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

In my story, I think some of the loss of trust came from doctors acting like there wasn't a problem. Now I know that they were probably taught that they had to reassure the patients and avoid suggesting that there was any illness. In the long term this then led to loss of trust and contributed to trying to treat the illness by myself.

 

I agree with that, but it is pretty clear that the article is intending to give the impression that something else is being denied - some treatment where the evidence is not cast iron but suggestive. The problem is that that opens the door to all sorts of nonsense.

And of course the BPS crowd would flatly deny that they are suggesting that ME is a mental illness.

 

Agreed.

Whether they flatly deny it or not, that very much is what they are suggesting. If someone keeps walking into brick walls, and the suggested theory is that it is due to unhelpful beliefs about being able to walk through brick walls ... then there surely has to be a suggestion of a mental problem there, even if that is denied being the suggestion. Which would be fine if that is the person's real problem. But it may of course be due to the patient being blind.

 

As psychologists they of course know that this is how people will interpret what they are saying, and that a flat denial only re-enforces their not so subtle suggestion.

Possibly if they don't mean to imply we're all bananas then they should find a way of phrasing things that doesn't suggest that we at least belong in the exotic fruit section.

They are supposed to be experts in that sort of thing.

 

There is enormous variation in medical interventions offered to people with ME: pain killers, sleeping tablets, vitamin injections, etc, etc, etc. You only have to look at the various patient forums to get a sense of the incredible variety. Also some are listed in such as the MEA purple book.

Most may be regarded medical symptom management or as treating concurrent conditions. Some might (perhaps worryingly) even be regarded as experimental treatments for ME.

I personally am wary of taking unnecessary medication, perhaps over wary, however in specific circumstances such as traveling (when that was an option) I would ask my doctor for anti nausea drugs, drugs to manage my migraines and to manage my IBS. I regard these as symptoms of my ME as they are associate with periods when my ME is more severe and/or with PEM, though others might argue they are concurrent conditions.

We have no idea of the full range of on licence or off licence prescription drugs currently in use internationally. (Virtually) none have been evaluated in relation to specific efficacy for with people with ME. I have no idea if all are beneficial or if some are of no value or even harmful. I hope that in the UK we are just seeing rational attempts at symptom management, and certainly many people regard these medications as essential to maintaining their quality of life.

Some doctors are perhaps over prescribing, perhaps because of the discomfort at not being able to treat the underlying condition, others are perhaps under prescribing or refusing to prescribe because they believe they will reinforce their patients' 'false beliefs' by taking their symptoms seriously. Certainly MUS advocates would argue these medications should be denied.

Personally I would like to see much better understanding of what is happening and some form of formal evaluation of the efficacy of those in relatively common use, which sleeping tablets are helpful in ME, which pain killers are most relevant, etc. etc. Some system to decide which are unnecessary. But I do believe if people are being denied effective symptom relief this is worrying.

I am assuming this is what O'Leary is referring to, though we do not know if it actually is at present a significant issue.

 

Not really.

I sent a rude email to Diane and she has replied with great tolerance and hopefully we will have a constructive dialogue.

The point is that having a silly belief about something is not mental illness. It is something 'mentally normal' people have all the time. Mental, or psychiatric, illness means something quite different from 'biopsychosocial'. And people with psychiatric illness are not denied medical care (my wife had superb medical care once her mental illness was properly diagnosed). The BPS approach is not mental health care. Now that I have a copy f the full article I will make some adjustments to my prior comments, but I am afraid I still think the thesis is off target.

 

OK, that's interesting, something I'd not really considered, and most likely is a label incorrectly used in the paper.

But the BPS people do apply psychology based treatments to fix psychological problems (whatever the correct illness label is), which all comes under the general categorisation of "mental health", and once ensnared into that category, cuts pwME off from more appropriate medical care, completely isolates them from it. This I'm sure is what Diane O'Leary is trying to get across, even if some of the detail is not quite right ... but I do agree the detail does need to be right.

More generally, do we miss a trick by not homing in on what the correct terminology is for what the BPS crown do assert pwME suffer from? I know they talk of "unhelpful beliefs", which must surely at least come under the broad heading of "mental health". Is there a more specific psychological condition that applies? It would be good to identify what it is, so that we can legitimately accuse them of doing so and they could not validly deny it. Or have we already got there and it just passed me by?

 

Hello S4ME! I’m the author of the article you’re discussing on this thread.

For those who don’t know the name, I’m a philosopher and bioethicist who writes about psychosomatic diagnosis, MUS, ME, “bodily distress syndrome”… that kind of thing. I think I should start by saying that I do this work because I experienced the “psychiatric causes” confusion as a patient and it cost me 15 years of my adult life. (My first diagnosis was actually “CFS”, but that was overturned by a string of others and then by versions of “this is a psych problem”.) Turns out I have a rare clotting disorder and I just needed high dose blood thinners. After fifteen years of watching doctors reason poorly about MUS and the mind I could see that this is what I need to be doing now that I'm able to work again.

I’d like to try to clear up some confusions and then I’m happy to answer questions if anyone has any.

First, thanks Jonathan for your contributions to this discussion. You’re definitely right that if someone insisted ME patients must get medical treatment they’d be doing a really bad thing for the cause. Fortunately, my paper does not say or imply that. I never advocate for medical treatments in any way, or even raise the issue of which treatments are evidence based. My article has nothing to do with that debate.

On this point, Barry has the right picture of the article’s perspective when he says “medical care is not confined to pills and potions”. The paper defines “medical care” as “medical support, and testing and treatment as needed”. So basically I’m saying ME patients have a right to medical management rather than psychiatric management even when there are no medical treatments available. Practically speaking, that means patient care stays in medicine rather than shifting to psychiatry, so it’s oriented to the body rather than the mind. To be very clear, when it comes to ME management this is the view presented in the IOM report in 2015, now supported by the NIH and CDC. My paper explains why the new NICE guideline must give patients access to this kind of management.

I'm expecting, Jonathan, that when you actually read the paper you'll see little reason to argue with it. I don't think you're going to find anything in there that does not fully support the goals of s4me, or your own views. If you do feel inclined to stand by the early judgement that "the thesis is off target", I hope you'll first pin down what you think the thesis is and where you're seeing it. It's immensely helpful when people debate what I've written - I just want to make sure it's actually about what I've written!

I'll respond now to a post by Michiel.

 

Welcome @Diane O'Leary

 

Great to see you engaging here @Diane O'Leary .

 

@Diane O'Leary

I'm sorry to hear about your long wanderings through the medical wilderness. Happy to hear it is now resolved.

Welcome. And thanks for the article.

 

But then they'd have to be accountable for it and they can't have that. It's just so easy to just imply that we're mentally inept, all the weight without any of that pesky being accountable thing. It's a win-lose, where millions people lose but whatever.

 

One of the difficulties in dealing with the BPS advocates is pinning down what they actually believe about the nature of ME/CFS. Indeed some seem to shift what they say depending on their audience.

• CBT/GET were initially based on the ideas of an initial physical illness that though resolved left ongoing deconditioning maintained by false beliefs, which though positing a psychological mechanism, as @Jonathan Edwards says is not the same as saying it is a mental illness.
• Prof Crawley, though skirting the issue in research papers, in the popular press asserts that CFS is a biomedical condition, but that it can be biomedically treated by behavioural and psychological intervention. She likens CBT/GET to a 'pill' and believes she is directly treating brain function.
• Then there are those that propose 'central sensitisation' which is presumably posited as some form of neurological disorder/aberration.
• In contrast one must assume that advocates of functional neurological disorders and MUS believe they are making some form of psychiatric diagnosis. This is confused further by their assertion that they should say one thing to patients, so as not to spook them, whilst saying something else to colleagues. They certainly see us as best treated by psychiatric services and being denied access to other medical services.

Perhaps the only thing they all have in common are the beliefs that our symptoms can be treated by behavioural and psychological interventions and that our symptoms are largely irrelevant to the management of our condition. (Though Crawley does seem to believe that working on sleep symptoms is part of treating the unspecified underlying biomedical condition.)

So increasingly I am coming to agree that the psychiatric versus biomedical debate is a distraction until we have a consensus on clinically useful biomarkers, when it becomes irrelevant, and that what is currently important is the debunking of the bad science behind CBT/GET for ME and emphasising the evidence for resultant harm.

If this is the case then though O'Leary is raising some very important issues, she has also allowed herself to get drawn into an unproductive debate by the irrelevant BPS flummery. However I do feel that the more people that are examining this mess from as many different angles the better for our cause. I do feel it would be particularly important to have an ethical examination of the whole medically unexplained symptoms (MUS as a pseudo psychiatric diagnosis) debacle.

[added - sorry I was writing this whilst an number of posts appear including @Diane O'Leary 's, so appologies that my slowness means it fails to take things already said into account.]

 

Thanks, Michiel, for the suggestion that I join the discussion. I'm generally inclined to let what I've published speak for itself, but this article is actually about ME, and it doesn't seem right to let confusions about the article stand when I can just straighten things out.

So, I really appreciate the four clear points. I think I answered (2) in my response to Jonathan Edwards. Point (1) is really important – that people with mental health conditions might be offended because it seems I’m implying that mental health disorders are not biological, or not diseases. I’m not actually saying that, so I appreciate the opportunity to clarify.

There’s a discussion of this in the second section of the paper, but let me just say that I fully recognize mental illness as biological disease. I actually have very strong views on this – so I think everything that goes on in the mind correlates with stuff going on in the brain. So bottom line, there’s no difference at all between what we call “biological disease” and what we call “mental illness”. It’s all going on because of stuff in the body.

The thing is that there’s a very big difference between medical care and mental health care! If you have early stage lung cancer and your doctor provides only mental health care, you’ll die. Professionals see that clearly with cancer, but for some reason when it comes to ME and MUS they lose track of it.

So the IOM, NIH, and CDC are saying now that ME is a "serious biological disease" because that's the language that signals patients should be managed on the medical track rather than the track of CBT and GET. I use that same language for the same reason - but only after that stuff in the second section that explains I don't mean mental illness is not biological.

Honestly, the mind-body stuff is very complicated (particularly for a philosopher). I'm writing a few papers about it now - so it will be a while before those come out. The thing is that the BPS camp deliberately capitalizes on public confusion about mind-body issues. They get us to agree that it's all in the body or the brain (because it is), so then we agree that medicine and psychiatry should really not be distinguished (which is not quite right), and finally we accept that it's just fine to treat people who need medical care with psychiatric care - and that's seriously messed up!

Thanks for making space for me to clarify this.

Oh - on (3), we completely agree. I'm not sure why it would seem that I'm saying patients should only get medical care when there's proof they need it, but that is actually the view that I oppose in the paper. You are completely right about this - and the whole paper is intended to show why. Ethically speaking, everybody gets medical management if there's a chance that they need it. That's how the field of medicine works for everyone else, and that's how it has to work for ME.

 

Yes.

 

Thank you! And thanks to everyone for the very warm welcome.

 

No, it says the opposite surely ...

Also, does "mental health condition" necessarily equate to "mental illness", or does it also embrace other psychological issues that will inevitably be treated under the mental health banner?

 

Thanks, Barry - that's exactly right. I'm arguing for the opposite of Michiel's third point, and you've got exactly the right quote there. I'm not quite sure what you're asking about "mental health condition". In that quote I'm just saying that it's unethical for the guideline to characterize ME in a way that puts everyone on the track for mental health management rather than medical management. Hope that answers your question?

 

Welcome to the forum @Diane O'Leary - thanks for joining the discussion of your paper.

 

There is going to be a lot to discuss here and my contribution is going to be a bit piecemeal as I am trying to get from Switzerland to England today.

Welcome to Diane to the discussion here. I was expecting to send some emails and maybe I will, but maybe we should just exchange ideas here in open debate where others will contribute useful counterarguments from all angles.

But let us draw back and put the wide angled specs on. How did I treat osteoarthritis all those years? I concentrated on trying to explain what the problem was and to give it a name - both psychological techniques to try to get the person's 'mind' in a better place to cope with the problem, and certainly to deal with unhelpful beliefs of various sorts. I then explained what I thought was the most useful approach to physical activity - recommending this sort of exercise and not that. So what's different from what the BPS people do?

As I understand it having read the article this explaining and advising is pretty much the medical care Diane is advocating.

And my memory is from the NICE scoping meeting that I agreed with Charles Shepherd and Luis Nacul that the 2007 guidelines are actually pretty fair and appropriate apart from claiming an evidence base (not a theoretical base) for CBT and GET. I don't remember any reference to ME/CFS being a mental health problem or to that being a justification for the recommendation.