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

OK, one more point.

My reference to poor logic was along these lines, Diane ( @Diane O'Leary )

What I read was:

It is unethical for NICE to follow the UK BPS consensus because it is not based on good evidence.

Therefore,

NICE should follow the US IOM consensus, despite it not being based on good evidence.

Which I take to be non-sequitur. There is also a problem with some of the wider premises so conclusions are likely to be unsound even if valid.

I realise that this is not quite what the article says but it is the message one gets and in reality I think it is the thrust of the argument.

The IOM pronouncements about multi system disease are actually based on nothing concrete. They were something of a propaganda statement by a group of physicians interested in biomedical research.

Should ethics be based on consensus anyway? I doubt it. Historically, and still now, consensus is often in favour of things that harm. Should a US consensus take precedent over a UK consensus? Why not a European consensus (of 500 million) which might be BPS, or the WHO, which now requires traditional Chinese medicine to have equal status with 'Western' medicine. And is this a consensus of physicians, psychiatrists, GPs, patients, men and women in the street, politicians or journalists or who? I don't see any useful route here. Ethics needs to be based on careful rational analysis of harms and benefits. Very few people may have a clear idea of what is ethical.

 

Another quick point. Have you read the 2007 NICE guidelines, Diane? I don't have them to hand but I don't think there is any suggestion of denying medical care of the sort you are interested in. There is a recommendation to do certain tests and not others, which I see as about as well judged as one can expect for a guideline, although an autoantibody screen might be worthwhile.

I now realise that you are to advocating specific medical treatments but I am unclear what other sort of 'medical care' you are thinking of. Quite a lot of ME care in the UK is done by physicians rather than psychiatrists and even the psychiatrists, like Peter White and Simon Wessely, are interested in cytokines and lymphocytes and have written papers on them.

 

I thought of it as a wake up call that a serious problem was being overlooked.

 

I do think that CBT/GET proponents are clearly trying to suggest to broader society that CFS is psychogenic, while insisting that they don't actually view it that way. This does lead to insufficient or inappropriate care, even if there is no treatment for ME/CFS in particular yet. Once a physician as been told that the patient is suffering from a psychogenic disorder, they will tend to interpret every symptom (existing or new) through that lens. The case of Robert Courtney might be a good example of how this can go wrong.

 

I would say more than suggesting; they are continuously now trying to back track, but the purpose of changing the name from ME to CFS was to reclassify it as a mental health issue.

https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(05)64917-3.pdf

eta: the Cochrane reviews are all by the Common Mental Health disorders group;
there's a reason for that.

 

Welcome to the forum, @Diane O'Leary Thank you for your paper and for joining in on the discussion about it here. Very interesting.

 

Sorry, that was not really aimed at you, but I'm terrible at doing that; should really have tagged @Jonathan Edwards. (If you want to tag someone by the way, just put an '@' before their name with no space between). I was really picking up on the fact that although BPS people can legitimately reject assertions they treat pwME as having a mental illness, would it be legitimate to assert they treat people as having a "mental health condition"? I was trying to get to grips with the distinction between a mental illness versus a mental health condition, and what terminology we should be using, to stop them wriggling off that hook.

Yes. I think we also need to clarify a distinction between "mental illness" versus "mental health condition"; the BPS people may be able to legitimately deny treating pwME has having the former, whereas - surely? - they cannot deny treating them as having the latter. Either way, pwME end up being wrongly treated. And let's also note that even those pwME being treated within the medical care sector, if labelled as having mental health issues as the root of their condition, then the "medical care" they end up getting can, and does, become significantly uncaring.

 

I'm not sure how relevant this is to the discussion now, but something of personal experience came to mind while reading this. I was for years effectively denied medical care and given psychological care instead, I believe due to the ME diagnosis.

I was believed by my GP's to have 'CFS' from January 1996, although it was a good two to three years before I was seen by a 'specialist' for a formal diagnosis. In September 1996 I slipped and hurt my right hip joint. Some three months later, when it had not resolved, I sought medical care. (I had a history of multiple injuries throughout my life that I was used to dealing with without medical care, so followed the same logic with this). Physiotherapy was given, but did not resolve the issue

There followed a referral to a somatisation clinic and, after I had moved house and therefore GP, a referral to a clinical psychologist. The latter wrote back to the GP that I had no mental health issues at all.

I was diagnosed with hEDS (hypermobility type Ehlers Danlos Syndrome, for those that don't know) about 5 years ago (a good 15 years or more after I injured that hip). Since then I have had a referral to an orthopaedic hip surgeon, had a repair done of the gluteus medius, and more recently a hip arthroscopy that removed a portion of cartilage from the hip that had torn away and died. I had had no further incident since the one in 1996 that could have caused either of these, so my assumption is that they were as a result of that fall.

This says to me that, with a diagnosis solely of ME, I was assumed, when the physio failed, to be suffering a psychosomatic issue rather than an ongoing injury. Once I received the hEDS diagnosis, and further physio failed to sort my hip, further investigations were done to ascertain why.

I admit I did receive the initial physio, which would come under medical care, but then was passed into the psychiatric field rather than having further investigations by someone in a non-psychiatric field.

Other pains have also been further investigated since the hEDS diagnosis, and seem to have been taken more seriously than any I complained of beforehand, including toes and fingers (both now osteoarthritic) and neck (ditto) as well as bowel issues (not 'just' IBS - I also now have a diagnosis of sigmoid diverticular disease).

Apologies for any rambling or lack of clarity in this post, my brain is trying to shut down today - I've been reading the forum longer than I should have been, but you guys are just so darned interesting and addictive

 

I'm sure there must be a psychological therapy for that . Oh yes of course ... do keep posting .

 

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,

 

I'm not understanding this comment. The IOM provides substantial evidence that multiple systems are involved. What am I missing?

 

From a campaigning perspective, I absolutely welcome what you are saying @Diane O'Leary. It does help me to understand this paper, as an ME patient, to know that your perspective is informed by experience of a long period of MUS diagnosis. I am glad that you have recovered well enough to pursue your academic interest and thankyou for engaging in discussion.

As I understand the two points you made which should carry weight with NICE, these help by providing an academic commentary reminding NICE decision makers of their responsibilities to represent expert opinion which is incontestably divided. Its related to the issue of behaviour and anonymity, if people know that other people are aware of what they are doing they behave themselves a bit better. This is comparable with the importance of David Tuller's critical commentary in exposing what others would rather brush under the carpet. The second point about US opinion reflects the division and the direction of resolution in a country which is, from a perspective of real politik, hugely influential in the UK, which reinforces this point and hopefully encourages the NICE agenda in the right (from my point of view) direction.

The third point about psychological intervention not justifying the denial of biophysically responsive medical care makes sense and resonates strongly with the situation in Denmark recently after the difficulties of Karina Hansen as well as recalling the historic tragedy in the UK of Sophia Mirza who died as a result of being sectioned for believing she had ME, when she did and yet was unjustifiably denied the kind of medical care she evidently needed which lead to a deterioration in her health resulting in her death soon after her release. This point though is very broadly applicable, another example was the mistreatment of Georgie Sheldon who was taken to a psychiatric unit and received the same kind of ill considered treatment, after a brain operation caused a form of CFS, as featured in a BBC Panorama documentary in 1999 and she thankfully survived the ordeal which was unhelpful for her.

http://news.bbc.co.uk/1/hi/health/509670.stm
http://news.bbc.co.uk/1/hi/health/508322.stm

What happened to her and many others exemplifies how psychiatric diagnosis has on occasions lead to a failure to recognise real medical need. So I think your point is well made and I hope it helps those in positions of responsibility who are apparently having cognitive trouble with mind body dualism, by which I mean those psychologists who have made such horrendous mistakes.

I think you are correct that this has relevance further afield, IMHO particularly in any countries where sectioning or care proceedings can override patient autonomy on the basis of a psychiatric diagnosis.

 

Surely a world of difference Jonathan. You acknowledged your patients' real physical illness (hugely important 'psychological therapy' in itself), and then helped them get to the right mental place to deal with it, as best as you and they could.

The BPS approach to pwME is only superficially similar. They flatly fail to acknowledge the real perpetuating cause of their patients' physical illness (asserting their physical problem to be deconditioning and that it is reversible), and then insist on getting them to the wrong mental place, to deal with completely the wrong problem.

Your approach underpinned by honesty and integrity. The BPS approach absolutely not. No real similarity in my opinion.

 

The IOM said it is a multi system disease. I do not know what evidence base they used, but we patients know it is a multi system disease because we have problems with multiple systems! In what other disease do patients need "proof" before they are believed? Of course, there is a dearth of peer reviewed papers because of the dire amount of money given for research and because BPSers reduced our disease to fatigue. Imagine what would happen with diabetes if all that was concentrated on was thirst. They would recommend drinking sensibly and when patients got worse they would say they weren't doing it properly andall the other things like gangrene were down to poor hygiene.

The NICE guidelines may sound reasonable but they are written exercise which has little effect in practice. We can refuse treatment but our children will be taken into care or our benefits will be withdrawn or we will be sectioned. How many diabetics live in fear of seeing a new GP in case they are sectioned?

I mention diabetics because when I was diagnosed as such the difference between the way I could access care for that and for my ME was breathtaking. For a start the diabetes nurse knew something about diabetes! I have always known much more about ME than my GPs. I read about doctors who know what ME involves but I have never met one and doubt if I ever will.

I can ask the nurse if something is part of my diabetes and get a simple answer. I ask about my ME and get told it is "too weird" and so it is anxiety. Then years later I come across a medical article which describes my exact symptom!

When I had to be in hospital I was treated very badly. One nurse in particular rolled her eyes every time I asked for help.

We are not given respect, we are not believed, we are not given help in accessing services, our disease is trivialised so we are not treated the way that someone with another disease AND EXACTLY THE SAME LEVEL OF NEED would be.

I am aware of this in every interaction with a health professional and like many here have actually experienced PTSD after some dealings. This has to be acknowledged.

The narrative round "CFS" over the past decades has infiltrated the subconscious of everyone who interacts with us so that everything we say is trivialised or seen as an exaggeration or whining. Instead of words that sound good, we need a positive policy that acknowledges our fears and makes sure that every doctor appreciates exactly how severe our disease and life limiting ME is for us.

 

That I would entirely agree with, but it is not a matter of a distinction between psychiatry and internal medicine or between mental and physical health. Physicians are just as likely to use the 'biopsychosocial' term. Physicians and GPs regularly think problems are all in your head. What I think is important is that this is not about an issue of categorising ME into a mental or biological pigeonhole. Biological covers psychiatric as well as internal medical. We need to be debating about real distinctions. The real distinction is between competent evidence based medicine and incompetent medicine based on unreliable evidence.

 

I am not sure that helps. The distinction of interest, as indicated above, is not between one branch of medicine and another but between people who are practicing outside what ought to be the framework of any medical speciality and those within. The BPS approach to ME seems to me to be neither psychiatry nor medicine. It is phoney.

 

There are so many interesting comments to respond to this morning! (I'm in Canada.) First, @Jonathan Edwards, I'm just not at all sure what to do with what you're saying here. My article does not say or imply, ever, that "it is unethical for NICE to follow the UK BPS consensus because it is not based on good evidence". It also does not ever say or imply that "NICE should follow the US IOM consensus, despite it not being based on good evidence".

What can I say? I'd like to engage with you about the paper, but nobody gains anything if you challenge ideas that have nothing to do with what I've written. This paper is completely neutral on the question of who's correct, the US or the 2007 UK guideline. (I am not neutral, but the paper is.) The point of the paper is this: the right to medical care for ME patients does not hinge on the scientific debate. This paper argues that we can set aside the scientific squabble about biological causes entirely and still see that ME patients have a right to medical management - so the paper does actually set the scientific debate aside. Jonathan, you have not heard of this approach before, so you're not going to be able to discuss it if you don't actually read it.

There's an ethical argument for medical management that's airtight. Every patient who might have a need for medical care has a right to get it when she goes to see her doctor. The doctor can't say "until there's proof that you need tests and treatments you can't have an appointment". Medicine is "beneficent". Symptoms lead to inquiries because symptoms mean there's a question of medical problems - not because symptoms mean there's proof of medical problems.

Policy makers like NICE have the same obligations as doctors. They can't set up policies that deny medical care to patient groups who might need it. They can't demand proof before providing medical care if patient groups have a clear possibility of need. That would violate the ethical principles that NICE commits to in its founding documents.

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. Now there are major global health authorities (IOM, NIH, CDC) who stand firm on the view that ME is a serious biological disease along the lines of diabetes, cancer, MS. They say it's a medical error to manage it as a psych condition - and CBT and GET are managing it as a psych condition. (Again, doesn't matter how they word it. It's psych in textbooks. It's care developed and provided by psych professionals.)

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? Absolutely not. It doesn't make any difference whether NICE actually agrees with the US about the science or disagrees with them. That's the thing. The point of the paper is that no patient's access to medical care hinges on proof of need. That's crazy. Patients get medical care when there's a substantial possibility that they need it, and the US view on ME establishes that possibility beyond all doubt.

So that's the argument. It's not based on a position about which scientific view is right - and that means this is an argument that the BPS people have to accept. Here it is in a nutshell: It makes no difference who's right about whether ME patients need medical management. The existence of the new professional debate means that mental health management of ME is no longer ethical in health policy.

 

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. We have discussed this a lot in the past and my impression is that most people with ME would have been very pleased if the PACE trial had genuinely showed that CBT produced recovery.

 

The IOM had a group of experts examine a large body of research but that is beside the point. We know ME is a multisystem disease because patients experience symptoms in many different body systems. People with other diseases do not have to produce peer reviewed scientific papers to be believed. (And we might have had those if the pitiful amount of research money in the past decades had not been hoovered up by rubbish BPS research)

Making ME into CFS so only fatigue is considered has really screwed things up for us. I remember seeing an optician who was shocked and angry that I was claiming my eyes were affected yet 50 years on from my first episode there has now been research published - not that I have ever had a doctor look at my eyes that way.

The NICE guidelines make many pronouncements that sound reasonable, like saying that patients have the right to refuse treatment, but that is not the experience of many people since they came out. To dismiss patient concerns by saying it is written there is not adequate if they don't include a way for patients to get help when they are forced into treatment, especially children.

There seems to be an establishment feeling that everything is fine without interacting with patient concerns. This is the opposite to VD clinics which keep changing so that patients will attend. We should be given the same consideration.

Many of us have experienced PTSD as a result of interactions with medical personnel, never mind life destroying things like being sectioned or having our children taken into care. How many MS patients are frightened to see a new doctor in case they get sectioned?

No matter how many words are written or platitudes spoken interacting with the healthcare system as an ME patient is completely different from having any other disease. We know that from experience.

Any guideline should acknowledge our fears, should make healthcare accessible by asking us what WE think would help. It could save the health service a fortune if we were helped to pace, given health checks so that small problems would not become major, help family to support us and stop depression setting in.

The BPSers have trivialised our disease and made health care providers think that it is our fault underneath because if we really wanted we would be well. The constant drip of their remarks needs to be rebutted strongly so that medical people treat ME as serious and give patients the same respect as they would give someone with the same needs but another diagnosis.

It is truly unethical to continue in the same way.

 

I am very familiar with the approach, Diane. A lot of UK advocates have been following this approach for a decade and more recently others in the US. 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? As far as I can see nobody in the UK is suggesting anyone is denied medical care - certainly not the 2007 NICE guidelines. Have you read them? Yes, there was a problem with poor evidence, but that IS a scientific problem.