Mechanism for drug tachyphylaxis (poop out) in ME/CFS?

It seems like some of us are losing our response to Abilify. Same thing happened with antivirals— they worked great until they didn’t.

So why does this happen with this disease but not so much with other diseases?

Please don’t make me read a long research paper......

 

I've encountered several treatments that worked well the first few times I tried them, then they stopped working and never worked again. That's just part of ME. I haven't come across any official hypotheses for this effect, but I assume that ME sets some factor in our cells that our bodies then adapt to to keep at that state. Think of a home heating system. Some disorders block airflow or heat transfer through surfaces or affect the home's thermal envelope, but the system keeps trying to maintain the thermostat setting. ME changes the thermostat setting, so any other active parts of the system then tries to maintain that temperature setting, even though it's an uncomfortable temperature for you. So far, ME's 'thermostat' remains hidden.

 

Overexertion, PEM, and crashing while on the treatment.

I’m going to restart doing a paleo/keto diet once I can get back on my feet and this time I’m not going to constantly overexert or add anything to my life, just going to be happy it gives me the energy that it does and not use it for anything major or try to claw some part of my previous life back.

 

@Jaybee00 I know for the people where antivirals worked is that they aggressively rested, paced, and overexerted as little as possible during the entire treatment and only slowly over a couple years or so the gains became permanent. And only slowly did they start adding back one piece of exertion at a time within their energy envelope. It’s a long marathon not a race.

No empirical treatment is ever going to work if the moment you see gains you start e.g. working again or exerting well beyond your energy envelope. People on the forums haven’t generally given that important info when they say a treatment stopped working, so I’ve always wondered if they simply overexerted to kill the treatment. I also personally don’t count supplement protocols in the same category, they give some people some marginal gains but not to the level that antivirals, Abilify, keto/paleo, etc. seem to have done.

 

I'm not sure this is the case, especially with drugs that act primarily in the brain.

 

I think you are probably correct about drugs that work in the brain.

 

Think of ME as an unruly plant. Abilify trimmed one limb. The smaller branches slowly grow and fill in the hole that Abilify created.

My uncle adopted one of his sons, who is bipolar I. His body works to get around the drug and return to being bipolar. He changes drugs frequently.