[ShannonAlther]

I don't believe I've accused you of anything except being wrong, Mz, and furthermore your blog notes that you have a rare CFTR mutation, a milder form of the disease (I only briefly scanned so I may be wrong). That's awesome! Your quality of life is probably really high compared to the average CF patient!

But the only intervention that's lifestyle-y that I know of is chest physiotherapy. I'm glad that the person you found now feels better, but the data does not support your claim.

[Mz]

I claim I am doing something groundbreaking. Your claim amounts to refuting the idea that anything new can be done, that the outcomes we currently have is as good as it gets.

Despite various publications of results where hand washing reduced mortality to below 1%, Semmelweis's observations conflicted with the established scientific and medical opinions of the time and his ideas were rejected by the medical community. Semmelweis could offer no acceptable scientific explanation for his findings, and some doctors were offended at the suggestion that they should wash their hands. Semmelweis's practice earned widespread acceptance only years after his death, when Louis Pasteur confirmed the germ theory and Joseph Lister, acting on the French microbiologist's research, practiced and operated, using hygienic methods, with great success. In 1865, Semmelweis was committed to an asylum, where he died at age 47 of pyaemia, after being beaten by the guards, only 14 days after he was committed.

https://en.wikipedia.org/wiki/Ignaz_Semmelweis

Hand washing. What a silly idea. Let's just put this guy in a loony bin for how completely insane he is.

Edit: Also, the person found me. I didn't find them.

[ShannonAlther]

> Your claim amounts to refuting the idea that anything new can be done, that the outcomes we currently have is as good as it gets.

Poppycock. The Wikipedia page lists a small handful of promising technologies[0], and there are others not listed there: improvements in organ transplantation and/or cloning would do wonders. I'm particularly fond of the idea of synthetic chloride channels that do the work of the CFTR protein.

But the reason that cystic fibrosis is lethal is because of the mucous. The lethality of the mucous is unrelated to your lifestyle choices, since the lungs of a CF patient are colonized by bacteria that prefer the different type of mucous. This sort of thing is exacerbated by fraternizing with other people who have CF, since they're likely to infect one another.

Over time, the bacteria become resistant to the antibiotics used to treat the disease. So more antibiotics are definitely in order, although that's not the be-all end-all. Again, I'm just saying that lifestyle interventions are almost certainly not effective (I can't even see how).

But there's a critical point in here: sure, Ignaz Semmelweis was laughed at for positing an unusual theory. But so were tens of thousands of others who came up with actually crazy ideas, too many to list. All I'm saying is, just because people disagree with you doesn't mean they're wrong.

[0]https://en.wikipedia.org/wiki/Cystic_fibrosis#Research

[Mz]

You are quoting Wikipedia at someone who HAS CF? Is your knowledge of CF based completely on reading crap online? Because mine absolutely is not.

All I'm saying is, just because people disagree with you doesn't mean they're wrong.

And all I am saying is I have heard this kind of dismissive crap from the "peanut gallery" before. It isn't anything new or novel for people to treat me in a completely disrespectful, dismissive fashion.

So if that is all you have to bring to this discussion, then I think I am done. Because it isn't a good faith tactic At All and I have wasted enough of my life on assholes on the internet who are sure that I am crazy because REASONS, none of which are at all actually logical or scientific, though that is what they are typically claiming as justification for just crapping all over me gratuitously.

[ShannonAlther]

I don't believe I've been disrespectful or dismissive at all. I included the reasons I think you're mistaken, and I've cited Wikipedia because going through the back issues of the NEJM and the Canadian Respiratory Journal for citations would take too long to respond in a timely fashion. If you'd like to explain why you think lifestyle interventions are helpful for other cystic fibrosis patients, please do! I can also grab better citations, if you really want.

[Mz]

No, you are being dismissive. Maybe you don't see that. But there is no point at which you have expressed genuine curiosity.

Your assertion that it can't be done and that I merely have a milder form of CF are simply ways of dismissing the idea and they aren't anything I haven't heard before. If being contemptuous of me personally and dismissive of 16 years of my life isn't your intent and you are genuinely curious, you are utterly failing to communicate that.

[ShannonAlther]

Then I will ask directly: what lifestlye interventions have you implemented, and how are they helping you?

Edit: Nevermind, you said it involved dietary change to handle acidosis. That's great, but is it related to the bacterial problem?