And often don't want to, because it confronts them with the limits of their competence, and they don't know what to do about it.
So it just gets framed as a psychological and sometimes even a moral pathology, and effectively dismissed.
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Diane O'Leary, philosopher, media articles and interviews
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So it just gets framed as a psychological and sometimes even a moral pathology, and effectively dismissed.
Ash
Senior Member (Voting Rights)
Thanks @Ravn.
I watched the whole video. I found it immensely enjoyable. The window behind Diane’s head green leaves and soft sunlight. The framing and depth. The calm voices of her and her host carried me through.
I can’t comment on the philosophy because it’s beyond me.
I did agree that the mish mash promoted as philosophy behind medicine now, is unsupportable. Diane said it was dangerous to base medicine on philosophy when it should be based in science. I agree medicine should be based in science.
Though, I would have thought medicine was currently based in ideology rather than philosophy. It doesn’t seem like a philosophy just because terms have been robbed from philosophy to support the ideology. Ideology that supports degrading of patients, to support rationing of resources. Still it’s likely I made see it this way because I can’t remember more than the outline of what words mean now. Personally I need to work on this one for a while in order to comprehend the bare basics.
I confidently disagree with many of Diane’s comments on Chronic Fatigue Syndrome as the host called it, and ME or ME/CFS as she did.
Annoyingly I can’t remember most of this now the marathon video having taken it out of me.
Diane said that there was now loads of biological evidence for CFS or ME being a biological disease. Either said or inferred that this was why the CDC and other bodies had decided to ditch the biopsychosocial model. I don’t know exactly why organisations changed recommendations when they did, but I do believe it was in large part because highly trained professionals and self taught patient scientists and advocates broke through the wall of denial and were able to present hard evidence that CBT and GET and variations of these changes were not bringing the the promised outcomes. The patients weren’t in fact recovering.
We do know that patients in studies often show abnormal biological processes. But we don’t have tons of evidence that ME is a biological disease. If money had been spent on finding out we might have now. But it wasn’t. Do there are for the most part only small studies that are not expanded and replicated.
Diane gave credit to the CNS sensitivity framework. As cannot take this seriously. It’s quite true feeling grim makes you feel grim. But this is a rapid feedback process and extrapolating that idea to a lifetime worth of, probably fluctuating, pain requires evidence that hasn’t been provided.
At the beginning of the talk Diane said that people, all people, develop physical symptoms from psychological stress, and then worry that these symptoms are actually pointing towards them having a physical medical condition. That people would go to the doctor with back pain, which would be due to interview related stress in her example case, and that the doctor would have to reassure them. Then after the interview and stress about this is over the back pain resolves. I am sure that this happens, but maybe more for middle class Americans with health insurance than for others.
I do not dispute physical symptoms from psychological stress, everyone gets a nervous stomach ache at times of extreme stress. But also pretty much everyone knows that this is what they are experiencing. You might need to go to the dr straight away especially if you’re not on a salary and can’t miss work and need to get painkillers for your back etc but you’ll probably also tell the dr that you think or are hoping it’s just stress.
Yes some people are very anxious about their health and go the dr a lot. But that’s all people who have specific unmet needs. Medical needs or unmet material need, the means of survival (can’t stay well without food heat etc) or psychological trauma for which our society doesn’t provide good care.
But in Diane’s telling it came across to me like this example of a stress related bad back, and visiting the doctor, is atomically attributed to worry. Not a need for pain relief or a sick note for work, as might be practically needed by many people, or because it is ‘sensible’ ’responsible’ and frankly if you’re working class essential to your prospects of survival to safeguard the body whose labour you depend upon in order to purchase the means of survival. Why is it assumed that the patient with a bad back is worried overly about disease? Also, they should worry about disease. Sooner or later disease is coming for most of us. But sooner for people who can’t earn a living. So the stakes are high even where there may be low chance of a serious lasting issue. But again no one I know irl hasn’t put off a trip to the dr in the hope that the problem will go away, if that remains an option to them. So even rational self protecting caution over disease isn’t often to be found. Asking for treatment/investigation too early, it seemed was the justification for a claim of
near universal abundance of the psychosomatic presentation in patients. Framed by Diane as reasonable and normal, not something that should be psychopathologied. But still framed as patients doing what Drs say they do for the reasons Drs say they do it.
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I really enjoyed the strong points Diane made throughout about the dangers and injustices of the current medical paradigm.
I felt like Diane pinpointed exactly how Drs think about and behave towards their patients. At least in my experience as a person with a long standing ME diagnosis. We could have been in the room together, as she re-enacted scenes from a Drs office, complete with the delivery of language and the subtext.
I am not able to speak for all the women. But if it’s generally true that “women love” the ‘mind body’ spiel, then I guess that’s because a gentle shoulder nudge is much better than a punch in the face. Expectations are low.
With my lack of philosophy training I can’t say where exactly Diane is coming from on this. So that may have affected how I interpreted other aspects of her position. But to me it seemed like she was making certain challenges to the current order, whilst also allowing much of it to stand. I don’t know what her criteria was for criticism or acceptance. It looked inconsistent to me. I was disappointed by seemingly contradictory statements and conclusions that didn’t always match up to the arguments put forward.
Edit:Extensive for punctuation, many typos and missed words.
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Ravn
Senior Member (Voting Rights)
I've now listened to the podcast version of the interview. The interviewer's approach seems to be one of intellectual curiosity and drawing out the thinking of his interviewees rather than challenging them. I suspect his audience includes a number of psychs and neurologists
With that in mind I think, overall, it's a helpful interview. I found the first third or so a little confusing and there were certainly points where one could argue the finer details but mostly about the level of emphasis given, not about fundamental issues
The section on ME is relatively short, it mainly serves as a practical example of a syndrome that has had the misfortune to be adopted by BPS-pychs as the poster child for their thinking. Diane is very clear she does not consider ME to be psychosomatic (and explains, twice, that it shouldn't be called chronic fatigue syndrome)
Much of the podcast is about MUS in the broader sense. The main messages the audience would have come away with are:
With that in mind I think, overall, it's a helpful interview. I found the first third or so a little confusing and there were certainly points where one could argue the finer details but mostly about the level of emphasis given, not about fundamental issues
The section on ME is relatively short, it mainly serves as a practical example of a syndrome that has had the misfortune to be adopted by BPS-pychs as the poster child for their thinking. Diane is very clear she does not consider ME to be psychosomatic (and explains, twice, that it shouldn't be called chronic fatigue syndrome)
Much of the podcast is about MUS in the broader sense. The main messages the audience would have come away with are:
- that MUS are handled very poorly, to a large part because clinicians are specifically trained to deal with them poorly
- that BPS is very far from being the lovely, holistic see-the-whole-person thingy most people think it is
- that medieval thinking about hysterical women is very much alive under the guise of new names like conversion disorder and FND and also, more effectively because less obvious to patients, under the guise of some vague 'Oh but the mind and the body work together you know'
- and, importantly, that addressing medical uncertainty with automatic defaulting to psychosomatic causes is always dangerous and unethical, irrespective of the personal opinions of any clinician on the matter, and the possibility of biomedical disease must always be kept open
Dx Revision Watch
Senior Member (Voting Rights)
This is Diane O'Leary who, in the not so distant past, published that she would like the term "CFS" handed over to the psychs and who simply could not grasp why this would not be feasible in the UK or why this was not feasible in the context of the NICE ME/CFS Guideline, ME/CFS service provision, ICD-10, ICD-11, SNOMED CT etc; and now that the term "CFS" has been coded under G93.32 ME/CFS in the US's ICD-10-CM, is not feasible in the US, either. These views were discussed at length on this forum. She went on to publish her views on "CFS" and "ME/CFS" in BMJ Rapid Responses:
https://www.bmj.com/content/370/bmj.m3026
Management of post-acute covid-19 in primary care
BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m3026 (Published 11 August 2020) Cite this as: BMJ 2020;370:m3026
Rapid Response:
21 August 2020
Diane F O'Leary
https://www.bmj.com/content/370/bmj.m3026/rr-4
'...The term “chronic fatigue syndrome” names a psychiatric condition that sometimes develops in reaction to acute viral infection.[2] [3] [4] It is essentially deconditioning that arises from inactivity when patients embrace faulty illness beliefs.
By contrast, the term “myalgic encephalomyelitis” or “ME/CFS” names a chronic biomedical disease that typically develops after acute viral infection.[5] [6]'
...Unfortunately, use of the term “CFS” encourages this problem because it names a condition primarily researched and managed in psychiatry. Moreover, the term “CFS” discourages clinicians from cautious, informed diagnostic reasoning about the difference between psychiatric responses to the challenges of Covid and postviral disease that has yet to be clarified in biomedical research.[14]'
...While CFS is a condition we can hope to resolve with holistic virus recovery strategies, ME/CFS is a chronic disease in its own right, one that requires its own treatments and research that will help develop them. In this sense ME/CFS is similar to autoimmune disease triggered by acute infection. Neither will be addressed through virus recovery strategies.'
I find much of her writing muddled, inconsistent and demonstrates a poor understanding of how the terms "CFS" and "ME" and "ME/CFS" are currently used (and coded for) within the UK and internationally.
Edited for punctuation.
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Lou B Lou
Senior Member (Voting Rights)
@Ash described what Diane stated in the video:......
"Diane gave credit to the CNS sensitivity framework. As cannot take this seriously. It’s quite true feeling grim makes you feel grim. But this is a rapid feedback process and extrapolating that idea to a lifetime worth of, probably fluctuating, pain requires evidence that hasn’t been provided.
At the beginning of the talk Diane said that people, all people, develop physical symptoms from psychological stress, and then worry that these symptoms are actually pointing towards them having a physical medical condition. That people would go to the doctor with back pain, which would be due to interview related stress in her example case, and that the doctor would have to reassure them. Then after the interview and stress about this is over the back pain resolves....
.... to me it seemed like she was making certain challenges to the current order, whilst also allowing much of it to stand"
What is Diane doing, giving blatant BPS/psychosomatic ideology any part of a platform? Does she not understand anything about how the BPS world (and the Insurance industry, Disability Benefits systems) thrives on spreading those same damaging (fiction) narratives about patient behaviour?
"Diane gave credit to the CNS sensitivity framework. As cannot take this seriously. It’s quite true feeling grim makes you feel grim. But this is a rapid feedback process and extrapolating that idea to a lifetime worth of, probably fluctuating, pain requires evidence that hasn’t been provided.
At the beginning of the talk Diane said that people, all people, develop physical symptoms from psychological stress, and then worry that these symptoms are actually pointing towards them having a physical medical condition. That people would go to the doctor with back pain, which would be due to interview related stress in her example case, and that the doctor would have to reassure them. Then after the interview and stress about this is over the back pain resolves....
.... to me it seemed like she was making certain challenges to the current order, whilst also allowing much of it to stand"
What is Diane doing, giving blatant BPS/psychosomatic ideology any part of a platform? Does she not understand anything about how the BPS world (and the Insurance industry, Disability Benefits systems) thrives on spreading those same damaging (fiction) narratives about patient behaviour?
Ash
Senior Member (Voting Rights)
I remembered that she’d done/said some stuff that most of us would find deeply unhelpful. But I didn’t remember what.
When I said she said the illness was biological I meant that was what she said specifically in the talk. I think she presented this fact in an unconvincing manner, because she isn’t convinced that BPS is wrong all around. Perhaps thinks it’s applied too heavily or relentlessly but not that it shouldn’t exist or be applied to anyone with any illness. So she’s trying not to be one of the last stragglers psychologising this illness.
I have always found her writing impenetrable so watching talk was the first time I had seen her work not quoted by people with ME (for better and worse) and seen straight from the horses mouth what the deal is. She reminds me of someone else in this area but I can’t quite recall who.
It is my understanding that she is Canadian and may not understand the blatant abuse that happens in the UK. She may not be in tune about what is going on at the granular level and then at the SMC level in the UK
Ash
Senior Member (Voting Rights)
I think there is a good deal of abuse in Canada too.
I thought she was American, perhaps living in Australia?
In any of those countries perhaps the middle classes get better treated than in the UK but for ordinary people I think it’s horrific in all three possible countries for disabled people.
Perhaps the abuse is by neglect and neglect takes many forms, organized and not organized.
And I am surprised to hear she is not Canadian. https://me-pedia.org/wiki/Diane_O'Leary
Ash
Senior Member (Voting Rights)
No sorry I didn’t mean to contradict you!
I wasn’t being clear there, I just meant I had the wrong idea about where she came from, because of where she studied perhaps or just my bad memory. I was also trying to say there is no escape from BPS wherever Europe has colonised, so has BPS.
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Dx Revision Watch
Senior Member (Voting Rights)
My understanding from what Diane O'Leary has put in the public domain is that she was originally from Australia and has mostly worked in US academia; I think she may have had at least one uni lecturing post in Canada. She has also put in the public domain that she was initially misdiagnosed with CFS then eventually re-diagnosed with a genetic vascular/blood clotting disorder.
Well, she only has to ask if she wishes to inform herself around the history and current status of UK ME medical politics and the reality of just how little there is in the way of treatments available through the NHS, other than CBT/GET which is still being offered by some NHS service providers.
She has also worked in the past with the Countess of Mar's UK Forward-ME group and gave a presentation at one of their meetings.
While she was working with the COM, she put out several documents calling for "action from professional advocates" in which she made some very peculiar statements about the core ICD-11 BDD and the proposed BSS category for the still unpublished (non mandatory) ICD-11 PHC primary care management guide for common mental health disorders as not being a particular threat to ME patients.