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

[Snowdrop]

The lecture and notes are what they are, and had the purpose that they had.

I'm sorry but I'm not clear as to what the purpose was. Is anyone else unclear?

 

[Snowdrop]

Also, a small point but even in the middle ages when there were outbreaks that were labelled hysteria modern science has uncovered reasonable explanations such as ergot poisoning and St Vitus dance which could be viewed as group hysteria also is actually Sydenham's Chorea a streptococcal infection. So the idea of hysteria is misplaced to think in terms of psychologic explanations.

 

[Skycloud]

I've been in touch with Brendan on Twitter. He thanked me for the links I sent him and says he is happy to engage with us and is busy today but hopes to join us tomorrow, though I guess that might be delayed by him having to go through the application and approval process to join PR.

Thank you for that @trishrhymes.

I'm sorry but I'm not clear as to what the purpose was. Is anyone else unclear?

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. (Have I understood what you are asking?) I imagine that explains why his lecture is lightweight on content of me/cfs arguments.
No excuse really for his handling of Ramsay. I'm interested to know why use Ramsay/Royal Free Hospital?

I find what Brendan Clarke says from about 18:26 minutes in the lecture 6 video interesting:

"My kind of crazy assertion to close with though is that I don't think these accounts of disease my note: he's referencing the assertions of philosophers previously discussed that are intended to be completely generic, right, they're intended to let you know whether any given set of entities constitute a disease or not, are much help. And certainly if we look at the chronic fatigue syndrome case from the last video, it's not very clear how we can resolve any of the open questions by using these accounts of definitions of disease.

I think there's something else going on in chronic fatigue syndrome that's really important, and I think that the missing something has to do with causation. Note that the central/essential (??) part of the definition of chronic fatigue syndrome is that it is ideopathic, it has no known cause, and I think that that kind of difficulty about causation is really important to the kind of arguements that happen in cfs about whether or not it's a disease, and we can certainly see lots of examples where chronic fatigue of some kind that is caused by an illness is treated very differently from ideopathic chronic fatigue syndrome."

(my transcription, apologies for any inaccuracies, will happily correct mistakes)

Interested to know why he chose me/cfs as his example, given what he says in the quote above.

 

[Snowdrop]

This is my mistake . I posted as if the statement meant that the purpose was about the video being posted not the philosophical discussion (in other words the posting of the video had served it's purpose) I may have been confused on that. I am also quite challenged cognitively and it's takes a lot of time for me to post something. I am often challenged to find the correct word to relay meaning efficiently. I however, remain unclear as to what the video (BC) brings to the discussion of ME that provides a new perspective or other useful informative thought to the table.

 

[Snow Leopard]

Someone mentioned this elsewhere, but here is an experienced doctor talking about the gaps in medical practise - notice how it is a very different perspective than 20th century "philosophy of medicine" as it focuses on actual gaps in knowledge and practise that prevent good outcomes for patients and the role of people to actively fill those gaps.

Patients don't care about meaningless philosophical debates about mind/body dualism, "organic" vs "inorganic" pathology, "disease" vs "illness" vs "syndrome". Talking about the definition of disease and whether "chronic fatigue" is a disease is completely missing the point. Chronic fatigue is neither an illness or a disease, it's a symptom. What is or isn't a disease according to some ultimately imprecise definition doesn't matter. There is no magic demarcation between disease and "non-disease".

Journalists and many doctors might think these debates are important or useful, but I would like to tell such people to stop! Those debates are a distraction getting in the way of progress.

What matters is developing an understanding of underlying pathology and effective treatments. (note, bio & psycho & social elements are all relevant, but simply measuring a statistical correlation is not enough to claim that a specific element is relevant. Strong demonstrations of directionality, sensitivity and specificity is necessary to build a useful model. Often when a researcher uses words like "risk factor" it is because they ultimately don't understand the causal relationship).

What we need is plurality of ideas until we get major breakthroughs. There has been lots of research on the psychological aspects, without any major breakthroughs, likewise no breakthroughs from looking at viral infections, nor brain imaging, so maybe we need to look elsewhere? Exercise physiology and immunology have led to the most interesting (and replicated) findings so far.

 

[Sean]

Strong demonstrations of directionality, sensitivity and specificity is necessary to build a useful model.

This x 1000.

 

[Chrisb]

Hi @Snowdrop I am sorry to hear of your long term problems with this illness. Please regard the misunderstanding between us as closed.

I would only urge extreme caution before ascribing to members views which they do not hold. I know that computers make it too easy to sometimes give a wrong impression.

I think it unlikely that there are any members here who would mock people suffering from ME, or who would blindly endorse the views of Wessely and crew.

Best wishes.

 

[Brendan Clarke]

Hello, many thanks for all the very detailed and thoughtful responses posted here. I'm happy to try and clarify anything that I said in the youtube video (or notes). The aim here (as @Skycloud points out) was to use this example to argue against the ways that philosophers of medicine prioritise abstract definition of disease as a central theoretical problem. On this, I think that @Snow Leopard is exactly right "There is no magic demarcation between disease and "non-disease"." - well, absolutely, and that's what the lecture is intended to set up. It's meant to be very very introductory, and it doesn't have a lot of detail in it.

Probably worth explaining a bit of the background here. 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.

Anyway, I'll be here, and will do my best to respond to any thoughts you might have.

 

[Chrisb]

Hi Brendan,

Welcome to the forum. You will find that life here is much like a family. We have our little spats and misunderstandings but these can be resolved amicably.

I suspect that there must have been times over the last few days when my serendipitous discovery of your lecture notes might have been regretted. I am sure that your introductory post will have quelled any concerns that have been expressed here and that you will have a warm welcome. This is certainly the place to come for discussion of the flaws in PACE.

You may find a certain antipathy towards philosophy and epistemology in general,which I have never quite understood, but you will be in a better position than I to advance their necessity.

I suspect that some of the views here may have arisen from a failure to understand the context in which the lecture was given. That is my fault. Having watched the course of lectures and formed a positive overall impression I failed to explain that adequately. We live and learn.

Thank you for coming here, and thank you also to @trishrhymes for her efforts in making contact with you.

 

[A.B.]

Probably worth explaining a bit of the background here. 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.

Hi. I'm curious if the ME/CFS community's efforts regarding PACE are being noticed in UK academia? Do people know about the work by Tuller and others and the JHP special issue?

 

[Brendan Clarke]

I suspect that there must have been times over the last few days when my serendipitous discovery of your lecture notes might have been regretted

No regrets!

You may find a certain antipathy towards philosophy and epistemology in general,

Well, I think that's pretty understandable. There's lots not to like about the way that philosophers of science talk about science - which often has very little to do with the way that science is actually practised.

I'm curious if the ME/CFS community's efforts regarding PACE are being noticed in UK academia? Do people know about the work by Tuller and others and the JHP special issue?

Top-of-the-head, yes to the special issue, but not really to the virology.ws posts etc. I don't really know why that is.

 

[Valentijn]

You may find a certain antipathy towards philosophy and epistemology in general,which I have never quite understood, but you will be in a better position than I to advance their necessity.

Mostly because we've been badly burned by it in the past. The arguments used to support an openly psychosomatic or more amicable-sounding "central sensitization" model are almost entirely based in philosophy rather than science. Hence we're up to our gills in philosophizing by a bunch of quacks who studiously ignore biology and patients. And somehow, those philosophizing quacks have ended up in charge of determining how we are treated medically.

I don't blame philosophy in general for their abuse of it, anymore than I blame psychology for their abuse of a discipline which is meant to be supportive and helpful. The problem isn't really psychology or philosophy, but rather the twisting of both in a manner which is ultimately abusive to patients.

But after so much of the abusive side, there's little interest left for the topic in general. Even when it's in a neutral or positive context, the overriding interest is in the biology - because that's what will result in treatment, in less physical pain and suffering, and where we get the means to shut down the ongoing abuse and neglect.

However, I know we need exactly what @Brendan Clarke seems to be offering: a philosophical look into what is going wrong in allowing blatantly twisted narratives to dominate.

It's just hard for us to trust motivations, especially when they aren't completely clear from the outset. A lot of us are in a similar situation regarding psychology. Many of us could probably use the support, but can't risk the damage done by a sympathetic psychologist who misleads us for months before betraying our trust. Such a psychologist suddenly insisting that doctors and medical treatments can't help me, and that only I could cure myself, resulted in the one time in my life I've felt completely hopeless and even suicidal.

Obviously our problems with philosophy aren't so severe, but there is a wall there, and it's there so that we can protect ourselves from a lot of nastiness. Getting over that wall requires a careful approach, while every statement is picked apart to look for anything supporting psychosomatism or patient-blaming. Some of that scrutiny is undoubtedly overzealous, but it's due to years of quacks finding new ways to say nasty things, such as coming out with a new euphemism for "psychosomatic" on a yearly basis.

Anyhow, I'm extremely pleased to see that @Brendan Clarke has accepted the invitation to join us Dialogue is a great way to sort out misunderstandings, and for all of us to gain new insights.

 

[Sean]

Thank you for taking the time to talk to us, Mr Clarke.

I ask only that you give a fair hearing to our side of the story, and properly consider the possibility that we are basically correct in our technical and ethical criticisms, and that this situation has profound and urgent implications for medicine and related government policy in the UK.


Could you give us a brief summary of your understanding of the strengths and weaknesses of the PACE trial, and the causal psycho-behavioural model that it is based upon and was testing.

PACE was justified and sold as the "definitive" trial of that model. As best you can tell so far, did the results from PACE support, refute, or fail to determine the validity of that model?

Not trying to test you, it will just help us to know where you are starting from so we all don't waste too much time and energy and misunderstanding.

---------------------

You may find a certain antipathy towards philosophy and epistemology in general,...

Speaking for myself, I regard epistemology as one of the most important issues facing humanity, which needs far more attention and respect.

I just think that empirical science is the basic raw material of epistemology. Possible methodologies are defined by nature, not by our internal monologues. All we can do is learn to read nature more clearly and accurately.

Every other approach ultimately ends up in some form of solipsism, far as I can tell.

The arguments used to support an openly psychosomatic or more amicable-sounding "central sensitization" model are almost entirely based in philosophy rather than science.

Not sure it even rises to that level. Mostly it is now just based on misleading games with words and numbers.

Many of us could probably use the support, but can't risk the damage done by a sympathetic psychologist who misleads us for months before betraying our trust.

Yep. No way I am giving those clowns yet another shot at wrecking what is left of my shabby life existence. I have learned my lesson. Pity they haven't.

 

[Skycloud]

Welcome to the forum @Brendan Clarke! I appreciate your willingness to engage with us here.


Good science, bad science, or insufficient science, good or bad, inform opinion and practice. As people with ME we know about that, whether we've thought about it or not. It's important that scientists and doctors think critically. Bad science gets a pass because people don't think. Or because it suits them.

@Brendan Clarke what practical outcomes do you hope for from students taking your courses (I assume they're part of a science/medicine degree)? How do you hope what you do will impact their work later?

Speaking for myself, I regard epistemology as one of the most important issues facing humanity, which needs far more attention and respect.

I just think that empirical science is the basic raw material of epistemology. Possible methodologies are defined by nature, not by our internal monologues. All we can do is learn to read nature more clearly and accurately.

Every other approach ultimately ends up in some form of solipsism, far as I can tell.

I don't think philosophy has any earthly use if it 's just thinking about thinking and stops there. Also, internal monologues affect the world. The internal monologues of the bps proponents affect me in terms of what treatment I am offered, what benefits I receive, how people react to me when I tell them I have ME.

 

[Snow Leopard]

particularly relating to the ways that clinicians use evidence from randomised trials to guide their practice.

Portrait of a clinician behind closed doors: they look up (often out of date) practise guidelines, information on Wikipedia, Uptodate etc. They click on the articles that have been published in journals they've heard of, they read the abstract and form a conclusion without reading the article itself because they "don't have time". They treat the conclusions of the abstract as gospel if it agrees with their preconceived beliefs, regardless of the quality of the underlying study. Some of them don't do it behind closed doors though, they do it right in front of us.

The truth is that clinicians are not taught about the nuances of best practices in medical research, they are not taught how to interpret medical science and understand the many biases, they are not taught how to develop a working statistical intuition. Secondly, when it comes to treating patients there is no followup for bad practise* - patients simply disappear (they turn up elsewhere, or get fed up with the medical system). There lacks an appropriate feedback loop that measures unmet needs from the patients perspective that feeds back into both medical practice and research that targets those unmet needs. The sad part is that many clinicians simply accept this in a fatalistic way. They write articles about how a majority of patients presenting in primary care have symptoms that are "unexplained" (even if they have diagnosed medical conditions) and that it is not their job to treat these symptoms, that medically unexplained symptoms or syndromes are simply someone else's problem and they shouldn't waste any more medical researchers doing tests etc, because they've already decided they won't find anything.

As I said earlier, it is fundamentally the lack of efficacious treatments that causes the most frustration for patients.

*Ironically, specific evidence based guidelines themselves are rarely if ever tested in depth for their impact and usefulness in medical practise.

You might find the following interesting (plenty of other stuff, but you've likely already read that other stuff, so...):

"Why clinical trial outcomes fail to translate into benefits for patients"
https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-017-1870-2

"Observer bias in randomised clinical trials with binary outcomes: systematic review of trials with both blinded and non-blinded outcome assessors"
http://www.bmj.com/content/344/bmj.e1119

"The Reproducibility Of Research And The Misinterpretation Of P Values"
http://www.biorxiv.org/content/early/2017/08/07/144337

Animal models of disease are often very different to that of human diseases, such that the research often doesn't translate:
"Extrapolating from Animals to Humans"
http://stm.sciencemag.org/content/4/151/151ps15.full
"Is animal research sufficiently evidence based to be a cornerstone of biomedical research?"
http://www.bmj.com/content/348/bmj.g3387
"Evaluation of Excess Significance Bias in Animal Studies of Neurological Diseases"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3712913/

"A Critique of the Hypothesis, and a Defense of the Question, as a Framework for Experimentation"
http://clinchem.aaccjnls.org/content/56/7/1080.long
"A Brief history of the hypothesis"
http://www.cell.com/cell/fulltext/S0092-8674(08)00953-7
(A key message here is that the philosophy lags behind the practise of science, rather than driving it, which is why it is less interesting to me)

 

[A.B.]

In addition to what @Snow Leopard said. There is a logical flaw in the system where poorly understood illnesses are not researched further because they are poorly understood. Yet that is precisely where there is a great need to do more research. It's in these areas that we are going to make important new discoveries.

There is also another aspect where patient feedback is ignored because the illness is considered psychosomatic. Patients are viewed as unreliable witnesses to their own condition. Medicine is depriving itself of valuable feedback by ignoring patients, and I think it's a major reason why there has been so little progress.

 

[Jonathan Edwards]

Thanks for engaging, Brendan. Your conclusion is the right one, and should not be heterodox. I did philosophy as an MA after retiring from medicine and came across the same sort of constipated thinking. Philosophers still like words to have precise meanings. Linguists understand that words on their own have no meaning. Meaning arises from working words into contexts as propositions and as Charles Travis taught me, every sentence is different and even the same sentence is different every time it is uttered. But that does not entail that meaning is vague,just complicated and compositional.

Having an idea of the woolliness of the meaning of disease is certainly something I used to take time to teach medical students and tease out what concepts might underlie it - to try to stop them talking of chronic obstructive airways disease and gesture oesophageal reflux disease and so on.

What you may get from the ME/CFS patient community here is a feel for how they have moved on to more sophisticated thinking (unlike the physicians and psychiatrists). We tend to talk of ME/CFS because both terms have acquired much the same spectrum of meanings. The Royal Free outbreak is a bit of an anomaly.

It is good to hear that you have an interest in the PACE problem. You will probably have come across my viewpoint in JHP. There is a very real practical problem out there to tackle.

 

[Valentijn]

Patients are viewed as unreliable witnesses to their own condition.

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

 

[trishrhymes]

Hi Brendan,

Welcome and thank you for responding so positively to my suggestion that you join our discussion. And thanks to @Chrisb for alerting us to Brendan's lecture.

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.'

This is certainly an area where ME/CFS has been the victim of opinion that is not based on evidence from the psychiatrists who decided in 1970 that the Royal Free outbreak was a case of mass hysteria on the basis of looking at some of the patients notes and observing that the majority were female. They did not even meet any of the patients. Definitely a case of opinion, not justified belief. And yet it was published in a medical journal. (Do read Ramsay's book on the subject).

Building on this, as I understand it, Simon Wessely decided in the 1980's to become the expert on this condition. He decided that it was a psychosomatic illness possibly triggered by an infection, but perpetuated by exercise avoidance, false illness beliefs and consequent deconditioning. He therefore decided that exercise and therapy to change the patient's illness beliefs was the logically appropriate treatment.

He has spent the rest of his career promulgating this 'biopsychosocial' model and ensuring that all research done on his invented treatments is designed to show they work, by designing in bias. He even gave himself away by describing how the PACE trial was like a ship setting out on a voyage, and having its navigation altered part way in order to make sure it reached the right destination.

Add to this some of his most ardent followers such as Peter White and Michael Sharpe's toxic roles in advising the DWP and health insurers, and the fact that a whole cabal of psychiatrists and psychologists (and the odd paediatrician) have built their careers and reputations on this unfounded opinion, and we have 30 years of huge patient harm. And it goes on...

But you say you have been following David Tuller, so you know this already.

We now, as a result of the PACE trial data reanalysis, and its sister trial the FINE trial, have clear evidence that despite the (unethical and unscientific) efforts of the Wessely and his gang to distort the outcome, CBT and GET don't work.

We also have masses of survey evidence and patient testimonials that GET makes people sicker, and the sort of directive CBT that attempts to persuade patients that their symptoms have no physical cause, leaves patients distressed and blamed for not trying hard enough by doctors, therapists and friends and families. So these treatments result in physical, mental and social harm.

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.

You will notice that I don't bring causation or definition into this at all.

I'd be interested in your comments on this analysis, Brendan.

I realise your lecture was not directly addressing this, however, I am concerned that you seem to have made some errors in the lecture. I'd be interested in your comments on these:

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.

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.

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.

 

[Sean]

We now, as a result of the PACE trial data reanalysis, and its sister trial the FINE trial,...

Yes, let's not forget the FINE trial. Ta.