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

John McMillan, University of Otago, Dunedin, New Zealand is the Editor in Chief of the Journal of Medical Ethics, https://www.otago.ac.nz/healthsciences/expertise/profile/?id=1279. Full board of the Journal can be seen here, https://jme.bmj.com/pages/editorial-board/

From http://www.scoop.co.nz/stories/ED12...y-appoints-next-bioethics-centre-director.htm,
After completing an Otago BA (Hons) in 1994 and PhD in 1998, Dr McMillan left an assistant lecturer position at the Otago Bioethics Centre to take up a Junior Research Fellowship at University College, Oxford. In 2002 he was appointed as University Lecturer at Cambridge University, and in 2004 joined the University of Hull York Medical School and Philosophy Department as a Senior Lecturer. Since 2009 he has been an Associate Professor in Ethics, Law and Professionalism at the Flinders School of Medicine.
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Andy said:
John McMillan, University of Otago, Dunedin, New Zealand is the Editor in Chief of the Journal of Medical Ethics, https://www.otago.ac.nz/healthsciences/expertise/profile/?id=1279. Full board of the Journal can be seen here, https://jme.bmj.com/pages/editorial-board/

From http://www.scoop.co.nz/stories/ED12...y-appoints-next-bioethics-centre-director.htm,
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Thanks for that @Andy. It wouldn't be in my interest, or in the interest of my work to make a public fuss about this, though. It is very good news that a BMJ journal was so very close to publishing a paper that says ME patients must have medical care. That's good progress, and if I become the person who alienates editors I won't make much more progress. Sad but true. I made sure to subtly mention this kerfuffle in the paper's acknowledgements, thanking JME reviewers for their unreserved enthusiasm.
 
Diane O'Leary said:
Thanks for that @Andy. It wouldn't be in my interest, or in the interest of my work to make a public fuss about this, though. It is very good news that a BMJ journal was so very close to publishing a paper that says ME patients must have medical care. That's good progress, and if I become the person who alienates editors I won't make much more progress. Sad but true. I made sure to subtly mention this kerfuffle in the paper's acknowledgements, thanking JME reviewers for their unreserved enthusiasm.
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That's OK, I was more posting for general information than anything else. :)
 
Snowdrop said:
This article and the one by Hilda Bastian https://blogs.plos.org/absolutely-m...-the-me-cfs-exercise-dispute-matters-so-much/ feels like a breach in the wall.
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I've only just seen this. Its extraordinary that Hilda Bastian has come out so strongly in our favour. I thouhg this was a very interesting point:
Exercise is something of a sacred cow to many – including in the evidence community. So there was a constituency that wasn’t going to be as critical of studies claiming advantages of exercise as they might be for other treatments.
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I ddn't know this either:
In 2011, a guideline for how to reliably assess the validity of PROMs was released, called COSMIN for short. And in 2012, Kirstie Haywood and colleagues followed it in their systematic review of PROMs for ME/CFS.

They paint a dismal picture of the quality of PROMs for ME/CFS and a lack of robust enough development and evaluation, including for the Chalder fatigue scale and the first version of the other PROM primary outcome for physical function (SF-36: they used version 2). Neither is strong enough to lean on for ME/CFS. The result for the evidence on ME/CFS treatment, they believe, is as devastating as the implications for AHRQ on diagnosis.... Lisa Whitehead did a pre-COSMIN systematic review in 2009: she came to the same conclusion about the lack of adequate evidence to support the Chalder fatigue scale.
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Exercise is something of a sacred cow to many – including in the evidence community. So there was a constituency that wasn’t going to be as critical of studies claiming advantages of exercise as they might be for other treatments.

Yes, it is interesting to see how surprised people seem to be about criticism of exercise. I get the impression that the zeal that led to setting up Cochrane, in several cases, was tinged with an anti-dharma pro-natural self-help doctrine that would find criticism of exercise alien. Peter Gotsche has indicated surprise that anyone should think there was anything wrong with exercise. I was talking to someone I met skiing who works in a clinical trial facility and is very aware of issues of evidence and safety. Again, her view was 'Surely it is worth trying physio before trying drugs? - It can't do any harm can it?'

Bastian seems to have learnt early on to question her own intuitions and replace them with hard reasoning.
 
Jonathan Edwards said:
Exercise is something of a sacred cow to many – including in the evidence community. So there was a constituency that wasn’t going to be as critical of studies claiming advantages of exercise as they might be for other treatments.

Yes, it is interesting to see how surprised people seem to be about criticism of exercise. I get the impression that the zeal that led to setting up Cochrane, in several cases, was tinged with an anti-dharma pro-natural self-help doctrine that would find criticism of exercise alien. Peter Gotsche has indicated surprise that anyone should think there was anything wrong with exercise. I was talking to someone I met skiing who works in a clinical trial facility and is very aware of issues of evidence and safety. Again, her view was 'Surely it is worth trying physio before trying drugs? - It can't do any harm can it?'

Bastian seems to have learnt early on to question her own intuitions and replace them with hard reasoning.
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Yes, I'd not really caught onto this perspective, but it is quite enlightening. I suspect that humans have very likely evolved towards a mindset that places propensity to exercise on a high pedestal, and rightly so. The underlying trait probably well established long before humanity appeared on the scene. There could well have been many failed evolutionary lines which went extinct due to some inherited trait which saw a nourishing juicy meal strolling past and thinking "naah, can't be arsed". Evolving a societal admiration for willingness and ability to exercise would be no surprise, given its survival benefits. And no matter how modern we modern humans may like to think ourselves to be, we are primarily still dominated by deep rooted evolutionary traits.

So the belief in exercise being only ever for the good may almost literally be in our dna. From a survival of the species perspective, the fact that may not always be right would be irrelevant. But it probably means there are likely some incredibly deep-seated beliefs about exercise with respect to sick people that will be very hard to change, especially when there are so many ailments where exercise genuinely can be the best medicine.
 
Diane O'Leary said:
You are so right about the money @boolybooly. Patients with "MUS" are the most expensive group for insurers and for every national health system, and mental health management has been proven to dramatically cut costs. This worries me when it comes to the new NICE guideline. Is NICE working with the budgetary changes that will be necessary for medical management of ME? NICE is usually transparent about its financial calculations, but we don't hear a peep about the money when it comes to the ME guideline.
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on As a one-time Londoner I am appropriately cynical: NICE will come up with a close replica of what it now has and does. The key will be to keep the King Weasel on his throne and all the vassals profitably employed in pretending to administer wellness while happily populating the groves of academe. NICE will fabricate its maths as convenient. Do not worry about the details. Discrepancies can be smoothed as necessary by cutting the commoners' sick and disability benefits and raising V.A.T. on baby food.
 
Medfeb said:
I'm not understanding this comment. The IOM provides substantial evidence that multiple systems are involved. What am I missing?[/Q DianeO'Leary, Jonathan Edwards, Mithriel, Regarding IOM you may wish to keep in mind that IOM was simply a review with commentary from a panel selected by IOM. The review EXCLUDED all material pre-1988 -- a bit like studying British history and starting with Winston Churchill. It could not unearth much about the data, definitions, context or so forth in the "9,000 articles" ostensibly reviewed. It upheld the US health agencies' short shrift for immune, neurological and pathogenic components, instead emphasizing orthostatic and sleep-related issues as well as post-exertional "malaise."
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Jonathan Edwards said:
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.
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Jonathan Edwards, I had a report of a patient attending the Royal Free cfs/ME clinic, being assigned CBT, doing it with no benefit and being then informed by RF that that was it; she'd had her one treatment. And I'm sure you are aware that testing for pathogens or immune abnormalities is beyond the ken in any event -- as insisted upon by BPS authorities such as Doc Simon, who says it's bad for patients because it only encourages them to think they've got a disease (rather than "false beliefs") I would disagree that knowing a patient's immune status is not "of help." Ditto pathogens in residence. Plus GPs who have had their beliefs shaped by BPS leaders for a generation typically cannot offer much help.
 
deboruth said:
And I'm sure you are aware that testing for pathogens or immune abnormalities is beyond the ken in any event -- as insisted upon by BPS authorities such as Doc Simon, who says it's bad for patients because it only encourages them to think they've got a disease (rather than "false beliefs") I would disagree that knowing a patient's immune status is not "of help." Ditto pathogens in residence.
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The advice against testing for pathogens and immune abnormalities has nothing to do with BPS people or 'mental health care'. The infectious disease physicians have found no infections and the immunologists have found no abnormalities. The advice comes from physicians in the relevant specialities.
 
Jonathan Edwards said:
The advice against testing for pathogens and immune abnormalities has nothing to do with BPS people or 'mental health care'. The infectious disease physicians have found no infections and the immunologists have found no abnormalities. The advice comes from physicians in the relevant specialities.
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But if ME/CFS is a diagnosis of exclusion, then the diagnosis can not be given until the pathogen and immune function testing has been completed and returned no abnormalities. Besides which, actually doing the testing can uncover missed diagnoses, like celiac.
 
Lidia said:
But if ME/CFS is a diagnosis of exclusion, then the diagnosis can not be given until the pathogen and immune function testing has been completed and returned no abnormalities. Besides which, actually doing the testing can uncover missed diagnoses, like celiac.
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Every doctor is faced, with every patient, with choosing tests that are more likely to give a useful result in the context of their story and physical examination than the ordinary healthy person in the street. For people presenting with the clinical picture of ME we do not have evidence that any of these tests are more likely to give a useful result. They are tests for conditions that have other symptoms and signs. Celiac disease presents with a different story from ME but in fact there is sufficient overlap that screening for celiac is recommended. I think when people talk of immune function they are referring to things like immunoglobulin levels and NK cell tests. But following multiple replications it now looks as if these are much the same in ME as in healthy people. The same applies to viruses and other pathogens.
 
Snow Leopard said:
Not the first time I've heard of a paper to be sent out for peer review, gotten good reviews and then be rejected by the editor. You have to wonder why the editors want to waste everyone's time...
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That's actually extremely rare, because it violates the peer review process.
 
Diane O'Leary said:
MUS care is not managed medical side of the health service, but by the mental health side - so nobody is asking "when should patients with unexplained symptoms continue to have medical management and when should they get mental health support instead?" The NHS sees all 52% as mental health patients. In the UK, every patient with unexplained symptoms is automatically a mental health patient.

It's very strange that the public does not know this! People think that "all in your head" is an unusual thing - nobody imagines that it's as common as all medical diagnoses combined.

So what's happened to ME patients is happening to many other groups as well - they're just not as organized. Fibromyalgia, Ehlers-Danlos syndrome, mitochondrial disorders, autonomic disorders, chronic pain, long term Lyme.... It also happens to people with common diseases. 51% of people with autoimmune disease say they've been wrongly denied medical care in the past based on some kind of psychosomatic diagnosis (like MUS). Studies show it's a serious problem for rare disease patients too.
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I have a feeling that quite a few acute issues are classified as MUS when someone first sees a GP leading to early signs being ignored and late diagnosis. Although this isn't new. I came across a story of someone who had brain cancer who was dismissed as having stress headaches (I think that was in the 80s). A friend had aplastic anemia and was dismissed by a number of different GPs (one said 'you are too young to be ill go and get some exercise').

One of my big concerns with MUS is it encourages doctors not to do testing or to look for issues before they become obvious. I see it as something that gives permission not to be careful, do appropriate testing and think. In this way it seems like a very dangerous approach.
 
Jonathan Edwards said:
Every doctor is faced, with every patient, with choosing tests that are more likely to give a useful result in the context of their story and physical examination than the ordinary healthy person in the street. For people presenting with the clinical picture of ME we do not have evidence that any of these tests are more likely to give a useful result. They are tests for conditions that have other symptoms and signs. Celiac disease presents with a different story from ME but in fact there is sufficient overlap that screening for celiac is recommended. I think when people talk of immune function they are referring to things like immunoglobulin levels and NK cell tests. But following multiple replications it now looks as if these are much the same in ME as in healthy people. The same applies to viruses and other pathogens.
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If someone presents symptoms of fatigue then the response should be to test for things that could cause fatigue; first looking at the most likely issues given an examination. The issues come when doctors are sold and have a tendency to believe in MUS hence their first assumption is that the disease is psychological and therefore tests aren't necessary. We hear things like 50% of those going to specialist CFS clinics are found not to have ME so it looks like something is going wrong.


Jonathan Edwards said:
Celiac disease presents with a different story from ME but in fact there is sufficient overlap that screening for celiac is recommend
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I think its only recommended for children.
 
Diane O'Leary said:
You don't know how useful that is, Andy! The paper of mine that just came out in Bioethics spent a whole year under review at "Journal of Medical Ethics" - which is the ethics arm of the BMJ. All 3 reviewers praised it to the skies. One said it was so important that it needed to be public access (though he did also suggest the journal should hire an attorney just in case, because the paper would upset the powers that be).
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The BMJ have a really bad approach to patients with ME. For example, when the PACE data was released they commissioned Nigel Hawkes (a journalist) to write a nasty story and they didn't even publish a rapid response from Alem Matthees who got the data and who Nigel Hawkes claimed to have tried to contact but didn't. Before Nigel Hawkes had written a really nasty article about patients with ME for them - the normal ME patients are violent towards researchers meme.

At the same time that the BMJ was condemning patients for looking at the quality and results of ME trials the BMJ editor was giving talks about the importance of patient participation.

I don't know if you are aware of the issues with some papers from Esther Crawley where the BMJ open have published a paper where Crawley tests a new 'service' for children with ME involving looking for school absence and getting patients that way. There was no ethical approval for this.
http://www.virology.ws/2018/02/26/trial-by-error-our-exchange-of-views-with-bmj-open/

But the BMJ are being very very slow to address the issue and if David Tuller wasn't being persistent would have brushed it under the carpet.
 
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