Oxaloacetate

Messages
2,284
Likes
7,537
Well folks,
I just wanted to solemnly inform you that oxaloacetates, which Dr. Kaufman stated an 80% response rate on the IACFS / ME did absolutely NOTHING for me at 500mg a day.

I've heard the same thing from all of his other patients on Twitter. So: I think you can save yourself this investment!

Martin
 

geraldt52

Senior Member
Messages
594
Likes
2,383
Sounds like just another tall tale of "success" by a "ME/CFS specialist"...hardly a new development. We should all stop confusing doctors who respectfully acknowledge that we are sick with doctors who can actually do anything to help us...and save ourselves a lot of money chasing rainbows. With no biomarkers, no way to tell who actually has "CFS/ME, and no way to track actual improvement, it all seems to just add up to a lot of nonsense. At $500 an hour, no insurance accepted...
 
Messages
2,284
Likes
7,537
Sounds like just another tall tale of "success" by a "ME/CFS specialist"...hardly a new development. We should all stop confusing doctors who respectfully acknowledge that we are sick with doctors who can actually do anything to help us...and save ourselves a lot of money chasing rainbows. With no biomarkers, no way to tell who actually has "CFS/ME, and no way to track actual improvement, it all seems to just add up to a lot of nonsense. At $500 an hour, no insurance accepted...
Ok but don't forget that he is one of those who actually helped many
 

5vforest

Senior Member
Messages
273
Likes
621
I'm sorry it didn't work. Thanks for letting us know. I hear really good things about Kaufman, so I found it surprising that he would make the famous "80%" statement tbh.
 

seamyb

Senior Member
Messages
560
Likes
1,312
I'm sorry it didn't work. Thanks for letting us know. I hear really good things about Kaufman, so I found it surprising that he would make the famous "80%" statement tbh.
Yea, like there was a post on here earlier about 2% of PwME had activated shingles. I think to cure 100% of PwME we need 50 of these.
 

geraldt52

Senior Member
Messages
594
Likes
2,383
Ok but don't forget that he is one of those who actually helped many
Fair enough, but that 80% claim just screams BS, no matter how respected the source. And, if he truly has "helped many", what condition were they actually suffering from? No biomarker...no idea what a person who was supposedly helped was suffering from.

The only thing of value I can see that any ME/CFS specialist can do is to exclude other treatable conditions, which any doctor should be able to do...for a hell of a lot cheaper than any of the so-called ME/CFS specialists. Admittedly, most doctors really don't give a shit about complicated cases. And while the "specialists" are at least sympathetic to our plight, I fail to see any progress they've made over many decades. And in general I find their prices and their not accepting insurance to be profiting off of the desperate.

I even lost any confidence whatsoever in patient reports of improvement after the double-blinded Rituxan debacle, which showed better results from the placebo than the treatment. So why should I have any confidence when someone says something is "helping"?
 

5vforest

Senior Member
Messages
273
Likes
621
Personally, I am willing to pay for a doctor who will help me with my "experimenting", which is how I view doctors like Kaufman, etc.

I agree that patient reports of improvement are usually next to useless.

When my doctor tells me that many of their patients have had success with X, I have learned that this usually will have no bearing on my own experience.
 

leokitten

Senior Member
Messages
1,472
Likes
3,732
Location
U.S.
Did I read somewhere that some people didn’t get much improvement at 500 mg 2x day but at 1000 mg 2x or 3x day it might work much better? So 500 mg 1x day might not do much. See Cort article on Health Rising
 
Last edited: