Trial Report Low Dose Rapamycin Alleviates Clinical Symptoms of Fatigue and PEM in ME/CFS Patients via Improvement of Autophagy, 2025, Ruan et al

[Hutan]

but it does give a ceiling to how large the effect might be.

Yeah, that's pretty clear, thanks @ME/CFS Skeptic. There's really nothing there beyond what you'd expect from a placebo, natural fluctuations, and more than half of your cohort (probably the cohort with the least improvement) dropping out.

I did like the ATG13 work. I haven't read this study and I'm hazy on the previous work now, but do people think there is a way that finding might still be worth investigating?

 

[wigglethemouse]

I did like the ATG13 work. I haven't read this study and I'm hazy on the previous work now, but do people think there is a way that finding might still be worth investigating?

Putrino's lab with funding from PolyBio is running another trial. I was really disappointed that Amy Proal/PolyBio are reposting success stories on X of people posting a good response to Rapamycin and no poor responses.

 

[wigglethemouse]

Would be interesting to see the results for the Sf-36 physical functioning scale but it seems they haven't plotted that one (although it was measured).

I seem to remember the oxaloacetate trial paper promoted one of the physical function scales in the text of the paper vs the other which had null results (hope I'm remembering right). Sure would be nice to see Sf-36 data. Some of the same clinicians took part in the oxaloacetate and rapamycin open label trials.

 

[ME/CFS Skeptic]

The paper states:

Importantly, discontinuation from the study was most commonly attributed tofinancial barriers as this pilot trial did not cover the cost of the study drug or safety laboratory tests. A secondary reason for discontinuation was a lack of perceived clinical benefit or a clinical decision toinitiate a different therapy that may or may not interact with the study protocol.

But as someone pointed out to me on Twitter, table 1 shows that 'no change in symptoms' (n = 17) was more common than 'financially unable' (n = 10). So lack of perceived benefit seems to be the primary, not a secondary reason for dropout?

 

[ME/CFS Skeptic]

I also don't get that if the main problem is that the drug is really expensive, then why would you include 86 participants on the drug, and nobody on a placebo (which costs virtually nothing).

 

[wigglethemouse]

I also don't get that if the main problem is that the drug is really expensive, then why would you include 86 participants on the drug, and nobody on a placebo (which costs virtually nothing).

CostPlus charges $61.24 for 30 x 2mg tablets plus $5 shipping. A fraction of the cost of a doctors visit to Kaufman.

I suspect the labs were much more expensive, as quite a few of the tests they were ordering are only covered once per year only on Medicare insurance e.g. A1C, Lipid panel. So tests before taking drug for a baseline snapshot would be covered but some of the next tests you would be hit with a surprise large bill (often 20x what insurance would have paid if it covered payment).