Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

Diane O'Leary said:
I'm not pulling rank, and I truly don't care about getting credit - but I think advocates get used to the idea that anyone who takes a stand for medical management of ME must not be professionally credible. That's not the case anymore! I do know how these guys are thinking, because I've studied psychosomatic research in a rigorous way for so many years.
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Years of (some) medical professionals acting in bad faith against the interests of the people they claim to be helping will do that. I think there is value in examining, eventually, the traumatic effect this has had.

The psychosocial crowd just rammed their ideology through, indifferent to legitimate objections, with the full cooperation of medical institutions who failed in their most basic duty of care. That's like being in a case of wrongful imprisonment without charge and your public defender is part of the prosecution and works tirelessly to make it worse for you. I think that this would qualify as psychological abuse to some degree. It's a really messed-up situation that when described plainly and neutrally almost sounds insane because no one believes a system that exists to help people would so willingly and deliberately do the opposite for so long (even though this happened many times before).

Reality did not matter for years so the community has had to adapt, to refrain from telling the plain truth and speak in a way that takes into account that we have opponents, with more influence than all of us combined on whole medical system, who act in bad faith and will twist anything and everything we do.

I think we can finally move past this. They are ideologues, they will speak in bad faith regardless because the truth falsifies their belief system and their entire body of fake research. We can't keep adapting our language for fear it will be twisted and misrepresented. Things have changed enough, especially with the Internet everything is on official record, preserved by law and public. When the CFS sabotage happened, it mostly happened in secret, unrecorded and filed away in cabinets. Advocates had no voice then because there was no medium to speak through. Today our complaints and objections accumulate and speaking the truth has a more important long-term impact.

But it will take a while for many to adapt and there is still a lot of self-censure to overcome. It's a genuine case of mass medical PTSD.
 
@Trish @Jonathan Edwards

I agree, everyone is enthralled by PS ways of thinking/speculating about human behaviour and thought processes. One doesn't need a degree in psychology to play this game.

Professor Edwards, you know more about this than me, but I think if GET/CBT are finally struck from the NICE guidelines, the PS crowd will still be able to wield a great deal of influence with some new inappropriate "treatments" for ME.

Psychosocial practitioners have held enormous power for a very long time. Their methods of blame and separating the so called psychologically ill from the rest of us, appeals to basic human instincts. If as an added bonus, governments and industries with vested interests can save money, all the better.

Even if GET and CBT are deleted from the guidelines, nothing will have changed in the social order. We will still have eminence-based medicine, and institutions more than willing to benefit from pseudoscience.
 
Alvin said:
I just read the link and while i agree the real issue at hand is that the PACErs believe ME/CFS is psychosomatic so to them there is no risk whatsoever in forcing patients to endure treatments and when they get worse they just deny what their eyes and data tells them and manipulate their data to get the result they believe is true. To them the ends justify the means because their religious level of faith in CBT/GET simply cannot be wrong.
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And I don't really see the point in pretending that they don't. Of course they 100% do. That they are deceitful about it does not change this fact. It's really a question of potato-pothato whether they mean the disease is the belief, or the belief leads to the disease, of the belief follows the disease, of the belief sustains the disease. They. Don't. Care. The details are irrelevant, the disease models may as be a simple TBD for all they care. And of course the NICE guidelines (and the NHS course) are based on a psychosomatic model. I don't see the point in pretending otherwise just because they packaged it with nice paper and a bowtie.

The entire point of the BPS model is to pretend not be doing psychosomatic medicine while of freaking course 100% doing psychosomatic medicine. Just because they add a few extra steps and lie about their intent changes nothing and I don't see a point in pretending they mean what they say when they obviously don't. Every one of the architects of this has written extensively about their beliefs, they are clear as day: there is no disease. That they hide their true beliefs in some papers does not change that.

Of course they will twist our words. They will do that no matter what. So might as well say the plain truth.
 
Jonathan Edwards said:
Interesting points, but thinking about it I am pretty sure the paternalistic approach is pervasive in 'biomedical medicine' too. My rheumatological colleagues would not tell patients much about drugs maybe not working or not actually producing recovery. Being positive is pervasive in medicine. If you talked to people with rheumatoid arthritis attending prominent NHS clinics twenty years ago I think you would have encountered a pretty pissed-off group moaning about how little they were told and being led up the garden path. I would hope that is less so now because with biologic drugs people can be made completely well pretty quickly. I am not that confident though. Only a couple of weeks ago someone on a skylight was telling me about a friend who was pissed off with their rheumatologist ...

But there is still a huge difference, yes, and more and more I think there is a key ethical issue of active misrepresentation from the BPS crowd.
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I guess that relates to my discussion with @Diane O'Leary and my view that a lot of the important ethical problems surrounding ME/CFS cut across the psychosomatic/biomedical divide. I don't see a clear divide between the sort of psychosocial management we see from the biopsychosocial lot and the 'paternalism' that is still commonplace in UK medicine. For me, the central problem is attitudes towards informed consent from patients.

I fear that part of the problem we've had with getting medical professionals to understand the ethical problems with the way ME/CFS patients have been treated by biopsychosocial researchers/clinicians is that it's often just an exaggerated form of the more manipulative aspects that are seen as a part of the 'art' of medicine. Personally, I don't want to be someone else's art project.
 
Jonathan Edwards said:
I think things are much closer than they once were. As I see it the Cochrane exercise review can no longer be presented to the NICE committee as meaningful opinion.
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I would feel much more assured of that if the review had been properly retracted and not this weird limbo non committal status that it lies in now.

Whatever the technical status the editor in chief made it clear that he did not think it was of a standard consistent with Cochrane's requirements.
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The problem with assuming it cannot be presented to NICE as a meaningful opinion has already a contradictory precedent set by the HRA who cited it as pretty much supporting evidence for PACE.

This is the typical kind of circle jerk that repeaters can use when assessing such things. NICE could potentially claim that Cochrane is supporting evidence for PACE not solely on its own terms but also because it has been assessed by HRA.

We have no idea whats going on at Cochrane including the Tovey resigning issue and its fair to say they appear to have lost their bottle somewhat over Larun.
 
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@Binkie4

Yes, wholesale, industry-wide medical mistreatment of pwME is a human rights issue. Once people have a psychsomatic label, even life threatening issues are dismissed. PwME learn not to bother consulting medical personnel because previous experience has shown them this is often fruitless, if not painful and demeaning.
 
DokaGirl said:
Even if GET and CBT are deleted from the guidelines, nothing will have changed in the social order. We will still have eminence-based medicine, and institutions more than willing to benefit from pseudoscience.
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I think that is in a sense true. And I think it is because the general public want eminence based medicine and psychosomatic explanations. BPS is really just a funny sounding name for the popular prejudices pandered to by the editor of the Daily Mail.

But within the medical machinery a removal of CBT and GET from the NICE guidelines for ME would I think have a major impact on research funding and programme roll-out. Things do change. Fifty years ago surgeons could do what they liked in the way that it seems psychiatrists still can. But in the 1970s it became clear that making a living out of unnecessary tonsillectomies (with the occasional child death) was unethical and it came to an end. Surgeons went on doing unnecessary operations in the private sector because people wanted them but in the NHS they have been greatly reduced.

Apart from anything else it will not be possible to merge ME with MUS in the IAPT programme if the guidelines for ME no longer recommend CBT. If NICE guidelines change then the Royal College Of GPs will have to change their educational material too.
 
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large donner said:
I would feel much more assured of that if the review had been properly retracted and not this weird limbo non committal status that it lies in now.



The problem with assuming it cannot be presented to NICE as a meaningful opinion has already a precedent set by the HRA who cited it as pretty much supporting evidence for PACE.

This is the typical kind of circle jerk that repeaters can use when assessing such things. NICE could potentially claim that Cochrane is supporting evidence for PACE not solely on its own terms but also because it has been assessed by HRA.

We have no idea whats going on at Cochrane and the Tovey resigning issue and its fair to say they appear to have lost their bottle somewhat over Larun.
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FINE is the basis of the NHS training course. Being objectively wrong is not a problem to the psychosocial ideology.

Of course the psychosocial ideologues on the NICE committee will present the Cochrane review as evidence. Unless it is retracted by then, which is unlikely.

I don't see the point in pretending there will not be bad faith arguments when it is all that this has ever been. Doesn't mean it will work, but they have no reason not to try, it works every time. People who have no problem promoting something that is universally seen as pseudoscience (LP with its NLP component) as credible evidence do not care whether the evidence is right, they only care that it supports their case.

"They wouldn't dare" is not a good position to adopt. Lucy will keep yanking the football as long as she is allowed to. Their entire model is that this is not a disease and therefore there is no need for the usual concerns and ethics regarding medical advice. Rules only matter if they are enforced, which is only partially in effect here.
 
large donner said:
The problem with assuming it cannot be presented to NICE as a meaningful opinion has already a contradictory precedent set by the HRA who cited it as pretty much supporting evidence for PACE.
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Maybe that sentence should have been a bit longer, i.e. ... cannot be presented to NICE as a meaningful opinion with any chance of being taken seriously. The point being that there are at least 8 people on the NICE committee who know that it cannot be taken seriously and will say so. In fact all the people to whom it might be suggested that it is a meaningful opinion are already well aware that it is not and will say so. With luck the people who might make the suggestion are also already aware that it would fall on deaf ears.

So there is no parallel with the HRA situation where goodness knows who made the spurious decision about ethical probity.
 
Jonathan Edwards said:
Maybe that sentence should have been a bit longer, i.e. ... cannot be presented to NICE as a meaningful opinion with any chance of being taken seriously. The point being that there are at least 8 people on the NICE committee who know that it cannot be taken seriously and will say so. In fact all the people to whom it might be suggested that it is a meaningful opinion are already well aware that it is not and will say so. With luck the people who might make the suggestion are also already aware that it would fall on deaf ears.

So there is no parallel with the HRA situation where goodness knows who made the spurious decision about ethical probity.
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Taking into account this post and rvallees post above about disingenuous presenting potential to NICE it seems to come down to the same notion of ancient Greek democracy whereby whoever brings the most amount of mates along with them is the winner.

That is the problem in essence especially as the Cochrane review has not been retracted and as rvallee says above ....

FINE is the basis of the NHS training course. Being objectively wrong is not a problem to the psychosocial ideology.

Of course the psychosocial ideologues on the NICE committee will present the Cochrane review as evidence. Unless it is retracted by then, which is unlikely.
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large donner said:
it seems to come down to the same notion of ancient Greek democracy whereby whoever brings the most amount of mates along with them is the winner.
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That may well be true. The balance of mates on the committee may be fairly even.

large donner said:
That is the problem in essence especially as the Cochrane review has not been retracted
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No, but everyone on the committee is likely to be brought up to speed on the fact that Cochrane decided to retract it but discovered that their rules did not allow this if the authors refused. People like Luis Nacul, Caroline Kingdon, Willy Weir, Charles Shepherd, Adam Lowe, Sally Burch, Saran Bonser, Ilora Findlay and Peter Barry are not so dim not realise that the lack of retraction is a mere technicality. I think we should credit these people at least with some ability to understand the problem! The others whose names I forget are similarly going to be perfectly aware of this.

FINE is the basis of the NHS training course. Being objectively wrong is not a problem to the psychosocial ideology.

Indeed it is not a problem within the circle of people who support the ideology. But it is very definitely a problem outside that circle. Some people seem to be assuming that 'NICE' is of a BPS persuasion. 'NICE' has no persuasion beyond saving money and maybe not rocking boats. The outcome of the deliberations is by no means obvious but I don't think it helps to ascribe views to people without good reason.
 
Jonathan Edwards said:
People like Luis Nacul, Caroline Kingdon, Willy Weir, Charles Shepherd, Adam Lowe, Sally Burch, Saran Bonser, Ilora Findlay and Peter Barry are not so dim not realise that the lack of retraction is a mere technicality. I think we should credit these people at least with some ability to understand the problem! The others whose names I forget are similarly going to be perfectly aware of this.
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Logical thinkers as those named above are not the problem, as far as I know the people named above. Its the other "ancient Greeks" who will be present on any show of hands.
 
rvallee said:
Years of (some) medical professionals acting in bad faith against the interests of the people they claim to be helping will do that. I think there is value in examining, eventually, the traumatic effect this has had.

The psychosocial crowd just rammed their ideology through, indifferent to legitimate objections, with the full cooperation of medical institutions who failed in their most basic duty of care. That's like being in a case of wrongful imprisonment without charge and your public defender is part of the prosecution and works tirelessly to make it worse for you. I think that this would qualify as psychological abuse to some degree. It's a really messed-up situation that when described plainly and neutrally almost sounds insane because no one believes a system that exists to help people would so willingly and deliberately do the opposite for so long (even though this happened many times before).

Reality did not matter for years so the community has had to adapt, to refrain from telling the plain truth and speak in a way that takes into account that we have opponents, with more influence than all of us combined on whole medical system, who act in bad faith and will twist anything and everything we do.

I think we can finally move past this. They are ideologues, they will speak in bad faith regardless because the truth falsifies their belief system and their entire body of fake research. We can't keep adapting our language for fear it will be twisted and misrepresented. Things have changed enough, especially with the Internet everything is on official record, preserved by law and public. When the CFS sabotage happened, it mostly happened in secret, unrecorded and filed away in cabinets. Advocates had no voice then because there was no medium to speak through. Today our complaints and objections accumulate and speaking the truth has a more important long-term impact.

But it will take a while for many to adapt and there is still a lot of self-censure to overcome. It's a genuine case of mass medical PTSD.
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Wow, I think this is so important @rvallee. First, "we can't keep adapting our language for fear it will be twisted and misrepresented". You know I'm with you on that. They don't mince words with each other in research, so there's really no need for us to play that game.

Second, I'm sure you're right that a unique form of PTSD that arises when you're denied medical care for serious illness (in addition to the many silent forms of medical shaming in the exam room). It is just like a case of wrongful imprisonment, without a defender. And you're exactly right that when you discuss it in simple and direct terms the system is setup to make that sound insane. No one could endure this for years, along with serious illness and all its threats, and not be psychologically harmed by it.

I like to think that in the not too distant future medicine is going to recognize the harm it's done with this recklessness about unexplained symptoms - not just the medical harms, but the very serious, very unique form of psychological harm that we've all had to face. I like to think it will be like when the world first recognized unethical research studies - like the Tuskegee study, where the US government tracked black men with syphilis for 40 years without treating them just to see what happens when the disease runs its course. When the world recognized that this kind of thing was occurring, that was the start of research ethics - the whole IRB system we have in place now. In many ways it was also the start of bioethics, because it was suddenly clear that it's crazy to trust medical professionals without any oversight.

Thanks for reminding me about this. We are all suffering from shell shock.
 
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