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Toby Rogers's avatar

A few interesting resources that I've discovered in the last few days:

https://www.reddit.com/r/cfs/comments/v00hm7/im_a_doctor_with_mild_cfs_every_time_i_exercise/

https://www.reddit.com/r/cfs/comments/sw5iet/as_a_doctor_what_should_i_be_reading_about_cfs_to/hxstu5g/

https://doctorswith.me/

What fascinates me about that first thread is a comment from a guy with ME who treats it as if he was a body builder. It makes a ton of sense when you think about it. Body builders put their cells under tremendous stress. And they are struggling to make more ATP. Also, body builders need to get waste products like lactic acid out of their cells to avoid cramping. Well, ME sufferers are in the same boat -- our cells are under enormous strain/ struggling to make more ATP and we need to transport waste products out of the cell. So if we treat ME in the same way that body builders do then we can supplement with creatine, l-glutamine, and d-ribose. I think it's brilliant. No downside and potentially massive upside from trying this.

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MKnight's avatar

Thank you for the openness. And for turning a personal suffering into a desire to help others. That’s truly remarkable.

I am one of *those* autism moms who has to research stuff like this. And I would say I only do 1/4 of what others do. But with the doctor we have found, he consistently marks “mito dysfunction” on my sons’ lab work requests. And the doctor is always virus hunting. Always. I have started second guessing all medical professionals, except for this doctor. I doubt him, but he ends up being right, more often than not.

Case in point, trying a giardia medication - quite randomly - literally saved one of my sons from a nightmarishly severe psychiatric episode. Something I don’t even try to explain to our “normie” doctors. (I’ll try to write about that at some point.) He did not have the parasite that the med was supposed to treat, and yet, in a moment when heavy antipsychotics were being suggested, this anti parasite/antiviral drug is the one to pull him out of the prolonged nosedive.

Thank heavens for people like you who keep searching, keep sharing, and keep trying. Bless you.

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