Comment by rocqua | Hacker News Reader

Comment by rocqua | Hacker News Reader

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I looked into both of those researchers. I could find nothing published by them with regards to MS. They do both seem to have published on Lyme disease. Can you provide any published research to back those youtube videos?

Maybe I'm wrong here, but this feels like giving medical advice based on very little hard evidence. Considering I have a loved one with MS, I find such advice sickening. You see this with many terminal diseases.

Terminal disease is a fucking terrible thing. It makes people desperate in every sense of the word, it makes them grasp at anything. Flippantly mentioning a few things that 'might help' is basically saying. "Hey, here's a thing that maybe means you won't die / suffer as much from dying". Making such claims lightly is (excuse my language) being a fucking asshole. You are getting someone's hope up, only for that hope, and a little piece of that person with them, to be smashed to pieces when it turns out to be wrong. Moreover, you are telling that person "don't accept your fate, here try this". Acceptance is needed for a healthy way to process terminal disease. 'Advice' like this fucks with that in a big way.

Don't overestimate your own chances of being success at the expense of a dying person please.

(I know, harsh words. But I needed to get this off my chest)

Making such claims lightly is (excuse my language) being a fucking asshole.

(I know, harsh words. But I needed to get this off my chest)

Taking this out on someone with carefully worded suggestions that only advocate testing is also "being a fucking asshole." Because very frequently the people putting out such info are giving testimony from firsthand experience because they know firsthand what a fucking nightmare it is and if they got better, it only seems the decent thing to do to share info that might help some people with the same diagnosis they had. And then they will run into this kind of ugliness ten thousand times, no matter how carefully they word it.

I agree that I might be a fucking asshole here, but those sharing anecdotal 'it helped for me' stories aren't helping. They are the exception, their advice still isn't based on verified science and therefor unlikely to work someone else.

They are commenting on a public forum. If you think they are full of shit and have no useful information, you are free to ignore it. The fact that it is anecdotal testimony in no way justifies being verbally abusive.

Your first paragraph inquires as to whether or not they can substantiate their claim. The next four are gratuitous ugliness. You could have stopped at the end of your first paragraph. They could have replied to that. People could judge for themselves if it merited further investigation or not.

You having big feels on the topic is not justification for this kind of behavior. They also likely have very big feels about it too and they aren't intentionally shitting on anyone.

People bitch all the time about the lack of a cure or the lack of real alternatives. Then, anytime someone has a story of success with an alternative approach, they get shit all over, dismissed as "that's just anecdotal," called crazy and worse, plus outright told they have no right to participate in the conversation because they can't prove their claims.

Maybe if the world were not so full of asshole behavior, we could more rapidly find new solutions by listening to the folks who were told it was hopeless who did not politely agree to suffer and die so that other people could feel like they are smart or some shit.

I, myself, was diagnosed with RR Multiple Sclerosis, with multiple dem. lesions in both brain and spinal cord, ON, delayed evoked potentials, 4 years ago. Completely reversed the condition with long term antibiotics and anti-helmintics, no evidence of MS currently. So my advice might be biased, sorry. As I said, there is no harm in examining this perspective. I didn't advocate for treatment, but for testing.

What do you mean by "no evidence of MS"? Brain damage reversed? 4 years with no relapse with RRMS is not unheard of. I did 15 perfect years before I got hit with a big one. I too am symptom free untill I suddenly am not. That's exactly why you and I have the diagnosis RRMS as opposed to one of the other subtypes.

I think there's an imprecision problem here with the language. What people might mean by "could help" ranges from "A miracle cure overnight" to "3% improvement in perceived severity of one symptom"

I hope that people will avoid the former and view the latter in context - i.e. a genuine wish to relieve their suffering for a while, rather than a flat denial of the reality of the disease. I don't think either is especially appropriate, but the latter is misguided rather than malicious.

I also have a loved one with MS. It's hard to deal with. But enjoy the good days with them, and give them as much love as you can on the bad days

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