Teclistamab for ME/CFS

[dilieil]

If, after careful consideration taking your cost function into account, you believe the expected value of a risky treatment like this is higher than doing nothing, that still doesn't mean you should do it. Your choices aren't just "risky treatment" and "do nothing." There are many other treatments with much lower risk. Given that the evidence for this one is all based on anecdotes and speculation, why not go for a less risky one instead?

For example, some people report remarkably large effects from very safe things like the kitchen spice cumin (not even a special type or amount -- just the amount you might find in curry). This probably won't work for most people, but neither will these speculative high-risk treatments. Why not try all of the low-risk options first?

 

[Kitty]

But you can always try and mitigate the side effects or risks with supps, diets, etc.

But the implausibility of that is almost comical. Even if it were a serious proposition, how could we know the risks?

Some of these agents are too new for long term effects to have become clear. It's possible some of them are more likely than others to cause serious consequences—immediate reactions, cancers, other long term diseases—but it could easily take a decade for that to begin to work through in large enough numbers of people that scientists can start to understand the risks.

 

[hotblack]

There seems to be a very common ‘it won’t happen to me’ bias in humans. We can’t stop that and there are probably reasons why risky behaviour has had evolutionary benefits, but we probably should be aware of it.

 

[EndME]

But the main thing is, for me at least, if I see some positive evidence coming out of Habet's crazy Teclistamab trials, ethics aside, I will interpret it as more evidence that supports the underlying theory of Daratumumab, as BCMAs are another receptor on the surface of LLPCs and target it.

If it fails, then it would make the underlying theory less valid. So just need to wait for him to do this thing.

I think your cost function might not be taking into account that it's not Fluge and Mella you're talking about, but a person, who by his own accounts has absolutley no idea of what he is doing and has extremely likely caused suffering and possibly death, without anything to show for it.

That won't be helpful when someone develops neutropenia but the mister talks about spike proteins detoxing and mast cells activating.

Happy to see how things with Fluge and Mella will turn out and what leads they'll continue pursuing.