Darigabat

[Verity]

Many patients report benefit from taking benzodiazepines both during exertion to prevent/reduce PEM and during PEM to reduce symptoms. In my opinion, benzos have by far the strongest anecdotal signal in ME, and we should pay attention to them. For obvious reasons, though, they are not good candidates for taking daily.

There’s an investigational benzo-like drug called darigabat that is thought to be less dependence-forming based on animal studies. It seems to be a drug in want of a disease. It’s been tested for a few things and did well in a small trial for photosensitive epilepsy but failed for anxiety and chronic pain. Given that we may be most interested in its excitability-reducing properties, the fact that it failed in the latter two disorders doesn’t seem like a big problem.

A drug that could reproduce the effects of benzos for patients and be taken daily could be a huge step forward. Does anyone else think this drug is a good candidate for testing in ME?

 

[Kitty]

I don't know about benzodiazepines, but tramadol is excellent at reducing moderate PEM symptoms. So good that it's potentially unhelpful.

It's apparently not a straightforward painkiller, it also acts on the serotonin system. I don't really understand it, but DHC never gave me that effect. I had to stop taking that over a decade ago because the drug is bulked up with lactose, which gives me IBS. I switched to tramadol instead.