A perspective on causation of the chronic fatigue syndrome by considering its nosology, 2019, White

Wonko said:
Are there any London criteria for ME?

I thought that all of them, used in London, were criteria for CFS - in which case comparing the results gained using the London criteria for 'ME', against those obtained using the criteria for CFS, in London, would appear to be meaningless doublespeak.

Designed to misdirect and deceive.
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The authors, Ellen Goudsmit PhD, Anne Macinyre MD (both ME patients), etc. called them the London criteria themselves presumably to use similar terminology to the Oxford CFS criteria.
 
Similarly, if and when biomarkers are eventually established, this will not imply that the illness cannot be a mental illness, since biomarkers are already apparent in some mental disorders.
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When a biomarker is discovered, what will happen is not that psychiatrists will continue to treat CFS patients with CBT/GET as White appears to hint at, but that CBT/GET will be shown to be ineffective at treating the illness beyond any reasonable doubt.

This is easy to predict because objective markers of impairment, fitness, activity levels and so on do not improve with CBT/GET.
 
Dolphin said:
The authors, Ellen Goudsmit PhD, Anne Macinyre MD (both ME patients), etc. called them the London criteria themselves presumably to use similar terminology to the Oxford CFS criteria.
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Okay, I've just read the London criteria, IMO they are not a definition for ME, as there is no mention of PEM, or anything resembling it by another name.

They might be a definition for CFS but not for ME.

No matter who wrote them, or what they chose to call them.

Which brings me back to my original point, comparing CFS (as defined by the London ME criteria) with CFS (as defined by White) and stating that they are the same thing, is deliberately deceptive.

But it's a pointless 'debate'.
 
Wonko said:
Okay, I've just read the London criteria, IMO they are not a definition for ME, as there is no mention of PEM, or anything resembling it by another name.

They might be a definition for CFS but not for ME.

No matter who wrote them, or what they chose to call them.

Which brings me back to my original point, comparing CFS (as defined by the London ME criteria) with CFS (as defined by White) and stating that they are the same thing, is deliberately deceptive.

But it's a pointless 'debate'.
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They use post-exertional 'muscle fatiguability' as a similar concept. Note that although it refers to muscles, this criterion also says that 'symptoms' worsen (it doesn't say which ones) in the following 24-48 hours.

It's explicitly based on the Ramsay definition, which also refers to muscle fatiguability rather than PEM. More info here: https://me-pedia.org/wiki/London_criteria

Not that I'm saying it's not necessarily problematic.
 
This is what the PACE Trial team once said on names, criteria, etc.:
Response to the complaint to The Lancet of March 2011

4. The trial did not study ME/CFS (pages 12-18)

The selection of patients was for CFS operationalised using the broadest criteria (the Oxford criteria). No sensible neurologist would apply the diagnosis of CFS (or indeed ME) to patients who had “proven organic brain disease”, such as Parkinson’s disease. For the purposes of this trial ME was not regarded as a “proven organic brain disease”. In order to ensure balance between the trial arms in those participants who met alternative criteria for CFS and ME, randomisation was stratified by the International (Centers for Disease Control) criteria (which require additional symptoms) and by the London ME criteria (based on Melvin Ramsay’s original description, and which excludes co-existing “primary” psychiatric disorders [which we interpreted as any psychiatric disorder] and emphasises post-exertional fatigue). We were provided with the second revised version of the London ME criteria; we did not invent our own. We considered use of the Canadian criteria for ME but we found it impossible to operationalise them adequately for research purposes; to our knowledge they have not been used in a major research trial. We studied the results for differently defined subgroups and they were similar to those in the entire group.

---

1. Terminology and Classification (pages 4 to 6)
We did not use the ICD-10 classification of myalgic encephalomyelitis (ME) because it does not describe how to diagnose the condition using standardised criteria, so cannot be used as reliable eligibility criteria. The PACE trial paper refers to chronic fatigue syndrome (CFS) which is operationally defined; it does not purport to be studying CFS/ME but CFS defined simply as a principal complaint of fatigue that is disabling, having lasted six months, with no alternative medical explanation (Oxford criteria). We also used the best available (operationalised) alternative criteria for CFS and ME (International [Centers for Disease Control] and London criteria) and determined which participants met these.
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Attachments

Sly Saint said:
this is incorrect. Per Finks BDS is not in the ICD-11

https://causehealthblog.wordpress.com/about/
https://twitter.com/cause_health?lang=en

White says:
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Just popping up to confirm that White is incorrect.

The Fink BDS construct has not been included in the core ICD-11.

For the core ICD-11, the WHO has approved the "Bodily distress disorder (BDD)" construct which is strongly aligned with DSM-5's SSD and is differently conceptualised to Fink's BDS and has different criteria.

Also incorrect is his statement:

"Finally, the miscellaneous chapter includes “R53.82 Chronic fatigue, unspecified,” which includes “chronic fatigue syndrome NOS,”

These two categories are specific to the U.S's ICD-10-CM. They are not included in the WHO's unmodified, ICD-10 or in ICD-11.

At one point, both had been included under the Index Terms to PVFS for ICD-11. But I submitted for removal of both of them and both were removed.


So he's reiterated the exact same error he made in his 2008 RSM presentation.

I shall be posting this PDW paper on the ICD-11 Orange Maintenance Platform drawing attention to the error made by PDW. This paper adds to the numerous examples I have already provided to WHO of clinicians and researchers confusing and conflating Fink's BDS with ICD-11's BDD.

I shall also send a copy of this paper to WHO's Dr Robert Jakob and Dr Geoffrey Reed and I shall write to the journal editors.


For comparison of SSD, BDD, BSS, BDS see:

Comparison of Classification and Terminology Systems, Chapman & Dimmock, July 2018

https://dxrevisionwatch.files.wordp...-bdd-bds-bss-in-classification-systems-v1.pdf


Also note:

https://dxrevisionwatch.com/2019/06...behavioural-and-neurodevelopmental-disorders/

(...)

ICD-11 PHC

Since 2012, I have been reporting on the parallel development of the ICD-11 Primary Health Care (PHC) Guidelines for Diagnosis and Management of Mental Disorders (ICD-11 PHC).

The ICD-11 PHC is a revision of the Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version. 1996.

ICD-11 PHC is a clinical tool written in simpler language to assist non-mental health specialists in primary care settings and non medically trained health workers, and also intended for use in low resource settings and in low- to middle-income countries.

It comprises 27 mental disorders considered to be most clinically relevant in primary care and low resource settings. (It is a misnomer to refer to the ICD-11 PHC as the “Primary Care version of ICD-11” since it contains just 27 mental disorders and no general medical diseases or conditions.)

It is important to note that like the ICD-10 PHC, this revised diagnostic and management guideline won’t be mandatory for use by member states, although the WHO hopes this revised edition will have greater clinical utility than the ICD-10 PHC (1996).

The WHO intends to make the ICD-11 PHC publication, once completed, free to download by anyone. There is currently no date available for its projected finalization or release.

The revision is the responsibility of the WHO Department of Mental Health and Substance Abuseadvised by an external advisory group — the Primary Care Consultation Group (PCCG) which is chaired by Prof Sir David Goldberg*; Vice-chairs: Dr Michael Klinkman and WHO’s, Dr Geoffrey Reed.

*Prof Sir David Goldberg also chaired the working group for the development of ICD-10 PHC (1996). Dr Michael Klinkman is a GP who represents WONCA (World Organization of Family Doctors) and current convenor of WONCA’s International Classification Committee (WICC) that is responsible for the development and update of the WHO endorsed, ICPC-2 (International Classification of Primary Care).

The full draft texts for the 27 mental disorder categories proposed for inclusion in the ICD-11 PHC have not been made available for public scrutiny, but a number of progress papers, field trial evaluations and presentations have been published since 2010 [5-8].

25 of the 27 mental disorder categories proposed for inclusion in the ICD-11 PHC have equivalence with mental disorder classes within the core ICD-11’s Chapter 06.

ICD-11 PHC is proposed to include a disorder category called “Bodily stress syndrome (BSS)” which replaces ICD-10 PHC’s “F45 Unexplained somatic complaints/medically unexplained symptoms” and “F48 Neurasthenia” categories.

This proposed “Bodily stress syndrome (BSS)” diagnosis has been adapted from the Fink et al (2010) Bodily distress syndrome (BDS). “Bodily stress syndrome (BSS)” does not have direct equivalence to a diagnostic construct in the core ICD-11.

The ICD-11 PHC’s “Bodily stress syndrome (BSS)” requires at least 3 persistent, medically unexplained symptoms, over time, of cardio-respiratory, gastrointestinal, musculoskeletal, or general symptoms of tiredness and exhaustion, that result in significant distress or impairment.

Under exclusions and differential diagnoses for BSS, certain psychiatric and general medical diagnoses have to be excluded but CFS, ME; IBS; and FM appear not to be specified as exclusions. So this (non mandatory) 27 mental disorder guideline needs very close scrutiny.

For the mandatory core ICD-11 classification, the WHO is going forward with the differently conceptualized, Bodily distress disorder (BDD), which has close alignment with DSM-5’s Somatic symptom disorder.*

*See: Comparison of SSD, BDD, BDS, BSS in classification systems, Chapman & Dimmock, July 2018.



If ICD-11 PHC goes forward with its proposed BSS category, there will be all these diagnostic constructs in play:

Somatic symptom disorder (DSM-5; under Synonyms to BDD in the core ICD-11)
Bodily distress disorder (core ICD-11; SNOMED CT)
Bodily stress syndrome (ICD-11 PHC guideline for 27 mental disorders)
Bodily distress syndrome (Fink et al 2010, operationalized in Denmark and beyond)

plus the existing ICD-10 and SNOMED CT Somatoform disorders categories and their equivalents in ICPC-2.

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Similarly, if and when biomarkers are eventually established, this will not imply that the illness cannot be a mental illness, since biomarkers are already apparent in some mental disorders.
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Oh really? Why didn't he say which ones and what the biomarkers are? I would love to see this claim scrutinized.

Wouldn't it also depend on what the biomarker was if it was discovered.
 
adambeyoncelowe said:
They use post-exertional 'muscle fatiguability' as a similar concept. Note that although it refers to muscles, this criterion also says that 'symptoms' worsen (it doesn't say which ones) in the following 24-48 hours.

It's explicitly based on the Ramsay definition, which also refers to muscle fatiguability rather than PEM. More info here: https://me-pedia.org/wiki/London_criteria

Not that I'm saying it's not necessarily problematic.
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I have not read the paper yet, the free link does not work any longer, I just want to say PEM was not yet in use when I was dxd according to Ramsay’s criteria in 1984. Ramsay spoke of muscle fatigability and gross fatigue on trivial exertion, with delayed recovery, and generally feeling like hell. Not sure when PEM came into use.
 
As posted in three places on the ICD-11 Orange Maintenance Platform. I shall contact WHO's Dr Jakob and Dr Reed tomorrow, Ccing in the journal editors and PDW:

https://icd.who.int/dev11/proposals...lGroupId=9eed7282-e22b-4d03-95bf-dacb7e9fdb04

ORIGINAL PAPER
A perspective on causation of the chronic fatigue syndrome by considering its nosology
Peter Denton White MD
First published: 01 August 2019 https://doi.org/10.1111/jep.13240
https://onlinelibrary.wiley.com/doi/abs/10.1111/jep.13240

This is to advise WHO, MSAC and CSAC, that this paper published by Peter Denton White ( Emeritus Professor of Psychological Medicine, Wolfson Institute of Preventive Medicine, Queen Mary University of London, London EC1M 7BQ, UK. peter.white@qmul.ac.uk ) in Journal of Evaluation in Clinical Practice contains several errors and misconceptions in relation to the content of ICD-10 and ICD-11:

1 This statement within the paper is incorrect:

"Turning to established diagnostic classification systems, how are CFS and ME considered? There are arguably seven different ways to classify the illness within the International Classification of Diseases, 10th edition (ICD‐10)...Finally, the miscellaneous chapter includes "R53.82 Chronic fatigue, unspecified," which includes "chronic fatigue syndrome NOS".24

24. World Health Organisation. International Classification of Diseases,
10th edition. 2016. Retrieved from: https://www.who.int/classifications/icd/icdonlineversions/en/

The entities, "R53.82 Chronic fatigue, unspecified" and its inclusion, "chronic fatigue syndrome NOS" are specific to the U.S's clinical modification, ICD-10-CM. These two terms are not coded for or indexed in the WHO's ICD-10.


2 Peter Denton White has also stated:

"The 11th edition of the ICD still holds ME in the neurology chapter, classified under post‐viral fatigue syndrome, whereas there has been a radical change to somatoform disorders within the mental and behavioural disorders chapter, which now considers these as examples of “body distress disorder.” Neurasthenia has been omitted.2"

which is correct, but Prof White also states:

"This clustering of functional somatic syndromes has been reported many times and needs to be considered in any study of the aetiology of CFS. Fink's concept of body distress syndrome recently incorporated into ICD‐11 is an alternative way of considering this finding.29"

29. Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010;68(5): 415‐426.


The Fink et al (2010) diagnostic construct, "Bodily distress syndrome (BDS)" has not been incorporated into the core ICD-11. For the core ICD-11, WHO has approved the differently conceptualized, "Bodily distress disorder (BDD)" [1].

WHO's Dr Robert Jakob and Dr Geoffrey Reed are being informed of the errors within this paper, as are the journal editorial staff and the author. I suggest that WHO also discusses these errors with the journal and the author of this paper and requests that an Erratum is published in the journal's next edition.

This paper provides WHO, MSAC and CSAC with further evidence of clinicians and researchers confusing and conflating ICD-11's BDD with the differently conceptualised, Fink et al (2010) Bodily distress syndrome (BDS) in published journal papers [2].

[1] ICD-11 for Mortality and Morbidity Statistics (Version : 04 / 2019), 6C20 Bodily distress disorder:
https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/767044268

[2] Proposal, Suzy Chapman, submitted March, 02, 2017:
https://icd.who.int/dev11/proposals...lGroupId=c321880e-aa46-4328-ac19-7153c5e7a364

Suzy Chapman 2019-Aug-03 - 15:12 UTC
 
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Wonko said:
Okay, I've just read the London criteria, IMO they are not a definition for ME, as there is no mention of PEM, or anything resembling it by another name.

They might be a definition for CFS but not for ME.

No matter who wrote them, or what they chose to call them.

Which brings me back to my original point, comparing CFS (as defined by the London ME criteria) with CFS (as defined by White) and stating that they are the same thing, is deliberately deceptive.

But it's a pointless 'debate'.
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London criteria (PEM is a symptom): https://www.meassociation.org.uk/20...-here-for-reference-purposes-15-october-2016/

Also, and with reservations, I thought some of what White has said in his paper was quite reasonable.

Probably not popular but I think some of the observations are things we as a community have to appreciate and hope that better science will address e.g. the heterogeneity, number of often conflicting criteria, even accepting that there may be less of a clear delineator between 'physical' and 'mental' (although I think here it is more of a problem for medicine and the related treatments it seems to want to throw at us), and lack of replication (which arguably could be the fault of lack of research funding provision).

There does seem to be a reluctance on the part of researchers to apply for major funding once they've published small pilot studies usually with charity finance - although it was very welcome news to read last week that Jarred Younger had bucked this trend and received major funding from the NIH.

I'd be interested to read @Jonathan Edwards take on the paper in light of his comments recently with regard to 'what we know' about M.E.

Edited.

Russell
 
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Russell Fleming said:
Also, and with reservations, I thought some of what White has said in his paper was quite reasonable.
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He's good at sounding reasonable. I agree with him that there is a problem with so many definitions, and with lumping and splitting, and we don't yet know the aetiology and whether it's one illness or several and well run prospective studies might be helpful in understanding aetiology.

But the combination of his terrible contribution to adding to that set of problems by using Oxford in the PACE trial and all the shenanigans surrounding that, and his continued insistence in his philosophical ramblings that ME and or CFS have a psychosocial dimension, scupper it for me as a useful contribution. He is adding to the confusion, not clarifying anything.
 
Russell Fleming said:
Also, and with reservations, I thought some of what White has said in his paper was quite reasonable.

Probably not popular but I think some of the observations are things we as a community have to appreciate and hope that better science will address e.g. the heterogeneity, number of often conflicting criteria, even accepting that they may be less of a clear delineator between 'physical' and 'mental' (although I think here it is more of a problem for medicine and the related treatments it seems to want to throw at us), and lack of replication (which arguably could be the fault of lack of research funding provision).
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I assume he sees which way the wind is blowing and is doing his best to shore up his defences before the storm overtakes him. This way he'll be able to say "but I always said it was a complex condition with heterogenous triggers! None of this new research in any way invalidates my own theories!"
 
Wonko said:
Didn't he say that he was only studying Oxford defined CFS and that PACE had absolutely nothing to do with ME, and hasn't he also said that he's completely left the field as he's far too terrified of pwME, as they might occasionally say things he considers mean about his 'work'?

So it's reassuring to know that he is a man of his word and this paper doesn't exist.
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The trick is if you say every possible variation you can always point to some that happened to not be entirely wrong.

The fortune cookie approach to medicine. Works about as well as one would expect.
 
Kalliope said:
There's also a "philosophical epilogue":

The preceding evidence suggests that CFS/ME is not one illness, and understanding its aetiology is therefore challenging in the absence of clearly defined subgroups, some delineated by biological factors, and others by psychological factors. But finding psychological or social factors associated with this illness does not however imply that the illness is a mental illness; many chronic and disabling diseases show such associations. Similarly, if and when biomarkers are eventually established, this will not imply that the illness cannot be a mental illness, since biomarkers are already apparent in some mental disorders.54 Western medicine is still the bedevilled by Cartesian dualism, which determines that phenomena are either physical or mental, whereas the reality is more complex and compelling. So the question as to whether CFS/ME is a neurological or mental illness is clearly meaningless, since it has features of both, and cannot be classified convincingly as one or the other.54

It was the Scottish neurologist Kinnier Wilson who suggested that“This antithesis between organic and functional disease states still lingers at the bedside and in medical literature, though it is transparently false and has been abandoned long since by all contemplative minds.“55 The American philosopher John Searle described the monist solution to our dualist conundrum, by his theory of biological natural- ism, pointing out that conscious states are caused by neurophysiolog- ical processes, and are realized in neurophysiological systems.56 But this should not be taken to imply that humans have no mind, only a brain. Light can be studied as either photons (particles) or waves; in similar fashion, illnesses can be considered usefully from a mental as well as a physical point of view. And we have to go back to Hippocrates, who presciently concluded that “the nature of the body can only be understood as a whole, for it is the great error of our day in the treatment of the human body that physicians separate the soul from the body.”57
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Oh, goodie. Retrospective philosophical musings from someone who spent his entire career being wrong about this topic. Just what we need. Like I need a second butthole on my elbow.

Very ironic to use the wave-particle duality of light considering that quantum mechanics are extremely famous precisely for being completely different from the rest of reality and that none of its peculiarities translate at other scales. This duality is literally most famous for being so bizarrely unique and here he goes arguing that it supports the case for other dualities. Bravo. Go away Peter. You're very bad at this.
 
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Cinders66 said:
So where is the evidence that ME has universally or even in the majority symptoms indicating mental illness . ? Depression and anxiety are not core features or explanatory features eg someone who has had to give up work might get depressed but the pain and fatigue etc that’s caused them to give up work wasn’t caused by depression.
They Just want this “debate “ to continue when America Australia etc seem to have well gotten over it and are quite happy to classify it and define it as “physical”. It’s like the climate change debate, vested interests saw their best defence to perpetuate ideas of uncertainty. You don’t act on something that’s a grey area, keep up the doubt and nothing changes.
I think that if ron Davis makes a biomarker from his nano needle test showing cells struggling in a stressed salt environment, that would support a physical not mental health classification?
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  1. Misdiagnose ME patients with all sorts of random acronym mental disorders that are built around depression, mood, personality, attitude, thoughts, beliefs and anxiety
  2. Begrudgingly relent and diagnose ME patients after years of needless suffering
  3. Point to past misdiagnoses as evidence of a connection
Literally pointing to their own mistakes as evidence that they were correct all along. Couldn't make this stuff if you tried.

Ironically one of the biggest breakthroughs in machine learning is back-propagation, a process that corrects past mistakes and learns specifically from knowing they were mistakes and why they were mistakes. Here is the exact opposite: pointing to past mistakes as a valid connection and reach the wrong conclusions. Congratulations Peter on being less competent than a machine learning algorithm.
 
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