David Tuller: Trial By Error: Steve Brine's Troubling Claim in Parliamentary Debate on ME

She was in fact a co-author of the FINE trial, along with others on the METRIC team. Let’s remember the FINE produced null results for both of its primary outcomes
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I have previously described this as an ouroboros of bullshit but I take it back. It's more appropriate to describe it as a human centipede of delusional bullshit, where some chains in the centipede clearly being occupied by the same people in a reality-breaking symbiosis, maybe some quantum superposition of malice and incompetence.

I mean, let's separate the steps here:
  1. Group runs a trial
  2. Trial is a failure, even in its own conclusion
  3. Group who ran trial is tasked to build guidelines based on trial that failed
  4. Guidelines are official policy despite everyone involved knowing it is a total failure
We are beyond malpractice. People need to go to prison for this, this nonsense has to stop.
 
@dave30th

Thank you for exposing this hidden enclave of erroneous theory about ME. Another one!

And, thank you to members who unearthed this course.

Some forum members have discussed building a
free course to counteract the incorrect and misleading
information in METRIC. That's a great idea.

This plan aside, the idea that physicians are fed this stuff that they then foist upon very physically ill people is harrowing.
 
DokaGirl said:
@rvallee

I like your thinking. We are making headway, but legal action would make 'em sit up and take notice.
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It's pretty much inevitable. It's just a question of when the levee breaks. It may be years away, but it will. Once it does there will be much scrambling and throwing dead weight in front of very large double-decker buses. There will be attempts at presenting sacrificial lambs but it won't be good enough. This is rot at the very heart of the institutions of medicine, it's not the kind of thing that happens with the dogged pursuit of a few people, the whole system has to buy in on it and it did.

I think Monaghan is entirely correct. It seems impossible now but once this explodes it will be a sight to behold. The scandal may not be equal to the AIDS crisis in terms of direct deaths, but the malice may be even worse since this isn't just refusing to do something, it's a deliberate act of sabotage of all efforts at making progress.
 
rvallee said:
I mean, let's separate the steps here:
  1. Group runs a trial
  2. Trial is a failure, even in its own conclusion
  3. Group who ran trial is tasked to build guidelines based on trial that failed
  4. Guidelines are official policy despite everyone involved knowing it is a total failure
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yeah--this would be shocking in a normal universe. In BPS-world, I guess it's normal.
 
The link to the RCGP site does not work at the moment. I wonder if that is generic or just for this document.

It really is a disaster that the recent fashion for dumbing down everything in medical education has led to something as bad as this. This comes from a cottage industry that is parasitising UK medicine with RCGP cheering on from the sidelines.
 
Thank you so much for this. I'm always so grateful for your role in bringing the truth and illuminating (time after time) what others would keep murky and dark. You are invaluable to ME sufferers everywhere.
We are so fortunate to have you using your very considerable gifts on our behalf and it is so uplifting to read the truth shining brightly from your writing.
 
Overall, this RCGP document endorses the shared decision-making concept. But there are exceptions–among them when the patient has the illness referred to by the RCGP as “complex psychological problems such as Chronic Fatigue Syndrome”
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Something I've been thinking for a while but this is declaration of mental incompetence by implication. ME patients are assumed to be mentally confused and as such incapable of making decisions for themselves, as a broad stroke and without even an attempt at making individual assessment, something which screams of bad ethics considering how many patients are misdiagnosed because of the lousy guidelines.

Normally there is a process to declare someone mentally unfit. There has to be a signature from a professional who certifies "yes, I judge that this person is incapable of making informed decisions about their own medical care". It is a medico-legal process that cannot be bypassed precisely because historically this has been a massive failure and systematically abused.

But in the case of ME patients it is merely implied and final. No appeal. No signature. No one actually certifies or takes professional responsibility. How can that even be legal? All the weight and force of a declaration of mental incompetence merely implied, without a trace, without accountability, without the ability to appeal.

This also possibly explains the weird thing about informed consent and ethical approval with the Crawley-BMJ pediatric trials where ethical review was essentially waived off. Are ME patients officially, as a broad population rather than in individual cases, recognized by the NHS as mentally incapable of informed consent and this is why it was waived off?

This is an ethical loophole that is being exploited in exactly the way the very notion of informed consent and official declaration of mental incompetence exists to avoid. I think the scandal just got ten feet deeper.
 
Great stuff @dave30th.

The quote of an RCGP submission saying 'yes, we support shared decision-making, but not for those people with CFS who don't know what's best for them' was particularly gobsmacking. Although a 2012 document, it slaughters the idea being put about that people with ME and parents of children with ME in the UK are freely able to choose to avoid CBT and GET.

Overall, this RCGP document endorses the shared decision-making concept. But there are exceptions–among them when the patient has the illness referred to by the RCGP as “complex psychological problems such as Chronic Fatigue Syndrome”:

"....And what of patients with complex psychological problems, such as Chronic Fatigue Syndrome, where a choice of treatment might do more harm than good?”

In other words, the RCGP clearly views ME as a psychiatric or psychological disorder. And the organization singles out people with the illness at the core of METRIC–and last week’s parliamentary debate–as too disturbed or irrational to be allowed to make their own treatment choices. The apparent justification for depriving them of this fundamental right is that the RCGP has determined that to grant it would be harmful to their health. Does Brine share this view of ME patients?
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I think it's an important point for people preparing the NICE Guidelines to note. if the beliefs of medical professionals that CFS is unquestionably a 'complex psychological problem' are not directly challenged, very little will change.
 
Hutan said:
The quote of an RCGP submission saying 'yes, we support shared decision-making, but not for those people with CFS who don't know what's best for them' was particularly gobsmacking.
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Brine needs to be put on the spot about this. Assuming he agrees it is not an acceptable approach, he will have to explain why a training program from the organization that endorses it should be praised for addressing "misconceptions" about the illness.
 
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