Hacker News Reader

Comment by jswinghammer | Hacker News Reader

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.

View on HN

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.

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/

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.

Thank you for your reply.

I am guilty as charged of thinking that the whole thing is rather stupid. When I discovered that addressing excess acidity was effective in helping me need less medication, I thought this was some major revelation. It turns out it is rather well established in the CF community that CF leads to very extreme excess acidity. Yet it goes largely untreated, in spite of acidosis being a known serious medical problem. Additionally, the salt issue is so well established as an issue for CF that a sweat chloride test is the single most common initial test for CF, yet nothing is really done to address that issue. Both seem very obvious for anyone in the know yet both go largely ignored in treatment modalities.

As for victim card, I've really had the crap kicked out of me for trying to share info. I have no doubt that at this point that negatively impacts the way I come across when discussing the issue. I don't have some magic wand for how to make that go away. I think the ugliest thing said to me publicly was that someone implied that my son was the product of an incestuous relationship. Moderators routinely side with my attackers and act like I have some unreasonable expectation for thinking I should be able to participate in conversation on the same footing as other members where such attacks would not be tolerated. I have left lists over such incidents.

Researchers and doctors have expressed no interest in what I am doing. My doctor's response to my dramatic improvements in health was to schedule me fewer and fewer appointments and express zero curiosity as to how I was doing so much better. For the most part, people on CF lists are also not really interested. Their primary response is to be very defensive and default to accusations that I am a charlatan and a snake oil salesman. I find this personally very difficult to comprehend or deal with. I have CF. Why on earth would make any of this up? People are suffering and dying and begging for a cure. One would think that my testimony about my experiences would be warmly welcomed rather than viciously attacked. I am both baffled and hurt by this consistent response over the past five years.

I didn't get myself well in order to impress anyone. I am willing to help if I am able, but I am not interested in martyring myself. I got well to get my life back, not to find new ways to be tormented by life. If getting my life back is all it accomplishes, that is enough in my book. (I have heard similar stories of health improvement due to diet/lifestyle changes about other people. I am apparently not the only one who made significant changes to diet and lifestyle and saw major improvements. Most people apparently just go on living quietly rather than fight with other people about it, an approach I continue to work on in spite of my big mouth.) The degree to which the CF community plays the victim card and expects other people to pay for their survival and very high on-going medical expenses is something that looks to me like a big part of the problem, both in terms of mental models and logistically.

As for the "excess mucus" theory, I do not buy it. I have seen more than one public discussion about women with CF suffering vaginal dryness, in some cases so severe it ruined their sex life. I see no reason why one set of mucus membranes in the body would work the opposite of the rest for a genetic disorder that impacts all cells in the same manner. One study I ran across indicated that it was not excess mucus clogging up the lungs of people with CF, it was phlegm -- ie infection -- and that, in fact, people with CF produce too little mucus, not too much. This fits with my experience that when my sinuses are too dry, that's when I have more lung issues and sinus issues. I have seen women with CF complain of "goopiness" (vaginally). I see no reason to believe that isn't also a form of drainage from infection, similar to phlegm build up in the lungs. It seems to me if it were mucus, then women with CF shouldn't have any of the difficulties with sex which they report.

I am not claiming that lack of reports of egregious problems is proof positive that it works, much less that it would work equally well for all people with CF. I am claiming that people who have tried some of my suggestions and also reported back have indicated surprisingly good results, often in quite a short period of time (for example, one parent whose teenaged child was supposed to be listed for lung transplant put them on supplements I suggested and in a very short period of time -- something like two weeks -- saw such dramatic improvement in lung function that listing for transplant stopped being a consideration). I am also indicating that while people in the CF community are very critical, often in a very ugly fashion, none of the criticism I have received so far has come from someone who tried my ideas and got sick from it. It seems to come from people who reject all of it out of hand as "too good to be true" without further investigation.

Peace.

It sounds to me like your physician is a poor one. One of the first rules with CF is to embrace what seems to work well for the patient, and try to understand it. I'd suggest you attempt to find a new one, or at least contact others in better clinics if you wish to share your story with someone who might be more interested to listen. I've had a lot of success at the CF clinics at Johns Hopkins, VCU, and Stanford.

I actually haven't seen a physician in roughly five years. So that doesn't happen to be a concern for me. However most people I meet, you included, are simply dismissive. I appreciate that you haven't been ugly about it but your response -- that I have an attitude problem of some sort, that my views are filled with logical fallacies and so on -- is the typical response of the majority of people in the CF community whether they are patients, family members or professionals. So I really see no reason to believe that getting a different doctor would make some sudden, radical difference in that regard.

Folks who are genuinely interested in my experiences and my understanding of the problem space are few and far between. I leave the site up for the benefit of the small number of people who are interested in the information. These days, I spend a great deal less time posting on health lists than I used to. It accomplishes very little and gets me loads of very negative attention. So I see little point in pursuing such activities. Having gotten myself basically well, my main focus is on other things these days.

Take care.

I'm a skeptic, as anyone who has CF should be. As I said, I am happy for you, but you need to be very careful when making claims as you do since lives are at stake. If you are going to post information that CF patients might act upon it is your responsibility to put it into appropriate context, try to disprove it yourself, and be open to alternative theories as to why your approach worked other than that you have cured your CF through consuming sea salt and tonic water.

The history of CF is full of stories like yours where people seem to be onto something only to find out that it was circumstantial or not scalable to the rest of the CF population. This is still a very mysterious disease. My point is that a large part of the reason you might not be taken seriously is due to your tone, your apparent skepticism of western medicine, and your lack of expertise on the fields you are making claims about.

If you do not want to try to use the information you have to help others, so be it. But if you do, posting on health lists and arguing over the internet is not the way to do it. The way to do it is to educate yourself enough that you can hold a real discussion with medical researchers, and find medical researchers (or become one yourself) who would be willing to test your claims empirically. You've positioned yourself as a champion against the establishment, and this is not the way to actually get anything meaningful accomplished. Posting anecdotal evidence, contradictory claims, and lots of random speculations about the effects of various foods and dietary changes without accurate measurement and study does little good towards this end, if the goal is to help the wider CF community, despite your intentions to be helpful.

I would be very concerned if you were not skeptical. I have no issue with skepticism. My experience has been that individuals new to the CF community or individuals who have long pursued alternative approaches are the most able to understand and act on the information. I have come to believe a more information dense delivery mechanism would be helpful. I don't personally see any reason to believe that normal research channels are the way to go with this. I like being helpful. I just don't feel obligated to cram my views down anyone's throat and most members of the CF community have made it abundantly clear that they have no interest in what I am doing. I see no reason to either fight with people or martyr myself. The information is there if someone is interested and has already helped some people. So I see no reason to defer to your opinion that sharing it online is not the way to go.

Take care.

Reply on news.ycombinator.com