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cjbgkaghyesterday at 10:37 PM12 repliesview on HN

Peptides are a revolution and you don't need to know how they work to know that they work (for various people for various conditions). There is a tension between empiricism and fundamentalism with much of medical science focusing on fundamentalism. Now with the ability to collect and search large amounts of empirical data and communicate it peer-to-peer people are picking up on a lot of things that work without knowing why they work. I think people are just going to circumvent the fundamentalist and chase after whatever works.

I owe my health to early adoption of experimental peptides, I have life long ME/CFS and there is no known treatment for this nor is there any on the horizon. At least they finally have a diagnostic test and know it's not psychosomatic but I could have told them that from day 1. Most doctors are not researchers and have little understanding on statistics instead preferring to rely on discrete classifications and simple decision tress. As someone with hEDS from TNXB I am a walking bag of symptoms and yet not a single doctor could figure it out. I had to research it myself which involved post-doc level textbooks and research journals. I came across the work done by Prof. Khavinson (USSR) and it did appear to me that peptides were incredibly under-explored. Given the poor quality of life with ME/CFS I was willing to take serious risks so previous trials were helpful to give an idea on dosing and lethality, I went through most of the research peptides one by one. I actually waited on semaglutide a bit because I suspected there was a small minority who would have hyper sensitivity and I both expected that to appear in the data, which it did, and I expected to have hypersensitivity, which I did. Others who were less careful ended up with pretty bad gastroenteritis. Semaglutide has been the most effective and with it and a few others I am largely able to lead a normal life. I was getting gray market from the US but now I get it direct from China.


Replies

dengtoday at 8:54 AM

> There is a tension between empiricism and fundamentalism with much of medical science focusing on fundamentalism.

This is a deeply unfair statement, and also a false dichotomy. Medical science is of course empiric. What you call "fundamentalism" is that compounds need to undergo a rigorous regiment of empiric testing before they are given to potentially millions of people. And no, it's not just because of Thalidomide. Many, many compounds fail clinical trials because of severe side effects, like liver toxicity, severe immune reactions or heart problems. Then there's of course increased risk of cancer, which can take many years to manifest itself empirically. You argue that you prefer living with these uncertainties rather than ME/CFS, and that's of course entirely understandable, but disparaging the field of medical science as focused on "fundamentalism" because we do not give large patient cohorts untested compounds is polemic. I understand where you are coming from, and I'm sorry that you suffer from this terrible condition, but likewise, you should try to understand the other side.

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stalfietoday at 7:33 AM

Non blinded self experimentation is not a useful branch of empiricism.

I had an ME/CFS patient that had tried 100s of things and documented the effects thoroughly. She had a quite impressive list. Roughly 30% had had an effect to begin with, but the trend she observed was that it lasted for around a month at most. Placebo was her overall conclusion, but she occasionally got relief anyways so we both agreed that there was no harm in continuing. I'm sure several "peptides" is on her list by now.

There is nothing new under the sun, and fad cures for diffuse conditions have come and gone many times before. This is especially the case for conditions involving pain or tiredness, which are extremely sensitive to both placebo and nocebo.

What would be revolutionary would be 2-3 double blinded RCTs showing a lasting effect. Which would be great if someone did! But you have to actually bother to do it. And personally I would put money on the outcome being "no effect".

bertylicioustoday at 5:40 AM

I'm pretty sure there is no diagnostic test for ME/CFS. What are you referring to?

Also I don't understand how semaglutide did help you while you're at the same time part of a minority risk group with a hypersensitivity to it. Isn't that a contradiction?

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ramraj07today at 7:42 AM

Im sorry for your quality of life problems but calling doctors bad at statistics and then giving anecdotal evidence as proof has to start ringing some logical bells right? You dont even have to take our word. Use an LLM as judge. Paste your comment into chatgpt and see what it says.

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dotancohentoday at 6:54 AM

  > Peptides are a revolution and you don't need to know how they work to know that they work
Perhaps. But knowing the mechanism of how they work sure seems fundamental to ensuring that they are safe to use.
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alladortoday at 3:56 PM

That is so dangerous, buying grey market replicas of pharmaceuticals.

Unless you have a research lab built out in your house, you have zero way of knowing what it is that you're actually getting. Whether the dosing matches the claimed dose. Whether there are bacterial growth, or other manufacturing chemical left in by bottom-of-the-barrel chinese manufacturer.

I understand your risk profile may be different than others, but when you can get the real thing officially, I'm not sure why anyone would risk this.

blitzartoday at 7:05 AM

> chase after whatever works

Crack is really moreish.

beowulfeytoday at 7:40 AM

Clinical trials are not looking for fundamental mechanisms, they are there to ensure an effect is strong enough to say a product should be sold for that purpose. Otherwise you end up with snake oil salesmen. Because how can you be sure you are even injecting the thing the sellers claim it is?

I would encourage everyone interested in peptides to read about the state of medical science before the establishment of the Pure Food and Drug Act of 1906.

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dev_l1x_betoday at 7:30 AM

Have you tried omega3? There were some improvements I was reading about.

deinonychustoday at 5:33 AM

can you talk about how semaglutide improves ME?

Angosturatoday at 6:47 AM

> you don't need to know how they work to know that they work

Welcome to the powerful world of the placebo