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CFS/ME-Brendan Clarke UCL lecture in Philosophy of Medicine course

Valentijn

Senior Member
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15,786
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.
I think the problem here is that you appear to be approaching a problem philosophically when it's already been solved scientifically. Research by proponents of CBT and GET demonstrates that those treatments result in no objective improvement when objective data is collected and reported. Those CBT/GET proponents deal with that evidence by explaining that the objective outcomes don't matter - only self-reported fatigue is relevant.

And even the subjective improvements are questionable, due to poor design of CBT/GET trials, and the heavy emphasis on encouraging patients to treat their symptoms as being irrelevant. For example, in the Netherlands, the official CBT/GET guidelines prominently feature that the patients should be taught not to view themselves as patients. Then trials incorporating those guidelines will use the answer to the question "Are you still a CFS patient?" (or similar) to declare that CBT/GET has cured the patient. Hence the very process of CBT/GET revolves around inducing bias, which is specifically exploited by some of the questionnaires used to determine improvement, and is likely responsible for most or all of the positive effects seen after treatment.

The substantial nature of the role of bias in CBT/GET trials is also likely illustrated by the long-term followups, when conducted and reported. At that point, there is no longer any apparent benefit to having had CBT/GET, and even the most pathetic of control arms have caught up. Even if psychosocial researchers were correct in asserting that only fatigue matters, and not functionality, the effect of CBT/GET on self-reported fatigue wears off after a year or so, which suggests that the short-term fatigue improvements were entirely a result of bias, and the objective outcomes are more accurate and more predictive of long-term effects.

Harms from CBT/GET are indeed trickier, because the CBT/GET proponents do a piss-poor job of collecting such data. And when there is any collection of harms data, it's done in a manner to minimize the reporting of post-exertional malaise - for example, by declaring that an adverse event must last at least two months to be "serious", and by grouping together everything else as non-serious. Thus being bed-bound for a month following a week of GET would be buried in a mound of hundreds of minor and incidental symptoms. And even in the PACE trial where that burying of PEM happened, GET had significantly more Serious Adverse Events - until therapists unblinded the patients and decided that the adverse events couldn't be related to the therapies.

So with a lack of good evidence from trials, which we would all prefer, we fall back on huge patient surveys. A fairly large majority of patients report being harmed by GET, and very few report finding any benefit from CBT and GET. We can also look at the studies from teams of exercise physiologists around the world which show that ME patients have a decreased VO2max 24 hours after a prior maximal CPET, something which happens in no other known group, including sedentary, deconditioned, or ill controls who don't have ME. While not conclusive proof that exercise is harming us, it does suggest that patients are correct in asserting that exercise makes them very sick in a way which doesn't even remotely resemble deconditioning. At the very least, that should shift the burden onto the GET proponents to carefully and thoroughly prove that exercise is safe despite those demonstrated physiological abnormalities.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
It seemed clear to me that Brendan Clarke is introducing students to philosophical thinking around medicine. His students aren't going to be assessed on their knowledge of me/cfs.
In using philosophy its important to separate the methods of philosophical analysis from the content material that is analyzed.

In my honours year we had one course based on analysis of a topical book of relevance to computer science and artificial intelligence students. The book was rubbish. The course was invaluable. I actually joined in the course twice more during my PhD candidacy, without credit. It was how to go about analyzing material that at first appears obtuse or complicated that made this course so valuable. I use those skills to this day.

Quite a lot of philosophical material is irrelevant or even nonsense. Its the methods that matter more than the content.

My personal opinion is that a lot of traditional philosophical material is still used because its well understood by philosophers, and serves as a good platform to teach from.

My own background, aside from biochemistry, is in artificial intelligence. While I focused mainly on machine learning especially neural networks, a lot of my experience was in symbolic logic, theory of knowledge (including science) and philosophy of mind. It turns out my current stance is I am a critical rationalist, and beyond that a pancritical rationalist, and monist on theory of mind.

While these things have no deep relevance to ME or CFS they give rise to tools that can be applied to the ME debate. This includes the collective fallacies of things like the PACE trial, and beyond that to psychosomatic medicine.

I am deeply concerned with both the systemic failures in medical thinking, and with the cultural issues that are part of this. Evidence based medicine is in danger of being railroaded by special interest groups that distort the evidence and argument. PACE, and evidence based review processes on CBT and GET, are part of the issue that demonstrates that. Indeed, it is still my view that even the IOM report that gave us the SEID definition was based on a flawed process, though its invaluable as a political tool.

Philosophical analysis is just a collection of tools. So is mathematics. Its people and how they apply the tools, and to what issues, that help determine if its useful or not.
 

Esther12

Senior Member
Messages
13,774
I forgot the most important bit! What should I read? Any suggestions gratefully received.

When our thread on the PACE trial got to over 100 pages, a seperate thread linking to summaries, etc was posted here: http://forums.phoenixrising.me/inde...ques-links-thread-no-discussion-please.14121/

I've just thought that I should update it with the papers from the recent Journal of Health Psychology's special edition on PACE: http://journals.sagepub.com/toc/hpqa/22/9

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 agree, and see that as a really worrying thing about 'the usual medical/academic ways' of researching a topic. Many patients have been trying to draw attention to these sorts of problems or years, but it has seemed that for many in academia 'examining the evidence' meant 'trusting Cochrane review and peer reviewed articles' rather than really digging in to the details.

edit: related to this point, another thing worth reading would be the comments Robert Courtney submitted about a Cochrane Review, and the author's evasive responses. Available here: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD003200.pub7/full
 
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alex3619

Senior Member
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13,810
Location
Logan, Queensland, Australia
And even the subjective improvements are questionable, due to poor design of CBT/GET trials, and the heavy emphasis on encouraging patients to treat their symptoms as being irrelevant.
I have to make a bigger issue of this ... its not just questionable, they have failed to validate their point scientifically. Even if you ignore the serious failures in methodology, and believe they did everything right, the failure at long term follow-up to refute the null hypothesis, which is most likely because the results were originally biased and from regression to the mean, demonstrates they have no valid hypothesis. So does a failure in every other study using objective outcome measures.

Beyond that the history of psychosomatic medical claims about diseases is an unmitigated history of failure. In every disease we finally understood the psychosomatic claim was rejected. Every one. Now this does not prove there might not be some psychosomatic diseases out there, what it does demonstrate is that claims to psychosomatic causation have no established scientific basis.
 
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alex3619

Senior Member
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13,810
Location
Logan, Queensland, Australia
but it has seemed that for many in academia 'examining the evidence' meant 'trusting Cochrane review and peer reviewed articles' rather than really digging in to the details.
Not just regular academia. Practicing clinicians show the same uncritical deference to systematic reviews far too often. Doctors are busy, and overworked. They look for shortcuts. Sadly this means the process of updating their knowledge can be distorted. This is compounded by research showing most doctors do not have a sufficient knowledge of statistics to avoid basic errors of interpretation. I personally think that this claim could be extended to scientific methodology.
 

Marco

Grrrrrrr!
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2,386
Location
Near Cognac, France
Without being too wordy and stuff philosophy. It doesn't come down to one group of medics believing that ME/CFS is largely psychological and patients believing otherwise - it comes down to a biopsychosocial model of ME/CFS with no proven theoretical underpinning and when objectively reviewed whose therapies have zero efficacy, against patients who may believe their illness started after a virus; mould; overtraining; stress etc but can't point to definitive evidence to 'prove' causation.

ME/CFS as a collection of symptoms remains 'medically unexplained' but that means exactly what it says - not psychosomatic by default but medically unexplained.

The emphasis should be on medically explaining not word games.
 

trishrhymes

Senior Member
Messages
2,158
Thank you @Brendan Clarke for tackling the multitude of points I raised. I do appreciate it.
I am pleased you are willing to read and learn more.

I think the Journal of Health Psychology special issue on PACE that came out a couple of weeks ago is well worth reading from cover to cover, as each article tackles a different aspect of the situation. It's all on line as has already been indicated:
http://journals.sagepub.com/toc/hpqa/22/9

See AB's post below this one for a better link.

I think it is interesting to note that the editor of that journal, David Marks, had not heard of the PACE trial until a year ago when he received the paper by Keith Geraghty. I don't know the exact order of events after that, but he decided to invite 20 people from each side of the argument to write articles, as he describes in his introductory editorial, and only received 2 publishable pieces (out of 5 submitted) in support of PACE.

He is now an ardent convert to the anti PACE cause as a result of what he has learned from the critiques. He is continuing to tweet about it, including about an article that didn't make it through peer review and was posted on the Mental Elf blog. The behaviour of the pro PACE side is instructive I think. James Coyne's blogs are very outspoken on the subject too.

And you really should look at some of the biomedical research too if you have time.
Rather than wading through individual biomedical research papers, of which there are many hundreds, here are a couple of particularly useful brief summaries:

This one summarises some of the biological evidence demonstrating why exercise is bad for people with ME and why it's not due to deconditioning:
https://oatext.com/pdf/PMRR-2-134.pdf

And here's an overview of some of the research in Nature
http://www.nature.com/news/biologic...onic-fatigue-syndrome-begin-to-emerge-1.21721

You might be interested in the current discussion on the NICE guidelines, discussed here:

http://forums.phoenixrising.me/index.php?threads/mea-hear-back-from-nice-about-the-identity-of-‘topic-experts’-13-august-2017.53442/page-3

note particularly post #54 from Charles Shepherd, the medical advisor to the MEA who is fighting this issue valiantly.

And in David Tuller's latest Virology blog piece posted today:

http://www.virology.ws/2017/08/14/trial-by-error-my-e-mail-exchange-with-nice-chief-executive/

discussed here;
http://forums.phoenixrising.me/inde...f-executive-14-august-2017.53470/#post-888258
 
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A.B.

Senior Member
Messages
3,780

Barry53

Senior Member
Messages
2,391
Location
UK
My work is largely about epistemology in medicine, particularly relating to the ways that clinicians use evidence from randomised trials to guide their practice. I'm currently working on PACE (and have been since I read the first few posts by David Tuller in 2015), largely because this is a case where too much trust has been placed on a poor piece of research, and that trust has been justified (in part) because of the kind of methods used to conduct the trial. That's important for ME care, obviously, but also important for medicine more generally because there are lots of other examples where similar things have happened in other diseases too.
Good to hear.

Welcome, by the way, @Brendan Clarke.
 

Barry53

Senior Member
Messages
2,391
Location
UK
I confess I had to look up Epistemology. To save me forgetting and having to look it up again, here's the definition I found:

'Epistemology.
the theory of knowledge, especially with regard to its methods, validity, and scope, and the distinction between justified belief and opinion.'
Me too :). This especially attracted my attention: "the distinction between justified belief and opinion".
 

Barry53

Senior Member
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Location
UK
Couldn't agree more. Nor is sociology, economics or any of the other so called social sciences.
Which to me begs the (genuinely asked) question: What is science? I appreciate there will be zillions of opinions out there in the big wide world, but I would be really interested to know people's opinions here.
 

Barry53

Senior Member
Messages
2,391
Location
UK
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 there is a fundamental aspect of human nature that contributes to this: the thing you are most likely to believe is the thing you most want to believe. If mistaken-belief researchers are passionate and influential enough, then this behaviour-driver can take hold. Even worse if they lack the ethics to then acknowledge they are wrong, even when everyone else is legitimately telling them so, and that it is harming patients to not change.
 

Barry53

Senior Member
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2,391
Location
UK
Evidence based medicine is in danger of being railroaded by special interest groups that distort the evidence and argument.
"Evidence based medicine" is a widely used description I find somewhat worrying, because that very description seems open to abuse. Whenever that terminology is associated with a medical treatment, people (including medical professionals and regulatory bodies) seem to blindly assume all must be OK. But it depends what evidence was considered; what was available; what was actively sought; what even, may have been deliberately excluded. The phrase "evidence based medicine" almost feels like a marketing slogan, sounding good but open to misuse and abuse.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The phrase "evidence based medicine" almost feels like a marketing slogan, sounding good but open to misuse and abuse.
Much like biopsychosocial, some of it is a good idea, and we need something like it, but what we have is sometimes worse than nothing at all. Evidence based medicine has saved a lot of lives. Its also routinely abused in areas like psychosomatic medicine. How can you have an evidence base for a supposed disorder in which you don't even have an objective test? How do you cope with mass production of poor quality RCTs that are then used to claim its all evidence based?

I am not a fan of authority driven centralized evidence based processes. I am a fan of evidence based practice, in which doctors are given the training to figure things out for themselves, and no central authority dictates medical treatment. Imagine if doctors were given the tools to have seen through the PACE trial from the outset? Things would be very different now.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Which to me begs the (genuinely asked) question: What is science? I appreciate there will be zillions of opinions out there in the big wide world, but I would be really interested to know people's opinions here.
I was looking into this quite deeply some years ago when my brain was working a lot better. Its not easy to define. In particular there is no well established definition of pseudoscience. However there are many characteristics of pseudoscience, and I think PACE, for example, ticks a lot of the boxes. I was looking into that, preparing to demonstrate this view was justified, when my brain did another crash and burn.

What we wind up with is a long list of criteria, and not all science will tick all the boxes. Its the same with pseudoscience.

In critical rationalism any scientific hypothesis has to be tested. You can never be sure its right. Its more about weeding out the wrong hypothesis. Test, test, and retest. In PACE they tested but used a mismash of biases that drive results toward accepting their hypotheses. I think that is pseudoscience.

Its particularly telling that a known biased method, mathematically invalid, was used in the calculation of normal by using standard deviation on a data set that resembles a hyperbolic curve, though I suspect its more like half a bell curve. Furthermore we now have proof that the principal investigator knew this was a biased method and used it anyway.

Its then promoted by public relations and political methods; kept out of scientific spotlight by denial of data requests; critics are silenced by claims they are vexatious or militant or by implication they are crazy, and reliance is made on post hoc criteria and subjective outcomes even when they clash with objective evidence. Terms used have specialized definitions, rather than using regular meaning, such that CFS is not CFS, ME is not ME, CBT is not CBT, GET is not GET, adaptive pacing is not pacing, normal is not normal, and recovery can include serious disability.

I think when objective evidence is ignored in favour of subjective evidence we have a basis for suspecting pseudoscience rather than science. You can control for subjective evidence to some extent with double blinded trials, but in unblinded trials there is no way to properly evaluate the outcome. Using rhetorical devices to justify this further reinforces a pseudoscience claim.
 

me/cfs 27931

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Dr. Conway McLean recently wrote about evidence based medicine and PACE:
Mining Journal said:
American physicians have been strongly influenced by the PACE trial. This may be the result of our devotion to the concepts of “Evidence Based Medicine.” One simply has to publish a study, whether well-constructed or not, biased though it may be, perhaps even deeply flawed, and the results can be adopted and repeated as gospel.

The research community, on the other hand, has rejected the psychiatric model epitomized by PACE. They instead are looking for a physiologic explanation, whereby there is some actual, physical phenomenon at work.

http://www.miningjournal.net/life/2...yndrome-reality-conflicts-with-medical-study/