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

We are making headway under our own steam, and with @dave30th's work for us which is a wonderful gift!

However, if progress is too slow, and many more could be harmed, there is always legal action, which @rvallee, and I think many others would agree is inevitable.


In the late 1980s I requested copies of my lab work, and was refused, as this was the property of the physician, and I was not privy to it.


Things can happen with legal action: in 1992 the Supreme Court of Canada ruled that patients have a right to see, and copy their files:


A patient made a request to her doctor for copies of the contents of her complete medical file. The doctor delivered copies of all notes, memoranda and reports she had prepared herself but refused to produce copies of consultants' reports and records she had received from other physicians who had previously treated the patient, stating that they were the property of those physicians and that it would be unethical for her to release them. She suggested to her patient that she contact the other physicians for release of their records. The patient's application in the Court of Queen's Bench for an order directing her doctor to provide a copy of her entire medical file was granted. A majority of the Court of Appeal affirmed the judgment.


Held: The appeal should be dismissed.


In the absence of legislation, a patient is entitled, upon request, to examine and copy all information in her medical records which the physician considered in administering advice or treatment, including records prepared by other doctors that the physician may have received. Access does not extend to information arising outside the doctor‑patient relationship. The patient is not entitled to the records themselves. The physical medical records of the patient belong to the physician.

https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/884/index.do
 
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.



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.


Excellent point, @Hutan. This is outpatient committal. Forcing pwME to undergo treatment; a very disturbing concept. What are the rules in the UK about this? Likely, the rules say doctors can force this treatment on pwME, as that loophole would probably have been attended to by the BPS crowd.

I naively ask: what happened to freedom, human rights? The many facets of this as an enormous human rights issue just keep revealing themselves.

Edit: human rights scandal
 
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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.

@rvallee

I liked this post, but it raises questions about how far the state would go with this belief as regards pwME being able to manage their own affairs.

Declaring someone mentally unfit, mentally incompetent, I believe means someone else is appointed to manage the person's affairs, or the state steps in: government trustees/guardians. People deemed mentally unfit/incompetent cannot handle finances, sign important documents, make important decisions and so on. How far would the state go with this?

I say this tongue-in-cheek: how about state housing as the mentally challenged have? Free housing, free meals - someone else cooks and cleans, free field trips.....hmm....
 
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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.
Note that the legal processes are under review in UK. The legal input is effectively being downgraded as i understand it ( may becsrong)
 
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.

This is something I have recently worked into a report. In all other branches of medicine a treatment has to be presented with an honest account of its benefits and risks, so that the patient can make an informed decision to partake. That does not seem to apply to ME.
 
I just realized that the PACE authors are now probably living in fear of real consequences, because we're very close to the UK government waking up and realizing that it has been manipulated and lied to by dishonest researchers.
Given the research seems to underpin IAPT andvthe rebranding of MUS and FND i fear the extent of this is akin to the banking crash and the system is simply " too big to fail"
 
New blog post from David Tuller: My Letter to Professor Chew-Graham About METRIC

Earlier this evening, I sent the following e-mail to Carolyn Crew-Graham, a professor of general practice research at Keele University. Professor Chew-Graham is the lead author of METRIC, the atrocious online training course hailed last week by Steve Brine MP as addressing “misconceptions” about the illness variously called ME, CFS, CFS/ME and ME/CFS.
 
Presumably Steve Brine's endorsement of the RCGP training package was not based on any first hand knowledge. The statement would either be based on someone else's briefing or have been written for him.

Is there anything to be gained from asking whose views his statement represents? Would the source be a civil servant in the Dept of Health or an external source such as the RCGP?

In relation to the rewriting of the NICE guidelines, would it help know who is informing the Government's beliefs/perceptions?
 
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Yes, but it did fail in the banking case - which is I guess what you meant.
Did they fail - they were propped up with taxpayers money and allowed to continue in much the same vein, with an Elastoplast of debt to capital ratio tweaking.

No significant changes to operational methods, no split of casino banking. Enough superficial soundbites to pacify most people and avoid headlines. No rules on electronic money creation .

The king is dead - long live the king...
 
How far would the state go with this?

That's the point. They don't because any proper assessment would quickly show this is not relevant at all here. It is not a credible claim, hence why it is merely by implication, rather than actually processed.

But more importantly an assessment cannot be a broad stroke, it is a personal evaluation, not one fobbed off on an entire patient population. That is, once more, not how any of this works.
 
This is something I have recently worked into a report. In all other branches of medicine a treatment has to be presented with an honest account of its benefits and risks, so that the patient can make an informed decision to partake. That does not seem to apply to ME.

And particularly breaking apart Brine's statement about patients having the right to refuse treatment. Apparently... they don't entirely. Not officially, anyway.

Given the nature of how governments are responsible before parliament, this was not an off-the-cuff statement, it was prepared and vetted by staff and the position of the health department.
 
I just realized that the PACE authors are now probably living in fear of real consequences, because we're very close to the UK government waking up and realizing that it has been manipulated and lied to by dishonest researchers.

That could certainly explain some of White's friend's histrionics. It's a pretty big hole they have dug themselves into and there is no coming out of it without accepting responsibility, blame and consequences.

Or maybe not. But if not that's quite a coincidence.
 
I just realized that the PACE authors are now probably living in fear of real consequences, because we're very close to the UK government waking up and realizing that it has been manipulated and lied to by dishonest researchers.
Unless of course the government has happily turned a blind (or even no-so-blind) eye over the years, if the end goal is simply to save the hard-pressed NHS money, no matter what the human cost.
 
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