ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

[JoanDublin]

I've sent a copy of the Daily Mail article to Dr Geoffrey Reed, who is lead for the ICD-11 Mental or behavioural disorders chapter, as it very nicely supports my recent submission on BDD.

A most excellent move Suzy! I must admit I read the article this morning and just wanted to eat my head. But you are of course spot on. It proves your point.

 

[Chrisb]

Let's try and understand this. "Bodily distress disorder" is defined as being characterised by " the presence of bodily symptoms that are distressing to the individual..."

That is not a definition. That is tautology. Unless the words are being used in completely different senses. But they offer no clue as to that.

Is this "distress" in the sense that a ship is in distress when it has lost power, is sending SOS messages and is about to run onto the rocks?

Or is it "distress" in the sense that a piece of metal may be distressed before fracturing due to metal fatigue and sending a plane rapidly earthwards?

Or is it distressed in the sense that "You're just being emotional; now pull yourself together and dry your eyes"?

Distress may be a cause, a symptom, or a state of affairs. One suspects that it is used in different senses within the space of less than a line.

 

[slysaint]

"Bodily distress disorder" is defined as being characterised by " the presence of bodily symptoms that are distressing to the individual..."

isn't that what any illness is?

 

[Dx Revision Watch]

New proposal from Dr G Reed on behalf of Mental or behavioural disorders:

2017-Mar-21 - 16:40

http://apps.who.int/classifications...lGroupId=9bd2b5b4-2f86-40f6-81db-c422ec14bb10

Complex Hierarchical Changes Proposal

Bodily distress disorder

Detailed Explanation of the Proposal

Please move this category and all its children one level down in the hierarchy, without otherwise modifying them.

For the grouping level category, please substitute 'Disorders of bodily distress and bodily experience'.

The definition of 'Disorders of bodily distress and bodily experience' should be:

Disorders of bodily distress and bodily experience are characterized by disturbances in the person’s experience of his or her body. Bodily distress disorder involves bodily symptoms that the individual finds distressing and to which excessive attention is directed. Body integrity dysphoria involves a disturbance in the person’s experience of the body manifested by the persistent desire to have a specific physical disability accompanied by persistent discomfort, or intense feelings of inappropriateness concerning current non-disabled body configuration.

As a second child of this grouping, please accept the proposal submitted by Michael First submitted on July 12, 2016 for Body Integrity Dysphoria, but move it to be a child of the new grouping category 'Disorders of bodily distress and bodily experience' and a sibling of 'Bodily distress disorder'.

At the grouping level, please include a specific exclusion for 'Dissociative neurological symptom disorder'.

Thank you!

--On behalf of the Mental Health TAG

Rationale field

Please see proposal submitted by Michael First submitted on July 12, 2016 for Body Integrity Dysphoria.

As noted in our comments on that proposal, we agree with the addition of the rare, though quite distinctive, condition of Body Integrity Dysphoria. It is not adequately classified in current proposed categories for ICD-11.

However, we are concerned about modifying conceptually in a substantive way the range of phenomena that are considered to be neurodevelopmental disorders in order to accommodate this category.

We believe that it will be preferable to modify the grouping of Bodily Distress Disorder in order to accommodate this category, and will submit a proposal to that effect.

Although the fit with Bodily Distress Disorders is not perfect, a grouping level category would place too much emphasis on this phenomenon.

--On behalf of Mental Health TAG

 

[Dx Revision Watch]

isn't that what any illness is?

Ah, but they have to be excessive:

"If a medical condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression."

Anyway, a change today in the Proposals see above.

 

[slysaint]

'Dissociative neurological symptom disorder'.

are they just making this up as they go along?

 

[Dx Revision Watch]

So what is being proposed is this:

New grouping category:

Disorders of bodily distress and bodily experience

Definition:

Disorders of bodily distress and bodily experience are characterized by disturbances in the person’s experience of his or her body. Bodily distress disorder involves bodily symptoms that the individual finds distressing and to which excessive attention is directed. Body integrity dysphoria involves a disturbance in the person’s experience of the body manifested by the persistent desire to have a specific physical disability accompanied by persistent discomfort, or intense feelings of inappropriateness concerning current non-disabled body configuration.

under which sit (unchanged)

> Bodily distress disorder
>>Mild bodily distress disorder
>>Moderate bodily distress disorder
>>Severe bodily distress disorder
​

and this term below becomes another child category under the new parent:
"Disorders of bodily distress and bodily experience"

>Body Integrity Dysphoria


Body Integrity Dysphoria is a disorder where the individual wishes an amputation.


I am seriously considering chewing off my right arm.

 

[Molly98]

isn't that what any illness is?

I know my thoughts exactly, anyone and anything could come under it.

My dog actually has it at the moment, he is distressed because he keeps getting some sort of itch or discomfort in his ear. And do you know what, he keeps paying it attention and scratching it because it's bothering him. Definitely out of proportion to what it is, because well I am the boss and I say so.

He went for his yearly check up at the vets last week, they said he is as right as rain, no problems as far as they can see, clean bill of health.

So well, I thought, it must be down to childhood trauma, he did get separated from his mom at 12 weeks, and he was in a car accident when he was young. He also got bitten by an adder snake on the nose, all within the first year or so of his life. Prone to binge eating also, especially forbidden foods like chocolate, obviously emotional issues.

CBT or GET first do you reckon?

 

[suseq]

I know my thoughts exactly, anyone and anything could come under it.

My dog actually has it at the moment, he is distressed because he keeps getting some sort of itch or discomfort in his ear. And do you know what, he keeps paying it attention and scratching it because it's bothering him. Definitely out of proportion to what it is, because well I am the boss and I say so.

He went for his yearly check up at the vets last week, they said he is as right as rain, no problems as far as they can see, clean bill of health.

So well, I thought, it must be down to childhood trauma, he did get separated from his mom at 12 weeks, and he was in a car accident when he was young. He also got bitten by an adder snake on the nose, all within the first year or so of his life. Prone to binge eating also, especially forbidden foods like chocolate, obviously emotional issues.

CBT or GET first do you reckon?

@Molly98 , you're on fire today - such brilliant comments - making me laugh so much - thank you! x

 

[Molly98]

manifested by the persistent desire to have a specific physical disability accompanied by persistent discomfort, or intense feelings of inappropriateness concerning current non-disabled body configuration.

Help me out here Suzy.

So, if an ME patient goes to a medical professional and the medical professionals says to the patient " You have MUS"
and the patient says " no, I have ME. ME is a complex illness affecting many symptoms of the body that is classed as neurological by the WHO, recognised as a complex and serious disease by the IOM. These are the many symptoms I have"

Thus insisting on you illness being recognise for both health and benefit reasons and for appropriate treatment, and relaying you current symptoms is enough on its own to get a diagnosis of BDD.

So as long as the medical professional willfully chooses to disbelieve ME exists they get to misuse their power and authority and label you as this because you can not ignore you illness and you refuse their diagnosis.

 

[Dx Revision Watch]

are they just making this up as they go along?

'Dissociative neurological symptom disorder'.

which has been requested to be inserted as an Exclusion term is the renamed:

"Dissociative disorders".


In DSM-5 these are known as

"Functional neurological symptom disorders"

Up until last year, the chair of TAG Neurology and Dr Jon Stone were pushing for 'Dissociative neurological symptom disorder' to be included in the Diseases of the nervous system chapter. Not because they consider the previously termed "Dissociative disorders" to be neurological disorders but because neurologists often get referrals for these patients.

That proposal was rejected by Dr Geoff Reed and Dissociative neurological symptom disorders is now back under Mental or behavoural disorders.

Additionally, it has an Excludes specified for:

Diseases of the nervous system

 

[Dx Revision Watch]

Help me out here Suzy.

So, if an ME patient goes to a medical professional and the medical professionals says to the patient " You have MUS" and the patient says " no, I have ME. ME is a complex illness affecting many symptoms of the body that is classed as neurological by the WHO, recognised as a complex and serious disease by the IOM. These are the many symptoms I have"

Thus insisting on you illness being recognise for both health and benefit reasons and for appropriate treatment, and relaying you current symptoms is enough on its own to get a diagnosis of BDD.

So as long as the medical professional willfully chooses to disbelieve ME exists they get to misuse their power and authority and label you as this because you can not ignore you illness and you refuse their diagnosis.

That's about it, yes.

 

[Dx Revision Watch]

ICD's Dr G Reed, in 2015:

"I agree that there is a potential for confusion with the Fink construct, which is conceptually different. So, this is not ideal...However, it should be possible to arrive at some satisfactory terminology and I will discuss further with the Working Group."

 

[MEisnotMUPS]

the mild, moderate, severe categories clearly show BDD has become the new 'MUS' ........ and MUSs is a "working hypothesis". Can psych just make up non-diagnosis ?
The Dutch MUS guideline gives those categories for MUS and see table 5, CFS as functional syndrome under undiff. somatoform disorder! (mental / behavioral disorder in ICD 10)

The author of this guideline and his Dutch PACE colleagues are now writing an advisory report on ME to parliament. Many of their BPS colleagues are on the committee too...

Sign people sign this dutch petition , pleeeeeeaaaaassssseeeeeee
https://meisgeensolk.petities.nl/?locale=en

 

[Molly98]

That's about it, yes.

Well that's me branded with a big fat MUS on my forehead and BDD on my arm then seeings this is exactly what I wrote in no uncertain terms to a Mental health practitioner who visited last week because they want to treat my ME as psychological and want me to go to the NHS fatigue clinic and I refuse.

Not to mention the fact that they view my husband ' caring for me ' is keeping me ill, I am sure they are jumping to a Munchausen by proxy assessment of me. So when I didn't want to see them, they wanted to pay me a visit at home, just I think to reassure themselves that my husband wasn't holding me hostage against my will upstairs or something similar as i wont speak to them on the phone.

This whole thing is so tedious and patronising.

 

[Dx Revision Watch]

There will be a frantic rush for submission of proposals by Topic Advisory Groups and professional body stakeholders over the next couple of weeks, as the deadline is March 30.

 

[Dx Revision Watch]

the mild, moderate, severe categories clearly show BDD has become the new 'MUS' ........ and MUSs is a "working hypothesis". Can psych just make up non-diagnosis ?
The Dutch MUS guideline gives those categories for MUS and see table 5, CFS as functional syndrome under undiff. somatoform disorder! (mental / behavioral disorder in ICD 10)

The author of this guideline and his Dutch PACE colleagues are now writing an advisory report on ME to parliament. Many of their BPS colleagues are on the committee too...

Sign people sign this dutch petition , pleeeeeeaaaaassssseeeeeee
https://meisgeensolk.petities.nl/?locale=en

You might like to have the most recent paper from the S3DWG working group:

https://t.co/aItZ4WARi7

 

[Countrygirl]

Well that's me branded with a big fat MUS on my forehead and BDD on my arm then seeings this is exactly what I wrote in no uncertain terms to a Mental health practitioner who visited last week because they want to treat my ME as psychological and want me to go to the NHS fatigue clinic and I refuse.

Not to mention the fact that they view my husband ' caring for me ' is keeping me ill, I am sure they are jumping to a Munchausen by proxy assessment of me. So when I didn't want to see them, they wanted to pay me a visit at home, just I think to reassure themselves that my husband wasn't holding me hostage against my will upstairs or something similar as i wont speak to them on the phone.

This whole thing is so tedious and patronising.

Damn cheek!

They want to send you and me to the same fatigue clinic @Molly98 .

Has potential!!! Now how about a double act................?? They like us to have group sessions. Just imagine it! We could teach them a thing or two and I think they may regret hauling us across their doorstep.....................there again.....................they have a reputation of sectioning ME patients. Needs thought!

 

[Jigsaw]

This MUS stuff makes my blood boil.

Basically, it's back to blaming the patient simply because the medical profession can't work out what's going on biochemically.

They don't know what's wrong with patients like us, and since the God Complex rules, especially in the upper echelons of medical power, it therefore must be our fault.

I've just seen this: http://www.priorygroup.com/blog/priory-bitesize/medically-unexplained-symptoms

It includes such gems as -

• "In IBS, normal gut sensation is perceived as abnormal, this leads to distress, psychological distress affects the gut via the ENS leading to more symptoms and worsening mood via vagal feedback" - How the hell do you "perceive" raging gut cramps and violent diarrhoea as "normal" ?

• "Selective attention lowers the threshold of symptom detection and lack of explanation increases anxiety, symptoms and symptom focus" - So trying to understand how to make ourselves well is a bad thing?? If the medical profession could help us, or had been able to help us when we all first asked for help, then none of us would still be looking for answers ourselves! This is saying we make ourselves ill through monitoring our symptoms, aka hypochondria.

• "Consider a psychiatric assessment where no cause has been found and advice is needed about medication" - so if they, through ignorance or ineptitude can't put a recognised disease label on our symptoms, then obviously we're all just nut-jobs.

There's even a quote listed as being from a patient advocating the "get off your butt" therapy.

They say that if we wait until we feel 100% better before getting out of bed, then none of us would get out of bed.
Well, I don't know ANYONE with a chronic illness who does that, do you? Chronic illness isn't like waiting to get over a bout of the 'flu. We all push ourselves because we all want to be "normal". We all get out of bed and try to do even small things to help us feel more "normal" Personally, I'm disproprtionately delighted if I manage to clean the loo.


Therefore, or so their distorted reasoning goes, we should all force ourselves out of bed regardless of how ill we "think" we are, and regardless of how much MORE ill that makes us. - Oh, wait! We're just "perceiving"that it makes us worse, it doesn't really. Silly me. If only I'd known that before.

Or maybe my brain is making up the physical pain from neuropathy and muscles, the sweats that follow the pain, the all-over shaking, the dizziness, the nausea, the loss of balance and falling over, the throwing up, the migraines and the absolute exhaustion that follows most any normal thing I push myself to do?

It's bad enough having a rheumatologist (for my co-morbid fibromyalgia) who insists that I'm not really in any pain, it's *just* my brain "misinterpreting pain signals".

Makes me want to slap his face just so I can chirp brightly, "Don't worry! That doesn't really hurt! It's just your brain misinterpreting pain signals!" everytime he says it.


Patronising, clueless, ignorant, smug, self-serving morons.

 

[Countrygirl]

This MUS stuff makes my blood boil.

Patronising, clueless, ignorant, smug, self-serving morons.

It has infuriated me to the point that I have been driven to eating chocolate....................a treat reserved for when I feel life is nearly extinct and/or intolerable....................

Joking aside.................................I have never felt so vulnerable in years.........................one of the PACE proponents and researchers has phoned my surgery and has instructed them to send me for CBT................after 44 years!! I am more than incandescent. How dare they interfere!!!!!

And, apart from that, why the heck are these people contacting our GPs in the first place? Has anyone heard that these........................can't think of a suitable word.................... have contacted their surgery?