Renegade Research

[Eleanor]

Brian Vastag (@brianvastag@mas.to)

Kaufman: Most of my patients using it are long covid patients. Their responsiveness may be significant...it's a shorter course of illness than long-term ME/CFS patients with a very definite infectious cause of their illness.

mas.to

"Kaufman: Most of my patients using it are long covid patients. Their responsiveness may be significant...it's a shorter course of illness than long-term ME/CFS patients with a very definite infectious cause of their illness."

i.e. a group of patients who might be more likely to recover/improve anyway?

 

[Utsikt]

Quotes according to the poster:

Kaufman: Most physicians working in hospitals or corporate healthcare aren't allowed to push boundaries like this. I don't know how to get past this roadblock.

You mean the roadblock of «first do no harm» and scientific rigour?

Kaufman: Off-label use is off-limits in a lot of places.

Kaufman: Now by the second patient visit, I'm considering starting these drugs. At very low doses I'm not seeing significant side effects. Why make the patient wait? If I have a drug that may be a game-changer for them

And this is why I say that people like Kaufman profit off of desperate patients. They know that they can pay to see him to get to try the drugs they want. He doesn’t bother with the evidence.

Kaufman: There is a murkiness to trial-and-error medicine, which is what I do all day...everything I use is off label. My practice is I will inch doses up until I see benefit or I see side effects & no benefit. It's individual.

 

[Eleanor]

Dempsey: These drugs have some research that it is anti-inflammatory; being investigated for neuroinflammation. We're making it sound miraculous but it's not. It might not work at all - I certainly have those pateints who don't notice anything. I also have patients who do poorly pretty quickly. Everyone needs to go down this path cautiously with a provider who understands the nuances of this drug.

 

[wingate]

He doesn’t bother with the evidence.

Indeed. I can think of several drugs/avenues of treatment that he has touted over the years without compelling evidence. Before this, he made claims about how helpful oxaloacetate is for his patients. Before that, it was MCAS treatments, etc.

 

[wingate]

I get frustrated by the undesired work his and other clinicians’ unfounded claims create for me. My well meaning family members see claims like these and get hopeful thinking that there’s something helpful I can try, and I have to find a way to explain why it’s probably not gonna work out.

 

[hotblack]

On a patient with traumatic brain injury after a car crash

Dempsey: "She feels less inflamed...she doesn't care she hasn't lost that much weight" because she generally feels much better.

On paying for these treatments

Kaufman: Insurance coverage is a huge obstacle. The only way you can get insurance coverage is for FDA-approved indication. That means you can't microdose. You cannot obtain it at a low dose and still get coverage. You can't write a prescription for Wegovy for 0.25 mg at CVS...they'll look at you like you're crazy. In my practice, patients pay cash.

One of the other comments poses a great question

"It might not work at all - I certainly have those pateints who don't notice anything. I also have patients who do poorly pretty quickly."

- did she say anything more about the 'doing poorly' ?

The answer is of course no.