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

I would currently recommend the NICE guidelines as being the most useful, since the NICE diagnosis requires only one additional symptom beyond post‐exertional fatigue.12
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Wow. They are specifically undergoing forced review because of how bad they are, leading to abysmal quality of life, systemic discrimination and misinformation.
 
Snow Leopard said:
Yet White and colleagues have published much literature claiming just that - psychological associations in non-prospective studies theorised as predisposing factors.
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Memory is hazy but Wessely strongly argued many times that strength of belief was THE only predicting factor.

Which is entirely backwards. Sick people do think of themselves as sick and sicker people do think themselves as sicker. This is entirely expected and actually supports the fact that patients are actually good witnesses to their own bodily experience.

Their argument makes as much sense as arguing that since poor people describe themselves as poor then it must be why they are poor. Completely twisted and incompetent illogic.
 
Dx Revision Watch said:
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.

--------------------------
Click to expand...
Thank you for being relentless in countering disinformation.
 
Russell Fleming said:
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
Click to expand...

Hi, Do you have a link to full paper, Russell? Thanks.
 
An explanation could be that the effects of having either the diagnosis or the illness itself may cause a secondary depressive illness, but studies finding that depressive illness is more commonly associated with CFS than with other chronic disabling conditions speak to this not being a total explanation.
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Another explanation could likely be there are two fundamental causes for comorbid depression in pwME, rather than just one:
  • The debilitating impact of the illness itself on many areas of a person's life, same as for many other illnesses.
  • The eternal uphill struggle of fighting against against embedded disbelief within the medical profession and society. That alone could lead to significant depressive symptoms.
The second point above should be very seriously considered.

I wonder if:
  • PDW has considered the above?
  • Which "other chronic disabling conditions" he is referring to? Does the list include ones dismissed similarly by the medical profession?
  • Any studies have been done of depression in patients with other illnesses, where they also are treated so dismissively by the medical profession?
  • Any studies have been done on prisoners jailed for long periods and subsequently proven innocent, especially ones with no previous history of depression? i.e. People similarly unjustly disbelieved, and the very particular mental anguish that ongoing unjust treatment loads onto people.
 
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Nasim Marie Jafry said:
Hi, Do you have a link to full paper, Russell? Thanks.
Click to expand...

Hi Nasim,

I don't I'm afraid. Couldn't find it. Must be somewhere...?

This later website blog from the MEA in 2011 says I think that is should be in: Report from The National Task Force on Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Myalgic Encephalomyelitis (ME). Westcare, 1994. pp. 96-98.

But I'm not sure if it made publication elsewhere. I will however update the 2006 blog entry to reflect the above.
 
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Russell Fleming said:
Hi Nasim,

I don't I'm afraid. Couldn't find it. Must be somewhere...?

This later website blog from the MEA in 2011 says I think that is should be in: Report from The National Task Force on Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Myalgic Encephalomyelitis (ME). Westcare, 1994. pp. 96-98.

But I'm not sure if it made publication elsewhere. I will however update the 2006 blog entry to reflect the above.
Click to expand...
I'm not sure I would do that. Ellen Goudsmit says that the Task Force report published a wrong version of the London criteria.
 
Michiel Tack said:
Not a mention of his deconditioning hypothesis. He seems to have changed to central sensitization as so many proponents of GET (such as Lloyd en Nijs).

Bit embarrassing those mistakes about ICD-10, for someone with that many years of experience...
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I'm a bit cynical about why Peter White might write this now. Could it have been influenced at all by the work he does for insurance companies? Here's something written up following a presentation he gave:
A final point specific to claims assessment, and a question we’re often asked, is whether CFS would fall within a mental health exclusion, if one applies to a policy. The answer to this lies within the precise exclusion wording. If the policy refers to functional somatic syndromes in addition to mental health, then CFS may fall within the exclusion. If the policy doesn’t refer to functional somatic syndromes as well as mental health then it would be difficult to apply. The point made is that a diagnosis of Myalgic Encephalomyelitis or ME (a term often used colloquially instead of CFS) is considered a neurological condition according to the arrangement of the International Classification of Diseases (ICD) diagnostic codes whereas CFS can alternatively be defined as neurasthenia which is in the mental health chapter of ICD10.
Click to expand...
See the attachment for the context.
 

Attachments

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Russell Fleming said:
Hi Nasim,

I don't I'm afraid. Couldn't find it. Must be somewhere...?

This later website blog from the MEA in 2011 says I think that is should be in: Report from The National Task Force on Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Myalgic Encephalomyelitis (ME). Westcare, 1994. pp. 96-98.

But I'm not sure if it made publication elsewhere. I will however update the 2006 blog entry to reflect the above.
Click to expand...


Thanks, Russell, for getting back - but I meant the new Peter White paper, but have now read it, thank you! Sorry for confusion.

(Though I should say I have always been confused by London Criteria, did they just build on Ramsay? No need to answer, thinking aloud.)
 
Trish said:
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.
Click to expand...

Agree, Trish, having read his paper now, is just same old same old. Doesn't have a clue:

'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'.

He knows the PACE trial is dead in water so is trying to appear reasonable, and distance himself from harms done, that is my opinion. To endorse NICE, is hard to even believe he did, and also that he failed to mention it is being overhauled cos it is, well, crap.

He did mention SEID was useless, so that is interesting. I know my online friends w ME in USA are really concerned about SEID.
 
In light of his Lazarus-like resurrection from retirement, I'm wondering whether White's apparently renewed relationship with QMUL might have implications with respect to a prior FOIA case, where the Information Commissioner was told that data could not be accessed because he was the only person with the codes to unlock it.
On the face of it, that excuse now seems to lack any credibility and they could be held in contempt.
 
large donner said:
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.
Click to expand...

From the article we're discussing:
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
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Reference #54, quoting his earlier work:
White PD, Rickards H, Zeman AZJ. Time to end the distinction
between mental and neurological illnesses. BMJ. 2012;344(may24 1):
e3454.
Full text (PDF): http://sci-hub.tw/10.1136/bmj.e3454

The current line of
demarcation between disorders of mind and of brain is
counterproductive for clinicians and patients on both sides of
the line. We propose, therefore, that psychiatric disorders should
be reclassified as disorders of the (central) nervous system.
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:emoji_warning:Well that's interesting!

These must be the biomarkers that appear in mental disorders that PDW was referring to:
Biological research into mental disorders has been transformed
by advances in structural and functional brain imaging,
neuropharmacology, and genetics.5 Meta-analyses have shown
that structural brain abnormalities are present in schizophrenia,6 7
bipolar affective disorder,7 8 recurrent depressive disorder,9
post-traumatic stress disorder,10 and obsessive compulsive
disorder.11 Functional brain imaging has shown that both normal
and abnormal emotions have neural representations.12
Meta-analyses show altered activation in the limbic and related
brain systems in depression13 and bipolar disorder.w1 We can
now visualise the altered brain activity associated with
hallucinations.14 Even conversion disorders are associated with
brain activation that differs from that induced by simulationw2
and may be related to dominant emotional circuits.w3

Recent research has begun to delineate the genetic architecture
of these disorders, implicating allelic variants,15 copy number
variants,w4 gene-gene and gene-environmental interactions,w5
and epigenetic features.w6 Imaging genetics has linked specific
brain activations with genetic variations.w7 Some of these
findings imply that our current taxonomy of psychiatric disorders
will require revision.15 w4
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I think there is a need to debate 'neurological' and 'mental' because the latter should I feel slide into the former regardless of our discussions around ME/CFS. 'Mental' is something I don't think anyone really feels is constructive, useful or fair.

But then they've been talking about merging 'psychiatry' and 'neurology' for a long time and we're still no closer. I'm not sure where it might leave psychology as a profession - maybe psychology is positioned correctly at present e.g. to be used in regard to all health problems working alongside specific disciplines that are relevant to the disease and who provide the primary tests and treatments etc.

Perhaps we should talk in terms of 'behavioural' and 'neurological' etc. but then arguably all disease has an impact on or leads to changes in, behaviour - just as it might be argued they do on 'mental' health if we use the current favoured terminology.

And science might reveal in ME/CFS that whatever disease processes are occurring in the various sub-groups, they actually do have a biological effect on what is currently considered 'mental health' and/or behaviour as well as an effect on e.g. other brain function, the immune system, CNS, energy metabolism, etc. Let's not forget the 'sickness response' research and theories.

But, if White and colleagues are arguing ME/CFS should be considered - in the absence of biomarkers etc. - both neurological and mental (and I'm not sure that they are in truth) then the same should also apply to other diseases.

When talk turns to 'treating the whole person and not just the disease' it's where I get even more concerned. It sounds better when there is an actual understanding of the disease and specific treatments, but in the absence of both, psychology (and psychiatry) arguably dominate and therapeutic approaches reign.

Approaches that either lack fundamental scientific credibility, or appear to possess a very weak evidence base and persist solely because they are cheap or because the medical profession has nothing else to offer.
 
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Barry said:
Another explanation could likely be there are two fundamental causes for comorbid depression in pwME, rather than just one:
  • The debilitating impact of the illness itself on many areas of a person's life, same as for many other illnesses.
  • The eternal uphill struggle of fighting against against embedded disbelief within the medical profession and society. That alone could lead to significant depressive symptoms.
Click to expand...
More than a little ironic that the profession charged with understanding the psycho-social aspect of health and informing the rest of us about it and how to manage it, are the very ones who either fail to understand it or actively use that understanding to obfuscate and delay proper understanding, and impose major additional psycho-social burdens on already very sick patients.

There is a whole career's worth of material here for aspiring ethicists and medical historians.
 
I propose a thought experiment.

What would have happened if White et al had fallen upon the symptom of chronic headaches and proposed the diagnostic entity of chronic headache syndrome (CHS)? The Oxford criteria for CHS would be the presence of chronic headaches for six months or more, and they researched the use of behavioural/psychological interventions, CBT and GET, using experimental design designed to confirm the researchers expectations that their approach is an effective treatment for CHS.
 
Peter Trewhitt said:
I propose a thought experiment.

What would have happened if White et al had fallen upon the symptom of chronic headaches and proposed the diagnostic entity of chronic headache syndrome (CHS)? The Oxford criteria for CHS would be the presence of chronic headaches for six months or more, and they researched the use of behavioural/psychological interventions, CBT and GET, using experimental design designed to confirm the researchers expectations that their approach is an effective treatment for CHS.
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People would have died.
That's the main difference that accounts for where we are. Not enough people have died with ME being on death certificate.
 
Russell Fleming said:
they've been talking about merging 'psychiatry' and 'neurology' for a long time
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they sort of have already with 'Psychoneuroimmunology'. See Carmine Pariante. Gabrielle Murphy is a 'big fan'; see her talk (transcript) here
https://www.s4me.info/threads/speec...rence-2014-gabrielle-murphy.7597/#post-142867


Dolphin said:
I'm a bit cynical about why Peter White might write this now.
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maybe because the results of this review on MUS is due to come out soon

https://www.s4me.info/threads/medic...n-sutton-p-white-moss-moriss-buszewicz.10533/
 
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Sean said:
More than a little ironic that the profession charged with understanding the psycho-social aspect of health and informing the rest of us about it and how to manage it, are the very ones who either fail to understand it or actively use that understanding to obfuscate and delay proper understanding, and impose major additional psycho-social burdens on already very sick patients.
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That is a very good point, and begs a very important question: Given who PDW is, and his professional qualifications and experience, how could he possibly have overlooked the possibility that any additional depression prevalence in pwME could be due to the medical profession's behaviour towards them, and the despair that brings with it? Which brings me to wonder if he overlooked it at all? In which case, why omit to identify it in his paper, at least as a possibility? The latter is a rhetorical question of course, because we all know why he would choose not to. I find it beyond belief that he would not fully appreciate and understand this, and that he could not possibly have overlooked the thought at least, when writing his paper.
 
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