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

[Jigsaw]

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?

@Countrygirl

Has anyone heard that these........................can't think of a suitable word.................... have contacted their surgery?

I can think of several highly applicable words, one in particular, none of which are suitable for a public forum.

No, thankfully not, but then I was put forward for CBT a few years ago, and after they assessed me, they decided I was "unsuitable" for CBT, and out me through a course of CAT instead.

The psych concerned said inane things like, I was making my "illness" worse by fighting against it, that I was making it worse by accepting it (make your mind up!) and got ridiculously upset - seriously - when I followed her lead of using my Christian name and called her by hers.

Not on, apparently. Her lower lip trembled, she gulped, looked out the window, and her eyes filled up. I was I was made to promise to ONLY address her by her Doctor title. My partner said I should have insisted on being called Mrs Jigsaw, but of course that would have left me open to accusations of "not engaging with treatment" or resisting treatment, or being obstructive, or something. (Sigh.)

She needed the protective shield of her title to validate her employment, I think. The irony is that, IMHO, the majority of health workers involved in psych (ology or iatry) are way more mad than any of us! The tales I could tell.......Lol.



Back to this MUS nonsense again - I'm convinced they keep coming up with ever more objectionable and surreal "explanations" for all the broken bits we have to drag round with us every day, just so that we will indeed object to their objectionable-ness (brain-fog, I'm sure there must be a better word for it than that @slysaint - or are you restricted to foreign language corrections only? ) because then they can triumphantly crow, "Ah-ha! Aggressive! Border-line psychotic!" Or if we get upset and tearful, "Ah-ha! Hysterical! Labile! Depressed!"

Anything to cover their sheer ignorance.

 

[Jigsaw]

@Countrygirl



Re: vulnerable. Me too. Not exactly helpful, is it? Have a hug

- I'm convinced I was a judgemental, smug, patronising moron of a medic in a previous life, and this is my come-uppance.

I've had over forty years of this sort of attitude from doctors, consultants, specialists, etc. Surely I must have paid my karma back by now?

Well, I was convinced of that, but then the same should be equally applicable to everyond else experiencing the same things from the medical profession, so it's probably just my logical brain desperately trying to make sense of the unbelievable attitudes I've encountered over the years.

None of us deserve this.

 

[Jigsaw]

@Molly98 @Countrygirl

Fatigue clinic?

I suppose that will be graded exercise and other equally un-doable things, all of which seem to disregard PEM?

 

[Countrygirl]

I had to look up CAT @Jigsaw .

http://www.acat.me.uk/reformulation.php?issue_id=22&article_id=226

Give me patience!!

Might be wise to read it in this present climate of psycho babble.

 

[Jigsaw]

are they just making this up as they go along?

@slysaint

Yep.

 

[Jigsaw]

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

https://t.co/aItZ4WARi7

Re: this paper -

"Some patients object to the term “somatoform”, which they think may imply that their symptoms are of doubtful clinical importance and are “in their heads” or not real. Furthermore, the notion that the symptoms are medically unexplained is often rejected by patients as essentially an issue of detection."

Are we allowed to swear on here?

No *** Sherlock! It IS a matter of detection, of them not detecting / identifying the causes!

Of course we object to "somatoform", which seems to me to be the new word for "psychosomatic". Any sane human would. How ironic.

Best Case Scenario - you have a sympathetic GP or other consultant etc who at least helps you manage your symptoms with painkillers, etc, and doesn't blame your signs and symptoms on you. But then many of us react horribly to a lot of commonly prescribed drugs, which in turn mean yet more drugs to counter-act the side-effects of the first lot, or new drugs to fix actual damage caused by drugs we haven't tolerated. Still doesn't address the root cause. Nothing really improves, some things get worse.


Worst Case Scenario - you get landed with a pompous, smug, patronising GP, etc, who would rather believe that patients with no clear pathology are therefore sectionable. Doesn't address the root cause, unfairly invents a new root cause, causes great distress, makes everything worse.

Somewhere inbetween you have sympathetic GPs who are largely governed by the advice from specialists and consultants with an obvious God Complex. Root cause still not addressed.

NHS hands are financially tied. Any innovative investigations seem to be off the table for now, at least.

As long as no-one can identify exactly what is causing our illness(es), any proposed treatment is highly likely to be ineffective as regards restoring normal function and health. Re-spraying a car that's run out of petrol won't fill up the tank.

All this MUS stuff reeks of them being just desperate to stick us in a corner and write us off as being mentally ill.

Damn right I object to that.

 

[Dx Revision Watch]

Via the Beta draft Proposal Mechanism:

http://apps.who.int/classifications...lGroupId=c321880e-aa46-4328-ac19-7153c5e7a364

I note the proposal to add a new grouping level category: 'Disorders of bodily distress and bodily experience', under which 'Bodily distress disorder' and its three coded severity specifiers are proposed as children; and that 'Body integrity dysphoria' is proposed as a sibling.

I note that no change is proposed for the name, 'Bodily distress disorder'.

Today, the 'Daily Mail' (second largest circulation 'red top' in the UK) has published an article on Bodily distress syndrome. There are references to Per Fink, to Aarhus and to the essential features of the 'Bodily distress syndrome' diagnosis and to the illness groups its authors claim to capture under a single, unifying diagnostic category.

The Daily Mail article [1] claims:

"...But research suggests these different diagnoses are all types of a single illness, bodily distress syndrome (BDS) — a new condition that's just been included in the draft of the next World Health Organisation's International Classification of Diseases, the diagnostic bible for doctors."

Will the S3DWG or the Advisory Group for Mental or behavioural disorders please publish a rationale for its recommendation to repurpose a disorder term that is already strongly associated with the Fink et al. (2010) disorder construct and that is used interchangeably with 'Bodily distress syndrome' by researchers and clinicians, and the Daily Mail.

Will the S3DWG chair comment on the implications for confusion and conflation between ICD-11's SSD- like BDD construct and the Fink et al. 'bodily distress syndrome' and the potential difficulties ICD-11 faces for maintaining construct integrity within and beyond ICD-11?

Stakeholders have thus far been provided with no justification for introducing a new disorder category into ICD-11 that has greater conceptual alignment with the DSM-5 SSD construct but which is proposed to be assigned a disorder name that is already used for a divergent (and operationalized) construct, which is differently conceptualized, has a very different criteria set, and captures a different patient population.

I trust that WHO will be requesting a correction in the Daily Mail.

What are Michael First's views on the perversity of this proposed nomenclature?

Ref: Proposal Mechanism: http://apps.who.int/classifications...lGroupId=c321880e-aa46-4328-ac19-7153c5e7a364

For those not registered for the Beta Proposal Mechanism, a copy, here, on my site: http://wp.me/pKrrB-4dc

[1] http://www.dailymail.co.uk/health/article-4332866/Why-doctors-t-dismiss-symptoms-mind.html

Suzy Chapman 2017-Mar-21 - 22:52 UTC

 

[Dx Revision Watch]

[*]"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" ?

A family member with ME underwent a sigmoidoscopy two or three years ago (not for IBS, but does have IBS like problems) and the consultant who carried out the procedure noted visual evidence of IBS on the follow up letter. I forget the term used but I will look it up on the paperwork.

 

[Dx Revision Watch]

1999, not a good vintage:

Functional somatic syndromes: one or many?

Wessely S, Nimnuan C, Sharpe M.

Lancet. 1999 Sep 11;354(9182):936-9. Review.

-----------

Functional somatic syndromes.

Barsky AJ, Borus JF.

Ann Intern Med. 1999 Jun 1;130(11):910-21. Review.

 

[Jigsaw]

Hi

I had to look up CAT @Jigsaw .

http://www.acat.me.uk/reformulation.php?issue_id=22&article_id=226

Give me patience!!

Might be wise to read it in this present climate of psycho babble.

Hi @Countrygirl,



Have PM'd you

 

[Dx Revision Watch]

I shall be posting another update, later this week.

In the meantime, I need to report on what happened, yesterday.

I am signed up to the Beta draft to receive change alerts for specific categories within the draft and also within the Proposal Mechanism.

This morning I received an alert.

Yesterday, "Team WHO" had left a message for me on the Fatigue Proposals page here:

http://apps.who.int/classifications...lGroupId=e3426560-b6e4-4c94-b0c8-ba25fabe66fa

(You will need to be registered with the Beta draft in order to view the page, in situ.)

The comment says:

While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.

Team WHO 2017-Mar-26 - 12:46 UTC​

My submission (December 15, 2014) for an Exclusion for (Benign) myalgic encephalomyelitis is now marked "Implemented."

My submission (December 15, 2014) for an Exclusion for Chronic fatigue syndrome is now also marked "Implemented."

The entire submission is now marked "Mixed Status."

This is because my submission (December 15, 2014) for an Exclusion for Postviral fatigue syndrome (which was the ICD-10 concept title but was not the concept title in the Beta draft, as it had stood in 2013) has not yet been approved or rejected for Implementation. (There are potential implications here which I don't have time to go elaborate on today.)

However, for the terms that are now marked "Implemented" there is no Exclusion listing under "Exclusions" for Fatigue with an arrow and a jump link which redirects to the entry that is supposed to have been "put back in its original place in ICD."

And neither Chronic fatigue syndrome or Benign myalgic encephalomyelitis has been returned to the Beta draft.

So once again, I am being given information that makes no frigging sense at all.

So once again, I have emailed Dr Robert Jakob and asked him to ask "Team WHO" what it is that they think they have done or intend to do with the two terms above, in respect of putting the entities back in their "original place in ICD" while "the optimal place in the classification is still being identified."

Which also suggests that they may not be intending to release any proposals this side of April 4.

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

So far, there has been no Written Answer to the Countess of Mar's second Written Question requesting clarification of two statements made in the first Written Response.

So it is unclear whether the action (or partial actions) taken by "Team WHO" yesterday are in response to further enquiries made of WHO/ICD Revision by NHS Digital in order to provide information to inform the Minister's response to the second question, which will need to be responded to, this week.

 

[Dx Revision Watch]

Today, as I work, I shall be listening to YouTubes of rain on tin roofs, lapping water, trains etc because otherwise there is a significant possibility that I shall go stark raving bonkers.

 

[Binkie4]

@Dx Revision Watch

Thank you for all your efforts on this. Very much appreciated.

??? Trains. I get the rain on tin roofs, lapping water but trains.......

 

[AndyPR]

@Dx Revision Watch

Thank you for all your efforts on this. Very much appreciated.

??? Trains. I get the rain on tin roofs, lapping water but trains.......

I'd guess a rhythmic clacketty-clack.

Or even better, train and rain combined.

 

[Dx Revision Watch]

I'd guess a rhythmic clacketty-clack.

Or even better, train and rain combined.

Train and rain - what more could a girl want.

 

[Binkie4]

Still cannot 'get' trains.

Maybe there's a psychbabble explanation. It's a Freudian thing.......???

 

[Dx Revision Watch]

After some further exchanges with Dr Jakob, this morning, the public Beta draft has now been updated for March 26 and they have restored PVFS to the draft.

Note: not as their proposals had stood in early 2013 (where they had CFS as lead term, BME as inclusion and PVFS under Synonyms).

But as the initial draft would have stood before the release of the iCAT drafting platform, in May 2010, at which point, they proposed to change the hierarchy between the terms.

However, this action on March 26 is apparently pending "While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD."

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/569175314

Postviral fatigue syndrome

Parent(s)

• Other disorders of the nervous system

Definition

This entity does not have a definition at the moment. You may suggest a definition using our Proposal System available under the Contibutions [sic] menu.

Synonyms

• Benign myalgic encephalomyelitis *
  
  (The asterisk denotes a specified Inclusion term.)
• chronic fatigue syndrome *
  
  (The asterisk denotes a specified Inclusion term.)
• akureyri
  
• akureyri disease
  
• CFS - [chronic fatigue syndrome]
  
• chronic fatigue, unspecified
  
• epidemic neuromyasthenia
  
• iceland disease
  
• icelandic disease
  
• myalgic encephalomyelitis
  
• myalgic encephalomyelitis syndrome
  
• ME - [myalgic encephalomyelitis]
  
• PVFS - [postviral fatigue syndrome]
  

Narrower Terms

• neuromyasthenia
  

Body Site

• Entire brain (body structure)
  
• Brain structure (body structure)
  

Causal Mechanisms
Virus (organism)

 

[Dx Revision Watch]

I will update in a day or two on another development.

For now, I am going to sit in this spring sunshine on my seat with the neighbour's cat and whimper, gently.

 

[ScottTriGuy]

Thank you Suzy for all the amazing effort and work and vigilance you have put into the international classification. You are one of our unsung heroes.

Just so I have this straight(ish) in my head:

All the relevant terms have been restored to "its original place in ICD."

And this means the crisis of not having ME included in ICD-11 by March 30 has now passed?

 

[Dx Revision Watch]

And also, the Fatigue entry now shows:

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1109546957

Exclusions

• Combat fatigue ⇒
  
• Exhaustion due to exposure ⇒
  
• heat exhaustion ⇒
  
• exhaustion and fatigue due to pregnancy ⇒
  
• Bodily distress disorder ⇒
  
• Depressive disorders ⇒
  
• Sleep-wake disorders ⇒
  
• Bipolar or related disorders ⇒
  
• senile fatigue ⇒
  
• Chronic fatigue syndrome ⇒
  
• (Benign) myalgic encephalomyelitis ⇒
  

Though not PVFS under Exclusions, but it should also be under Exclusions, because PVFS is the lead term for CFS and (B)ME (as entered today). That may be an oversight. Or it may be that they have been considering placing PVFS under Fatigue with the other two entities differently classified. But I am long past trying to second guess their actions and intentions.