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

Of course while White is correct about the sheer number of competing criteria for ME/CFS his comments are rather unfair in that most research now is either using Fukuda or Canadian, or both. And I think we've seen a couple of ICC research papers as well.

I'd even suggest that use of Fukuda is in decline. And given the state of knowledge I don't really understand why organisations like NICE don't simply adopt the Canadian criteria for clinical diagnosis instead of having their own version. Is it really necessary to have different clinical diagnostic criteria?

What did you all think about his comments regarding migraine? Aside from the conflating of syndromes under some arbitrary and unwelcome heading, I wonder if we shouldn't talk more about migraine and ME/CFS? If you have experienced migraine as I have - although I don't experience them to the frequency of my best pal who also has M.E. and my experience differs notably to his; then I think it is quite striking how a very similar degree of sensitivity to light, noise and smell is replicated across the two conditions.

When I get a migraine, I have to lie-down. My head is so sensitive that sometimes I can't lay my head on a pillow. I am also nauseous and extremely sensitive to light, noise and smell. I am way more fortunate that my pal as I only get them about once a month and if I take the OTC drugs and manage to sleep in a darkened room, they usually pass quite quickly. In contrast, my pal gets then multiple times a day but while his experience is very similar, he doesn't get the intense headache or nausea that I do and his is not relieved by drugs.

Life for him is far more limited by migraine than my own - but the similarity to the sensitivity experienced in ME/CFS is I think quite uncanny and even suggestive of similar neuro pathways perhaps. Of course sensitivity to light, noise, smell and touch in ME/CFS is not accompanied - normally - by sudden onset of excruciating headache although nausea might also be experienced.

It is rather weird though, don't you think? Makes me wonder why someone hasn't investigated this phenomenon and sought to determine if those neuro-pathways are indeed the same - or different.

 

In the interests of transparency (two emails sent this morning):


Subject: Re: Errors in J Eval Clin Pract. Original Paper: White PD. A perspective on causation of the chronic fatigue syndrome by considering its nosology
Date: Sun, 4 Aug 2019 10:42:53 +0100
From: Suzy Chapman
To: Dr Geoffrey Reed
CC: Dr Robert Jakob; Dr Christopher Chute; Suzy Chapman


Gentlemen,

Here we have (paper attached) the UK's Emeritus Professor Peter Denton White* erroneously asserting inter alia in the Journal of Evaluation in Clinical Practice that Per Fink's Bodily distress syndrome has been incorporated into ICD-11. The paper is based on a presentation given at a conference held in Oslo, organized by Cause Health.

*P.D.W. is a member of the Independent Medical Experts Group, which advises the UK Ministry of Defence regarding its Armed Forces Compensation Scheme. He also provides paid consultancy to a reinsurance company. He is a trustee of the Voluntary Hospital of St Bartholomew's.

Prof White's paper provides WHO, MSAC and CSAC with additional evidence of clinicians and researchers confusing and conflating ICD-11's BDD with the differently conceptualised, Fink P, Schröder A (2010) Bodily distress syndrome (BDS).

As you see, I have contacted the journal's editors, today, to discuss corrections.

I have been alerting ICD Revision, since 2014, that re-purposing a name for a new ICD-11 category that is already in use interchangeably for a divergent diagnostic construct which captures a different patient set, will result in confusion for clinicians, researchers, coders, commissioners and medical insurers, with potentially negative consequences for data analysis and for patients.

There are still no exclusions under BDD for 8E49 Postviral fatigue syndrome and its inclusions, which are particularly vulnerable to misclassification, since the Fink BDS seeks to subsume these ICD entities under a single, unifying BDS diagnostic construct [1].

Kind regards,

Suzy Chapman

1 Comparison of SSD, BDD, BDS, BSS in classification systems, July 2018
https://dxrevisionwatch.files.wordpress.com/2018/07/comparison-of-ssd-bdd-bds-bss-in-classification-systems-v1.pdf



-------- Forwarded Message --------
Subject: Re: Errors in J Eval Clin Pract. Original Paper: White PD. A perspective on causation of the chronic fatigue syndrome by considering its nosology
Date: Sun, 4 Aug 2019 09:55:54 +0100
From: Suzy Chapman
To: Lia Curtin, Editorial Assistant; Professor Andrew Miles
CC: Dr Geoffrey Reed; Dr Robert Jakob; Dr Christopher Chute; Suzy Chapman



To: Lia Curtin, Editorial Assistant; Professor Andrew Miles, Regional Editor, UK & Europe

CC: Peter Denton White, Emeritus Professor of Psychological Medicine, Wolfson Institute of Preventive Medicine, Queen Mary University of London

Dr Christopher Chute, John Hopkins, Chair, ICD-11 Medical Scientific Advisory Committee (MSAC);
Dr Robert Jakob, World Health Organization, Team Leader Classifications and Terminologies (ICD, ICF, ICHI);
Dr Geoffrey Reed, Columbia University, Senior Project Officer for development of ICD-11 Mental and Behavioural Disorders, Dept of Mental Health and Substance Abuse, World Health Organization



Dear Ms Curtin and Professor Miles,

Re: Journal of Evaluation in Clinical Practice, Version of Record online: 01 August 2019: Original Paper: White PD. A perspective on causation of the chronic fatigue syndrome by considering its nosology [1].

I write to bring to your attention errors within Professor White's paper, specifically in relation to classification and coding in ICD-10 and ICD-11.

I am taking the liberty of copying in three key members of the World Health Organization's ICD-11 development team, Drs Jakob, Reed and Chute, whom you may wish to consult.

1: The author states:

'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).24 . . . Finally, the miscellaneous chapter includes “R53.82 Chronic fatigue, unspecified,” which includes “chronic fatigue syndrome NOS,” and if a patient is of a certain age, one might even consider “R54 Senile asthenia”!'

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


This statement is incorrect.

There is no code "R53.82 Chronic fatigue, unspecified" or inclusion, "chronic fatigue syndrome NOS" within the International Classification of Diseases, 10th edition. 2016.

"R53.82 Chronic fatigue, unspecified" and its inclusion, "chronic fatigue syndrome NOS" are specific to the U.S.'s clinical modification, ICD-10-CM, which is developed and maintained by NCHS/CDC [2].

These two terms were added by NCHS to ICD-10-CM's Chapter 18: Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99) during the ICD-10-CM development and adaptation process. Neither term is coded for or indexed within the WHO's ICD-10 (which has no Tabular List four or five character codes between R53 and R54), or within ICD-11.


2: The author states:

'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 [sic] distress disorder.” Neurasthenia has been omitted.2'

which is correct, but the author goes on to state:

'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 [sic] 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.


This statement is incorrect.

The Fink P, Schröder A. (2010) diagnostic construct, "Bodily distress syndrome (BDS)" has not been incorporated into ICD-11 MMS (Mortality and Morbidity Statistics).

For the core ICD-11, WHO has approved the differently conceptualized, "Bodily distress disorder (BDD)" with three coded for severity specifiers [3][4].

Creed & Gurege [5], Gurege & Reed [6] and Per Fink [7] clarify that as defined for ICD-11, BDD is a conceptually different diagnosis: ICD-11's BDD and the Fink P, Schröder A. (2010) BDS are differently characterized, have very different disorder descriptions/criteria, and are inclusive of different patient sets.

Rather than provide clarity around ICD classification, misconceptions within this paper will add further confusion between these divergent diagnostic constructs.

I should be pleased if these errors can be discussed with the paper's author and with the WHO and addressed either in the version of the paper currently online or via corrigenda.

Sincerely,

etc.

References:

1 White PD. A perspective on causation of the chronic fatigue syndrome by considering its nosology.
J Eval Clin Pract. 2019;1–6. https://doi.org/10.1111/jep.13240

2 Centers for Disease Control, Clinical Modification (ICD-10-CM) 2020 release:
https://www.cdc.gov/nchs/icd/icd10cm.htm#FY 2020 release of ICD-10-CM

3 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

4 Fuss J, Lemay K, Stein DJ, Briken P, Jakob R, Reed GM and Kogan CS. (2019). Public stakeholders’ comments on ICD‐11 chapters related to mental and sexual health. World Psychiatry, 18: 233-235. https://onlinelibrary.wiley.com/doi/full/10.1002/wps.20635

5 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. doi: 10.3109/09540261.2012.741063

6 Gureje O, Reed GM. Bodily distress disorder in ICD-11: problems and prospects. World Psychiatry. 2016 Oct;15(3):291-292. doi: 10.1002/wps.20353

7 Syndromes of bodily distress or functional somatic syndromes - Where are we heading. Lecture on the occasion of receiving the Alison Creed award 2017, Fink, Per. Journal of Psychosomatic Research, Volume 97, 127 - 130 https://www.jpsychores.com/article/S0022-3999(17)30445-2/fulltext Lecture slides: http://www.eapm2017.com/images/site/abstracts/PLENARY_Prof_FINK.pdf

-------------------

I will return with any updates to the above correspondence, but am otherwise back in retirement.

Edited to add:

Among the list of around 50 international Collaborators in Cause Health are:

Andrew Miles MSc MPhil PhD DSc (hc) is Senior Vice President and Secretary General of the European Society for Person Centered Healthcare. He is Editor-in-Chief of the European Journal of Person Centered Healthcare and Editor-in-Chief of the Journal of Evaluation in Clinical Practice* and based at the European Society for Person Centered Healthcare (ESPCH) Headquarters, Medical School, Francisco de Vitoria University, Madrid.

(I was passed on by Andrew Miles to the new Editor-in-Chief of the Journal of Evaluation in Clinical Practice, who is dealing with this issue.)

Another collaborator is Henrik Vogt, whom some of you may be familiar with from Twitter: @HenrikVogt

Henrik Vogt is a Medical Doctor and PhD Candidate at the General Practice Research Unit at the Norwegian University of Science and Technology. He also has a Cand. Mag degree from the University of Oslo, involving the History of Science and professionalism. Henrik is interested in generalism in Medicine, the Sciences-Humanities relationship, medically unexplained symptoms, the (causal) relationship between “mind” and “body”, determinism and medicalisation. Henrik´s current PhD Project is called “Systems medicine as a theoretical foundation for primary care – a critical investigation”, and investigates systems medicine as an envisioned paradigm for health care from the perspective of generalistic and humanistic medicine.

 

The impact on the satisfaction of human needs in ME & CFS is often worse than the comparison illnesses, hence a deeper examination is needed before forming any conclusions about the degree of causation and 'expected' impact.

 

I was curious about the so-called "international criteria for chronic fatigue syndrome" mentioned in the PACE trial abstract.

Since the PACE trial was published in 2011, it seems unlikely that the "international criteria" it mentions are the International Consensus Criteria (ICC), which was published a year later, in 2012.

I'm guessing, but I think the "international criteria" referred to is actually to be found in this paper published in 2003 called:

"Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution," which was the work of the "International Chronic Fatigue Syndrome Study Group."

This was an attempt to introduce standard measurements, exclusions, evaluations, etc. to the 1994 Fukuda definition. Drs. Unger and Reeves of the CDC were involved, along with Peter White and others.


If there is some other CFS definition known simply as "international criteria," I haven't been able to find it.

 

yes; it gets used here also
https://www.s4me.info/threads/fatig...sandler-c-llloyd-a-barry-b.10588/#post-187586

not the ICC but
8. Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med. 1994;121(12):953–9.

 

I've edited the following into my post above, but I am also posting it separately below:

Among the list of around 50 international Collaborators in Cause Health are:

Andrew Miles MSc MPhil PhD DSc (hc) is Senior Vice President and Secretary General of the European Society for Person Centered Healthcare. He is Editor-in-Chief of the European Journal of Person Centered Healthcare and Editor-in-Chief of the Journal of Evaluation in Clinical Practice* and based at the European Society for Person Centered Healthcare (ESPCH) Headquarters, Medical School, Francisco de Vitoria University, Madrid.

*I was passed on by Andrew Miles to the new Editor-in-Chief of the Journal of Evaluation in Clinical Practice, who is dealing with this issue.

Another collaborator is Henrik Vogt, whom some of you may be familiar with from Twitter: @HenrikVogt

Henrik Vogt is a Medical Doctor and PhD Candidate at the General Practice Research Unit at the Norwegian University of Science and Technology. He also has a Cand. Mag degree from the University of Oslo, involving the History of Science and professionalism. Henrik is interested in generalism in Medicine, the Sciences-Humanities relationship, medically unexplained symptoms, the (causal) relationship between “mind” and “body”, determinism and medicalisation. Henrik´s current PhD Project is called “Systems medicine as a theoretical foundation for primary care – a critical investigation”, and investigates systems medicine as an envisioned paradigm for health care from the perspective of generalistic and humanistic medicine.

 

Cause health are big on some fancy philosophising leading to some complex sounding theorising on illness. I see a few problems.

They can theorise all they want at the end of the day what the ill person wants is a cure or a treatment that is effective. The needs of the patient are pragmatic and no amount of pretty theory matters if it is not useful to that end.

Also, the BPS make such an almighty great deal about holism. Yet the only thing they have on offer reflects their belief in the psychology of a thing. They may now (because they have to) give a nod and a wink to the biology as a 'catalyst' perhaps is a good word but we are still left with psychology as pre-eminent in the maintenance of illness.

Where is the concern for environmental factors for example? Social factors that our elected government could mitigate with adequate concern for minimum standards that would reflect human dignity?

I feel there are in fact legitimate concerns to consider in the psycho-social area with regard to illness. But those issues aren't found in the twisted ideology of CauseHealth. They take no care at all to investigate and examine or consider anything outside their narrow context of 'we've got the solution' therefore the problem is X (your thinking is faulty).

 

EDITORIAL ARTICLE
Interactions between persons—Knowledge, decision making, and the co‐production of practice
Michael Loughlin PhD
Stephen Buetow PhD
Michael Cournoyea PhD
Samantha Marie Copeland PhD
Benjamin Chin‐Yee MD, MA
K.W.M. Fulford PhD
First published: 16 November 2019
https://doi.org/10.1111/jep.13297
https://onlinelibrary.wiley.com/doi/abs/10.1111/jep.13297. This

 

I think it was that he retired from answering freedom of information requests.

(My recollection is that at the time FOI requests re PACE were being denied on the grounds that because of White’s retirement there was no one able to access the data whilst he was also being listed as heading up the ten year (?) follow up of the PACE subjects. And of course he was continuing to present to insurance companies.)