The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Why isn't Tourettes a MUS?

Discussion in 'General ME/CFS Discussion' started by Hutan, May 21, 2017.

  1. Hutan

    Hutan Senior Member

    New Zealand
    The thread about the withdrawal of MERUK from the CMRC wandered off to consider whether sexism and the patriarchy has been a factor in the selection of illnesses labelled as MUS's. I'm inclined to agree a bit with arguments for this idea but thought I should bring my further wandering thoughts to a new thread.

    I just had a look at a few Tourette's Syndrome websites. Tourettes affects substantially more men than women (or men are diagnosed with it much more often than women - there is some thought that females might present a bit differently and not be recognised). All the websites I looked at say that the cause is unknown. Diagnosis is done on the basis of observed tics rather than any imaging or blood tests. Some people with Tourettes have temporary paralysis. Other symptoms including OCD and behavioural issues are reported as being possible parts of the syndrome. Stress makes the symptoms worse. There have been what appears to be outbreaks of Tourettes.

    Really, I would have thought Tourettes would be in line for being thrown in the MUS bucket before the likes of EDS. And yet, if I google 'Tourettes MUS', nothing comes up, on the first page at least.

    None of the websites I looked at suggested that people with Tourettes could cure themselves by telling themselves that they don't have Tourettes. None of them suggested that Tourettes was caused by childhood trauma or being a criminal or taking drugs or being a perfectionist or being overly ambitious or not sleeping enough or sleeping too long or eating the wrong food or being too self-obsessed or being hyper-vigilant or not exercising enough or exercising too much or being a bored house-wife or any other bad behaviour that could be fixed if we just tried harder. I'm sure it hasn't always been that way. But right now, as far as I can see, Tourettes isn't a MUS.

    Yes, CBT is offered to help people with Tourettes cope. And I can see that it might be helpful - to be more confident in potentially embarrassing situations and to maybe learn to anticipate a tic and distract the body. But no one that I have seen is telling people with Tourettes that they really don't have a medical problem and they just need to pull themselves together and stop twitching. From NIH:

    See - not a whiff of the psychologists coming to the rescue.

    (BTW, I thought this was interesting)
    So why does Tourettes not get a MUS label? Whereas a female reporting to her doctor that she gets temporary paralysis and muscle twitches without anything showing up on an MRI runs the risk of getting whatever current label equals 'hysterical time-waster'.

    Is it that the male:female ratio makes the difference? Is it that most people with Tourettes can work productively and are highly visible whereas many of us with fatiguing illnesses just loll about in an irritating but quiet way? Is there something to learn from Tourettes advocacy? Would a string of expletives directed at someone help?

    Anyway, just throwing it out there. Hopefully I have not offended any Tourettes sufferers. I'm happy to be corrected by people whose knowledge of Tourettes comes from more than the reading of a few websites.
  2. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

    Some info on ICD codes and Exclusion terms for the Tic disorders:

    For ICD-10 Version: 2016 (the WHO version)

    Tic disorders are classified in Chapter V Mental and behavioural disorders under section:

    F90-F98 Behavioural and emotional disorders with onset usually occurring in childhood and adolescence (F90-F98)

    F95.0 Transient tic disorder
    F95.1 Chronic motor or vocal tic disorder
    F95.2 Combined vocal and multiple motor tic disorder [de la Tourette]
    F95.8 Other tic disorders
    F95.9 Tic disorder, unspecified

    Tourette syndrome is specified as an Exclusion to the F45 Somatoform disorders categories.


    For DSM-5 (published 2013)

    Tourette’s disorder (also called Tourette Syndrome [TS])
    Persistent (also called chronic) motor or vocal tic disorder
    Provisional tic disorder
    Other Specified Tic Disorder
    Unspecified Tic Disorder

    are classified under

    Neurodevelopmental Disorders > Motor Disorders

    DSM-5 categories have to be cross mapped to ICD codes for reimbursement etc.

    Tourette’s disorder is cross mapped to code F95.2 in the U.S. specific ICD-10-CM.

    In ICD-10-CM:

    tic disorders (in childhood and adolescence) (F95.-)
    Tourette's syndrome (F95.2)

    are specified as "Excludes2" to the F45 Somatoform disorders.


    ICD-11 draft (an initial version of ICD-11 is scheduled for release in 2018 but won't be implemented for several years)

    For ICD-11, Tic disorders are parented under both Diseases of the nervous system under Movement disorders and under Mental, behavioural or neurodevelopmental disorders

    Diseases of the nervous system

    Movement disorders

    > Primary tics or tic disorders
    > Tourette syndrome
    > Transient motor tics

    Tic disorders and Tourette syndrome are specified as Exclusion terms under Bodily distress disorder (BDD) (the new single SSD-like category that is proposed to replace most of the ICD-10 F45 Somatoform disorders and F48.0 Neurasthenia).

    For ICD-11, categories can be assigned under more than one parent and more than one chapter.

    Tourette syndrome has three parents, the first two of which are in the Mental, behavioural or neurodevelopmental disorders chapter:

    So, In ICD-10 and ICD-10-CM, Tourette syndrome is specified as an Exclusion under the F45 Somatoform disorders;

    in DSM-5, Tourette syndrome is classified under Neurodevelopmental Disorders > Motor Disorders and cross mapped to ICD-10-CM F95.2, which is specified as an Exclusion under the F45 Somatoform disorders;

    for ICD-11 (Beta draft) Tic disorders are primary parented under Diseases of the nervous system under Movement disorders and specified as Exclusions under Bodily distress disorder.

    Note that for ICD-11, the inclusion of a term within Chapter 8 Diseases of the nervous system does not necessarily imply that ICD-11 considers the category to be a neurological disease or condition.

    There have been proposals by Jon Stone and TAG Neurology chair (Raad Shakir) for the various Dissociative disorders categories to be relocated under Diseases of the nervous system - not because Stone and Shakir consider them to be neurological but because patients diagnosed with these disorders are frequently referred to neurologists.

    That proposal was overturned by the Project Lead for Mental or behavioural disorders and the Dissociative disorders are now back under Mental, behavioural or neurodevelopmental disorders chapter under

    Dissociative disorders
    > Dissociative neurological symptom disorder
    > Dissociative neurological symptom disorder, with seizures or convulsions
    > Dissociative neurological symptom disorder, with weakness or paralysis
    Last edited: May 22, 2017

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