Historically, do you think the treatment of, say, people with MS when they were diagnosed with hysteria was ethical? Were the doctors making those diagnoses being reasonably diligent?
It would be entirely a matter of whether or not those treating had been diligent enough in establishing that the treatment worked. You could ask was the treatment of rheumatoid arthritis with gold on the basis that it was an aberrant form of tuberculosis ethical. It was eventually, because a trial was done to show that gold genuinely worked. Before that it would have been a question of whether, without RCT methodology being available, clinical impressions were witnessed with due diligence and scepticism balanced against the fact that without treatment the illness was devastating.
Was it unethical to use high dose bone marrow ablation with stem cell rescue, with an 8% mortality, in scleroderma, based on the false theory that this would induce cure?
I don't see anything a priori more unethical about treating a condition as hysteria when it is immunological than treating it as an infection when it is immunological. The problem with the psychosomatic field as I see it is that because anomaly of regulation it is the last field where due diligence in gathering evidence does not seem to be taken seriously. There are inherent problems with psychological theories in terms of testability but there are lots of immunological theories that are ultimately untestable but which may provide clues that a different sort of treatment might work - my own use of rituximab falls under that.
What I think it may boil down to is that science is not about which theory seems nice and which seems nasty. It is about which theory makes useful predictions that can be confirmed with evidence.
Apologies for slow reply. And apologies if what I write has been said by others. I didn't have the capacity to respond as quickly I would have liked, or to read all the comments which have appeared since, but I wanted to respond because I think this is a really important issue.
I don’t think we are disagreeing about much. I agree that for pwME the most pressing concern is to discredit the ineffective and potentially harmful therapies, and the flawed research methodologies upon which they are based, and I agree that those arguments are separate from and should not be confused with arguments about aetiology. However, I also think that, separately, there are legitimate ethical concerns about somatisation-type diagnoses.
First, I think it's important to differentiate between prescribed treatments and how patients are treated in the more general sense of how people interact with them. I believe it can be harmful to falsely label someone as mentally unwell, independently of what treatments they are prescribed.
If someone is mentally unwell it may be appropriate for medical professionals and others to interact with them in ways that would be inappropriate with someone who is not mentally unwell. (NB I am not talking about inappropriate interaction due to prejudice.) In the case of ME/CFS, doctors and others are informed that it is patients’ unhelpful beliefs which are preventing them from recovering. Independently of what treatments they may be prescribed, this results in medical professionals and others treating (ie interacting with) pwME in ways that are inappropriate and distressing (ie harmful). However, this situation is not unique to ME/CFS or mental health. It would be similarly unethical, for example, to falsely assert that someone had any other type of diagnosis, such as a highly infectious disease – and more so if everybody who had a chronic illness without a known biomarker was automatically assumed to a have such a disease.
Second, I think we need to differentiate between speculation about the possible causes/mechanisms of a medical condition, and stating as facts theories or models which are not supported by reliable evidence (and in some cases may be unfalsifiable). I have no ethical concerns with responsible doctors or scientists speculating about what role psychological factors might play in triggering, maintaining or effecting any type of illness. But, to me, an ethical line is crossed when speculation is assumed to be fact without reliable supporting evidence – especially when those assumptions inform public policy.
Again, this ethical line applies to non-psychological diagnoses in the same way that it applies to psychosomatic-type diagnoses. So in that sense I agree that it is unhelpful to differentiate ethically between psychosomatic v biomedical. The ethical problem is with the false diagnosis/mislabeling and the presentation of speculation (or falsehoods) as facts, not about the particular type of diagnosis. The point is that the psychological medicine should be held to the same standards as any other branch of medicine.
However, I also think it’s important to recognise that, unlike other branches of medicine, psychological medicine has a long history of crossing these ethical lines – particularly with regard to somatisation-type diagnoses. It seems that for more than 2000 years just about every unexplained chronic illness has been assumed to be some sort of somatisation until the real causes and mechanisms have been understood. With such an appalling track record, I struggle to understand how such a diagnosis can continue to be taken seriously as a scientific explanation for anything. Yes, we can, and must, defeat the particular claims made by BPS researchers about the effectiveness of particular treatments and the causes of particular illnesses, but at some point the route cause to these repeated false claims needs to be addressed. I agree that successfully challenging flawed methodology in psychological research will go long way to achieving this, but I don't think that should be the only approach.
I also think it is important not to overlook the particular consequences of falsely labelling someone as being mentally unwell – particularly when the patient is considered to be deluded in some way, and/or responsible for perpetuating their own illness – which may be different from the consequences of other types of false diagnosis/characterisation.
However, as evidenced by the discussions on this thread, arguments about the ethics of somatisation-type diagnoses are harder to make than arguments about the quality of BPS ME/CFS research and the effectiveness of particular treatments, and there is a danger that if they are not presented carefully they may distract from or undermine the immediate battles which need to be fought with NICE, Cochrane and others.
