BMJ May 29th: ME is 'trivial', not a real affliction and patients are 'weak-willed'.

[Countrygirl]

Here is Prof. Sharpe revealing yet again that he is an utterly dishonourable man lacking all integrity by reinforcing the idea to doctors that this dreadful disease/illness is 'trivial' and that we are just a bunch of lazy, weak-willed characters. He does not deserve the title of 'doctor'.

It says this is a 'summary', so somewhere there is the main article. Can anyone find it, please?

I hope Dr David Tuller pursues this.


Mind, Medicine and Morals: A Tale of Two Illnesses
Posted on May 29, 2019 by Chris Pak


Article Summary by Michael Sharpe and Monica Greco


https://blogs.bmj.com/medical-human...uprjRYO7VRu0xrPfFipWItthUY2Sk4XOJ6VL7dkjXqIIQ

Consequently, patients who have an ‘illnesses-without-disease’ like CFS, find themselves in a paradoxical and morally ambiguous predicament. Paradoxical because whilst their experience of illness may be severe, the lack of disease may lead to it being regarded as trivial. Morally ambiguous because whist the person with CFS needs care, their illness may be regarded as a failure of will, rather than as a genuine affliction.

 

[Moof]

 

[MEPatient345]

The headline of this post is really misleading. He does not say patients are weak willed and that CFS is trivial. He says that the lack of biological markers may lead to the disease being regarded as trivial; and that people who need care might be instead regarded to not have a genuine affliction, and their illness may instead be regarded as a failure of will. (I can’t believe I’m sticking up for Sharpe here!) You are selectively quoting him. I certainly don’t agree w Sharp, but we can fight against him without resorting to misinformation.

This is what he says:
We suggest that it is helpful to consider this controversy in terms of the modern medical concepts of illness and disease: illness refers to a person’s subjective experience of symptoms; disease refers to objective bodily pathology....

To answer this question we consider more closely the assumptions implicit in the modern distinction between illness and disease. By tracing the genealogy of the distinction to the emergence of modern scientific materialism, we can see that the concepts of disease and illness stand in a hierarchical relationship, such that illness needs to be corroborated by associated disease for its reality to be taken seriously. Consequently, patients who have an ‘illnesses-without-disease’ like CFS, find themselves in a paradoxical and morally ambiguous predicament. Paradoxical because whilst their experience of illness may be severe, the lack of disease may lead to it being regarded as trivial. Morally ambiguous because whist the person with CFS needs care, their illness may be regarded as a failure of will, rather than as a genuine affliction”

 

[valentinelynx]

I think Sharpe likes to have his cake and eat it too. He couches his statements with sufficient ambiguity that he can defend himself to "both sides" with impunity. He gives his true beliefs away with the phrase "the lack of disease may lead to it being regarded as trivial" rather than saying something like, "the apparent lack of disease on superficial study...".

And who in their right mind would accuse someone who is obviously seriously ill of "a failure of will"? That's sheer arrogance combined with cruelty.

 

[Countrygirl]

@Silencio , I appreciate your post, and agree, but I deliberately used the 'buzz' words in the heading as they are the ones busy doctors would latch onto as they reinforce their current perceptions of the patients. I have no doubt that Prof Sharpe is aware of that as he is trying to protect his reputation and standing. The choice of words, I suspect, is deliberate. It would be naive, in my opinion, to think otherwise.

 

[Countrygirl]

I think Sharpe likes to have his cake and eat it too. He couches his statements with sufficient ambiguity that he can defend himself to "both sides" with impunity. He gives his true beliefs away with the phrase "the lack of disease may lead to it being regarded as trivial" rather than saying something like, "the apparent lack of disease on superficial study...".

And who in their right mind would accuse someone who is obviously seriously ill of "a failure of will"? That's sheer arrogance combined with cruelty.

Yes! Agree! We are familiar with this tactic. The article is designed to reinforce the prejudices of busy doctors. while presenting it in such terms that enable him to deny the intent of misrepresenting patients in order to shore up his crumbling reputation.

 

[MEPatient345]

I think Sharpe likes to have his cake and eat it too. He couches his statements with sufficient ambiguity that he can defend himself to "both sides" with impunity.

He seems to enjoy doing this. And this is a rather weak and pointless paper, but I don’t think it’s as controversial as it’s being portrayed here.

He gives his true beliefs away with the phrase "the lack of disease may lead to it being regarded as trivial" rather than saying something like, "the apparent lack of disease on superficial study...".

He is using an official definition of “disease” being abnormal blood tests, or other objective diagnostics. He’s of course disregarding the more in-depth testing done by researchers, but I think that’s allowable bc he’s talking about clinicians and a clinic setting.

And who in their right mind would accuse someone who is obviously seriously ill of "a failure of will"? That's sheer arrogance combined with cruelty.

Well, lots of people and lots of doctors. Patients complain all the time about being treated like they’re not trying hard enough, or making it up, by their families and by doctors.

I appreciate your post, and agree, but I deliberately used the 'buzz' words in the heading as they are the ones busy doctors would latch onto as they reinforce their current perceptions of the patients. I have no doubt that Prof Sharpe is aware of that as he is trying to protect his reputation and standing. The choice of words, I suspect, is deliberate. It would be naive, in my opinion, to think otherwise.

I agree that he is trying to protect his reputation. I’m not being naive about his intentions at all. I’m just suggesting we don’t need to stoop to “fake news” to discuss how lame his paper and self protective measures are. Also,,, this is what busy doctors say about us... this is what patients complain about repeatedly. Why are we pretending it’s not? So we can disagree w Sharpe? We’re really getting mixed up here.

 

[garcia]

Agree with Silencio. There is a lot to criticize in this article, but not the stuff that you quoted IMHO.

why are the apparently benign psychological and behavioural treatments for fatigue—cognitive behaviour therapy (CBT) and graded exercise therapy (GET)—so very controversial.

I would posit that GET at least is anything but benign.

For some of these illnesses like CFS there is no generally accepted associated disease

This is the nub of the issue for people like Sharpe who ignore decades worth of biomedical findings.

For other illness like cancer-related fatigue, there is. In both cases disease-focussed treatment is commonly ineffective in relieving the fatigue, whereas, illness focussed treatments such as CBT and GET, can be.

Again this ignores the fact that they don't work. The reasoning he gives for why ME/CFS patients may avoid CBT is legitimate, but it's a minor reason. The main reason is that it's laughable as a primary treatment, and unlike cancer where it is a supportive to actual treatments, in ME/CFS it is the primary treatment.

I feel someone (more able than me) should write a full rebuttle to this article and contact the BMJ to try and include it as a counter. Make it 100% factual, source-based and non-argumentative.

 

[Wolfcub]

I feel someone (more able than me) should write a full rebuttle to this article and contact the BMJ to try and include it as a counter. Make it 100% factual, source-based and non-argumentative.

I agree. I wish I had the energy and ability to do that.

 

[Snow Leopard]

The headline of this post is really misleading. He does not say patients are weak willed and that CFS is trivial. He says that the lack of biological markers may lead to the disease being regarded as trivial; and that people who need care might be instead regarded to not have a genuine affliction, and their illness may instead be regarded as a failure of will. (I can’t believe I’m sticking up for Sharpe here!)

Have you ever heard the term "guilt by association"?

 

[MEPatient345]

Have you ever heard the term "guilt by association"?

Meaning I am guilty? Of... Oppressing patients? Because I.. like accurate headlines? Hmm interesting..

 

[valentinelynx]

He is using an official definition of “disease” being abnormal blood tests, or other objective diagnostics.

Ah, but no, that is not the definition of disease. It is a failing of modern medicine that it uses testing (laboratory or otherwise) as a surrogate for diagnostic skill. I found an intriguing paper about this, called "The Master Clinician’s Approach to Diagnostic Reasoning". It includes a table of the qualities demonstrated by clinicians with different levels of diagnostic skill. The highest level of skill belongs to those called "Master Clinicians (>10 y of Insightful Experience)", an intermediate level of skill belongs to "Experienced Physicians (>5 y of High Volume but Uninsightful Experience)" and the least to "Junior Physicians (<5 y of High Volume Based Experience". The first quality listed in this table is on what these clinicians of different skill levels base their diagnoses. The Master Clinicians diagnoses are "clinical findings based," the Experienced Physicians diagnoses are "primarily laboratory test based" and the Junior Physicians diagnoses are "entirely laboratory test based".

In other words, the physicians most skilled at diagnosing illness correctly base their decisions mainly on what the patient tells them and findings on clinical exam. Lab tests or imaging are used to confirm or rule out the diagnosis. Inexperienced physicians barely listen to or look at the patient and order a bevy of tests, hoping to hit on a diagnosis. Unfortunately, in the current health care environment, most physicians are reduced to acting like Junior Physicians, because they are limited to 10 minutes of contact with the patient, often with no continuity of care (seeing the same patient over the years).

It's an interesting essay. I recommend it.

 

[MEPatient345]

Ah, but no, that is not the definition of disease. It is a failing of modern medicine that it uses testing (laboratory or otherwise) as a surrogate for diagnostic skill.

Absolutely. But, do you agree that would represent the ideal state, that we are not at yet with doctors?. Many doctors do use his inaccurate definition of disease Ie. They say, there’s nothing wrong in the diagnostics, therefore, there’s nothing wrong with you. It’s something I’m dismayed to see voiced regularly by young doctors on the Medicine subreddit.

So, referring to this type of diagnosis phenomenon seems unsurprising to me. Only good doctors look at the whole clinical picture, and there are not enough of them so, he is talking about this current state of affairs. Instead of focusing on that, or the terms in the headline of this post, I agree with @garcia that the major flaws are that it defends CBT/GET as benign, ignores the research findings of “disease” outside of clinical setting, and well, the whole premise of the paper is pointless given what we all know now..

 

[Snow Leopard]

Meaning I am guilty? Of... Oppressing patients? Because I.. like accurate headlines? Hmm interesting..

Simply mentioning that some people consider the illness to be trivial puts that message in people's heads. It doesn't matter what he claims his personal beliefs are, the fact is he is implying that 'considering the illness to be trivial' is a legitimate point. The possible association is implied and we are guilty of this association as a result.

 

[Roy S]

Mind, Medicine and Morals: A Tale of Two Illnesses

is nowwwww...

Chronic Fatigue Syndrome and an Illness-Focused Approach to Care: Controversy, Morality, and Paradox

https://blogs.bmj.com/medical-human...uprjRYO7VRu0xrPfFipWItthUY2Sk4XOJ6VL7dkjXqIIQ

Accurate history will not treat you well, Sharpe.