Parliamentary Question: WHO classification of ME/CFS, 16 February 2011

Ian Swales, Lib Dem MP for Redcar, tabled a question about the accuracy of the WHO classification for ME/CFS which was contained in the reply given by Minister for Health Care Services Paul Burstow to his Private Member’s Debate in Westminster Hall on 2 February 2011.

Mr Swales asked the Secretary of State for Health pursuant to the Minister of State’s contribution on 4 February 2011 [sic], Official Report, column 327WH, on Myalgic Encephalomyelitis, what recent representations his Department has received on the definition of CFS/ME.

In a written reply on 16 February, Mr Burstow replied:

The Department has received, and continues to receive, a large volume of correspondence from stakeholders, and those living with this condition, on the definition and naming of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

During the Westminster Hall debate, on 4 February 2011, I said that the World Health Organisation uses the composite term CFS/ME for this condition. This was incorrect.

The World Health Organisation classes benign myalgic encephalomyelitis and post viral fatigue syndrome under the same classification G93.3 ‘diseases of the nervous system’; subheading ‘other disorders of the brain’.

The report of the CFS/ME Working Group to-the Chief Medical Officer, in January in 2002, suggested that the composite term CFS/ME be used as an umbrella term for this condition, or spectrum of disease. This term is also used by the National Institute for Health and Clinical Excellence for their clinical guidelines.

We do, however, intend to seek further advice on our classification and will update the hon. Member in due course.

The video of the debate is still available at https://meassociation.org.uk/?p=4209  and the Hansard transcript can be found at https://meassociation.org.uk/?p=4264

11 thoughts on “Parliamentary Question: WHO classification of ME/CFS, 16 February 2011”

  1. Please see the comment by “meagenda” on existing ICD-10 codings and proposed ICD-11 codings to this ME Association post:

    https://meassociation.org.uk/?p=4592

    Some additional information on ICD-10 and ICD-11:

    According to a February 2009 response from Dr Robert Jakob, WHO HQ, Classifications, Terminology and Standards Team, terms that are listed in the ICD-10 Index may be:

    ”a synonym to the label (title) of a category of ICD;
    a sub-entity to the disease in the title of a category;
    or a “best coding guess”.

    ICD-10 does not specify whether, in indexing Chronic fatigue syndrome at G93.3, it views the term as a Synonym to Postviral fatigue syndrome or to Benign myalgic encephalomyelitis or some other relationship.

    Nor does ICD-10 specify how it views the relationship between Postviral fatigue syndrome and Benign myalgic encephalomyelitis.

    But for ICD-11, the relationships between terms are proposed to be specified.

    How does ICD-11 define “Synonyms” and “Inclusions”?

    http://apps.who.int/classifications/apps/icd/icatfiles/iCAT_Glossary.html

    “5. Synonyms
    Details: Synonyms are alternative names for the same underlying concept, including common terms and medical jargon. Synonyms are not intended to be used interchangeably with the concept title, but help users to locate the proper code within the ICD. The concept title will have precedence over synonyms for international reporting. New synonyms may be proposed on the iCAT platform.

    6. Inclusions
    Details: Inclusion terms appear in the tabular list of the traditional print version and show users that entities are included in the relevant concept. All of the ICD-10 inclusion terms have been imported and accessible in the iCat. These are either synonyms of the category titles or subclasses which are not represented in the classification hierarchy. Since we have synonyms as a separate entity in our ICD-11 content model, the new synonyms suggested by the users should go into the synonyms section. In the future, iCat will provide a mechanism to identify whether an inclusion is a synonym or a subclass.”

    As the iCAT drafting platform stood at November, (B)ME is specified as an Inclusion to Chronic fatigue syndrome.

    It isn’t possible to determine from the information visible in November, whether PVFS, CFS and (B)ME will retain the G93.3 code.

    The reason being, that it is proposed that the ICD-10 parent category “G93: Other disorders of brain” is removed. The removal of the parent G93 Other disorders of brain will affect other categories that had been classified in ICD-10 as children to G93, not just G93.3.

    The iCAT “Discussion Note” for Gj92 Chronic fatigue syndrome records a “Change in hierarchy for class: G93.3 Postviral fatigue syndrome” because its parent category (G93 Other disorders of brain) is removed.

    what can be inferred, is that for ICD-11, Chronic fatigue syndrome has been proposed to be classified under

    Chapter 6: Diseases of the Nervous System (the Neurological chapter)

    that the old ICD-10 codings between G83.9 and G99.8 are being reorganised and are assigned the labels GA thru GN.

    (Some of these are parent categories with child or grandchildren classes.)

    That under the parent class

    GN: Other disorders of the nervous system

    sits child

    Gj92 Chronic fatigue syndrome (note: Gj92 is a “Sorting label” not the ICD code)

    Gj92 Chronic fatigue syndrome is listed as an ICD Title with a Definition, but other content fields have yet to have text entered.

    Benign Myalgic encephalomyelitis is specified as an Inclusion term to Gj92 Chronic fatigue syndrome

    but no ICD-11 specifier of the relationships between the three terms had been entered in November, beyond which I have had no further access to the iCAT.

    With regard to Exclusions:

    Postviral fatigue syndrome G93.3 -> Gj92 Chronic fatigue syndrome is specified as an Exclusion to Chapter 18, R53 Malaise and Fatigue.

    Postviral fatigue syndrome G93.3 -> Gj92 Chronic fatigue syndrome is specified as an Exclusion to Chapter 5, F48.0 Neurasthenia.

    A final point on ICD-11:

    In ICD-10, there is no textual content for the three terms “Postviral fatigue syndrome”, “Benign myalgic encephalomyelitis” and “Chronic fatigue syndrome”. There are no definitions, criteria or descriptions and the relationship between the three terms is not specified in ICD-10: Volume 1: The Tabular List, nor in any of the other two volumes of ICD-10.

    In ICD-11, there is the potential for considerably more textual content. Categories will be defined through the use of multiple parameters: Title, Definition, Terms: Synonyms, Inclusions, Exclusions, Clinical Description, Signs and Symptoms, Diagnostic Criteria and so on, according to a common “Content Model”.

    See this post on my DSM-5 and ICD-11 Watch site for screenshots showing the extent of category description fields:

    PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform: http://wp.me/pKrrB-KK

    particularly the screenshots for:

    “Details for Gj92 Chronic fatigue syndrome” for which the file URLs are:

    http://dsm5watch.files.wordpress.com/2010/05/2icatgj92cfsdef.png?w=771&h=525

    and

    http://dsm5watch.files.wordpress.com/2010/05/2icatgj92cfsterms.png?w=771&h=522

  2. christine standing

    Do I understand correctly that Benign Myalgic encephalomyelitis is now specified as an Inclusion term to Gj92 Chronic fatigue syndrome ie it is a subsidiary term? “Benign myalgic encephalomyelitis currently appears listed under Inclusions to Gj92 Chronic fatigue syndrome.” Then, “I provide no screenshots for Benign myalgic encephalomyelitis or Postviral fatigue syndrome because these are not listed in the ICD Categories List” and where “External Definitions for Gj92 Chronic fatigue syndrome” is “Also known as myalgic encephalomyelitis.”

    This, if I understand correctly, is a reversal of previous thinking (where ME is classed as a neurological illness as opposed to CFS, which was thought of as a dustbin diagnosis.)

    Second, Chronic Fatigue Syndrome Gj92 is defined “after excluding other medical or psychiatric conditions which may lead to fatigue”. Surely, the interventions of psychiatrists to ‘test’ their theoretical diagnoses, is exactly what has been the problem for the likes of Sophia Mirza and Ean Proctor. Surely, we are trying to get away from such outlandish abuse? How would such a psychiatrist ‘exclude’ another Sophia Mirza? The psychiatric profession has yet to justify their treatment of these unfortunates. What empirical method did they apply in order to get it so wrong? Until psychiatrists deal with this question, this definition is unsafe.

    As a psychotherapist, (retired) we were trained to never assume a psychiatric diagnosis until we had ruled out the physical. A neurological disease is physical.

    1. Second, Chronic Fatigue Syndrome Gj92 is defined “after excluding other medical or psychiatric conditions which may lead to fatigue”. Surely, the interventions of psychiatrists to ‘test’ their theoretical diagnoses, is exactly what has been the problem for the likes of Sophia Mirza and Ean Proctor. Surely, we are trying to get away from such outlandish abuse? How would such a psychiatrist ‘exclude’ another Sophia Mirza?

      As I posted on the related thread: https://meassociation.org.uk/?p=4592

      Classification is not Diagnosis

      Whether detailed diagnostic criteria will ever be attached to a future WHO classification of M.E, CFS et al is a matter of conjecture, but we should not confuse the process of Classification (a bureacratic process) with the clincal process of Diagnosis.

      There are problems with both Classification and Diagnosis – but they are not the same problems and the dialogues required to address the respective problems may differ greatly in each case.

      IVI

  3. According to the NHS via NICE, I am suffering ‘a chronic neurological disease’ and my label has been for 10 years CFS.

    Prior to that it was ME, but that was not preferred by doctors because they felt uncomfortable with the terminology.

    I don’t begin to understand the depth of this discussion, or the similar one on the other Thread, but I know my label – like that of those in the USA is CFS.

    I know this. It is a label. And as label’s go – it sucks!

  4. To Christine Standing:

    As noted in my post and on my site, the proposals as they stood in the iCAT, at November 2010, were:

    That some Chapter 6 categories are undergoing re-organization and have been assigned the labels GA thru GN.

    That it is proposed that the parent class G93 is removed.

    That there is a change of hierarchy for Postviral fatigue syndrome because it is proposed that the parent class G93 is removed.

    That “Gj92” is a “Sorting label” not the ICD code.

    That Gj92 Chronic fatigue syndrome is listed as an ICD Title with a Definition, but that other content fields had yet to have text entered.

    That Benign myalgic encephalomyelitis is specified as an Inclusion term to Gj92 Chronic fatigue syndrome.

    But that no ICD-11 specifier of the relationships between the three terms had been entered in November, beyond which I have had no further access to the iCAT.

    So until the ICD-11 Beta Draft is released, it is not possible to answer your question because the relationships between the three terms has yet to specified and this goes for many other categories.

    The iCAT Alpha is a “work in progress” and the information I have published is based on the iCAT as it stood, last November.

    In late June, last year, I approached the chair of the ICD Revision Topic Advisory Group for Neurology (Dr Raad Shakir) for clarification of the current proposed relationships between the three terms since the iCAT does not list all terms and since the fields which specify relationships was not at that point functional.

    I have thus far been unable to extract a clarification from Dr Shakir.

    As far as the Definition is concerned, a number of definitions were imported and entered into the iCAT as part of the Alpha Draft “Start-up” process. These were imported from other classification systems.

    The Definition entered in the Definition field is a proposal and may be subject to revision. When the Beta Draft is released, there will be a process for public scrutiny and input.

    I am sorry I cannot be more specific, but the Alpha Draft is a work in progress. The Beta Draft is scheduled for May 2011.

  5. To In Vitro Infidelium

    You may be interested in this ICD-11 document:

    Content Model Specifications and User Guide (v December 10)

    Identifies the basic properties needed to define any ICD concept (unit, entity or category) through the use of multiple parameters.

    http://sites.google.com/site/icd11revision/home/documents/ContentModelReferenceGuideDecember2010.doc?attredirects=0&d=1

    I can provide a copy if you are unable to download this from the ICD Revision Google site:

    http://sites.google.com/site/icd11revision/home/documents

  6. I think Mr Swales has misunderstood the content of Mr Burstow’s clarification:

    http://ianswales.com/en/article/2011/455560/swales-wins-battle-with-government-on-me

    Swales wins battle with Government on ME

    February 17, 2011 3:45 PM

    Ian Swales MP’s fight for better treatment of myalgic encephalomyelitis (ME) continues as he succeeds in getting the Government to recognise ME and Chronic Fatigue Syndrome (CFS) as different illnesses.

    During Ian’s recent parliamentary debate on ME he argued that the Government needs to distinguish between Chronic Fatigue Syndrome and ME to provide better treatment for the different illnesses.

    However, Health Minister Paul Burstow MP responded by saying that the World Health Organisation classifies Chronic Fatigue Syndrome and ME as the same illness.

    Following an outcry from the ME community about this statement, Ian challenged the Minister on his definition of CFS/ME. The Minister admitted that the definition he used in the debate was “incorrect”.

    Commenting, Ian Swales MP said:

    “I am pleased that the Government has now recognised that ME and Chronic Fatigue Syndrome are two different illnesses.

    “After the debate I received a lot of correspondence from the ME community about the Government’s definition of CFS/ME, so after doing some more research on the matter I decided it was right to clarify this point with the Minister. I know they will be reassured by this news.

    “I hope that approaching ME as a distinct condition will help lead to better, more effective treatment for sufferers through better analysis of their possible different causes and symptoms.”

    ————

    But Mr Burstow’s reply had been:

    “In a written reply on 16 February, Mr Burstow replied:

    The Department has received, and continues to receive, a large volume of correspondence from stakeholders, and those living with this condition, on the definition and naming of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

    During the Westminster Hall debate, on 4 February 2011, I said that the World Health Organisation uses the composite term CFS/ME for this condition. This was incorrect.

    The World Health Organisation classes benign myalgic encephalomyelitis and post viral fatigue syndrome under the same classification G93.3 ‘diseases of the nervous system’; subheading ‘other disorders of the brain’.

    The report of the CFS/ME Working Group to-the Chief Medical Officer, in January in 2002, suggested that the composite term CFS/ME be used as an umbrella term for this condition, or spectrum of disease. This term is also used by the National Institute for Health and Clinical Excellence for their clinical guidelines.

    We do, however, intend to seek further advice on our classification and will update the hon. Member in due course.”

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