Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

They did this because their arguments for (covertly) treating ME as mental illness cannot withstand criticism, so they pre-emptively smeared their opponents. They succeeded in creating an environment that doesn't allow a serious discussion of this topic. But we can't avoid this debate forever and shouldn't let them dictate what is allowed to be discussed and what isn't. The truth is that the concept of psychogenic illness has no scientific basis and can seriously harm patients, up to killing them. The specific model applied to ME/CFS also makes no sense and that's why patients are protesting it. It's no different than saying atherosclerosis is caused by bee stings. It simply makes no sense.

 

Are you actually familiar with the UK system, Diane? It is broken throughout by shortage of money, but the 2007 NICE guidelines say nothing about not having appointments. It seems entirely reasonable to say that if there is no reason to think a test will be of help it should not be paid for by a common insurance system.

 

I really do not know what you are referring to here, Diane.

 

Sorry Diane, but although this may be the popular lay perception the reality within the medical community is much more complex and really not much like this at all. There have been all sorts of opinions all along and they have not changed that much. I don't think the IOM pronouncement is really that important in all this. It was not based on very good arguments. The argument for evidence for CBT and GET being weak relating to Oxford criteria issues the whole point - that none of these trials provide useful evidence whatever the criteria. Why did the people at IOM not spot that?

 

But I thought you said this scientific debate was irrelevant? I cannot follow this.

 

It doesn't establish anything, because it is not actually based on any new scientific knowledge that has proved replicable, and anyway you are saying the scientific stuff does not matter.

Sure, everyone is entitled to whatever care is likely to help them if they have contributed to a common insurance policy. And I think a common insurance policy like the NHS is the only ethical option. But it is quite unclear to me what you think people are being denied and what it has to do with the mental/physical distinction.

People with psychiatric disease misdiagnosed as having internal medicine problems can come to grief just as much as the other way around. People with psychiatric illness have the same rights as those with non-psychiatric illness. There seems to be a spurious asymmetry in what you are suggesting.

 

But there is nothing new about this debate. It has been going on ever since neurasthenia was coined as a term for a strictly biomedical problem (and then got twisted into a term for a psychosomatic problem). As Wessely points out in New Wine in Old Bottles, the debate is over 100 years old.

 

Oh geez. I can see that you really want to disagree with me @Jonathan, and you're working really hard to find reasons, but the thing is that we do not actually disagree. You're just not looking at the paper's actual argument. If you like, you can just respond to the argument as I presented it above?

This is just silly. This argument could not have been around for 10 years because it's based on dissolution of professional consensus, which occurred, roughly, in 2015. And it's an ethical argument, while ethicists have ignored the question of medical care for ME patients before this paper. (There was that fantastic paper by Geraghty and Blease in JME, but it didn't specifically address the question of the right to medical management.) Finally, if this argument had been around for a decade, ME patients would have been getting medical management for a decade. This is not like the scientific debate where the NICE board can just disagree. NICE is committed to a set of ethical principles. When someone publicly shows how they're violating those principles they absolutely have to act on it, or show precisely why their action is not unethical. They can't allow unethical policies to stand.

You can ask if I've read this or that in a way that implies I haven't (what's with the insults?) but if you look at the work I'm publishing you'll feel silly for doing that. Have a look at "Why bioethics should be concerned about MUS". This is my area of professional expertise.

In any case, if you want to make any claims about the quality of the logic or its similarity with other ideas you first have to be able to say what the argument actually is - and what you're writing makes it clear that you're still not reading -

"But if the debate has no bearing on the right to have medical care why raise it and spend most of the paper on it?"

This is what you're asking - but the paper is actually about the right to medical care. How can I respond to that?

Look, we are on the same side! I think your work is marvelous, and I've told you that directly several times. We are working toward the same goals, it's just that I'm doing that based on an ethical argument and you're doing that based on a scientific position. These approaches are perfectly compatible - so why don't we focus instead on the things we agree about?

 

Hello @Michiel Tack - Wow, I really appreciate the rigorous discussion. This is so helpful! My reply will be long too. I always feel so bad about that because I remember when it was a struggle for me to read. Wish I could do this in fewer words.

So, on (I), you are completely right about the main point, and I completely agree. The point of this paper, though, is to convince the other side that ME patients have a right to medical care. We're not going to convince the BPS camp unless we base every step on ideas that they will accept without any dispute. Then we show that based just on those things, ME patients do have a right to medical care. This argument is aimed, for example, to PACE researchers. They will not, or cannot, dispute the basic points, then I show that the basic points are enough to secure the right to medical care.

Maybe this will clarify. Before 2015 patients and advocates would insist that ME is a serious medical disease, while the med and psych professionals would say that it belongs in psych. (Well, they'd dress that up in language that makes people less mad.) Then the advocates would say - but there's all of this scientific research to show that it's a biological problem! And the meds and psychs would respond with - that research is not good enough to prove that the problem is biological - and policy makers would make made policies for mental health management. That debate has been the order of the day for decades: is there proof that these patients need medical care or is there not proof? Everyone divides into camps.

This paper says, stop asking that question because proof does not matter - and this is exactly your view. In terms that ethicists recognize, the question then becomes "where do we set the bar where patients have a clear right to access medical care?" I say, as you do, that we can't set the bar so high that we demand proof of medical need. That's too high. And it wouldn't work to say that every patient who insists she needs medical care gets it. That would be too low. There are some extremely anxious people who think they need to see a doctor every single day when they don't actually have a need. So where do we set the bar? Well I'm not sure exactly, but I do know that in every case where there's a substantial possibility that a patient needs medical care she definitely has a right to get it. We all can agree on that much. You agree on that. Even PACE researchers agree with that - that's the thing.

Now that we have that in place, we note that ME patients have met that standard since 2015. They didn't meet it in 2007 because all of the med professionals agreed back then that the problem is not medical - so no professional at that time would have accepted that there's a "substantial possibility" that ME patients need medical care. Now, though, they have to accept it. It's a fact! They don't have any choice. It's not a fact that the IOM is correct, but it's a fact that because the IOM thinks ME patients need medical care, there is a substantial scientific possibility that they do.

This approach says we don't need any scientific demonstrations beyond the substantial possibility, and we've got that. So you're right that "demonstrating the pathology of a disease is irrelevant to access to healthcare". The thing is that access to healthcare is not automatic, just because patients think they'd like to have it. We need to set the bar somewhere, and "substantial possibility of need" is a place to set it where the BPS people absolutely have to agree with it, while the ME patients still get what they need.

Sorry for all the words! I'll do your other issues separately.

 

I think Jonathan Edwards is concerned that the current psychosocial quackery could be replaced by biomedical quackery, which could be cause even more harm. Therefore the emphasis on setting high standards of evidence for everyone.

 

And perhaps that if there are holes in arguments advocating for pwME, it is better to address them here than the BPS people use them to undermine NHS guideline endeavours. Confess I'm out of my depth with some of the issues here.

 

What happens when you don't want the right to the medical care on offer because its based on pseudoscience. Its somewhat irrelevant whether there's a consensus that you have a need for medical care.

I am pretty sure I don't need advocates to fight for my right to pseudoscience. I'm confused over the argument that medics did or didnt accept the need for people with ME to have the right to medical care.

We have had, "the right to medical care" in the form of pseudoscience for decades. No one has withheld that from us infact its often forced upon people.

We are in a fight to refuse "medical care" at the moment not the other way round.

I am not sure I am getting the argument here.

I am not sure where 2015 comes into it at all.

 

Very helpful to see that take on it, @strategist. I confess I'm having a hard time seeing past the insults. If this paper encouraged biomedical quackery that would be a very serious problem, fully agreed. But there is no implication of that kind in there at all. Ethicists recognize that "medical care" involves a whole lot more than treatment, and I think they've succeeded in showing doctors that this is the case.

Well maybe that will be a productive result once ME patients are fully in the medical stream. They will help the field of medicine see that it's not just about writing prescriptions. Sometimes people are seriously ill and no evidence-based treatments are available yet. They need strategies for dealing with that common situation within medicine.

 

Welcome, Diane. Sometimes this place seems a little like Through the Looking-Glass

“When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.” “The question is,” said Alice, “whether you can make words mean so many different things.” “The question is,” said Humpty Dumpty, “which is to be master—that’s all.”

Would you comment on what you hear about ME from people outside our community? Does it seem like progress is being made?

 

I agree that if it's medical quackery that is usually something found outside mainstream medicine. Most GP's are very conservative and in fact are monitored by gov't for their billing.

If people receive medical quack treatment it's because they deliberately sought it out. The purveyors of quackery are working outside medicine. Unless we're talking about the US where there is latitude for GP's to do whatever.

 

The current strategy is to treat unexplained symptoms as psychogenic. This is based on several assumptions: that the mind has enormous power and can produce all sorts of symptoms, that known diseases are rarely missed, that most or all diseases are known, that treatment for psychogenic conditions is beneficial and risk free, and that such psychogenic labels are not harmful. All of these are somewhere between questionable and obviously incorrect and look like a relic from the 19th century. Medicine needs to come up with better solutions for such situations.

 

There is some sense in the psychogenic diagnosis, but not because psychogenic labels are generally sensible. Resources are limited, investigation and "trying to see what helps" can lead to iatrogenic harm.

The psychogenic diagnosis strategy needs to replaced by something that avoids the many problems associated with it while preserving the few positive things about it.

I believe the lack of progress in ME/CFS is primarily due to the prevailing view in medicine that hard problems are best labelled psychogenic and then ignored.

 

Whether psychogenic diagnoses really protect patients from harm is an interesting question, because the patients that end up seeing a quack probably do so because the interaction with mainstream healthcare was unsatisfactory. Unfairly diagnosing the patient with a psychogenic disorder is a rather good way to make it unsatisfactory, even humiliating and distressing. It's plausible that quackery is indirectly fueled by psychogenic diagnoses (which to some extent appear to serve the purpose of minimizing iatrogenic harm). And the psychogenic diagnosis itself probably is often harmful in ways that haven't been explored yet (that so many patients hate it suggests it is harmful).

 

Oh I see! Thanks, @large donner for pinning that down. The term "medical care" has become a real mess since the BPS people got a hold of it. Makes it so hard to have a simple discussion! They call CBT and GET "medical care", but that language was actually developed by psychiatrists to keep patients from arguing. We all know that's not really medical care. It's not what people with diabetes and cancer get, and US health authorities now agree with us when we point out the difference.

For decades med students have been trained to see ME as a psych problem. The current guideline tells them to manage ME patients based on protocols developed by psychiatrists, not medical researchers. And it tells them the lingo to use with patients so patients will call it "medical care" and won't fight about it. This is pseudoscience for sure. Great word.

In 2015 the US IOM basically said "stop doing pseudoscience on ME patients". Or "stop saying you're giving them medical care when you're really giving the psych care". Since 2015 the US authorities say that ME is like diabetes and cancer. It's a disease, and it's serious. CBT and GET won't cure diabetes and cancer, and they won't cure ME. ME patients need care based on medical research - not care based on psych research. That's "medical care". That's what the paper says has to happen.

 

Wow, that's a great point. I think you're right. Quackery arises from psychogenic diagnosis because people just can't stand to be ill so they're desperate. So if the point is to protect patients from iatrogenic harm, they need to develop a guideline that doesn't drive people to quacks. Terrific argument.