Comment by wavepruner | Hacker News Reader

Comment by wavepruner | Hacker News Reader

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I'm sorry you lost your friend. It sounds like that was a long battle and it has weighed on you ever since. I am glad you were there to support them. I know from personal experience how obnoxious it can be to be bombarded with this-and-that alternative therapy.

But this lack of progress is what I find so frustrating, along with the hostility towards anyone who is trying to change that. Many sick people are willing to take a risk to progress the science. The insistence on 100% safety and unpractical clinical trials that only allow for patent-able medicines is ultimately killing more people by stalling progress. We haven't really cured a major disease in over half a century. That needs to change.

If a sick person claims that some sort of alternative therapy cured them, then there is absolutely _something_ there. It cannot always be explained away by the placebo effect, as the placebo effect is temporary. You're not going to cure a chronic disease with the placebo effect. These are important data points that need to be discussed. And a sick person should be able to discuss it regardless of their credentials. Their first-hand experience is valuable and contains objective truth.

But I agree that to claim that since an alternative therapy cured one it must cure all is irresponsible. Often times we do not even know what the root cause of an illness is, and until you do, just because two people have the same symptoms does not mean they have the same disease. There's also the issue of co-morbid diseases. There is rarely a one-size-fits-all approach (and it's seriously unfortunate that modern medicine insists that one treatment must work for everyone, otherwise it's quackery).

There are numerous attempts, and risks, being taken to advance the science. Sometimes the problems are simply hard, and solutions, if they exist at all, extraordinarily elusive. In recent years, genetic engineering advances such as CRISPR do put the possibility of a direct cure within realm of possibility, though of course that may also prove a false hope.

Other close friends have worked in the pharmaceutical and clinical trials sectors, I've a strong awareness of what goes on there.

There are numerous avenues which have been, and remain to be, explored. My friend themselves participated in several novel therapies once established protocols proved insufficient. We pursued all clinically plausible options, to the point of exhaustion (treatments themselves are often tremendously debilitating), even where not yet proven.

The hostility is not towards "anyone who is trying to change that". There is all the encouragement on Earth for such efforts. Watching masses of growths grow and consome someone you've held quite dear is not easily forgotten.

But those who exploit, possibly innocently but all too often with sheer uncaring deliberateness, the fear, ignorance, guilt, grief, and desperation of patients and thei loved ones beyond all hope is the one thing I've seen uglier than those growths.

The laetrile pamphlets I intercepted and burned 30 years ago went to great lengths to justify their clinics' and promoters' opposition to structured clinical studies, on the grounds that this would deny ssome patients (the control group) useful therapy. But this omits two key facts:

1. There've been numerous studies of the compounds and there is no clinical sign that of medical benefit. For nearly 60 years now.

2. Refusing to certify and demonstrate the compounds withholds the treatment, if beneficial, from vastly more beneficiaries. Of course, as the treatment is a fraud, this harm is fictional, but it. utterly undermines the fraudster's arguments. Their overwhelming insincerity aand self-serving aims are manifest.

There are several other common fallacies in your response I won't bother addressing, save to say in balance you're accomplishing far more harm than good here, and if you have the least bit of sense or decency you'll stop.

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