accepted by the CF community: - You seem to have an attitude that your solution is so simple, "boring", and hard work, that you've managed to figure out the solution when all these foolish doctors and researchers have had their heads up their asses. It's not easy, and they haven't. This attitude manages to tell CF sufferers that its their laziness keeping them sick. I can assure you all of us work hard and would gladly do what we need to get well if we knew it was possible. - You play the victim card, alienating anyone who hasn't heard of your blog before. - You make logical fallacies. You claim that nobody telling you your technique failed is proof-positive that it probably works. You claim that people tell you that they have had success as proof as well. These are classic fallacies in medical research, and is part of the reason medical research is so hard to do correctly. In order to make a positive impact on the CF community, I'd encourage you to attempt to reach out to researchers and collaborate with them in a constructive fashion. I'd suggest you do the research on what has been learned so far about CF. I'd suggest you educate yourself on biology, genetics, immunology, and basic medicine as much as you can. I hope you can channel your energy into organizing information in an honest, informative manner without having it be tarnished by the various things I mentioned above. Good luck, and I hope you and your son continue to see good health. Edit: for those interested, I'd encourage you to check out the CF foundation's drug pipeline: http://www.cff.org/research/DrugDevelopmentPipeline/ http://www.cff.org/research/DrugDevelopmentPipeline/ The CF foundation has done some good and some not so good things in the past, but this page at least is accurate and up-to-date. VX770 right now stands to be the most promising path to alleviating the symptoms of CF sufferers in a large way.