Cochrane backtracking

Yes, this concerns me too. Patients believing hype about research, which doesn’t necessarily match the science itself; looking for a saviour. But also the flip side, crucifying people when they make a mistake or a questionable decision. As a community, we are at times so desperate that things tend to become absolutist and reactionary which, whilst understandable, isn’t usually very helpful.

 

Yes, I agree. That is a bugbear of mine too. It gives patients false hope, which I think is unethical.

 

Yeahhhh that's what I meant by:

I think people who are, by nature, authoritarian, fall into a frame of hero-worship. And when their hero disappoints them, which invariably happens, they feel betrayed. It can't have been their mistake so clearly they've been purposely fooled.

And then....

Watch out.

 

I think you're right.

Even for that Aussie group who I feel are the worst offenders, though, I do recognize that hype is sort of how they get more funding. If their PR group were like, "hey, we maybe kind of found a thing, need to repeat it in a larger group" that doesn't excite the gov't or the VCs to fund the next study.

And this doesn't explain at all how movie stars and pop singers go through precisely the same process of being elevated by the public and then torn down in precisely the same way. (Taylor Swift, anyone?)

So there's something in human nature here.

 

Agree with your whole post but was thinking about the same point Jaime brought up. They may think that the Hype will better their chance at funding. So this would put the blame on funding bodies and their need to have 'every dollar/pound/whatever count'. All the funding should yield positive results. The results should always be spectacular. This is a systemic problem.

And I cannot say this enough times, IMO, money is not scarce. It has just been poorly allocated. And I don't mean just within the funding body.

It is so difficult for all of us to hear that someone has made a breakthrough and then hear only the sound of crickets afterward.

 

Fool me once shame on you, fool me twice shame on me
A scientist's academic reputation influences how trusted they are so if they blow it they should not be considered credible in the future. A scientist should have to have enough of a good reputation to get funding at all.
If funding bodies think the biggest grifter should get the most money then we should replace them with people with a brain.

 

And, sadly, because it has been such a successful strategy to secure funding, they’re unlikely to change their approach.

 

Precisely. They keep getting funded for tiny studies, their names keep showing up on papers, ME patients new to the game heap them with praise, and the cycle starts again.

 

Failure is a normal part of the scientific process. I see no problem with funding continued failure. Lots of success happened following decades of failure, sometimes just because technology wasn't ready, something which doesn't apply since Excel aside to help calculations, they could have done the exact same work 150 years ago.

But here what we have is that no one was following evidence that surprised them. Their hypothesis was wholly fabricated out of their asses and soundly rejected by patients, in large part because it fundamentally contradicted the primary symptom of this disease and the overwhelming experience of patients.

But they continued doing this work for 3 decades, always through the objection of patients, patient organisations and competent experts telling them they were completely out of line, wasting resources and causing mass confusion. Now when someone does that doggedly because of underlying evidence showing something, it's a whole other matter.

But here they recycled already discredited, unfalsifiable hypotheses despite the supposed beneficiaries of this research insisting it was fundamentally misguided and harmful to them. It's not failure that is at fault, it's being completely indifferent to the most basic goal of medicine: to help people suffering from disease.

They're not pursuing some wild theory of physics. There are consequences to failure in medicine. It may be part of the process, but lessons must be learned from failure. They did not. They continue to reject their failure and that thousands have testified to having been personally harmed. They use political influence to evade accountability and continue promoting harmful treatment that is wasteful and creates a state of hopelessness in patients.

Failure is the least of their numerous faults. Hubris, amorality and being wholly indifferent to the hippocratic oath are much greater faults than having falsified their own hypothesis. Failure is fine in science. Refusing to acknowledge it is the exact opposite of what science is all about.

 

I agree, if we don't try because we fear failure then we can't succeed because we gave up before even starting the journey.
As Thomas Edison once said "I have not failed. I've just found 10,000 ways that won't work."
Thats fine if one learns from failures and can try something else to work towards ultimate success.
But when your goal is to deceive then your acting in bad faith. That is what i am opposed to

I suspect they believe they are heroic trailblazers, their theory failed but instead of accepting it they assumed they were right and manipulated their results to get the outcome they wanted. And when we would not go along with their fraud they turned on us using their credentials to protect themselves and get lies put into clinical practice. Then they blamed victims for not recovering from their harmful treatments.
This is malice even if they deny it to themselves and choose to believe it was for a greater good

This is why they should face legal consequences. They didn't fail and learn from it, they failed then covered it up by manipulating data and harmed patients while fooling themselves and other physicians with lies.
Shysters should also face consequences when they harm or defraud others.

I agree and this is what i oppose, when you have shown your a fraudster or shyster you should not be rewarded for it.

Yes, they did not act in good faith and harming patients even if done by lying to oneself is simply not acceptable.
Failure is a part of science to learn from, malice and inflicting harm is unethical and should face legal sanction.

In many ways we fundamentally agree, what i am saying is that malice should not be rewarded. If we reward malice then we will get more of it. Thats bad for patients.

 

this.

[edited per thoreau.]

 

I'm confused about what you are saying, can you elaborate?