Comment by Jamesbeam | Hacker News Reader

Comment by Jamesbeam | Hacker News Reader

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She has done research on herself...with cheap electronic home monitoring devices that were not calibrated to any proper laboratory standards, without any kind of proper blinding or any other globally accepted research standards.

I can't. I can't do this any longer.

This is as professional as a certain former US president suggesting we should shine strong light into the body or inject people's lungs with disinfectant. It's not a "hypothesis" it's just you being stupid.

I'm not a scientist, but I beg people to not test wild stuff on themselves and instead let the people do their job who dedicated most of their lives into figuring out problems the proper scientific way. You are not a scientist because you read some research papers and stretched a bit at home and changed your diet and magically feel better now.

Long-Covid for many people is the first time they have to deal with a life-altering illness that we do not have a treatment for yet.

So unless you have prior experience with that kind of situation, I get it, it's scary and hard to understand that there might never be a cure.

I have the "luxury" as someone with a lifelong autoimmune disease that cost me a vital organ along the way and can only live because of science and popping a pill each day, plus surviving cancer, that sometimes all you can do is make the best out of the situation as is while real scientists and doctors figure stuff out.

Accept that at this time you might not be going to get back to what you were capable of before the illness. Build psychological resilience and find mechanisms that help you get back to an acceptable level of life quality. It's not worth it chasing DIY treatments if you have no fucking idea what you are doing, like this girl. Desperation is not a good guide in life decisions.

You are right about one thing - you have the luxury of popping a pill every day that treats your condition. And from that platform, you can look down on the others and tell them to just be patient and resilient.

Your injunction to “build psychological resilience” is exceptionally tone-deaf for those suffering from cognitive problems. If your prefrontal cortex was receiving insufficient perfusion and excessive inflammation, you would begin to see the futility of such a suggestion. Try telling that to someone who’s drowning.

The suggestion that people with LC can, through the measures you suggest, get back to “an acceptable level of life quality” demonstrates how little you understand of their situation. Many people suffering from LC were formerly top-performers in their respective fields and are now suffering considerably every single day- have been for many months or years - and are understandably desperate. Unfortunately, many have chosen to end their lives because after trying the approaches you suggest (and being gaslit in a similar fashion) they concluded that life was not worth living.

Finally, your saying this girl has no fucking idea what she is doing implies you are an expert in the subject matter that she writes in. Is that the case? I find that doubtful. And I sure hope not because the illogical way you reason here would be a huge disservice to the life-sciences field.

>This is as professional as a certain former US president suggesting we should shine strong light into the body or inject people's lungs with disinfectant. It's not a "hypothesis" it's just you being stupid.

Ultraviolet light treatments introduced into the tracheas of five critically ill COVID-19 patients appeared to be safe and associated with a reduction in the respiratory load of SARS-CoV-2—the virus responsible for COVID-19—in all but one patient, according to a study conducted by Cedars-Sinai. [0]

Maybe people should be trying wild stuff on themselves. Granted they shouldn't make sweeping recommendations from it. But moving fast and breaking things solves more problems than waiting for scientific consensus. Planck's Principle and all that.

[0] https://www.cedars-sinai.org/newsroom/reduced-viral-loads-se...

The study says in no way that the uva therapy was responsible for better outcome of the patients. 20% of their study group died while under the treatment, not necessarily from it.

You make all the classic mistakes misinterpreting study results.

They suspect that some kind of protein activation from the light could have lowered the viral load. They don’t have proof for that or claim they have.

This is in no way an accepted or used treatment for critical ill Covid-19 patients.

But you suggest we should move fast and break things. Breaking things in this case means killing real people.

It has potential. No one should be forced to try things, but if people make an informed choice to become test subjects it’s not something to discourage.

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