Why Bioethics Should Be Concerned With Medically Unexplained Symptoms. (2018) O'Leary

Loved the opening para:
Biomedical diagnostic science is a great deal less successful than we’ve been willing to acknowledge in bioethics. While the foundations of clinical ethics have been centered on a model of medical practice involving established biological diagnosis, in truth that model applies only in a portion of cases. Are current bioethical tools adequate for addressing the ethical complexities that arise in cases of medically unexplained symptoms?
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And this line, so true - look at the authors in that reference!
For example, as explained in “The Function of ‘Functional,” etiologically ambiguous terms for psychogenic diagnosis “conceal some of the conflict in a particularly contentious area,” offering the “advantage” of “allowing neurologists to use the same term to mean one thing to colleagues and another to patients” (Kanaan, Wessely, and Armstrong 2012, 250).
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Moreover, when studies do set out to determine error rates for psychogenic diagnosis (de Gusmao et al. 2014; Schuepbach, Adler, and Sabbioni 2002; Skovenborg and Shroder 2014), they generally adopt the strategy of following up to determine how often patients with psychogenic diagnosis “are subsequently given a disease diagnosis that, in hindsight, explained their original symptoms” (Stone et al. 2005, 989)—a process that might tell us a great deal about doctors’ reluctance to overturn a psychogenic diagnosis, and nothing at all about the actual rate of error.
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And this one:
But this is the borderland between medicine and psychiatry, and in this area we should be suspicious of our willingness to allow popular ideas about “mind–body integration” to substitute for serious, well-defended philosophical reasoning
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philosophical reasoning has no place in medical/biological science .and all sophistry is designed to obfuscate with bull shit . what kind of people think it is exceptable to build careers out of harming so many sick and disabled people.
 
If doctors have given a patient a psychogenic diagnosis for a particular set of symptoms, I am completely in the dark about how a patient gets that diagnosis overturned. Based on the stuff I've read about MUS and its various euphemisms there is no way it can be done. There are no procedures described in all the blurb I've read that can be invoked by either the patient or the doctor to overturn it.
 
somewhere since private medicine became a big government backed institution the profession changed and became far more abusive and controlling. this seems to happen in all bureaucracies in my personal experience . the empire builders within our institutions bully every one below them into unthinkingly carryout their personal agendas without any moral or ethical compass.
 
Arnie Pye said:
If doctors have given a patient a psychogenic diagnosis for a particular set of symptoms, I am completely in the dark about how a patient gets that diagnosis overturned.
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Especially when the diagnosis is based a few years later on the same oxymoron the first diagnosis was made with: medicine is a finished science.
They are looking for a known and understood disease that could have been missed before not even thinking their paradigm is wrong, so I don't see how things could change...
 
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Woolie said:
Loved the opening para:

And this line, so true - look at the authors in that reference!

And this one:
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Why would Dr O'Leary seek to publish inaccurate information about the status of proposals for the core ICD-11 version?

What is your opinion on Dr O'Leary's 3 April statements:

"Criteria for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease."

and

"What Can We Do About It?
It is very important to be clear and focused about the nature of the objection. ME advocates have no reason to object to the basic criteria for BSS in the ICD for primary care, ICD-11-PHC. In fact, it is in the interests of ME patients to encourage the WHO to adopt just the basic criteria for BSS as they are currently in place. Both studies by the WHO support doing so, and an additional, independent study in Austria also supports doing so. This is the goal."
 
adambeyoncelowe said:
I'm guessing it's just misinformation. It's terribly complicated, so she might not have been advised well.
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Sorry, I don't accept that.

Dr O'Leary is no ingénue when it comes to ICD-11 proposals.

Dr O'Leary has access to the Beta draft. She has access to the Beta Proposal Mechanism. She has submitted comments about PVFS, BME, CFS. And very recently, a comment in response to the Dr Tarun Dua proposal.

Last year, she submitted a proposal for the Deletion of BDD as "unethical."

This year, apparently, "Criteria for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease."

Where is the logic in that? BDD cannot be both unethical and not particularly problematic for ME patients.


In 2014 - 2016 Dr O'Leary had a website "The Coalition for Diagnostic Rights" - now just a holding page. That site contained information about the proposed BDD for the core version and the proposed BSS for the "Primary Care" publication; some of that information came from my site and from discussions I had had at the time, with Dr O'Leary, around the some of the content on her site. She also had a Twitter account and a Facebook page linked to that website.

If you are not aware from other threads, Dr O'Leary has been advising Forward-ME around the BSS proposal for the "Primary Care" publication.

There has never been any other construct under consideration for the core ICD-11 edition than BDD. BDD will be going through to the initial version of ICD-11 that will be released in around 7 or 8 weeks time.

BDD was added to SNOMED CT in July 2017, as part of the SNOMED CT to ICD-11 mapping process.

So I ask again, why does Dr O'Leary choose to present the proposal for the core version thus

"This controversy has left the World Health Organization
in a state of uncertainty about the construct that
should fill the slot for the new edition of the international
diagnostic coding manual, ICD-11, due out in 2018."

and:

"With both sets of issues we find ourselves at a crucial
historical juncture..."

When there is no state of uncertainty?

It is not logical. It is inaccurate; and it misleads.


https://web.archive.org/web/20160424185319/http://www.diagnosticrights.org:80/

https://web.archive.org/web/2015090...s.org/current-debates/current-debates-page-4/

...Suzy Chapman is a UK patient advocate who tracks the development of changes to “Somatoform Disorder” through the website, Dx Revision Watch. Ms. Chapman alerted the public recently when the North American contingent of WHO seemed poised to slip “Somatic Symptom Disorder” into its interim edition (called ICD-10CM) in a way that bypassed the usual process of debate and discussion for changes that are especially important or controversial...

My highlighting.

No it did not. The proposal to add SSD to the ICD-10-CM went through the usual process of submission and review at a public C & M Meeting, followed by the usual public comment period. O'Leary was advised in 2014 that her summary above is incorrect. But she did not amend it.

Caveat emptor.
 
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Dx Revision Watch said:
Sorry, I don't accept that.

Dr O'Leary is no ingénue when it comes to ICD-11 proposals.

Dr O'Leary has access to the Beta draft. She has access to the Beta Proposal Mechanism. She has submitted comments about PVFS, BME, CFS. And very recently, a comment in response to the Dr Tarun Dua proposal.

Last year, she submitted a proposal for the Deletion of BDD as "unethical."

This year, apparently, "Criteria for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease."

Where is the logic in that? BDD cannot be both unethical and not particularly problematic for ME patients.


In 2014 - 2016 Dr O'Leary had a website "The Coalition for Diagnostic Rights" - now just a holding page. That site contained information about the proposed BDD for the core version and the proposed BSS for the "Primary Care" publication; some of that information came from my site and from discussions I had had at the time, with Dr O'Leary around the content of her site. She also had a Twitter account and a Facebook page linked to that website.

If you are not aware from other threads, Dr O'Leary has been advising Forward-ME around the BSS proposal for the "Primary Care" version.

There has never been any other construct under consideration for the core ICD-11 edition than BDD. BDD will be going through to the initial version of ICD-11 that will be released in around 7 or 8 weeks time. BDD was added to SNOMED CT in July 2017, as part of the SNOMED CT to ICD-11 mapping process.

So I ask again, why does Dr O'Leary choose to present the proposal for the core version thus

"This controversy has left the World Health Organization
in a state of uncertainty about the construct that
should fill the slot for the new edition of the international
diagnostic coding manual, ICD-11, due out in 2018."

and:

"With both sets of issues we find ourselves at a crucial
historical juncture..."

When there is no state of uncertainty?

It is not logical. It is inaccurate; and it misleads.
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Exactly. It's not logical. So it's more likely to be a mistake or misunderstanding than it is malice.
 
Dx Revision Watch said:
What is your opinion on Dr O'Leary's 3 April statements:

"Criteria for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease."
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I'm not sure I know enough about the BDD criteria to make a judgement here.

I don't think any of the statements I quoted rested on incorrect information about classification systems, but I appreciated you providing us with the correct information, its always good to be well informed.
 
Woolie said:
I'm not sure I know enough about the BDD criteria to make a judgement here.

I don't think any of the statements I quoted rested on incorrect information about classification systems, but I appreciated you providing us with the correct information, its always good to be well informed.
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Indeed it is.
 
Dx Revision Watch said:
I suggest you ask her why she has presented BDD thus.
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adambeyoncelowe said:
Exactly. It's not logical. So it's more likely to be a mistake or misunderstanding than it is malice.
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Why would an academic writing a peer reviewed article make a "mistake" or a "misunderstanding"?

We are taking here about someone who is actively engaging via comments and proposals on the Beta draft, itself, including comments and proposals in relation to both BDD and BSS (and also on PVFS, BME and CFS), and who is currently seeking to influence Forward-ME around the BSS proposals.

So, this year, she announces BDD is "not particularly problematic for ME patients..." Whereas last year, she submitted for the Deletion of BDD on ethical grounds.

This year, the "simpler" BSS proposals are

"...in the interests of ME patients to encourage the WHO to adopt just the basic criteria for BSS as they are currently in place."

When no form of BSS can be considered safe for ME patients.

and asserts

"This controversy has left the World Health Organization
in a state of uncertainty about the construct that
should fill the slot for the new edition of the international
diagnostic coding manual, ICD-11, due out in 2018."

When there is no uncertainty. And hasn't been since BDD was first added to the draft, in early 2012.

So what is she playing at?

There is no proposal to consider BSS for the core version. No "controversy" over the core version - at least, not as far as what construct ICD Revision is taking forward to replace the ICD-10 Somatoform disorders.

But perhaps the facts aren't sensational enough.
 
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Woolie said:
I'm not sure I know enough about the BDD criteria to make a judgement here.
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The ICD-11 core editions's replacement for most of the ICD-10 Somatoform disorders is very close in characterization, criteria and the patient populations it includes to DSM-5's Somatic symptom disorder. There is some difference in the characterization of the three optional severity specifiers, but otherwise conceptually, BDD and SSD have strong alignment and SSD has been listed under Synonyms to BDD, in ICD-11.

(I note that Dr O'Leary cites the Frances BMJ commentary from March 2013, in which we set out the problems with SSD and our hopes that ICD Revision would not reiterate the same mistakes as the DSM-5 Task Force.)


For commentaries on the problems with SSD see:

Allen Frances¹, Suzy Chapman². DSM-5 somatic symptom disorder mislabels medical illness as mental disorder. 1 Department of Psychiatry, Duke University 2 DxRevisionWatch.com
Aust N Z J Psychiatry. 2013 May;47(5):483-4. doi: 10.1177/0004867413484525 http://www.ncbi.nlm.nih.gov/pubmed/23653063

In collaboration with Professor Allen Frances, chair of DSM-IV task force:

Frances A. DSM-5 Somatic Symptom Disorder. J Nerv Ment Dis. 2013 Jun;201(6):530-1. doi: 10.1097/NMD.0b013e318294827c http://www.ncbi.nlm.nih.gov/pubmed/23719325

Frances A. The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill. BMJ. 2013 Mar 18;346:f1580. doi: 10.1136/bmj.f1580 http://www.ncbi.nlm.nih.gov/pubmed/23511949


Feature: Has the manual gone mental? Michael Gross, Current Biology, Volume 23, Issue 8, R295-R298, 22 April 2013 doi:10.1016/j.cub.2013.04.009

Comment submitted to ICD-11 TAG Mental Health, May 2015 re: Bodily distress disorder Suzy Chapman, May 2, 2015

Allen Frances, BMJ 2013;346:f1580 BMJ Press Release

Somatic Symptom Disorder could capture millions more under mental health diagnosis Suzy Chapman, Dx Revision Watch, May 26, 2012

Submission to DSM-5 SSD Work Group on third draft Suzy Chapman, Dx Revision Watch, June 2012

Mislabeling Medical Illness As Mental Disorder Allen Frances (with Suzy Chapman), Psychology Today, DSM 5 in Distress, December 8, 2012

Bad News: DSM 5 Refuses to Correct Somatic Symptom Disorder Allen Frances (with Suzy Chapman), Psychology Today, DSM 5 in Distress, January 16, 2013

Why Did DSM 5 Botch Somatic Symptom Disorder? Allen Frances (with Suzy Chapman), Psychology Today, Saving Normal, February 6, 2013

New Psych Disorder Could Mislabel Sick as Mentally Ill Susan Donaldson James, ABC News, February 27, 2013

Somatic Symptom Disorder is discussed in Saving Normal: An Insider’s Revolt Against Out-Of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life (pp. 193-6): Allen Frances, William Morrow & Company (20 May 2013).

Also in Essentials of Psychiatric Diagnosis: Responding to the Challenge of DSM-5 (Chapter 16): Allen Frances, Guilford Press (14 June 2013).


And more recently:

Comment, ICD-11 Beta draft:

Why Bodily Distress Disorder is very problematic and why exclusions are essential:

https://dxrevisionwatch.files.wordpress.com/2018/04/bdd-3.pdf
 
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Arnie Pye said:
If doctors have given a patient a psychogenic diagnosis for a particular set of symptoms, I am completely in the dark about how a patient gets that diagnosis overturned. Based on the stuff I've read about MUS and its various euphemisms there is no way it can be done. There are no procedures described in all the blurb I've read that can be invoked by either the patient or the doctor to overturn it.
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From Stone/Sharpe 2005:
Nature of misdiagnosis and cause of death
The nature of the revised diagnosis was reported in 68 out of 123 cases. Epilepsy (n = 13), movement disorders (n = 6), and multiple sclerosis (n = 6) were most common. The presenting symptom of the misdiagnosed patients was described in 52 cases; the most common were gait disorder (n = 17), seizures (n = 13), and movement disorder (n = 5). In the eight cases in which an initial diagnosis of pseudoseizures was later changed to one of epilepsy (and in which the seizure type was described), five had frontal lobe epilepsy—a cause of unusual attacks that can sometimes be missed even by videotelemetry. Possible reasons for misdiagnosis mentioned in the papers were bizarre presenting symptoms and the presence of a psychiatric history.44–45 46 Nearly a third of the recorded deaths at follow-up (13/47) were by suicide. Other causes of death included immobility (without a new organic diagnosis) (n = 2), vascular disease (n = 7), and cancer (n = 8, one brain tumour).
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Invisible Woman said:
Pardon, if you have mentioned it somewhere @Dx Revision Watch , but is Dr O'Leary advising @Action for M.E. in their approach to WHO this month?

Beyond them both being members of the Forward ME group that is?

Action for ME, can you tell us who is advising you in this matter?
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I cannot speak for Action for ME.

Dr O'Leary is not a member of Forward-ME group, which is for UK orgs, not individuals.

Dr O'Leary had given a presentation to Forward-ME on March 28. On April 3, a document by Dr O'Leary was posted on the site of Forward-ME and also appeared on the site of ME Research UK. The copy on ME Research UK's site was subsequently pulled. The other main charities did not publish this document.

Following discussions, the Countess of Mar posted a statement on Forward-ME, dated April 9. On April 10, a second document, titled "Immediate Action Needed" by Dr O'Leary was linked to by ME Research UK website, although this second document has not been posted on Forward-ME's site. So there are now two Dr O'Leary documents in circulation, though it remains unclear whether the second document is intended to replace the first document or how the second document relates to the statement issued by the Countess of Mar, dated April 9.

The second document appears to be a heavily edited version of the initial document.
 
Snow Leopard said:
From Stone/Sharpe 2005:

Nearly a third of the recorded deaths at follow-up (13/47) were by suicide.
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/sarcasm on

I have wondered what will happen to the suicide rate and average life expectancy in the coming years. Losing tens of thousands of the chronically ill to suicide will cut costs wonderfully. And, of course, anyone who commits suicide was clearly mentally ill, so the medical profession was right all along!

/sarcasm off
 
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