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

[rvallee]

'NICE' has no persuasion beyond saving money and maybe not rocking boats

But NICE clearly defer to eminence and I don't see them challenging Wessely and his acolytes, who can make their lives miserable. They are absolutely not beneath that. It would be a huge paradigm shift that means eminent people who are still very influential were completely wrong despite being told explicitly so by the very people who suffered the consequences. Those concerns were brushed off as meaningless whining of butthurt people pouting about being told they aren't really sick. A lot was put on the line to push the paradigm against legitimate objections and without any credible evidence.

As a "non-disease", the usual rules and ethics concerns are irrelevant because they wouldn't be enforced since almost nobody cares about a bunch of tired people. Don't underestimate the lengths people will go for self-preservation. This is not a normal situation. It's not unique, but the usual standards and common sense don't apply here since too many people bought the line that none of this is even medically relevant at all. "There is no disease" is as explicit as it gets, it doesn't matter that supporters pretend otherwise. This is way more political than medical.

 

[rvallee]

I am not suffering from shell shock.

Not necessarily individually. It's collective, the way we don't have a choice to play nice with people who argue in bad faith and (mostly) restrain our language out of legitimate fear that it will be used against us, twisted and focused on tone, ignoring the substance.

One slip-up can backfire, hurt efforts for years to come because that's how rare occasions for change are. Meanwhile our ideologically-guided saboteurs make up all sort of ridiculous bullshit, promote ridiculous research, make deceitful arguments in bad faith and sometimes even gloat at failure because they hold all the power. We are damned if we do and damned if we don't.

By they above I mean the ideologues. Meanwhile most medical professionals just defer to the ideologues and take everything they say at face value, accepting that we are behaving badly and need to be put in our place. Whatever we say is wrong, no matter how solid our arguments. We are a discriminated vulnerable population that virtually no one wants to protect because the very institutions that exist to protect us stand against our interests.

That will mess up anyone, no matter the nature of the circumstances.

 

[large donner]

Not necessarily individually. It's collective, the way we don't have a choice to play nice with people who argue in bad faith and (mostly) restrain our language out of legitimate fear that it will be used against us, twisted and focused on tone, ignoring the substance......

That's not the definition of shell shock or PTSD. We should all know how important it is to define our terms correctly.

That will mess up anyone, no matter the nature of the circumstances.

Neither am I "messed up". The messed up ones are on the opposing side and I refuse to refer to my experiencing of them as utterly deluded, as me being messed up. I have maintained my logic throughout the whole process so have most of us here.

Others peoples stupidity is just that, it belongs to them and certainly doesn't need to be medicalised on our behalf by ourselves and especially not on behalf of others experiencing the same stupidity.

The interactions I have learned to chose not to have with the medical profession for example are born out of my logical thinking of a factual situation not because of me being messed up or having "PTSD or shellshock".

The complaining, explaining and frustrations one feels and articulates about experiencing such stupidity are born out of logical processes being at play on my behalf.

If I was messed up I wouldn't be able to see through their bullshit and would be presenting myself to them on a regular basis rather than learning to avoid them like the plague. Pretty sound psychological processes at play I would say. Its their effing mess not mine.

 

[large donner]

Diane O'Leary said:

No one could endure this for years, along with serious illness and all its threats, and not be psychologically harmed by it.

A psychology being impacted does not automatically equate to an individual being psychologically harmed.

Learning by experiencing impacts on our psychological processes actions and experiences. Its a fairly loose use of terms to impose this notion of being "psychologically harmed" on others as factual and/or even meaningful, especially as the use of the term psychology has been invoked.

 

[Diane O'Leary]

I'm not sure there's any tie between being psychologically harmed by an unjust situation and losing your reason. I mean, I don't think that's in any way implied. People who've experienced injustice are definitely not illogical as a rule - if anything, as you say, this kind of thing often makes your sense of the facts crystal clear.

I can see how the idea of medicalization would feel wrong. I appreciate that point (though for myself there's some comfort in it). Maybe it's best just to note that there's been an extended experience of injustice, and it's shared by the group. People handle that challenge in all sorts of ways - all of them good.

 

[large donner]

I'm not sure there's any tie between being psychologically harmed by an unjust situation and losing your reason. I mean, I don't think that's in any way implied. People who've experienced injustice are definitely not illogical as a rule - if anything, as you say, this kind of thing often makes your sense of the facts crystal clear.

I can see how the idea of medicalization would feel wrong. I appreciate that point (though for myself there's some comfort in it). Maybe it's best just to note that there's been an extended experience of injustice, and it's shared by the group. People handle that challenge in all sorts of ways - all of them good.

I agree with most of that Diane but it wasn't me who termed the phrase "messed up" here and equated it to all of us in the sense that we must all be a bit messed up because of our experiences.

It also wasn't me who claimed on behalf of all of us that we are all suffering shell shock or PTSD from the fall out from this and it wasn't me who said this ...

No one could endure this for years, along with serious illness and all its threats, and not be psychologically harmed by it.

It doesn't just come down to whether we can maintain our logic.

 

[Binkie4]

That may well be true. The balance of mates on the committee may be fairly even.

@Jonathan Edwards

Charles Shepherd doesn’t have a vote, does he? Nor Jonathan Edwards.

So we are two down there if voting is a part of this process. Two?? more appointments to be made. Not sure that the Committee is looking evenly balanced at all.

It also depends on the Committee judging the evidence fairly which, as Pace has shown, is not likely.

 

[Diane O'Leary]

That's fair enough. It's not good to suggest that people who've had to deal with this injustice are messed up or psychologically harmed. Really that's the idea we're fighting against, so I can see that it's jarring. For myself, it was a moment of truth when I really understood that what my doctors had been doing was psychologically harmful. Maybe that was the moment when I realized I was not messed up. (Words are so tricky.)

 

[large donner]

@Jonathan Edwards

Charles Shepherd doesn’t have a vote, does he? Nor Jonathan Edwards.

So we are two down there if voting is a part of this process. Two?? more appointments to be made. Not sure that the Committee is looking evenly balanced at all.

It also depends on the Committee judging the evidence fairly which, as Pace has shown, is not likely.

Yes that was partly my thinking when I read that post too. Its not the presenters that necessarily get to have the final say.

 

[large donner]

Referring to the NICE review future outcome

So there is no parallel with the HRA situation where goodness knows who made the spurious decision about ethical probity.

Apart from the parallel of the parallel universe we have all experienced for decades wherby the BPS crowd have pumped out years of unchallenged nonsense, with their mates as peer reviewers and practically every influential governmental department and insurance company and journals like the Lancet and the BMJ and now the HRA in their pockets.

Unfortunately I would say that IS the parallel.

 

[Alvin]

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.

I agree, we should not coddle them.
Their malfeasance is proven and its horrifying.
The worst part is that they are so sure they are not wrong they commit escalating levels of coercion to protect themselves.

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.

They think we have a form of Munchausen syndrome. And that that parents have Munchausen by proxy.
They believe they are saving us from ourselves, the threats, the forced imprisonment and forced exercise while patients deteriorate before their eyes and teaching us to deny reality is for our own good.

Of course they will twist our words. They will do that no matter what. So might as well say the plain truth.

Given their actions they cannot admit they are wrong and they will use any means from victim blaming to lies to threats against colleagues in order to maintain their fraud.

 

[duncan]

They think we have a form of Munchausen syndrome. And that that parents have Munchausen by proxy.
They believe they are saving us from ourselves

I'd wager their upper echelon doesn't believe that for a nanosecond.

 

[Alvin]

I'd wager their upper echelon doesn't believe that for a nanosecond.

No bet here

 

[Jonathan Edwards]

But NICE clearly defer to eminence and I don't see them challenging Wessely and his acolytes, who can make their lives miserable.

As I said, the outcome is not certain.

 

[Jonathan Edwards]

So we are two down there if voting is a part of this process.

I was taking that into account. The people I did not mention are quite varied in their views I understand.

It also depends on the Committee judging the evidence fairly which, as Pace has shown, is not likely.

I have confidence that a good number of people on the committee will judge fairly. It is also worth remembering that those with a personal interest in a therapy are supposed to sit out decisions on that therapy.

I have no idea what will actually happen but I think there is a reasonable chance a sensible decision will be made.

 

[Barry]

As I see it the Cochrane exercise review can no longer be presented to the NICE committee as meaningful opinion. 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.

That is very significant - and heartening - I do agree. No matter what light the BPS people might try to cast it in, the most crucial thing at this moment is the implications for the new NICE guideline.

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.

Sorry, I fully appreciate @Jonathan Edwards is much more qualified than myself on this, but I can't resist also chipping in. I don't think it would be as simple as that for them now. Even they would have to do some research "research" first and provide some evidence, especially for NICE. Given the state of play now, they would find it much harder to run their trials so unscientifically, and publish results so "creatively" as they did with PACE. They will be under massive scrutiny.

 

[rvallee]

As I said, the outcome is not certain.

I agree 100%. Still worth taking it seriously as well, even if it's just to have it all on record (again). There just should be no illusions that it will be played fairly or that reasoned arguments will tip the scale from its position of imbalance. It's important that the process be approached with that in mind, that it's closer to a hostage negotiation with (a majority of) adversaries impervious to reason than cooperation with allies who share the interests of beneficiaries.

 

[Barry]

'NICE' has no persuasion beyond saving money and maybe not rocking boats

Does this include accounting for possible future lawsuits against the NHS if they administer NICE recommended treatments that had strong indications of harm at the time the NICE guideline was published?

 

[Barry]

I may well be wrong, but I thought the NICE committee had already started meeting?

Pretty sure @large donner means it is due to be completed next year.

I agree 100%. Still worth taking it seriously as well, even if it's just to have it all on record (again). There just should be no illusions that it will be played fairly or that reasoned arguments will tip the scale from its position of imbalance. It's important that the process be approached with that in mind, that it's closer to a hostage negotiation with (a majority of) adversaries impervious to reason than cooperation with allies who share the interests of beneficiaries.

Basically a race is not won until over the finish line, and you don't let up until you are over that line.

 

[Snow Leopard]

I don't think that can be considered relevant. Treatment of rheumatoid arthritis or cancer frequently involves 3 months of time effort and money with no results. The difference is that adequate trials have shown that the chances of benefit are good enough to make that a reasonable risk.

Whereas in CFS there isn't enough evidence from adequate trials, yet patients are told it will help anyway...