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

Sorry, Diane, I was being sarcastic about the way they dismiss experts and world class universities. The calibre of people supporting us now is overwhelming and gives me hope for the first time in decades. They leave out where all these "activists" come from because it would show them up for what they are, second rate minds out for their own gain.

 

One of the main problems is the amount of faith that doctors outside of psychiatry and psychology place in the psycho social model.

In my experience neurology for one has pretty much given up its own profession and has an unhealthy belief in psychiatry, partly caused I think by it being a convenient dumping ground and psychiatry is only too happy to be the land fill.

 

Oh I see! Sorry I misread that. I think you're right. The way they treat scholars outside medicine - like David Tuller - really is a marketing technique. Like presenting patients as dangerous to avoid revealing the original data from the PACE trial. Anyway, so glad to hear that you're seeing reason to be hopeful. It's a wonderful thing to watch this change unfolding.

 

@Diane O'Leary

I think I need to add some context here to the issue of how the UK medical system views the US one.

Firstly we don't even have the same version of the WHO ICD. Having said that its ironic the the UK officially has recognised ME as a neurological disease since 1969 yet the US has not and codes it differently in their version.

Technically we never needed the IOM to make it official that ME is a biological disease in the UK. Yet the BPS crowd has ignored its own agencies for decades so why would our whole system just roll over to a "foreign agency"?

I think you need to understand that when it suits the UK establishment they use the narrative that something carries less weight simply because its from a non British agency not the other way around. In this case they build up a strawman based on the outside view looking in of the "mess of the US healthcare system with millions uninsured, the private insurance industry issue and the demon of big pharma".

They cherry pick and obfuscate partly to use an appeal to authority argument (their own authority) and keep well away from content of an argument that doesn't suit them.

They have already played the narrative that the IOM has lost it credibility by folding to patient pressure and all the usual "militant vocal minority stuff".

When Cochrane was about to withdraw the ME review the wife of a knight of the realm, Sir Simon Wessley who was involved in PACE, tweeted out that Cochrane had lost its way for doing the same. "Bowing to activist pressure".

She is an influential GP and was chair of the Royal College of GPs in the UK until recently. The chaos and scheming that followed led to Cochrane backing off and they now seem to have done a partial about turn.


Secondly the UK system obviously operates as a socialised system.

The US is a privatised system.

Socialised medicine reaches all people "equally". Equally badly, equally well or equally indifferently.

There's is a "healthy" scepticism against privatised medicine for profit in the UK.

When looking at the US system, and the FDA (including the production of food and its legislation etc) UK agencies can have a "protectionist" view against the "right" of everyone to have, not healthcare rights, but healthcare that is free from lobbyist and corporate influence.

It should be "scientifically" driven. UK medics do not simply bow down to US agencies and anyone from the UK that has been to the US and watched tv sits in amazement at the the commercials that seems to be longer than the TV shows that constantly bombard people with their "right" to the latest miracle pill for anything one can think of.

Its a fair criticism to say that when the right to a treatment is built into the psyche of the people there is going to be an extreme pressure on certain agencies, clever marketing, the issue of the revolving door between health authorities and private interests.

Without making any claims over whether a private or socialized system is better these are the complexities that we are left with when viewing one or another from the outside.

You rightly state that an organisation like the IOM should carry scientific weight around the world but equal argument can be made for Oxford University or Imperial College London, both of which have prominent BPSers.

How about the Lancet or the BMJ? Look how appalling they have been over the whole PACE saga. The name of a journal or an organisation carries no weight or is at least neutralised if one can just cite an opposing view from another "prestigious" journal or organisation. The perfect example is how the BPS crowd are using the HRA response. It is claimed as a clean bill of health for PACE so who cares about the IOM in America that crazy country that doesn't even regulate guns, is oftne the UK establishment stance. That's not a direct quote from them but sometimes Americans think the outside world hangs on the every word of pronouncements that come out of American agencies, when its quite the opposite often.

This is how the BPS crowd has done this for so long. Its not a content by content evidenced argument tactic, its confusion and obfuscation.

I note however that you talked about the IOM yet didn't touch on the DSM. The DSM is American, although in the UK officially we don't use the DSM it has massive influence and enables justification of psychiatric pseudoscience all around the world.

The APA is American, yet there hasn't been a squeak out of either of them about the issues surrounding how dubious alternatives acronyms for ME and many other diseases have been in order to swallow them up into their camp.

There's is no official statement from the DSM or the APA.

Currently the psyche of "protection" from dubious privately driven motives in medicine affecting the bottom line of the UK socialized system is adversely affecting the actual science around ME and allowing it to be polluted. Not because the people within the BPS crowd are scientifically driven but because they are being enabled by the pscyhe ingrained into UK medicine.

Obviously that's not the only reason, there are issues of withholding and rationing treatment and testing within socialised medicine (especially if its deemed unnecessary) which basically rolls over into medical science and the development of good science within medicine.

This has left a void for psychiatric pseudoscience to flourish in.

They have been left to get on with it as the high priests and as you say no one is really looking beneath the covers.

Now what we are left with is years of policy that has saved money week to week, careers staked on pride, poor education and gatekeeper practice, by default and design.

The DWP is the government, the NHS is the government, NICE is the government, etc. They are all in it together and they all stand to go down with it if the ship sinks.

 

Barring a breakthrough (and it's not clear what that is considering that many diseases have become accepted without many of the requirements imposed on us) I'm not sure there's going to be much progress until the elephant-in-the-room of overdiagnosis of psychosomatic illness is addressed. Even more significant is how so many of those are merely implied, without anyone actually bothering to attach their name to it, but with all the weight and consequences of a formal diagnosis.

What I don't get is how obvious it is that it's the same old mistake. So much of what has been written in the past on psychosomatic models of peptic ulcers, MS and other diagnoses is almost identical to what is written today about ME and MUS in general. But the belief within the medical profession is still that this is hardly ever a problem and that it's generally harmless, when history shows the exact opposite. The reflex to an imagined psychological cause is still somehow trigger-finger and unquestionable.

And I'm thinking that maybe in large part this is because there has never been a proper examination of those past failures. It's a sort of dirty secret that no one wants to admit because it would, naturally, require massive reform to redress past failures but also disrupt the entire profession.

Nothing makes that point better than the whole MUS (and its dozen acronyms) movement. It's as if after so many crop failures because all the fields were sprayed with Brawndo, the solution is to spray Brawndo concentrate instead, literally the worst possible solution to address a problem that is fundamentally misunderstood.

I understand the pain that would involve, there is a denial of all the harm that has been and continues to be done. It's just so much easier to mock those sick people as "embracing the sick role", whatever that is. But this can't continue. The MUS movement seems to me almost a reversal of the germ theory of disease, to fully embrace magical thinking, when we are actually at a moment in time where we finally start understanding the immensely complex relationship with the environment and the inner workings of the immune system.

Because it's far from just us (as you painfully know). We're some of the worst off but little of it has to do with us or this disease in particular. The flaw in the system is fundamental to it and we are merely experiencing its symptoms. There's an arbitrariness to it all that stratifies illness in a sort of hierarchy, something unacknowledged but is definitely in practice.

It's a huge change that will eventually happen on its own, but surely there's a way to help speed up the process. I think it's very likely that AI will highlight the problem before humans do, there's a sort of inherent bias to a profession that is so demanding that only very healthy and fit individuals can succeed at.

 

I'm sorry but AI will merely make things worse, not better. AI is configured by people, it's priorities, biases and objectives are set by people. But because people think it's effectively all knowing it will be deemed infalible. It's output will be set by politics, with no pesky ethical doctors to get in the way of political objectives.

how do I know this? I've met people.

 

It's not the programmer that's the problem but the data used to train the AI. Who will provide the data? White, Sharpe et al?

 

@Diane O'Leary I could be reading both you and @Jonathan Edwards wrong (always a strong possibility!) but I get the sense that among Jonathan's disagreements is that it's not that ME patients are being denied medical care but that we are being given bad medical care (i.e. CBT/GET). Your argument that psychiatric care is separate from medicine is going to be a difficult one to make for someone like Simon Wessley, who stated when he became the head of the Royal Society of Medicine that he has always believed that psychiatry "was at the heart of medicine." (Alas, I don't have ready access to the source for that quote -- but I know it's around this forum somewhere!)

Now perhaps I misread your article and you are distinguishing between psychiatry and psychology? Even with that--and I do understand why you would want to separate psychology from medicine--it's simply too messy and complicated to do so. Why does the British Medical Journal and Cochrane and the Lancet have mental health sections? Why do hospitals offer all sorts of CBT for all sorts of "medical" conditions (heart disease, cancer, COPD, hypertension, etc.)? To be sure, they do not offer CBT as the exclusive treatment as they do with ME, nor do they offer the same sort of CBT. But it seems to me that the problem is not one of ME patients being denied medical care, we are simply being misdiagnosed and/or given incorrect treatment.

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@Diane O'Leary Thank you for your continuing interest in advocating for people with ME. I have read your paper and have tried to make sense of the terminology you have used from the perspective of an NHS patient in England. I admit that it was a little confusing trying to 'translate' your central argument about being denied 'access to medical care' to our UK healthcare system. However, I think your previous report, in which you discuss the new ICD-11 PHC, makes your concerns clearer:

'...it seems clear that the US health authorities driving the new biological approach to ME are unaware of the WHO’s intention to route ME patients across the globe into psychiatry through the ICD-11-PHC.' (page 3 below link)

http://www.forward-me.org.uk/Reports/BODILY STRESS SYNDROME INFO SHEET CORRECTED.pdf

According to dxrevisionwatch, allowing 'CFS' and 'CFS/ME diagnoses to be reclassified as MUS or BSS seems to be already happening:

'In some areas of the UK, specialist multidisciplinary services for Medically unexplained symptoms (MUS) and Persistent physical symptoms (PPS) are already in place or are in the process of being developed [1], while some dedicated services for CFS patients are being decommissioned in order to save money or absorbed into services for patients with chronic pain. Some UK patients have reported having their existing CFS, ME diagnoses challenged by their GPs and re-diagnosed with “MUS” or with a mental disorder in areas where MUS services have been commissioned' (page 5 below link)

https://dxrevisionwatch.files.wordp...-bdd-bds-bss-in-classification-systems-v1.pdf

The impending roll-out of the MUS IAPT services certainly is intended to reduce the number of GP and hospital outpatient appointments, as well to limit the amount of potential medical investigations and diagnostic tests for patients put onto this pathway. Other co-morbid conditions are more likely to be missed or left untreated (this is already the case for many ME patients, but the risk will increase significantly). It is especially worrying for those of us who already have a difficult relationship with our GP (both the IAPT MUS 'Guidance for Commissioners' and the current BPS orientated RCGP CFS/ME training for GPs were written by the same person - Carolyn Chew-Graham). As you say, it is unethical and may also seriously impact the push to get more biomedical research into ME (and other conditions that fall under the MUS catch-all category) in the UK and other countries following this model.

This move to reclassify CFS/ME as a mental health condition may become an even bigger concern soon as there is currently work underway to link up a patient's medical notes across all health (and even social) care services. For most people this would lead to better care, but a BSS ICD-11 PHC code on an ME patient's GP notes may well have a detrimental effect for them when attending any hospital appointment (or inpatient stay) for any unrelated condition, as it will immediately make them seem like they have undue 'health anxieties' etc.

Edit: Corrected from 'BDS ICD -11 PHC code' to 'BSS ICD - 11 PHC code' in my last paragraph (original was a typo on my part - apologies for any confusion)

 

Exactly. Who will provide the definitions of improvement and recovery into that data, for the AI system to 'learn' from?

 

I appreciate you trying to clarify that @Michelle. For the record, @Jonathan Edwards and I are having a nice email exchange, so all is well on that front. You are absolutely right that in a discussion with patients the Wessely camp would insist that psychiatry is part of medicine, and that ME patients do receive medical care in the form of CBT/GET.

The phrase "access to medical care" is an everyday term to people working in bioethics. There are mountains of research on the many different forms of "obstructed access to medical care" It's a big issue in global health and health policy, for example. One of the useful things this paper does is to show the bioethics community that patients with ME have an "access to medical care" issue that needs immediate attention. Once they recognize that ME belongs in this category, they're able to instantly recognize the kinds of problems involved - and they instantly see them as urgent.

So that's the main reason for the phrase. In addition to that, though, I think it's important that even when we agree that mind and body are one, medical care and psychiatric care remain very sharply distinct. If you give a patient with early stage lung cancer patient only psychiatric care, she will not survive, right? With cancer everyone recognizes that med care and psych care are radically different. And they recognize that the cancer patient has a right to med care. We need to keep that same picture when we think about ME.

The current NICE guideline, with the CBT/GET recommendations, was developed based on research in psychiatry, not research in medicine. It is care ideally administered or at least overseen by people with psychiatric training. When the IOM and NIH decided to take a stand on behalf of ME as a serious biological disease, they insisted that ME is not a psychiatric condition. That means treatments developed on the psychiatric track become inappropriate, even if they're administered in medical offices. It means patients need "medical care" instead - the care you get in the medical departments of the hospital, not in the psychiatric departments. Care based on biological research.

The language that blurs the line between med care and psych care was developed for the purpose of ending conflict in the exam room. It is deliberately ambiguous, not because the professionals see this ambiguously, but because they know that if patients do, they won't argue about it. My sense is that we don't do ourselves any favors when we allow them to pretend that professionals see it that way. They don't. In a professional context Wessely fully accepts that ME has been classified as a psych condition. So does Fink. And they recognize that the US is now classifying it as a medical condition instead. So they're not going to have any trouble understanding the language of the paper. They just pretend that med and psych are one in the exam room.

 

Yes, language and terms are important. The propaganda that the mechanic view on body and soul, the distinction between psyche and soma is an anachronism, is of course right. Very few would disagree on that. That is not a problem for ME-patients. What is plain wrong though, is when these same people repeat the unnatural dichotomy over and over again to ME-patients, as some explanation for giving wrongful treatment? It gets us nowhere. It hurts patients with devastating effect. So patients will speak up, because it is more than peculiar that this kind of rethorics is so distinct aimed at ME-patients over and over again. Unfortunately the ones on repeat have nothing to loose, except their so-called good name and reputation.

Patients rightly need “med care”(even if there are very few options, but in principle and attention-wise), then maybe other interventions as support. That’s not the case today, much because of this never ending and confusing language much used only for creating and upholding chaos.

 

I'm so glad you raised the issue of the IAPT. And thanks for mentioning the thing I wrote about BSS. Incidentally, that very serious threat remains. If the WHO does recommend "symptom cluster criteria" in the new ICD for primary care, everyone who uses that manual around the world will channel care for ME down the psych track (CBT/GET) beginning with the first appointment. It's hard to get anyone to pay attention to this problem because it sounds so boring. (It was boring working on it!) Those criteria have been proven to "capture" ME patients for psych management, but they don't come right out and say that so people don't realize. It's so extremely deceptive.

Anyway, I hope you saw the comment about "access to medical care" above. Bioethicists recognize that phrase throughout the UK, so the article's target audience is clear about what I'm saying. So are Wessely et al.

About the IAPT - yes, that program is well underway and it classifies ME under the heading of MUS. MUS management is guided by the Joint Commissioning Panel on Mental Health, so the question of whether they're medical problems is silenced before it gets out of the gate. The IAPT program was developed based on the current NICE guideline, which unequivocally construes ME as a psych condition even though it's careful never to say that.

Suzie's quote on this is so valuable because it reminds us that it's about the money. MUS are the most expensive group of symptoms the NHS has to deal with, and there's a ton of research on the high cost of managing ME medically. More than 80% of IAPT's target population are MUS patients, so it's a program designed to save money for the NHS. The symptom cluster criteria that the WHO is considering for primary care have the same goal.

There are strong ties between the IAPT program and the inclusion of symptom cluster criteria in the new ICD for primary care. I don't think that's a coincidence.

 

I'm with you on all of these points @Trish. Very nicely put. The thing is that this is not going to convince anyone who doesn't already agree. To do that, the article starts with the ethical foundations in NICE's own documents. From there it raises an issue well known in ethics called "access to medical care" - and NICE has to recognize the seriousness of that kind of charge. When a paper in a highly respected academic journal charges them with obstructing access to medical care for patients in need they have to respond to it.

So the reasoning is based only on ideas no one can argue with. Everyone at NICE, and all the professionals in psychosomatic medicine have no choice but to agree with the basic ideas. The paper then shows that based on those ideas, it would be unethical for NICE to continue to characterize ME as a psych condition. It doesn't matter whether NICE agrees with the biological research or not. It doesn't matter whether they think the PACE trial was terrific. Based purely on NICE's ethical obligations, and the newly divided professional consensus, it's unacceptable for the guideline to characterize ME as a mental health problem. Anyway, that's the idea. (I'm late for work now!)

 

It will be a while until AI can actually learn anything in the sense that we mean with human intelligence. The initial roll-out of AI systems is all about solving simple problems, ones that normally require a minimal level of intelligence to solve, but doing so on a scale that is impossible to do by humans. It's about extending the benefits of massive computation in areas that have some degree of ambiguity, by training specifically how to disambiguate a particular problem.

AI systems can only "learn" simple things by being shown solutions to the problems, not from raw data. It's especially good at finding correlations, which can then be refined to identify causal relationships by human intelligence. Eventually AI will take that further but for now it will be put to the task of solving simple problems and using that knowledge to reduce the search space for humans.

 

This has already happened. I went to an A&E 70 miles from home in spring last year following a minor accident. I thought I might have broken my arm. I had never set foot in this particular hospital in my life before. When I gave my name and address the receptionist looked me up on her computer, found me, then looked up and scowled at me whereas she had been perfectly friendly with the people ahead of me in the queue. I also got odd reactions from the triage nurse. Luckily for me the injury I went there with was very obviously visible so they did what I wanted them to do (i.e. gave me an x-ray), and this confirmed my arm wasn't broken. However, if I had gone there with something invisible I doubt I would have been treated properly or taken seriously.

 

If MUS are so common it suggests that today's doctors aren't taught how to diagnose anything very much, at least if the problem is not visible. From the experience of friends and relatives over the last few years :

Doctors took :

1) 1 year to diagnose ovarian cancer - by the time it was diagnosed it had spread.

2) 6 months to diagnose lung cancer despite the patient being an ex-smoker showing all the classic signs.

3) 3 and a half years to diagnose a 4cm bleeding polyp only about 30cm up the colon.

4) About 3 years to diagnose a leaking heart valve. The patient was about a week from death at the time of being operated on because they were convinced her problems were caused by her lungs and never investigated her heart until it was really too late for a good outcome.

If doctors couldn't diagnose these problems even when IAPT was still young and testing for disease was possible, it implies that doctors in the UK are starting to pretend they have x-ray vision that tells them all is well whenever they feel like it. When are they going to change their name to "shaman" or start relying on the power of prayer to diagnose?

I read a post on a thyroid forum yesterday. Apparently a text book used by medical students in the UK now tells them that thyroid hormones are not essential for life. The medical profession has always thought that thyroid patients protest too much. Perhaps the plan is to stop treating them altogether. I would love to know if the incidence of myxoedema coma is growing, and how many psych patients are really suffering from untreated thyroid disease.