K Pressin and hepapressin treatment for ME CFS(?) - Dr Derek Enlander

[Jonathan Edwards]

Looks like it helped a very good percentage of people in the trial.

So the question is why, if this was a real effect of the treatment, was nobody persuaded to turn it into a marketable product? Something does not add up.

 

[Violeta]

I wonder if beef liver works as well.
I'll have to go through the reviews after mowing the lawn.

 

[Jonathan Edwards]

Best to avoid polar bear liver. It is poisonous.

 

[Peter T]

Best to avoid polar bear liver. It is poisonous.

My grandfather warned me about polar bear liver when I was a child, so I have scrupulously avoided it my whole life.

 

[Sisyphus]

I wonder if beef liver works as well.
I'll have to go through the reviews after mowing the lawn.

So the question is why, if this was a real effect of the treatment, was nobody persuaded to turn it into a marketable product? Something does not add up.

 

[Sisyphus]

There is no self-executing process that turns treatments with some degree of effectiveness for our disease into a patented, FDA approved, profitable and thus marketable product.

 

[Sisyphus]

I think it was the website for Hepapressin itself. I don't know what other preparation Enlander used.

I did not call Enlander a scammer but promotionof this substance has all the hallmarks of a scam. Lots of people have been genuinely concerned with treating ME/CFS but if they do so off label without doing proper trials I am afraid I see no merit in what they do. We have no evidence as far as I know that Dr Enlander has used effective treatments. As far as I know we have none.

I appreciate members' loyalty to physicians who take an interest but the off-label usage of drugs has held up real treatment development for decades now and I think it is time to push hard back against it. I was in the business of drug development myself and am well aware of the issues involved.

This requires a considered response, which I'm unable to do immediately. Ironically, the lack of a treatment which in my experience (as described in my prior post) had results for me substantially decreases my already small windows of physical and cognitive functioning, thus I cannot respond in a timely manner.

 

[Violeta]

I did not call Enlander a scammer but promotionof this substance has all the hallmarks of a scam.

The promoter of a substance that "you consider to be have all the hallmarks of " a scam, is a scammer.

 

[Yann04]

The promoter of a substance that "you consider to be have all the hallmarks of " a scam, is a scammer.

Disagree, many alt med treatments have loads of scam hallmarks, but some alt med practitioners are genuinely lovely people with a strong conviction that they are helping their patients.

A “scammer” implies the person is malicious which isn’t the case necessarily of some doctors in the alt med world even if what they promote has loads of hallmarks of scams.

 

[Utsikt]

There is no self-executing process that turns treatments with some degree of effectiveness for our disease into a patented, FDA approved, profitable and thus marketable product.

The market is very, very, very large, so you don’t need a patent to make money on it. You see that with pharmaceutical companies that make biosimilars for the competitor’s products when their patents run out.

 

[Jonathan Edwards]

There is no self-executing process but having been in the position of having to persuade a drug company to license a drug I had found effective, it was very easy. The dollar signs rang up in their eyes. But that is probably because I had convincing data. If Dr Enlander had produced convincing data I see no reason why there would have been a problem.

Arguments about how hard it is to do trials are make believe. Bin there done that.

 

[Jonathan Edwards]

The promoter of a substance that "you consider to be have all the hallmarks of " a scam, is a scammer.

They might well be but as said above it does not follow and I could not possibly comment.