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

You don't need the MJ. The process falls down at the B.

 

and @dave30th

 

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,

 

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.

 

That's OK, I was more posting for general information than anything else.

 

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:

I ddn't know this either:

 

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.

 

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.

 

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.

 

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.

 

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...

 

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.

 

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.

 

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.

 

That's actually extremely rare, because it violates the peer review process.