The Triumph of Eminence-Based Medicine - Brian Hughes

Many thanks, @Daisybell.

 

A character trait that I find admirable, and which is so very very alien to the likes of MS, SW, EC, etc.

Absolutely. Their own unhelpful beliefs are very damaging to PwME, and probably many others.

Could almost have been the title of a Sherlock Holmes book: The Strange Case of the Stray Apostrophe.

I think one of our greatest strengths is that we need simply to convince people of the truth, the whole truth, and nothing but the truth. It is what the 'other side' fear most I'm certain, because they should.

 

I also loved the use of Eminence Based Medicine. I am going to have to use that description.

 

'Eminence based medicine' is very apt!

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One criticism:
I think this passage:

is implying that there are a great deal of firmly established physiological findings, when there aren't many - I'm not sure there are any at all, although there may be some promising leads at this time.

I think this problem results from falling a bit into the psychological-physical dichotomy trap. Although you've set it up as psychogenic-organic. When trying to show that ME is not psychogenic, one naturally then wants to show positive 'organic'-sounding evidence.

I would keep the word 'psychogenic' since it is central to the BPS thesis, but I think the proper opposite of it is just 'not psychogenic'. ('Organic'/'Physical'/'Biological'/'Physiological' are not useful categories because they contain every disease, condition, and syndrome, unless we wish to believe in 'metaphysical illness', which we certainly shouldn't!)

The other useful dichotomy that comes to mind is 'responds to psychological intervention' vs 'doesn't respond to psychological intervention'.

So it's enough to argue against BPS by simply showing that the psychogenic etiology thesis is unsubstantiated at best, implausible, and contradicted by the results of PACE; and showing that there is no good evidence for benefit from CBT or GET regardless of what theory they stem from.

I think overstating positive physiological evidence weakens the position of advocacy. We need the standard of argument to be high to invalidate BPS BS. And it may compromise the standard of future biomedical research, which can itself contain loads of junk, and which we need to be of the highest quality possible.

 

Great work and great writing!

 

It depends what you mean. We risk missing the trees by only seeing the forest. Patients under research of deep biochemistry have hundreds to thousands (possibly over 2000 but I expect some false positives) physiological findings.

What we lack is physiological abnormalities that are proven diagnostic, either for the entire patient cohort or specific subsets. This is despite the fact that there are several tests now that clearly separate patients from healthy controls at near or at 100% accuracy. What this does not give us is an understanding of the big pathophysiological picture, or evidence that the specificity is high against all diseases.

The fact that we do not have tests that show a specific problem with all patients is not the same as saying there are no tests showing problems for most patients, though there are still issues with generalisability from, for example, severe patients to milder patients.

There are possibly nine or more diagnostic tests under development now. They are all based on specific measurable physiology.

 

I don't have any fancy software or anything, so did the last one (the Guardian podcast) the old-fashioned way, listening and typing. Your presentation is quite a bit longer, so I came up with the idea of slowing the soundtrack down (with software I use for recording/editing music) so I could type more, and not have to keep stopping the recording and going back.

Well, it sort of worked.........I kept the pitch the same, but I did keep laughing because it sounds like either you had had quite a few beers in the bar beforehand, or you were suffering from ME.
I think I shall persevere with it though and just try to contain my laughter.

(ps I think it will be a lot more enjoyable than transcribing MS at least)

eta: it reminded me of Chris O'Dowd on the last Leg

 

I recall feeling embarrassed, as a youth, when I realised that I had completely misunderstood Hegel's comment to the effect that the only thing we learn from history is that we learn nothing from history.

 

Oh my god!

Unfortunately, it's not just British, and I think I don't exaggerate if I say the situation in Germany (or Denmark or Sweden) is worse than in UK, because here ME doesn't get diagnosed at all. The BPS propaganda was that successful that, instead, you are diagnosed with depression, somatoform disorder or (if you're "lucky", haha) neurasthenia. Doctors here view ME as unreal, non-existent.

Personally, I believe this is linked to the kind of health system of a country. In USA, there is no "general" health insurance (even Obama care doesn't come close to what we have in UK, Germany, France etc.), it's private. The social system isn't very good, so costs remain relatively low. (US citizens, please correct me where needed.) And USA are the first to accept ME. The other countries want to reduce costs of the health system, and the BPS teaching "it's up to the individual to get healthy" is most welcome.

 

Good grief Sly Saint, I had thought you used software, you do it so quickly, amazing!

 

put it down to doing Duolingo for the last year and a half.

 

Well done I would warmly recommend transcribe.wreally.com if you're using the "listening and typing" method, it has some super helpful functions. (They recently added auto-transcription for English and a couple of other languages, but I haven't had a chance to try it.)

 

Actually, each person in the USA pays more into socialised health care than we do in the UK and maybe Germany. The absurd thing is that most of them get nothing in return because the contribution, despite being more than here, only covers a minority of the population - poor, old, veterans etc. So the pressure to reduce the costs of socialised medicine in the USA should be greater than here.

 

@NelliePledge @Jonathan Edwards, what I meant: The US health system is mostly private. Yes, people pay more; but the state doesn't. That's what counts. In contrast, the German, UK etc. health system is also financed by the state, and the state wants to reduce costs (and make possible profit maximization).

The health system counts as a service industry. As an industry, its aim must be profit maximization. That's easier if it's private. I guess in Europe they try to get there, too, but it has to be a process, or else the population won't accept it too easily. Also, in this setting you don't want chronically sick people that can't work, you want chronically sick people that work (or "disappear").

 

But that is the crazy thing. The state does pay more. Nobody realises that the US socialised healthcare system is more expensive than ours per person.

 

Wow! I certainly didn't realize that.

 

Seems like a perfect sweep of public money transferred into high cost service private coffers.

 

Yes, I agree.

I think that it would be hard for people such as Peter White and Trudie Chalder/Simon Wessely to set up bases like they did in Barts and King's in a health system where there are co-pays where consumers pay some or all of the costs. Too many patients would have voted with their feet/money not to attend such services and other competing services would be set up. Once Peter White and Simon Wessely had such solid bases, it allowed them to have little empires with research and the like, be seen as experts, etc.

[A reminder of some of the things Peter White and the Barts service said on draft NICE guidelines:
https://meagenda.wordpress.com/2007...g-the-nice-guidelines-for-cfs-me-tom-kindlon/ Such comments would damage the reputation of a service competing for a patient's "business".]

Accepting this doesn't mean that overall, one thinks that the NHS and similar systems aren't the best system(s). To me it's like being somebody thinking a particular drug or procedure is good or the best in a particular situation, but then going on to deny it has any side-effects.