Open What questions should a PwME ask if they're considering entering a treatment trial? (specifically Lindus Health ReMEdi trial)

[BrokenBeaktheBrave]

I just signed up for it too via a targeted ad on Instagram. I'm desperate enough to do it without knowing what the drug is. My screening call is on Monday.

 

[hotblack]

So if it is amifampridine, it's a potentially interesting area of research—the drug is used to treat an ion channel disorder—but I'd still like to know the details of the theory underpinning the experiment.

And given that acetylcholine which has come up various times, so I can see it being possible there’s a mechanistic theory. But I can’t help but feel it’s a bit more of a punt…

 

[Kitty]

But I can’t help but feel it’s a bit more of a punt…

Yes, me too, and one that could very well have the opposite effect to that intended.

Everything I've read about ion channel disorders suggests the effects on muscle can be caused by vanishingly small imbalances in flux. Not sure I'd volunteer to have someone meddle with it without some confidence they knew what they were doing.