Why isn't Tourettes a MUS?

[Hutan]

Sexism is at the centre of MUS targeting illnesses predominantly affecting women.

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.

https://www.ninds.nih.gov/Disorders...ct-Sheets/Tourette-Syndrome-Fact-Sheet#3231_5 From NIH:

Knowledge about TS comes from studies across a number of medical and scientific disciplines, including genetics, neuroimaging, neuropathology, clinical trials (medication and non-medication), epidemiology, neurophysiology, neuroimmunology, and descriptive/diagnostic clinical science.

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

(BTW, I thought this was interesting)

One of the most important and controversial areas of TS science involves the relationship between TS and autoimmune brain injury associated with group A beta-hemolytic streptococcal infections or other infectious processes. There are a number of epidemiological and clinical investigations currently underway in this intriguing area.

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.

 

[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

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/119340957

Diseases of the nervous system

Movement disorders
(...)

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

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:

• Chronic developmental tic disorders
• Obsessive-compulsive or related disorders
• Primary tics or tic disorders

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

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
etc.