Oxaloacetate Treatment For Mental And Physical Fatigue In (ME/CFS) and Long-COVID fatigue patients, 2022, Cash and Kaufman

[Trish]

Could it have been the prohibitive cost? Were the long-covid patients required to purchase it?
Would allegiance to your doctor matters when it comes to participating in a study like this? Long-Covid patients would not have such allegiance or connection with the doctor.

I wondered about that. Surely if you're going to call something a clinical trial, you have to provide the treatment free.

 

[cassava7]

A detailed reanalysis of this trial has been sent to the editor of the Journal of Translational Medicine:

Summary on Twitter:

 

[perchance dreamer]

I used to take oxaloacetate and felt a little more energy and a slight mood elevation. I had to stop, though, because even though I took it as soon as I woke up, it had a negative effect on my sleep. This kind of reaction is very common for me.

 

[forestglip]

A detailed reanalysis of this trial has been sent to the editor of the Journal of Translational Medicine:

Summary on Twitter:

FYI, in October 2023, the journal added this disclaimer to the top of the page:

Editors' Note: Readers are advised that concerns have been raised regarding the methodology and reporting of this clinical trial and an incomplete declaration of competing interests, which are currently being investigated by the Editor-in-Chief. Further editorial action will be taken as appropriate once the investigation into the concerns is complete and all parties have been given an opportunity to respond in full.

 

[cassava7]

FYI, in October 2023, the journal added this disclaimer to the top of the page:

I hadn’t been made aware of this so I don’t know if this editor’s note came about based off of my reanalysis or someone else’s report, but I’m glad that it has been added. Thank you for posting about it.

 

[Sid]

I have seen patients sell their house or car to see him in a last ditch effort, as he is very expensive. "If Dr. Kaufman can't help me, nobody else can. If this doesn't work out i'm doomed". I wouldn't be surprised if this kind of patient population was more susceptible to placebo, especially if he told them he is coming out with a novel mitochondrial treatment.

I've seen the attitude you refer to and it's very dangerous. You will still have ME/CFS afterwards, only without a house/car.

 

[rvallee]

I've seen the attitude you refer to and it's very dangerous. You will still have ME/CFS afterwards, only without a house/car.

I wouldn't even pay $500 to see the "best" clinician for this. It's not even close to be worth it. I've seen so many terrible stories about some of them, and anyway I know they have nothing useful to offer.

 

[Milo]

I wouldn't even pay $500 to see the "best" clinician for this. It's not even close to be worth it. I've seen so many terrible stories about some of them, and anyway I know they have nothing useful to offer.

Honestly, and not related to this doctor, validation is a good mental health booster when someone face so much hostility at home in primary care. Secondly these doctors know how to explain the disabling aspect of the disease and help support the disability benefits that are so crucial for our patient population.

it was by visiting one of our experts that I was put on medication for POTS and also got my disability insurance. Treatment attempts for ME were unsuccessful but I am thankful to have had a go after doing my own research.

 

[Mfairma]

I've seen the attitude you refer to and it's very dangerous. You will still have ME/CFS afterwards, only without a house/car.

If expert provider’s do anything it should be putting you in the best position to get disability, as @Milo spoke to. Both speaking about the disease in ways that prepare you for the possibility emotionally (especially if you’re on the edge functionally at work) and doing the tests and writing the letters that will support your app. Not all do. Many offer implicit, sometimes explicit promises of wellness that while maybe helpful in some ways as an emotional bridge, in my view make it harder to see how this new life becomes possible.