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

It depends on what you mean by authoritative I think. If it just means 'eminent' then as you say, it is just an argument from authority which cuts no ice.

If it means better informed and more cogent in interpreting the available evidence I am not very sure either. The IOM report as I remember it is not a very clearly argued statement. I think they talk of thousands of articles on biomedical research - but the great majority of the are negative or not reproducible so numbers means nothing much.

There are statements about ME being multi system or biomedical, but it is not clear how that is arrived at. It sounded to me like the opinions of a lot of people involved in biomedical research all bundled up together without any clearly argued thread.

People like White and Wessely actually are very well informed about the available evidence and they have made useful contributions to the biomedical side in terms of negative findings. I certainly disagree with their favourite theories but then I disagree with the favourite theories of most of the IOM people.

I realise that a lot of US advocates like to believe that the IOM report is authoritative. However, if I were to ask people who I consider really authoritative, and likely to give an honest answer, which might include James Baraniuk, Luis Nacul, Chris Ponting, Simon McGrath and some other members here, I am not sure that they would rate the IOM statement that highly. It is a propaganda piece. Propaganda has its place but not at the centre of scientific or ethical debate.

 

I don't think you can ever build an ethical argument on numbers like that. It is a matter of reasonable diligence in making the right diagnosis. It seems to me a red herring. What matters is whether GET is the wrong treatment for PWME. That revolves around harm to PWME. I am now pretty convinced that the argument for harm being likely is too strong to dismiss ethically. but that is not to do with numbers.

 

No, as JTJ says, this is the clever twist to BPS. There is no 'cause'. And that is a valid analysis; there is rarely a single 'cause' of anything. But they get away with the double speak that yes trauma is relevant but no it is not the whole story so CFS is not caused by emotion. This is why Diane's analysis cannot strike home - because she is firing at a target that is never quite where she is firing.

 

If GET is ultimately proved ineffective for ME, the PS crowd will come up with another inappropriate treatment - they're probably already working on it.

 

Yes, I fully agree with this.

That was my thought. The physical aspect of GET is only the second half of the 'treatment', and is entirely reliant upon the first part, which is 100% psychological - convincing the patient they misunderstand their illness, and it is safe to do the physical stuff. GET is really CBT-a-la-PACE plus the physical bit bolted on. Considering the second relies entirely on the first, I see GET as primarily psychological.

Absolutely agree with you; not surprising having said much the same myself within these walls along the way.

 

This is very true.

However:
If the evidence for the efficacy of GET is shown to be no good on general principles of method then it will be very difficult to replace GET with another treatment using the same known-to-be-flawed methods.

 

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? I would argue that reasonable diligence would have required doctors to admit that they did not understand what was wrong, to treat them with compassion and respect and to do no harm, rather than inventing unevidence explanations which resulted in mistreatment. To me, that is ethically no different from the current situation with pwME. At some point the use of this type of diagnosis as an explanation for any illness which is not yet understood has to be stopped, and I can’t see how that can be achieved other than by making the ethical arguments against it.

As @DokaGirl says, when GET is stopped they will move on to some other unevidenced therapy. And when ME is understood they will move on to another poorly understood illnesss.

I’m sure you know more about medical ethics than me, but to me it’s all about numbers. How does one calculate risk if not with numbers?

[Edited to add “if not with numbers”]

 

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.

 

Also, I think that an acknowledgement of the problems with PACE/GET/etc would undermine the reptutations and careers of a lot of key people. I don't think it's something that the BPS movement could rapidly bounce back from (which could be one reason why they're fighting so hard to save their Titanic).

 

But they prove there IS orthostatic intolerance, as 2-day-CPETS can show there are abnormalities. This is not irrelevant when it comes to credibility in general (pwME are viewed as hypochondriacs with a somatoform disorder, or simulants - depending on what serves better - they need to prove again and again that they have a "real disease".)

 

This jumped out at me too.

I didn't think tests were to prove the cause of something, rather they were to determine if something was present or not. I have heard some patients do benefit from OI treatments, and even from a credibility point of view it means a lot to a patient if they can point to an abnormal tilt table result. It is an objective marker regardless of the cause.

 

I've just re-read this blog, and I think the psychosomatic/biomedical divide is unhelpful and gets in the way of exploring the ethical problems with the way patients are treated. This approach leaves a lot of room for Wessely and co. to play word games that makes them seem sophisticated in ways that their critics just don't understand. Maybe that is why the BMJ published it?!

 

But surely the psychosomatic aspect is not that ME is synonymous with Deconditioning, but that ME is supposedly perpetuated (and thereby aggravated) by unhelpful beliefs. It's not the deconditioning that is psychosomatic, but the supposedly unhelpful beliefs.

 

Thanks to all for the discussion on my JME blog today! I just want to say clearly that there is no conceptual problem with the psychosomatic/biomedical divide - not clinically, and not philosophically. I know @Jonathan Edwards keeps insisting there is, but wow, that's really unproductive. Be careful not to drink the KoolAid! Psychosomatic medicine has deliberately fostered the idea that this divide is problematic so that patients will not be able to argue about the diagnosis.

It's a real mistake to take that bait. We all know that if you provide only psychosomatic care to a patient with lung cancer she's not going to make it. And we all want to change the current guideline so that ME patients don't have to struggle with that kind of error anymore. We can't possibly achieve this goal if we don't accept words that describe the difference between what the NICE guideline now does (psychosomatic care) and what we need it to do (biomedical care). Think of it like this: the IOM, NIH and CDC have no problem with the psychosomatic/biomedical divide when they insist that the UK is standing on the wrong side. There are many thousands of professionals involved in staking that claim - and none of them see a conceptual problem with their position. The conceptual problem is an illusion.

You don't need to worry that Wessely and co have some special skill with the mind/body stuff. They don't. From any philosopher's perspective that stuff is extremely unsophisticated. It wouldn't pass a basic philosophy class. Professionals in the BPS camp know they're out of their element with mind/body debates when a philosopher is around, so this is no risk in this. I would be so pleased to have any leader in psychosomatic medicine publicly engage with me about the psychosomatic/biomedical divide. I'm just finishing an article about it.

 

Peter White got some of the last guidelines changed. The original wording was about using wheelchairs but he said that aids would only confirm patients in their faulty belief that they actually had a disease. I think he complained about a few things with that reasoning.

It is a clear example of restricting our access to medical care, if a person with MS and the same degree of difficulty walking would be referred by a GP.

In fact, since we know that OI is caused by standing and the CPET testing and other work has shown we have a problem with exertion then people with ME should be given wheelchairs as a preventative measure instead of being denied them.

Per Fink has stated that people with ME should not get benefits as keeps patients sick. There are definite ethical problems here.

 

Thanks Diane - I thought I'd just add a few points.

Are there any quotes from NICE where it says that they only provide 'psychosomatic' care?

Are there any quotes from IOM, NIH or CDC where they say that the UK is on the wrong side?

I worry that 'psychosomatic' can be used as a label that lumps together lots of problems in a way that confuses exactly what is going wrong. This is particularly the case when 'psychsomatic' care can be used to mean a range of different things.

I'm not suggesting Wessely has any special skill here, but rather that reliance on the 'psychosomatic' label allows people like Wessely to evade the problems with their work without needing any special skill.

Also, if a 'biomedical' intervention was tested in the same way we saw with PACE, and with the same results, then promoting that as EBM to patients would be equally problematic. I care much more about patients being spoken to honestly and clearly than whether care is classed as psychosomatic or biomedical.

I really agree with you that the controversy in this area is an important issue for ethicists to look at and learn from, but I think that the 'psychosomatic' label very often distracts from the important ethical problems there are in this area. If the biopsychosocial crew suddenly start describing ME/CFS as a biological illness and they start talking a bit more about providing pharmaceutical interventions for some symptoms, but nothing else changes (and I fear that this is the way things are going) then that's very little progress.

 

What a great point, @Esther12. It's true that if the same bad science was used under the "medical" banner, we'd still have the same problem. This is important. The bad science problem cuts across the divide. In medicine science this bad wouldn't pass peer review, though - I do have faith in that.

NICE diligently avoids language that sounds psychosomatic because there are zillions of studies that show this terminology makes patients mad - so no, there's no statement of that kind in the guideline. But that doesn't keep professionals from recognizing the reality. It's like that great quote from a paper by Wessely, Armstrong and Kanaan - the advantage of the term "functional" is that "it allows neurologists to use a term that means one thing to patients and another thing to colleagues" (hope I worded that accurately). They don't avoid the divide because they don't see it. They avoid it because they don't want you to see it.

This is why the US can stake a firm claim on one side of the divide - because at the professional level everybody knows the divide is still there.

The US authorities state clearly over and over that it's a medical error to construe ME as a psychosomatic condition because it's a serious biological disease. That effectively says "Stop pretending the divide isn't there. It's there and we've all been on the wrong side for decades". They do not directly state that the UK is on the wrong side, but the AHRQ report (2016 Addendum) was informative to all those organizations and it refutes the basis for the current NICE guideline. US health organizations can't pass judgements on those in the UK - but they can unequivocally word things in a way that definitively rejects the UK approach, and that's what they've done.

 

I don't think that the letter of the guide is altogether helpful to the issue of how a person will be met with care in reality. The NICE guidance is quite long and while I may be wrong I would expect that few have bothered to read the whole of it. And it is just guidance for a condition that is poorly understood.

In reality people are faced with not just inappropriate GET/CBT but with a whole set of attitudes that have been fostered, even carefully cultivated by the BPS group. These are mostly intangible but very real in terms of the results visited on people already burdened by illness.

So whatever the guidelines do or do not say is secondary to how people are actually treated. This we know to be true. And it is an ethical issue of harm beyond GET that BPS needs to face up to IMO. Visiting a Dr should not be a traumatic experience when burdened by chronic illness.

 

They already are. We have central sensitisation and FND.

 

As a long time pwME, having been "bashed around" by all and sundry; those who say I'm a liar, a scammer, a benefit scrounger, lazy, crazy, undeserving, you name it..., having tests that prove physical ME abnormalities is gold for me. Proof my physiological functioning is out of kilter. Something for a pwME to hang their hat on. Something that may indicate to medical pros I'm not a low life, as they might think, minus objective evidence of physical dysfunction.