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Valerie Smith on 'ME/CFS is an organic disease'

Discussion in 'General ME/CFS News' started by Countrygirl, Feb 28, 2014.

  1. Firestormm

    Firestormm Guest

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    I been editing Bob. Will return tomorrow but hopefully we will have been joined by someone who can correct me if I have strayed from the path of law and its interpretation. I would never have made a lawyer :)
  2. N.A.Wright

    N.A.Wright Guest

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    One of the key points that Valerie Elliot Smith makes is that ME is 'peripheral' to the legal findings:

    - The comments made by the various judges about the nature of ME/CFS as a condition are therefore peripheral (“obiter”, in legalese), not central, to the issues.
    - Those comments are not legally binding, nor are they medically significant. They were made purely in the context of deciding this case on its particular facts.


    Not only was ME not central to the legal decisions, by the time the case got to the Lords, Page's illness had been applied multiple terms - from http://www.bailii.org/uk/cases/UKHL/1995/7.html

    However, the plaintiff had for a very long time been suffering from a condition variously described as myalgicencephalomyelitis (ME), or chronic fatigue syndrome (CFS) or post viral fatigue syndrome (PVFS), which had manifested itself from time to time with different degrees of severity.

    There's probably a moral in all this - something along the lines of don't try interpreting the law without having a lawyer on hand.

    A publicly available commentary can be found here: http://ssudl.solent.ac.uk/956/1/1998_2_1.pdf
    Last edited: Mar 11, 2014
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    As I am neither a lawyer nor a paralegal, I prefer not to comment on the Page v Smith case or on Prof Hooper's comments in relation to this case, but I would like to add the following.

    Let's throw some logic at this:

    In his commentary of February 27, Prof Hooper has stated:

    '...it is encouraging to note that on 12th February 2014 the WHO publicly confirmed that: “Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11”'

    To the best on my knowledge and according to my extensive researches, the only recent public comment made in respect of the classification of ME/CFS for ICD-11 in relation to Chapter 05 Mental and behavioural disorders are the replies left on the WHO's Twitter account, by an unidentified WHO Twitter account admin, in response to several members of the public.

    It is not yet established on whose authority those replies were made, that is, whether the (unnamed) WHO Twitter admin made these responses in their own name or whether they were made on the authority of WHO HQ, Geneva, and if so, on whose authority (for example, some stand alone WHO tweets are posted as statements attributable to M Chan (Dr Margaret Chan).

    It remains unknown then, who is responsible for this position and its conveyance to several members of the public: has it come from a senior WHO staffer; or the Chair of the Revision Steering Group (RSG) that is responsible for the development of ICD-11; or the Chair of the ICD Revision Topic Advisory Group (TAG) for Neurology; or the Managing editor for TAG Neurology; or the Chair of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural disorders; or the Project Manager for the revision of the Mental and behavioural disorders chapter, who also has some responsibility for Chapter 07 since some categories straddle both chapters?

    Unless and until these Twitter replies have been ratified via a formal, signed WHO statement of clarification that is placed in the public domain or which can be made public (as has been requested), I regard them as informal, unauthorized responses on a social media platform, and not official WHO position statements.

    Prof Hooper goes on to state:

    "...and that this has been accepted by the UK Parliamentary Under-Secretary of State for Health (Jane Ellison MP)..."

    Can we safely assume that?

    Thus far, there has been no clarification forthcoming from the Parliamentary Office of Jane Ellison MP for the source on which she based her Oral Answer to Annette Brooke MP, on February 25.

    Annette Brooke is my MP. I have asked Annette what was Jane Ellison's source and Annette says she does not know, and neither does AfME's Sonya Chawdhury have this information.

    I have a formal request for information on government departments and Ministers [Case ref: DE00000844965] submitted online to the DoH for the source of the public statement that informed Ms Ellison's Oral Answer, which is due for fulfillment on or before March 18.

    Until the source of the public statement on which Ms Ellison relied to inform her Oral Answer has been confirmed and a copy obtained for comparison, I consider that it cannot safely be assumed that Ms Ellison has relied on the unsigned responses provided by an unnamed WHO Twitter admin, on a social media platform, between February 12-14.

    Prof Hooper further states:

    '...who, on 25th February 2014 stated on the record: “The World Health Organisation is currently developing the 11th version of the International Classification of Diseases, which it aims to publish in 2017. No discussions have taken place between the Department and the WHO on the reclassification of ME/CFS, but the WHO has publicly stated that there is no proposal to reclassify ME/CFS in ICD-11”.'

    "but the WHO has publicly stated that there is no proposal to reclassify ME/CFS in ICD-11”.

    No WHO hasn't said this.

    Not if Ms Ellison has relied solely on the unsigned tweets by an unnamed WHO Twitter admin to several members of the public, between February 12-14.


    The tweet by WHO of February 12 does not state, “…there is no proposal to reclassify ME/CFS in ICD-11.”

    It states only that there is no proposal to include ME/CFS as Mental and behavioural disorders in ICD-11.

    It does not confirm an intention to retain PVFS, ME and CFS within Chapter 07.

    It does not deny any proposal for coding one or more of these terms under dual parent classes (which is allowable for ICD-11 and many categories are already assigned to dual parents or to dual chapters) or for coding to dual parent classes under more than one chapter, other than Chapter 05 - which may or may not include retention in Chapter 07 Diseases of the nervous system.

    Those WHO Twitter replies leave the door open, theoretically, for coding these three terms under chapters like Chapter 19 Symptoms and signs.

    Or for coding dual coding under both Chapter 07 and Chapter 19 or another chapter.

    Note that I am not saying that this is ICD-11's intention, but since the three terms are currently absent from the public version of the Beta draft, and since I have no privileged information about ICD-11's intentions and since WHO/ICD Revision will not respond to my requests for clarifications, it cannot be deduced from the Beta draft alone or from what was said by an unnamed, unsigned response on a social media platform that the intention is to retain all three terms within Chapter 07.

    There is also the issue of the potential for multiple parentage for multi-system disorders. The ICD Revision proposal of 2010 for a potential new Multi-System Disorders chapter has been rejected in favour of a proposal to classify some diseases and disorders across two or more chapters [1]. So again, in theory, the intention could be to assign multiple parent classes in chapters other than Chapter 05.

    The responses do not provide any explanation for the year long absence of these three ICD-10 terms from the ICD-11 Beta draft. They do not set out proposals for hierarchies, that is, which term(s) are proposed to be assigned ICD Title codes and given Definitions and various other “Content Model” descriptors, and which are proposed to appear listed only as Inclusion terms or under Synonyms to ICD Title codes. They do not clarify the proposed content of Long or Short “Content Model” Definitions.

    So, until WHO/ICD Revision is prepared to be transparent about its intentions for these three terms, which, until early 2013, were displaying in the Beta draft, and provides a public, official clarification of intention and reason(s) for current absence, then the tweets of February 12-14 and Ms Ellison's reference to public statements for which she gives no source and for which no source has been given in Hansard, ain't worth tuppence.

    And I really wish folk would slow down and scrutinize what is actually being said and demand sources for all statements, whether these come from organizations, parliamentarians, journalists or advocates.


    [1] http://dxrevisionwatch.files.wordpress.com/2010/1/considerations20on20multisystem_diseases_201008181.doc

    White Paper: Multisystem Disorders Aymé, Chalmers, Chute, Jakob

    This ICD-11 RSG document discusses the outcomes of discussions around the potential for a Multisystem Disorder chapter or otherwise accommodating multisystemic disorders within ICD-11:

    http://informatics.mayo.edu/WHO/ICD11/collaboratory/attachment /208/19.Multisystem_Diseases_Chapter.v1.2.docx
    Last edited: Mar 11, 2014
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I am currently assisting a UK org in a WHO/ICD Revision initiative. I'll post more when I have permission to elaborate.
    Last edited: Mar 11, 2014
  5. Firestormm

    Firestormm Guest

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    A couple of quotes from Lord Browne-Wilkinson whose views I found most useful to me (not that I have read the whole document you understand). The first relates to 'nervous shock' and foreseeability e.g. was the accident, its severity and the negligence of the defendant such that he might be expected to foresee the alleged consequences of his actions. And the second relates to the main matter at hand I suppose:

    Valerie Eliot Smith likes this.
  6. Valerie Eliot Smith

    Valerie Eliot Smith

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    Hi everyone - as you can see from my carefully-disguised username, I'm the one who wrote the blog post which you've been discussing here. Thanks to all of you for your comments and particularly to Firestorrm for the clarifications.

    I think the real conclusion which emanates from the discussion is the confusion generated by this case. It is a messy set of judgments which has since been much criticised. In an attempt to clarify the position, I've just published a very short update on my blog as follows:-

    "Following my previous post about the controversial case of Page v Smith [1995] UKHL 7 , I decided it might be a good idea to draft a simplified version of what actually happened in the case.

    First – a quick re-cap of the facts:-

    In 1987, Mr Page and Mr Smith were involved in a minor road traffic accident which, it was agreed, was the fault of Mr Smith. Mr Page sustained no physical injury but did suffer a major relapse of his Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) following the accident and claimed damages from Mr Smith. The case went all the way up to the House of Lords (which in 2009 became known as the Supreme Court). The House of Lords (HL) found in Mr Page’s favour, although not unanimously. The Law Lords remitted the matter back down to the Court of Appeal for a final determination. The Court of Appeal, having found against Mr Page the first time around, now found in his favour – in 1996.

    So, in the interests of clarity, I have come up with this explanation.

    PAGE v SMITH – THE ALTERNATIVE VERSION

    High Court: Nice judge. Lots of jolly good but largely irrelevant ["obiter"] discussion about ME/CFS (real illness; nasty business). Didn’t like The Weasel. Secretly felt sorry for Mr P so awarded damages.

    Court of Appeal (1): Nasty lot. Lots of squabbling. Couldn’t make up their minds so they took Mr P’s money away and buggered off to the pub.

    House of Lords: More judges. More squabbling. P has ME/CFS; P has accident; P suffers “nervous shock” [an archaic legal term] caused by accident; nervous shock causes a “recognisable psychiatric illness” (bit wobbly about exactly what illness because we’re only pretend doctors and PTSD is still in Beta at the moment); said illness triggers relapse of ME/CFS. Bingo. My judgment’s bigger than yours.

    Court of Appeal (2): Back again FFS. Last lot buggered off to the pub and forgot to determine causation. Of course the accident made Mr P worse. Give the man his money back and get those bloody insurance companies out of here. Mine’s a G & T. Obiter.

    Case comment by Mr Page and Mr Smith: Dude – nine years. Seriously?

    PS Anyone fancy doing the rap version?

    © Valerie Eliot Smith

    **********************************

    Thank you for reading this far. I wish you well."

    http://valerieeliotsmith.wordpress.com/

    Best wishes to everyone :)
  7. Esther12

    Esther12 Senior Member

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    Ta for that Valerie.

    Are there public records for the testimony from medical experts? Or does that get summarised in the judgements?

    And: Welcome to the PR forum!
  8. Valerie Eliot Smith

    Valerie Eliot Smith

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    Thank you, Esther :)

    The evidence now only exists in the judgments as a matter of public record. There will have been full transcripts of the proceedings at the time but I suspect (although not certain) that they are destroyed after a prescribed period of time. The official record is the transcripts of the judgments which always include the judge's summary of the evidence. Given the number of cases which are heard each year (and rising) the amount of storage required would be astronomical (and expensive). The original evidential documentation would be retained by the parties but again it's very unlikely they would still be in existence now for practical reasons.

    All the evidence heard was in the High Court case from 1992 so it would now be very out of date. The higher courts - the CA and HL (now the Supreme Court) - are only concerned with discussions of the law and rarely hear live evidence.

    I hope that answers your question.
    Esther12 likes this.
  9. Esther12

    Esther12 Senior Member

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    Ta Valerie.

    I'm part of the internet generation... surely google is storing all this stuff so that it can more effectively predict what sort of fridge Mr Page will want!

    Thanks for your thoughts on this.
    Valerie Eliot Smith likes this.

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