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

[Hoopoe]

A bg problem with focusing on the dichotomy of mental and physical for ME is that the BPS enthusiasts have been extremely successful in persuading the media that all the complaints about PACE etc are simply because PWME do not like the idea of being put under mental illness.

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.

 

[Jonathan Edwards]

The doctor can't say "until there's proof that you need tests and treatments you can't have an appointment".

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.

 

[Jonathan Edwards]

They can't demand proof before providing medical care if patient groups have a clear possibility of need.

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

 

[Jonathan Edwards]

So that's the thing. Back in 2007 there was professional consensus that ME is a psych problem. (Doesn't matter how you present that in BPS terms. That's a fact.) That consensus is dissolved now, so NICE's ethical constraints are different.

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?

 

[Jonathan Edwards]

Given that major global health authorities now say this is a serious medical disease, can NICE continue to implement psych management and still respect the ethical constraints in its founding documents?

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

 

[Jonathan Edwards]

the US view on ME establishes that possibility beyond all doubt.

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.

 

[Jonathan Edwards]

The existence of the new professional debate means that mental health management of ME is no longer ethical in health policy.

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.

 

[Diane O'Leary]

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?

 

[Diane O'Leary]

Welcome to the forum @Diane O'Leary

Thanks for sharing your interesting story and for responding to our comments. I apologize that my reply is a bit long.

I) In your paper you argue that there is a “substantial possibility” that ME/CFS patients suffer biological harms “and this possibility is enough to establish patients’ foundational right to access general biological medical care.” I would argue that demonstrating the pathology of a disease is irrelevant to access to healthcare. So the fact that there is a “substantial possibility” of an organic disease isn’t relevant either. As you said, that possibility is true for mental health disorders as well. Suppose a ME/CFS patient, back in the days there was literally no research data available for this disease, and whose tests all seem normal. Would that patient have less right to biological medical care? I think the only thing doctors need to rule out is that the patient is malingering. But nobody seems to be arguing that ME/CFS patients are doing that. So I don’t see how the discussion about evidence on the biological pathology of ME/CFS and the reports of the NIH, IOM etc. is relevant to access to biological medical care.

II) Similarly, I don’t see how the limited evidence about the biological pathology of ME/CFS is relevant to it being classified as a mental health disorder or not. I would argue that ME/CFS should not be classified as a mental health disorder because the main symptoms patients report are not related to mental health and there is no evidence that these are caused by the patients’ thoughts or behaviors. There is now some evidence that depression is associated with biological abnormalities such as a changed gut flora or inflammation in the brain. IMO, this changes little to the ethical nature of classifying depression as a mental health disorder or the appropriateness of mental health interventions.

III) If the lack of medical care you write about is of the nature that Barry describes (being taken seriously by your doctor, pacing, general illness management), then I don’t see how ME/CFS being classified/seen as a mental health disorder is relevant to that. Patients with all sorts of mental health disorders are getting the type of care Barry describes, so I think it will be hard to argue that being classified as a mental health disorder is preventing that care for patients with ME/CFS. In a sense, doctors such as a Simon Wessely or Peter White are taking ME/CFS seriously. They have devoted their career researching CFS/ME and have working in specialized clinics to treat these patients. The real problem is that they have a false etiology and propose treatments that don’t work and are likely harmful.

IV) You write: “can it be ethical for NICE to continue to characterize ME/CFS as a mental health disorder, directing patient care wholly down the mental health track?” I’m not sure it does, it simply promotes false presumptions and wrong treatments. And I don’t think these false presumptions and treatments are due to being classified or seen as a mental health disorder. The type of CBT that is used on ME/CFS patients and is promoted by the current NICE guideline has also been trialed by Chalder and colleagues on patients with Multiple Sclerosis, to heal their fatigue. Another example: I ‘m not sure that the recommendation of GET to ME/CFS patients should be viewed as a consequence of doctors seeing this illness as a mental health disorder. GET can be useful in patients with (chronic) pain, even though doctors usually recognize this as an organic injury, not a mental health disorder. Andrew Lloyd, Jo Nijs and even the Larun et al. Cochrane review proposes that GET might be helpful in ME/CFS patients because these patients supposedly suffer from central sensitization They think graded exercise can desensitize the nervous system. So they propose an organic etiology, but the problem remains: their hypothesis and treatment still lack scientific evidence.

V) Maybe a thought experiment might clarify what I mean. Suppose that instead of GET/CBT doctors and healthcare agencies are promoting antivirals as the recommended treatment for ME/CFS, even though patients say it doesn’t work and often harms them. Suppose there’s this idea in the medical community that treating ME/CFS symptoms is useless and a waste of money, that you have to tackle the underlying infection and that this idea is preventing general medical care for ME/CFS patients. In such a scenario, we would be facing similar problems, but one where it is clear that classification or recognition of the biological nature of the disease is irrelevant.

One could flip the scenario upside-down: suppose psychiatrists argue that ME/CFS is a mental health disorder, that patients have too much stress in their lives and that they cope with this inadequately. As a result their stress system has crashed which creates chronic disability. Suppose these psychiatrists believe GET/CBT is harmful because ME/CFS patients cannot handle such stress. Instead they advise pacing, symptom management and general recognition and support for the patient’s disability. In such a scenario patients are getting the care Barry described, despite ME/CFS being labeled as a mental health disorder.

I apologize if I read things in your paper that aren’t there or misrepresent your arguments. I thought this discussion might be helpful or interesting anyway.

Kind regards,

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.

 

[Hoopoe]

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.

 

[Barry]

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.

 

[large donner]

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.

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.

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.

 

[Diane O'Leary]

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.

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.

 

[Roy S]

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?

 

[Snowdrop]

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.

 

[Hoopoe]

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.

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.

 

[Hoopoe]

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.

 

[Hoopoe]

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).

 

[Diane O'Leary]

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.

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.

 

[Diane O'Leary]

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 mainstream healthcare did not help them. So it's plausible that quackery is indirectly fueled by psychogenic diagnoses which from a certain point of view is an attempt to avoid iatrogenic harm.

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.