Why Do So Many ME/CFS Treatments stop Working
TL; DR. Many people with severe ME/CFS experience temporary improvements from treatments or supplements, only for the effects to fade weeks or months later. As someone who is extremely severe myself, I no longer know whether trying new treatments is worth the emotional and physical cost if the body eventually adapts to everything.
I remain deeply shaken by the death of James Strazza a few days ago.
Two years earlier, during the fourth year of his illness, he experienced a significant improvement with oxaloacetate. However, the effect of the supplement was only temporary.
Whitney Dafoe also improved with low-dose aripiprazole (LDA), but later reported that it stopped working after about two years as well. I honestly have no idea how he continues to maintain the benefits of that improvement today, aside from a very risky protocol he reportedly followed.
Why do supplements and off-label treatments seem to stop working so quickly in ME/CFS? Is it simply that the brain adapts to them? But then again, many people take antidepressants or antipsychotics for years while remaining on the same dose with stable effectiveness.
I am extremely severe myself, and I no longer understand whether it even makes sense to try something new if the effects will fade after a few weeks or months.
I have noticed the same pattern even with simple supplements. For example, when I start magnesium or melatonin, I may feel a noticeable change for one or two days — and then suddenly nothing It feels as if the system rapidly adapts to everything, or perhaps the illness itself keeps overpowering every temporary improvement.