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

[Chrisb]

Interestingly there is a lecture on CFS/ME as part of a Philosophy of Medicine course at UCL delivered by Brendan Clarke. I discovered this when looking for something else, as one does. It gives a non polemical description of the different approaches to defining disease, and might be of interest to newcomers to the debate.

These are the notes which are worth reading.
https://www.ucl.ac.uk/sts/staff/cla...-_Definitions_of_chronic_fatigue_syndrome.pdf

I thought the work draws too heavily on Wessely with reference to "the very good (ME sceptical review by David, Wessely and Pelosi (1988). (Whatever became of them. I suppose our loss may be the west of Scotland's gain) There seems to be little understanding of the illness in terms other than fatigue, but it is nevertheless a serious attempt to describe the differing approaches to disease.

I am prepared to forgive any lapses for the graph showing dates of admission in the Royal Free epidemic showing the peak week as 23/30 July. You will guess the reason. Hysteria can produce such strange coincidences.

 

[keenly]

Interestingly there is a lecture on CFS/ME as part of a Philosophy of Medicine course at UCL delivered by Brendan Clarke. I discovered this when looking for something else, as one does. It gives a non polemical description of the different approaches to defining disease, and might be of interest to newcomers to the debate.

These are the notes which are worth reading.
https://www.ucl.ac.uk/sts/staff/cla...-_Definitions_of_chronic_fatigue_syndrome.pdf

I thought the work draws too heavily on Wessely with reference to "the very good (ME sceptical review by David, Wessely and Pelosi (1988). (Whatever became of them. I suppose our loss may be the west of Scotland's gain) There seems to be little understanding of the illness in terms other than fatigue, but it is nevertheless a serious attempt to describe the differing approaches to disease.

I am prepared to forgive any lapses for the graph showing dates of admission in the Royal Free epidemic showing the peak week as 23/30 July. You will guess the reason. Hysteria can produce such strange coincidences.

Wessely should never be mentioned by anyone ever again. He is nothing.

 

[Esther12]

Interestingly there is a lecture on CFS/ME as part of a Philosophy of Medicine course at UCL delivered by Brendan Clarke. I discovered this when looking for something else, as one does. It gives a non polemical description of the different approaches to defining disease, and might be of interest to newcomers to the debate.

These are the notes which are worth reading.
https://www.ucl.ac.uk/sts/staff/cla...-_Definitions_of_chronic_fatigue_syndrome.pdf

I only read the notes, but they looked terrible to me:

While treatment is not a very important part of the story of CFS/ME that I want to explore here, it is
worth noting that some treatments do appear to benefit some CFS/ME patients. Two examples are
CBT (cognitive behavioural therapy) and GET (graded exercise therapy). See Clark et al 2002 for more
details on these. However, despite the impact of the condition, the few sentences above are about
the sum total of agreement in the field. What, then, do stakeholders disagree about?

How patients are treated, and how this affects their lives, is key to any discussion of the controversies around CFS.

The reason the application of particular labels matter is almost entirely because of the impact they have on how patients are treated. If you're going to look at these matters, you need to look at how the welfare system works, how the insurance industry works, etc, etc.

He sounds like he's just taken Wessely's word for all this BS.

While the only treatments that offer much by way of improvement to CFS/ME sufferers
are psychological (CBT and GET), most CFS/ME patients are dissatified with a psychological diagnosis:

What is there evidence for the efficacy of those treatments? Unblinded trials and subjective self-report outcomes? He cites the PACE trial in his references.

As a final point, CFS/ME clearly provokes strong feelings, particularly around how the disease is
defined and classified. While we're going to explore these issues over the next few lectures, perhaps
we should conclude by noting that diagnosis is nothing like the end of the story for those suffering
CFS/ME, and we should remember that the 'right' diagnosis is "the beginning, and not the end, of
the therapeutic encounter." (Huibers and Wessely 2006)

Bleurgh! That Wessely paper is a nauseating promotion of manipulative quackery. When you don't know what you're talking about, when you're as dangerously incompetent as Wessely has shown himself to be, diagnosis should absolutely be the end of the 'therapeutic' encounter. Let your patients escape.

Those notes were exactly the sort oof things that pisses me off. Using CFS for ramblings about the nature of 'disease' and 'ill health', while failing to engage in any detailed examination of the evidence underlying the claims made. He seemed to be lecturing on the topic without having taken the time to truly investigate and understand it in the way that is needed.

I said I might come back to edit this to tone it down... I have a little bit! Still want to mutter swear words though.

 

[Chrisb]

@Esther12 I think this interpretation may be a little unfair and misinterpret the purpose of the exercise-either that or the misinterpretation is mine.

I think it is intended to be an explanation of the different ways in which disease may be defined and categorised, without attempting to suggest a right answer to the problem in the case of this particular disease. There will always be those who disagree with any "conclusion" . But I was always told that every synthesis will provide its own antithesis.

I think you may be criticising the paper for not doing things which it never purported to do. In any event it is apparently thought provoking.

 

[Esther12]

@Esther12 I think this interpretation may be a little unfair and misinterpret the purpose of the exercise-either that or the misinterpretation is mine.

I think it is intended to be an explanation of the different ways in which disease may be defined and categorised, without attempting to suggest a right answer to the problem in the case of this particular disease. There will always be those who disagree with any "conclusion" . But I was always told that every synthesis will provide its own antithesis.

I think you may be criticising the paper for not doing things which it never purported to do. In any event it is apparently thought provoking.

I am partly criticising him for the issue he wants to use CFS to explore, which I think is largely a side issue to the more important areas he ignores, but also I think that it's impossibly to meaningfully explore the issues he is looking at without first having a good understanding of the issues he ignores.

I'm not remotely saying that he's suggesting there is some 'right' answer that he has found. It's rather than the way he poses his unanswered question, and explores the topic, plays perfectly into the stigmatising narrative promoted by Wessley and colleagues.

He's just following Wessely's evasive & manipulative pretence the issues of 'disease/nondisease', 'mental/psychological' etc can be detached from the wider issues here (I don't think Clarke is being manipulative and evasive, I think that's he's just following Wessely and has no idea what he's talking about).

 

[Snowdrop]

I think it is intended to be an explanation of the different ways in which disease may be defined and categorised, without attempting to suggest a right answer to the problem in the case of this particular disease. There will always be those who disagree with any "conclusion" . But I was always told that every synthesis will provide its own antithesis.

The idea of disagreement and synthesis/antithesis doesn't apply when one side of the debate is not grounded in any evidence or even reality. Their side of the debate has no place in trying to truly understand what ME (for example) is their argument originates in politics not biology.

 

[Snow Leopard]

The author unfortunately mischaracterises the view of patients and thus mischaractrises the debate.

It's worth noting how little some of the hostility that comes from patient groups towards medical practitioners has to do with success of treatments.

This is dead wrong. It is precisely the lack of success of psychological treatments that leads to hostility towards medical practitioners that repeatedly claim psychological treatments are effective despite a continued failure to find objective improvements in functioning in trials.

Patients do not care about this mind vs body duality debate (and it's analog, feigned vs real) that psychiatrists seem to be preoccupied with and which psychiatrists never fail to mention when being criticised.

Patients know that in practise, medical doctors and psychiatrists practise mind body dualism - if they do not know what is wrong with you, they are no longer interested in doing further testing and only wish to prescribe psychological treatments. Even though these treatments have consistently failed to demonstrate objective benefit in trials, many medical practitioners believe CBT and GET work as a matter of faith, because they don't care for applying consistent standards of evidence across medicine. When ME or CFS patients say hey, we don't want psychological treatments, we want treatments that work, this is mistakenly interpreted as patients denying that mental illnesses are serious, real etc.

There does seem to be a fundamental philosophical difference between psychiatrists and patients. Psychiatrists seem to believe that how patients think and feel about their health as central to their suffering, such that questionnaires about their health are the centrally important measure of health. Whereas patients diverge from this view, because these questionnaires aren't designed by patients, easily biased due to transient differences in cognitions and thus don't truly capture the underlying lived experience of illness.

 

[Snow Leopard]

I am prepared to forgive any lapses for the graph showing dates of admission in the Royal Free epidemic showing the peak week as 23/30 July. You will guess the reason. Hysteria can produce such strange coincidences.

What is so special about these dates?
https://en.wikipedia.org/wiki/July_1955#July_23.2C_1955_.28Saturday.29

The whole case of Royal Free epidemic is a waste of time to analyse in hindsight, because the collection of evidence was generally poor back then. Claims that there were no patients with the illness are questionable because they were not objectively screened.

 

[Sean]

A smug, lazy, philosopher enjoying doing some compassionate lecturing about a matter they clearly have no interest in taking the time to truly investigate and understand.

The more I see of the world the more I agree with those who say that science renders any other epistemology redundant. All that is left if you take away science is various manifestations of solipsism, which are no answer to anything.

Philosophy, including political philosophy, may have a role in helping figure out how to apply the results from science to society. But as far as generating the actual primary knowledge itself, it is basically useless.

 

[Jonathan Edwards]

A smug, lazy, philosopher enjoying doing some compassionate lecturing about a matter they clearly have no interest in taking the time to truly investigate and understand.

I have rewritten this post, having looked at a good bit of Dr Clarke's lecture and his background.

I strongly suspect that he did medicine at the Royal Free and had a hard time because of his own ME/CFS. It looks to me as if he is trying hard to make a serious analysis of the diagnostic and scientific difficulties around ME but starting from the wrong information.

He is handicapped by not being familiar with the published work of the world's most important ME/CFS academic department: the University of Phoenix Rising Faculty of Clinical Sciences, with internationally renowned faculty members.

Maybe someone should tip him a friendly wink?

 

[trishrhymes]

I have rewritten this post, having looked at a good bit of Dr Clarke's lecture and his background.

I strongly suspect that he did medicine at the Royal Free and had a hard time because of his own ME/CFS. It looks to me as if he is trying hard to make a serious analysis of the diagnostic and scientific difficulties around ME but starting from the wrong information.

He is handicapped by not being familiar with the published work of the world's most important ME/CFS academic department: the University of Phoenix Rising Faculty of Clinical Sciences, with internationally renowned faculty members.

Maybe someone should tip him a friendly wink?

I had a quick look at his background and couldn't find anything about him having ME himself.

I read the notes (I haven't watched the lecture). He seems to have swallowed Wessely's views uncritically, which is very limited for someone supposedly researching an issue and having a team of students researching an issue. I wonder whether they actually talked to any of the ME patient groups or looked, for example at the MEA purple book. I don't think much of him as a supervisor of research if he thinks it's OK to swallow whole the Wessely spin and not even investigate the other side.

And, like the BBC on climate change he presents it as a balance of equals, not a wrong and a right side. While he explores the different definitions, he doesn't seem to have taken on board the significance of believing research on CBT GET treatments based on the Oxford definition. In fact I don't see that he adds anything useful to the debate, just continues the Wessely misinformation.

I've just found him on Twitter and will endeavour to link him to some better sources of information, including the University of Phoenix Rising.

Edit to add. I've just tweeted him links to this thread, the OMF website highlighting today's conference, and the JHP special issue on PACE.

Brendan, if you have found your way in here, welcome. I'm sure you are serious in your endeavour to understand the ME/CFS issues. It is a pity you appear to have been taken in by Simon Wessely who has a long history of distorting the views of and research on ME/CFS.

I do hope you are open minded, as any good philosopher must be, and willing to learn. Do watch the OMF lectures - they will be on You Tube if you miss them tonight. And do read the JHP journal.

 

[Chrisb]

@Jonathan Edwards

Hi Jonathan I am glad to see the rethinking of position on this. I was wondering how to respond in terms that would not lead to immediate ostracism from this forum.

My impression from the youtube video was that this was a completely benign attempt to inform people of the issues and I regret that it seems to have met with so hostile a reception.

 

[Jonathan Edwards]

@Jonathan Edwards

Hi Jonathan I am glad to see the rethinking of position on this. I was wondering how to respond in terms that would not lead to immediate ostracism from this forum.

My impression from the youtube video was that this was a completely benign attempt to inform people of the issues and I regret that it seems to have met with so hostile a reception.

Trouble is that completely benign attempts can perpetuate injustice very easily.
The problem with the presentation is that it does not actually get to the meat of what it wants to address. The distinction between CFS and ME is not quite what he thinks it is. The true 'philosophy' of this is much more subtle. But he might well benefit from joining the discussion here.

 

[A.B.]

ME/CFS and PACE are both issues so complicated that no informed opinion is possible without reading a lot of material. Most nonpatients commenting on these topics don't do this and come away with convoluted and strange views, for example where the illness is both physical and psychological.

Brendan if you're reading this: the psychosocial paradigm of CFS is continuously being disproved by the same people who are promoting it. They're just really good at pretending otherwise. Read this critique of the FITNET trial to understand what is going on: http://www.mdpi.com/2076-328X/7/3/52 (not just the abstract, but the full article)

 

[Snow Leopard]

My impression from the youtube video was that this was a completely benign attempt to inform people of the issues and I regret that it seems to have met with so hostile a reception.

How is it benign to mischaracterise our experience on a central issue?

It is the lack of success of treatments that causes most of the frustration for patients!

 

[trishrhymes]

@Jonathan Edwards

My impression from the youtube video was that this was a completely benign attempt to inform people of the issues and I regret that it seems to have met with so hostile a reception.

While the attempt may have been benign, the result is a perpetuation of the myth that we don't agree with the psychological approach because we don't want to be labelled as having an illness with a psychological cause.

If the cause were indeed psychological, I would have no problem with that, and would gladly try the CBT and GET approaches. My problem is, those approaches don't work, and make people sicker and leave us being blamed and judged as not wanting to recover.

And it's all very well having a philosophical discussion about how illnesses are defined, but if the consequences of these definitions are not fully understood, the discussion is empty.

 

[Esther12]

rewritten this post, having looked at a good bit of Dr Clarke's lecture and his background.

I strongly suspect that he did medicine at the Royal Free and had a hard time because of his own ME/CFS. It looks to me as if he is trying hard to make a serious analysis of the diagnostic and scientific difficulties around ME but starting from the wrong information...

Maybe someone should tip him a friendly wink?

I was so much more in the mood for some self-righteous indignation rather than a friendly wink. Back to edit...

 

[Snowdrop]

@Jonathan Edwards

Hi Jonathan I am glad to see the rethinking of position on this. I was wondering how to respond in terms that would not lead to immediate ostracism from this forum.

My impression from the youtube video was that this was a completely benign attempt to inform people of the issues and I regret that it seems to have met with so hostile a reception.

What is the point of sharing something that doesn't accomplish that goal--and expect that others won't point that out. There are people here who have been horribly awfully harmed by Wessely and co. You mock their suffering when you portray someone as benign when they are completely uncritical of 'authoritative' information that has NO basis in fact and present it as 'one side' of a debate.

Have you even read a critique of what is wrong with PACE (and thus the whole psychosocial construct of ME for which it is justification)? Are you aware of how people have been not only physically harmed (that's bad enough) but traumatised by the medical profession who have not believed they are even sick (directly as a result of W&co propaganda)?

 

[Chrisb]

I hope Brendan Clarke reads all this before deciding whether to accept the kind invitation for him to join this forum and be lectured as to just how wrong he is.

I wonder if the invitation gave an indication of for how long he would be expected to sit on the metaphorical naughty step, and whether remission for good conduct was a possibility.

I would recommend that he makes contact with Jonathan, if members, of whom I would not have expected it, prefer and "like" abuse.

 

[Snowdrop]

I hope Brendan Clarke reads all this before deciding whether to accept the kind invitation for him to join this forum and be lectured as to just how wrong he is.

I wonder if the invitation gave an indication of for how long he would be expected to sit on the metaphorical naughty step, and whether remission for good conduct was a possibility.

I would recommend that he makes contact with Jonathan, if members, of whom I would not have expected it, prefer and "like" abuse.

Instead of responding to the points laid out about what is problematic with the way he argued his point you keep referring back to our tone. He's not being lectured. He shared his thoughts and they were completely uncritical of the Wessely school. Please tell me what is offensive about pointing that out?. And why you consider it an abuse to B Clarke but have shown no consideration toward the thousands of fellow ME sufferers who have been harmed by the uncritical support of the psychosocial viewpoint (and thus the decades of delay in any of us getting proper treatment let alone compassion for a horrible illness with no treatment)?

Again the psychosocial view has been the dominant view for the past few decades please lay out what B Clarke's thoughts in the video you posted add to any debate on ME(for most patients I would think that there really is no debate the way a cancer patient would not consider their illness under debate) so again, what has been added for us to consider?