Thank you everyone, lots to think about here. Not least "will I break the multiquote tool if I put this many snippets in it?"... Sorry if I've missed anything important - I will, of course, blame the multiquoter. So, roughly in chronological order:
Except when it comes to self-reported outcomes after months of the patients being told they'll be cured if they ignore their symptoms. Then we're suddenly 100% trustworthy again, but only if we say symptoms are diminished
Oh, that sounds familiar for some reason...
More seriously, that's a big and interesting problem that I'm thinking about from the evidence end. Personal experiences, anedotes, and whatnot are very low-ranked sources of evidence in e.g. GRADE and other evidence-based medicine hierarchies. Yet medicine as a clinical encounter starts with taking patient histories, and (at least as British Drs are taught - can't be sure what happens elsewhere) these personal experiences are absolutely the foundations of diagnosis and so on. So I think there's a good piece of investigation that needs doing urgently - otherwise why the doublethink?
Coming back to epistemology. My conclusion from this is that the story with ME/CFS is not a balance of two competing theories of causation, as you suggest in your lecture, but a huge imbalance between
OPINION
1. Wessely school opinion about the efficacy of CBT and GET as treatments.
JUSTIFIED BELIEF
2. PACE, FINE and other trial evidence that CBT and GET don't work and patients' experienced evidence of harm from these treatments.
Okay, but that distinction to me is the ballgame, and I lack the relevant expertise to safely rule that one is just opinion, and the other a justified belief. That says nothing about the pressing worries about the influence of a small number of powerful actors in fundamentally altering practice here. But I do think that point 2 is right - although I have no professional experience of the harms side of the story (which a bit of digging round here tells me is huge).
A. The Royal Free outbreak - errors of fact that I outlined in my earlier post which undermine your argument in support of the hysteria side of the argument.
B. Your use of the term 'tired' instead of 'fatigue' - see my earlier post.
C. Your suggestion that patients object to the Wessely approach on the psychological versus physical causation grounds, rather than the resulting treatments as described above.
D. Your definitions of CFS as applying to the psychological model and ME the physical model of causation. This is factually incorrect in that many biomedical research papers also us the term CFS.
For all of these points, it's worth noting that the video was produced as an introduction to a seminar in which (among other things) PACE &co were discussed. This was for a group of students from both medicine and philosophy of science, so the obstacle - as is usual with this course - was to try and get everyone up to speed as quickly as possible with both the medical and philosophical issues at stake. I hope that explains some of the more contentious points with the video - it is, as I said before, really introductory.
(going quickly, please excuse brevity)
A: Ah, interesting, I wanted this to suggest to students that the hysteria story was not convincing. And - from this year at least - seems to have been the result with them. And, yes, thank you for the reading on this.
B: Yes, thanks, noted, will think again. I worry about making these teaching materials too complicated, but let me see what I can do.
C&D: Okay, yes, see your point. Again, trying to be very simple with this material, but entirely take your point that the actual picture is more complicated (and in places very different) from the overview I gave.
My main concern, and the reason I contacted you, is that the lecture leaves the listener with the picture of ME/CFS as an argument between patients who want to believe their illness is physical (ME) and doctors who think it's psychological (CFS). I would be interested to know whether you have asked your students before and after the lecture what they understand to be the cause of ME/CFS.
Well, no, I didn't ask them - but plenty of them volunteered their thoughts.
I can see that this makes an interesting topic for discussion on how disease is defined, but if in the process it misinforms future doctors and others about the nature and treatment of ME/CFS, that is hugely damaging to patients. I am sure you would not want that to happen.
I really hope it doesn't misinform them. My personal recollection about CFS when I studied it as a student was that I think I read something that presented the illness as entirely psychological. Is the harm here that you see me as uncritically endorsing Wessley? I'm saddened to think that this is the impression that the video gives. Certainly, in the context of the seminar that follows the video, the "uncritical endorsement" line wouldn't seem to apply (shouting about PACE etc).
psychology isn't science!
I am available for long and boring lectures on the history of the demarkation problem, if you're in the market for one.
I said we don't object to the difference of opinion between us and the psychiatrists on the grounds of theories of causation, but on the grounds that their treatments don't work and cause harm..
I stand by that statement.
But actually we do object on the grounds that it's classed as a particular variety of psychiatric illness - a psychosomatic illness. It seems that in many doctors' eyes this is little more than malingering, not wanting to get better, not worthy of medical attention or investigation or help. In other words it is the consequences of this particular psychiatric classification that causes particular harm to patients. We are judged unworthy of care. This is unlike other psychiatric classifications.
With you here x1000.
I do remember having zero tolerance for analytic philosophy.
Know how you feel. To me, though, the irritation seems a reason to try and do it better, rather than to ignore it. That's not for everyone, I know. And there's a big movement to try and make analytic philosophy of science more closely engaged with the practice of science & its history etc. I can't link yet, but happy to provide a few bits after my third post...
But the one thing that became clear over time is how philosophy -- which is highly theoretical -- can be used to obfuscate what is really important in life. It has a way of distancing itself from reality and how one ought to live in the world even as it's talking about it. The best way to understand life is to be involved in it. To get feedback from the interaction and to determine who you are in the context and to be that person or if you find what you see not to your liking to determine the need for changing. Philosophy doesn't work on the level of the rough and tumble interaction with the world as it is (although attempts have been made). I think the problem at least in part stems from a desire to what I call close the circle--always wanting to claim knowledge of more than is really possible--and generally appropriating/repurposing obscure language to do it along with the specialised jargon of philosophy.
I wonder about this in terms of generality, with the idea that the really abstract work that some philosophers produce is somehow more universal and basic than other kinds of scholarly stuff. Similar to the kinds of claims that get made for mathematical physics and the like - okay, it might be true that some physical law applies to everything everywhere, but that's not to say that other ways of representing some system might not be much more clear and useful and so on in a particular case.
I really don't see what the OP's point was in loading the video. Surely discussion was expected. I queried what points the poster thought B Clarke brought to the discussion of ME as illness. My thinking is as someone who knows this disease from experience and knows the disease in the context of society that a better discussion would have been about how diseases all through history have been used as tools to demonize and marginalise people whether they be leper's (who are cured with antibiotics) to epileptics who are still waiting for neurology to grow up.
For emphasis (although I think this was covered elsewhere) - I don't have personal experience of ME, and I don't have professional medical experience of it either. In the context of speaking about ME as an illness, then I'll cheerfully agree that the video brought nothing to the discussion of ME as an illness.
If you didn't mind talking about, it I'd be a bit interested in your views on your old notes, and why it was you seemed more trusting of PACE and the narrative promoted by Wessely & co than you should have been. To me it seemed like your views on the controversy here was very much of the sort being pushed at the time by Wessely, PACE the SMC, etc. Do you think that there was a degree of manipulation in the way that they constructed this narrative? I was unsure then (we can all be misguided in self-serving ways), but as time has gone on and they've continued to stick to it, while failing to engage with the evidence challenging the claims they've put forth, it looks more and more like cynical propoganda. I'd also be interested in your views on why it seemed this narrative was so readily accepted within UK academia, and if you think that there is now a growing awareness within UK academia that people may have got things badly wrong here.
Old notes: I think that, until the PACE trial material started to surface, if you investigated this issue in the usual medical/academic ways, it was pretty easy to come away with the impression that there was a safe consensus about CFS/ME - and one that worked along Wessely-ish lines. I don't know about manipulation, or wrong-doing, or anything in that context, and I don't know why the narrative stuck. I can say a few very generic things about this in the context of other cases where mistaken ideas have stuck around in medicine for much longer than they should have. My good example for a case of non-malfeasant error is about the causation of cervical cancer, about which there was almost perfect consensus (at least, as far as the publications go) in the research community for about 15 years. Researchers were
absolutely convinced that they'd found the cause, which was herpes simplex virus, and had lots of evidence to prove it. The problem is that they were wrong about the virus that caused cervical cancer (as we now know, HPV). Why did the wrongness stick around? I think it's multifactorial - a little bit of having appeared to have discovered something important about a major public health problem, a little bit of a few big labs being heavily committed to the idea, a little bit of the plausibility of the claim (lots of other herpes viruses cause cancers too). Can pass on boring bits of PhD thesis if this is of interest.
That was a whopper, very sorry if I missed anything.
