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

I see that comments are allowed, @Jonathan Edwards, @dave30th, @Tom Kindlon, @Carolyn Wilshire...

 

Wonderful! Thanks for raising the issue @Diane O'Leary.

This is a great quote:

 

Yep.

 

«Evidence-based medicine is driven by the effort to minimize medical risk. In the area of ME/CFS, however, it has long been routine for psychosomatic research to proceed as if medical risk can be ignored, as if it simply is not possible that patients with this poorly understood condition are suffering from a biomedical disease. That oversight can no longer be maintained in credible debate and research.»

The statement above is so important and worth stressing. Eminence-based medicine is just the opposite Evidence-based medicine and minimizing of medical risk. One thing is the BPS-brigades crusade on behalf of GET and CBT, its just plain madness. But if it only was that. The scary part are truly the big medical risks when promoting these interventions, especially GET. And CBT is not risk free, in the sense that patients that already are doing their very best, challenging and facing the disease and taking the consequences on a daily basis, are misled and «brainwashed "to believe that they should do even more.

The so-called treatment debate is horrific in itself, and focus should rightly be on the medical risks of these interventions. How can these people still continue to promote and oversell interventions that hurt patients with enormous consequences? Where are medicine in general, where are the mechanisms that takes care of pseudoscience?

 

Diane and I have agreed to differ over this. While I think all publicity about the debate is good because we need more people within medicine to think about it, virtually every point Diane makes is, I think, off target.

The IOM report has not changed the debate in my view. The problems with poorly validated treatments were understood before and still are. ME is a biological disorder whether or not you view it as metabolic or psychiatric. My own view is that the mental/physical debate is the old debate that we are now getting beyond.

The reason for changing guidelines is to ensure treatments are evidence based. Whether or not they are based on one theory or another is not something that should come into either the medical or the ethical equation.

The old NICE guidelines do not deny access to biomedical care. Denial of access has always been a service provision issue, not a guideline issue. Nobody is suggesting changing guidelines in terms of changing rules of access to medical care and nor should they be. More emphasis on diagnostic review is being considered and is likely to be accepted without argument but the guidelines never denied access to this.

The real debate is about something very different - whether or not certain therapist-delivered treatments (one psychological and one physical) are properly evidence based. The IOM report has set an interesting precedent in saying no but it clear to me that the arguments used to base the decision are the right ones.

 

Years ago I remember hearing about a study that concluded that morality was contextual. Now I see examples of it everywhere.

 

*cough* Peptic ulcers *cough*

Literally the same mistake, for the same reasons, argued with the same illogical made-up arguments. The ideologues currently promoting the psychosomatic model of ME would have argued exactly the same about ulcers, ranting about whiners who just don't like being told they're faking their illness.

The fact that the current quintessential psychosomatic condition faces the same criticism and objections as the previous quintessential psychosomatic condition should be sufficient to put a hard stop on the entire field.

This is not a serious area of inquiry and it needs to be entirely shelved for a few decades. Bring it back much later once the research has actually been done to figure those conditions, if you can figure out how to actually falsify your hypotheses (or bother making some in the first place). I guarantee 99% of so-called psychosomatic patients will suddenly disappeared, as they have in the past.

 

Can PACE-type CBT and GET be described as a psychological and physical respectively? I know what you mean but are they not both psychology therapies intended to alter physical behaviour?

To me, the interesting ethical questions are:

1) Is it ethical to try to convince patients that their illness is reversible by their own efforts (SW’s CBT model) in the absence of any evidence which supports that belief?

2) Is it ethical to conduct a clinical trial which requires the participants to be persuaded of the efficacy of the treatment they are being given, when, as evidenced by the fact that it is being trialled, the efficacy of treatment must be uncertain.

3) Can it ever be ethical for anyone – and medical professionals in particular – to put what Cochrane founder Hilda Bastian described as a “massive effort” into trying to discredit an entire patient community with a “collective ad hominem attack”, based on the alleged actions of a small number of individuals?

I am hoping that Hilda, Diane or someone else may be persuaded to write more about these questions.

 

I agree that raising doubts about CBT and GET for ME have major implications for the CBT and GET industry. But whether ME has served as a quintessentially psychosomatic disorder or not I am not sure and am not sure it matters. We do not know what ME is. The useful debate is not about that. It is about whether CBT and GET are useful treatments.

The biopsychosocial view of ME is quite different from the typical account of 'psychosomatic' complaints like childhood abdominal pain. OK the BPS people like to publish in a journal of psychosomatic research but I don't think ME was ever quintessentially psychosomatic. The idea is that unhelpful beliefs lead to behaviours that give rise to symptoms because of deconditioning. In childhood abdominal pan the pain is supposed to arise from emotional conflict or something.

I think the constant contrasting of 'biomedical' with psychological or psychosomatic is unhelpful. If there are such things as psychosomatic illnesses then they come under biology and biomedicine as well. This is a lay distinction that does not have any traction in the professional debate.

I don't think the NICE guidelines deny access to anything useful. The point about GPs not bothering to refer for diagnostic screening is really a service provision problem. The guidelines say nothing about ME being psychosomatic. And although CBT is psychological exercise is used routinely for locomotor and cardiovascular illness. Deconditioning is not a psychosomatic problem. It is a locomotor problem.

I agree that the 2007 guidelines are badly skewed by the inclusion of CBT and GET but Diane does not really mention that. The emphasis is on denial of other things - but there aren't any being denied.

Almost everything, if you think about it: autism, dementia, diabetes, multiple sclerosis, scleroderma, leg ulcers, depression... you name it.

 

From a certain point of view, a "functional neurological disorder" is probably emotionally generated. It's a label given to patients by doctors that find it too difficult to admit that medicine hasn't figured everything out yet.

 

I think more likely they are a psychological and a physical therapy designed to alter psychological behaviour. I agree it is moot - but I see so little point in making these distinctions. The important question is whether they work.

And I agree that the other important questions are exactly as you describe. There is an ethical problem screaming out at us here, but it is not the one Diane has picked up on. It is the ethics of misrepresentation of evidence.

 

For what it's worth I do see a clear ethical problem. There is horrendous neglect of patients, and the very ideology that justifies it is the idea that this is somehow not a medical condition. If we patients make the distinction between biology and psychology, it is because we have experienced neglect and mistreatment as result of someone deciding that we suffer from a psychological disorder, not a biological one.

It is used like a weapon against us, and it harms us. That's why we hate it.

 

I am not sure about that. Functional neurological disorder seems to me to be a very reasonable category for a narrow group of patients with movement disorders or sensory loss that is not explained by any identifiable structural neurological lesion of the sort that would normally explain such symptoms. The term says nothing about emotions or cause. It might be used to imply that by some but at least the term does not require that. So it is better than 'conversion disorder'. I also agree that a whole lot of wider problems that doctors do not understand get called functional but I think there is a small circumscribed group of people for whom FND is as good a term as one can get.

 

I just saw this on twitter

https://twitter.com/user/status/1102947792694243328

 

For what it's worth, that medicine clings to these 19th century ideas that never had any scientific basis tells us everything we need to know about how committed medicine really is to science and evidence. Committed only when it's convenient, not otherwise.

 

There is a horrendous neglect of almost all groups of patients in the NHS. I think ME patients are mostly ignored because they are considered to be hypochondriacs - with nothing wrong with them at all.

It seems to me that people are taking 'medical' here to mean involving some structural or biochemical abnormality of some part of the body other than the brain. We don;t have any evidence for that in ME, so on those grounds we do not know it is 'medical'. It is certainly medical in a wider sense but so are all illnesses, including depression and schizophrenia.

 

The comment about FND being emotionally generated is intriguing but I don't think you would find any consensus about that amongst doctors who specialise in the condition. And anyway it is only a theory of how FND come about. The term FND describes the clinical category.

Edit: Interesting that this quote comes from Sheffield neurological psychotherapy services.

 

So, someone with ME might develop, for example, heart failure, chronic kidney disease, or liver cancer, and won't have the condition diagnosed and treated because they are deemed to be a hypochondriac. Heart failure, CKD and liver cancer and their effects are initially invisible, so the condition will be allowed to continue until such time as symptoms become visible? Where is the morality and justice in this? Surely this much be unethical!