NICE remove M.E. from neurological listings (UK)

[Jonathan Edwards]

I think Charles is being entirely reasonable here and I personally have full faith in his efforts to achieve the best available option. I would also prefer myalgic encephalopthy. I think it might get us nearer to a well founded scientific terminology. But equally I would agree with Charles that we are not interested in muddling that with getting NICE webpages to reflect the interests of patients.

 

[charles shepherd]

The fact remains that myalgic encephalopathy does not have a WHO classification.

You don't seem to appreciate that exactly the same position applies to other medical names that doctors sometimes use to describe their patients symptoms…….

I have sometimes used the term post viral arthritis and fatigue syndrome - this has no WHO listing but it's sometimes an appropriate way of describing what is happening clinically to a patient

There is nothing to stop doctors or patients putting forward and using another name for a condition or disease if they feel there are good reasons for doing so - as was the case quite a few years ago when there was a very powerful attempt to completely remove myalgic encephalomyelitis from medical language and I proposed the alternative term myalgic encephalopathy

Medicine is not a static subject and the names of diseases change as we understand more about their causation and pathology

 

[charles shepherd]

I have had a look at the NICE disease 'listing for access purposes'. It seems to me to be just that. It is not divided up by speciality or by organ system or by anything very systematic. It is all a bit of a muddle and I cannot believe that anybody medical is going to take any notice of where something is on this list. I realise it matters elsewhere but I think this is a storm in a teacup. I tried to look for sarcoidosis, which would not fit easily into any speciality, and I cannot even find anything at all. So maybe it is good that ME//CFS is at least thought real enough to mention by NICE.

And if people are critical of the current guidelines, which seems to me very justified, then maybe the fact that they no longer appear under any heading is a good thing!

If we want consistency then I guess it would be reasonable to have ME under a 'multisystem' category or a 'neutral' category. I haven't really been following this but it sounds as if at least it has been taken out of a psychiatric category, which is probably all that needs to be ensured.

Yes, I think if the Forward ME Group cannot persuade NICE to return ME/CFS to neurology it would be sensible to place it in a multisystem disease section - where it could be joined by some other medical conditions that don't easily fit into any definite -ology.

 

[Dx Revision Watch]

With reference to ICD-11 development and the ICD-10 G93.3 legacy entities, PVFS, BME and CFS:

Extract from Part 1 of my September Dx Revision Watch report:

Briefing paper on ICD-11 and PVFS, ME and CFS: Part 1

September 29, 2014
http://wp.me/pKrrB-40E
http://wp.me/pKrrB-40E

[...]

Differences between ICD-10 and ICD-11

There are significant differences between the structure of ICD-10 and ICD-11: more chapters (currently 26 against ICD-10’s 22); reordering of chapters; restructuring of disease classes and parent/child hierarchies within chapters; renaming of some terms; relocation of some terms to other existing chapters or to new chapters; multiple linearizations; more descriptive content; a new system of code numbers.

Disease terms with an equivalent ICD-10 term are back referenced to their legacy terms and codes in the electronic platform for ICD-10 Version: 2010 [6].

Multiple parents and multisystem diseases

For ICD-10 Tabular List, an ICD entity (a parent class, title term or inclusion term) can appear in only one place within the classification.

For ICD-11, multiple parentage is permissible. In the Foundation Component, disorder or disease terms can appear under more than one hierarchical parent [7].

Diseases that straddle two chapters, like malignant neoplasms of the skin, can now be viewed under Diseases of the skin as well as cross-linking to the Neoplasms chapter. Premenstrual Dysphoric Disorder (PMDD), proposed for inclusion in ICD-11, is listed under both Depressive disorders, in the Mental and behavioural disorders chapter, and also under Premenstrual tension syndrome under new chapter, Conditions related to sexual health.

So the ICD-10 concept of discrete chapter location is being dispensed with for ICD-11.

In 2010, the Revision Steering Group posted a discussion paper on the potential for incorporating a new chapter into ICD-11 for Multisystem diseases, but this proposal has been rejected [8].

In 2013, consideration was being given, instead, for generating a multisystem diseases linearization – as a virtual chapter – compiled from the Foundation Component that lists all ICD disorders and diseases, but there would be no separate Multisystem diseases chapter within the print version [9].

It isn’t known whether a decision has been reached but there is currently no ability to generate a multisystem diseases linearization from the Foundation Component, at least not within the public version of the Beta drafting platform.

How to represent multisystem diseases within ICD-11 (and the potential for an ICD category term to be assigned to multiple parents) could have implications for classification of one or more of the three ICD-10 G93.3 terms.


The Content Model

Another major difference between ICD-10 and ICD-11 is the Content Model. For ICD-11, all uniquely coded ICD Title terms (but not their Inclusion terms or Synonyms) are intended to have Definitions and in some cases, other descriptive content populated [10]. Whereas category terms located in ICD-10 chapters other than Chapter V: Mental and behavioural disorders were listed, to quote WHO’s, Bedirhan Üstün, like a laundry list, with no descriptive content.

6 http://apps.who.int/classifications/icd11/browse/f/en#/

7 http://apps.who.int/classifications/icd11/browse/Help/Get/architecture/en

8 http://dxrevisionwatch.files.wordpr...tions20on20multisystem_diseases_201008181.doc

9 http://informatics.mayo.edu/WHO/ICD...208/19.Multisystem_Diseases_Chapter.v1.2.docx

10 http://www.who.int/classifications/icd/revision/contentmodel/en/

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

Extract from Part 2 of my report, which tracks the progression of the G93.3 terms through the Alpha and Beta drafting stages, from May 2010 to early 2013, at which point the three terms were no longer displaying in the public version of the Beta draft.

My report also summarizes correspondence between myself and ICD Revision's Dr Geoffrey Reed, in July, when, inter alia, Dr Reed stated that the placement of ME and related conditions within the broader classification is still unresolved but that "there has been no proposal and no intention to include ME or other conditions such as fibromyalgia or chronic fatigue syndrome in the classification of mental disorders" and that "the easiest way to make this absolutely clear will be through the use of exclusion terms."

However, he would be unable to ask that exclusion terms are added to relevant Mental and behavioural disorders categories (e.g. Bodily Distress Disorder) until the conditions that are being excluded exist in the classification and that at such time, he would be happy to do that.


Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2
September 30, 2014

http://wp.me/pKrrB-41q
Extract:

[...]

What might the [Neurology] working group potentially be considering?

• The terms may have been removed from the draft in order to mitigate controversy over a proposed change of chapter location, change of parent class, reorganization of the hierarchy, or over the wording of Definition(s). (Whether a term is listed as a coded Title term, or is specified as an Inclusion term to a coded term or listed under Synonyms to a coded term, dictates which of the terms is assigned a Definition. If, for example, CFS and ME were both coded as discrete ICD Title terms, both terms will require the assigning of Definitions and other Content Model descriptors.)

• TAG Neurology may be proposing to retain all three terms under the Neurology chapter, under an existing parent class that is still under reorganization, and has taken the three terms out of the linearizations in the meantime, or is proposing to locate one or more of the terms under a new parent class for which a name and location has yet to be agreed.

• TAG Neurology may be proposing to locate one or more of these terms under more than one chapter, for example, under the Neurology chapter but dual parented under the Symptoms and signs chapter. Or multi parented and viewable under a multisystem linearization, if the potential for a multisystem linearization remains under discussion.

• TAG Neurology may be proposing to retire one or more of these three terms (despite earlier assurances by senior WHO classification experts) but I think this unlikely. ICD-11 will be integrable with SNOMED CT, which includes all three terms, albeit with ME and BME listed as synonyms to coded CFS, with PVFS assigned a discrete SNOMED CT code.

• Given the extension to the timeline, TAG Neurology may be reluctant to make decisions at this point because it has been made aware of the HHS contract with U.S. Institute of Medicine (IOM) to develop “evidence-based clinical diagnostic criteria for ME/CFS” and to “recommend whether new terminology for ME/CFS should be adopted.” Any new resulting criteria or terminology might potentially be used to inform ICD-11 decisions.

Other possibilities might be listing one or more of these terms under parent class, Certain specified disorders of the nervous system or under Symptoms, signs and clinical findings involving the nervous system, which is dual parented under both the Neurology chapter and the Symptoms and signs chapter.

Full report here

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

Please note that ICD-11 Beta drafting platform is currently frozen while an external assessment of the overall revision process is being undertaken. Although the public version of the Beta drafting platform is still accessible, those registered for increased access to the drafting platform should refer to these pages for changes made since the last frozen release:

http://apps.who.int/classifications/icd11/browse/downloads

http://apps.who.int/classifications/icd11/browse/frozenreleases

See what's changed since the last frozen release (2014-10-01)
http://apps.who.int/classifications/icd11/browse/Content/frozen/live/


ICD-11 is currently scheduled for World Health Assembly approval in May 2017. Implementation is currently projected for 2018+.

WHO member states will transition to ICD-11 at their own convenience. There is no WHO mandated implementation date and some countries, especially low resource and developing countries, may take many years to transition from ICD-10 to ICD-11. An abridged Primary Care version of ICD-11 is being developed simultaneously with the core version.

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

As always, the following caveats apply to the public version of the ICD-11 Beta drafting platform:

Important caveats: The public Beta platform is not a static document, it is a work in progress, subject to daily editing and revision, to field test evaluation and to approval by the RSG and WHO classification experts. Not all new proposals may survive the ICD-11 field tests. Chapter numbering, codes and “sorting codes” currently assigned to ICD categories are not stable and will change as chapters and parent/child hierarchies are reorganized. The public version of the Beta is incomplete; not all “Content Model” parameters display or are populated; the draft may contain contain errors and omissions.

 

[Dx Revision Watch]

For Part 1 of this briefing document: Part 1: Status of the ICD-11 development process

In Part 3, to follow in the next week or so, I shall be setting out what is currently known about the status of proposals for the revision of ICD-10’s Somatoform disorders for the core and primary care versions of ICD-11.

Beyond that, it is my intention to "retire" from the work I do, due to family circumstances. Although I shall be monitoring ICD-11 for my own interest, I shall not be publishing further reports on the development process.

 

[Dx Revision Watch]

There is a good deal of misunderstanding knocking around the internet about WHO and ICD-10.

ICD-10 classificatory rules and chapter listings apply to ICD-10 codes and to ICD publications. WHO does not have jurisdiction over other publications unless those publications are misquoting ICD-10 codes.

And WHO has never "defined" PVFS, BME or for that matter, CFS. But for ICD-11, all ICD Title codes (but not Inclusion terms or Synonyms) will be assigned a Definition for both the print and electronic versions.

Whether a term is listed as a coded Title term, or is specified as an Inclusion term to a coded term or listed under Synonyms to a coded term, dictates which of the terms is assigned a Definition.

If, for example, CFS and ME were both coded as discrete ICD Title terms both terms will require the assigning of Definitions and other Content Model descriptors.

The SNOMED CT clinical healthcare terminology system has CFS and ME listed under MH disorder and Multisystem disorder.

ICD-11 will be integrating SNOMED CT system within the electronic version of ICD-11.

 

[Sidereal]

The problem with leaving it in the hands of Forward ME is that the MEA represent something called 'myalgic ENCEPHALOPATHY', they do not represent myalgic encephalomyelitis; the former has no WHO classification code.

Another problem is that AfME are so very closely linked to the Wessely school of psychiatry that they may agree, secretly or not, with a reclassification to a psychiatric disorder.

I am sure Lady Mar and the other charities involved will do their best.

I wouldn't get too focused on the WHO classification issue since a) absolutely no one pays attention to it in clinical practice and b) it seems likely that the term myalgic encephalomyelitis will disappear from the next version of the ICD.

 

[Dx Revision Watch]

https://www.whatdotheyknow.com/request/distinguishing_between_cfsme_who

18 November 2012

FOI, Mr Courtney

Extract:

[...]

As to the classification of CFS/ME within the guideline, we acknowledge
that many different potential causes have been investigated – including
neurological, endocrine, immunological, genetic, psychiatric and
infectious – but the diverse nature of the symptoms cannot yet be fully
explained. As you are aware the guideline recognises that the World Health
Organization (WHO) classifies CFS/ME as a neurological illness. Some
members of the Guideline Development Group felt that, until further
research identifies its cause and how it develops, the guideline should
recognise this classification. So while it is generally recognised that
CFS/ME is heterogeneous, the evidence did not allow distinctions between
sub-groups with regard to diagnosis or management of the condition. This
assessment can be found in Section 1 of the full guideline document which
can be downloaded from the NICE website.

The issue of the classification of the disease was commented on by
stakeholders during the public consultation as this had not been included
in the first draft. In response to feedback received we revised the text
in the guideline to include reference to the World Health Organisation
(WHO) classification ICD10 as G93.3. In the [5] general stakeholder
comments you can read the feedback from stakeholders on this issue, this
feedback includes information on correspondence that external stakeholders
have had with the WHO regarding the classification of the disease in
ICD10.

 

[Dx Revision Watch]

...and b) it seems likely that the term myalgic encephalomyelitis will disappear from the next version of the ICD.

What evidence to you have, Sidereal, to support that statement?


For the record, this is how the public version of the Beta drafting platform had stood in early 2013 (though at that point a Definition had also been populated):

(It isn’t evident in the screenshot, but the asterisk at the end of Benign myalgic encephalomyelitis displayed a hover text denoting its specification as the Inclusion term to ICD Title term, Chronic fatigue syndrome. Also not evident in this cropped screenshot is the listing of Postviral fatigue syndrome under Synonyms.)

In ICD-10, BME is an Inclusion term to Title term, Postviral fatigue syndrome.

Part 2 of my report tracks (with screenshots) the proposed change in hierarchy between PVFS and CFS for ICD-11 (at least as proposals had stood in early 2013). In ICD-10, CFS was indexed only to G93.3 and not included in Volume 1: The Tabular List).

 

[charles shepherd]

There is a good deal of misunderstanding knocking around the internet about WHO and ICD-10.

ICD-10 classificatory rules and chapter listings apply to ICD-10 codes and to ICD publications. WHO does not have jurisdiction over other publications unless those publications are misquoting ICD-10 codes.

And WHO has never "defined" PVFS, BME or for that matter, CFS. But for ICD-11, all ICD Title codes (but not Inclusion terms or Synonyms) will be assigned a Definition for both the print and electronic versions:

"(Whether a term is listed as a coded Title term, or is specified as an Inclusion term to a coded term or listed under Synonyms to a coded term, dictates which of the terms is assigned a Definition. If, for example, CFS and ME were both coded as discrete ICD Title terms, both terms will require the assigning of Definitions and other Content Model descriptors.)"

The SNOMED CT clinical healthcare terminology system has CFS and ME listed under MH disorder and Multisystem disorder.

ICD-11 will be integrating SNOMED CT system within the electronic version of ICD-11.

We are also very concerned about the SNOMED classification of ME/CFS and this is being dealt with by the Countess of Mar and the Forward ME Group

The Countess of Mar wrote to the UK Terminology Centre about their classification on ME/CFS on 5th November

 

[Sidereal]

What evidence to you have, Sidereal, to support that statement?

It's just a general impression I get in light of its disappearance from the draft version and the ongoing IOM effort to rename the disease.

 

[Dx Revision Watch]

We are also very concerned about the SNOMED classification of ME/CFS and this is being dealt with by the Countess of Mar and the Forward ME Group

The Countess of Mar wrote to the UK Terminology Centre about their classification on ME/CFS on 5th November

Thank you for this information, Dr Shepherd.

 

[charles shepherd]

We are also very concerned about the SNOMED classification of ME/CFS and this is being dealt with by the Countess of Mar and the Forward ME Group

The Countess of Mar wrote to the UK Terminology Centre about their classification on ME/CFS on 5th November

What is SNOMED CT?

For those who are not up to speed on the latest medical acronyms! :

http://en.wikipedia.org/wiki/SNOMED_CT

 

[Dx Revision Watch]

It's just a general impression I get in light of its disappearance from the draft version and the ongoing IOM effort to rename the disease.

All three terms, PVFS, CFS and BME are currently unaccounted for within the Beta drafting platform - and have been since around February 2013.

So it's not solely BME that is currently absent.


My report Part 2 at:

http://wp.me/pKrrB-41q

also includes an FOI response from the Scottish Health Directorate, September 2014, re enquiries made in connection with ICD-11.

 

[Dx Revision Watch]

Note that the U.S. has developed an adaptation of the International SNOMED CT.

The cross walk between the U.S. version of SNOMED CT and the forthcoming ICD-10-CM codes reflects the U.S. specific, ICD-10-CM classifications for PVFS and BME (Chapter 6, G93.3), with CFS under Chapter 18: Symptoms and signs at R53.82 as:

R53.82 Chronic fatigue, unspecified
Chronic fatigue syndrome NOS

Excludes1: postviral fatigue syndrome (G93.3)

 

[Sidereal]

All three terms, PVFS, CFS and BME are currently unaccounted for within the Beta drafting platform - and have been since around February 2013.

So it's not solely BME that is currently absent.

Right. I wasn't implying that it was the only one missing. The point I was trying to make is that I don't believe there's much value in getting hyperfocused on the neurological classification of benign ME/PVFS in ICD-10 since that may well change in its next iteration.

 

[Dx Revision Watch]

Right. I wasn't implying that it was the only one missing. The point I was trying to make is that I don't believe there's much value in getting hyperfocused on the neurological classification of benign ME/PVFS in ICD-10 since that may well change in its next iteration.

Agreed.

But it is important that ICD-11 development is monitored and that all classes of stakeholder are involved for the best possible outcome.

And that means now - not two years down the line when proposals will be nearing finalization.

ICPC-2 is also under revision.

 

[Dx Revision Watch]

It's just a general impression I get in light of its disappearance from the draft version and the ongoing IOM effort to rename the disease.

http://www.slideshare.net/ustunb/icd-revision-ustun-2014

Current status of ICD Revision Process

October 21, 2014

Slide #37

"About 3000 ICD10 Index terms are “missing”.
A human judgement is being made as to whether they are necessary and once included they point to the right code."

 

[Dx Revision Watch]

As a further example of the "fluidity" of chapter location for ICD-11:

There is a new parent class proposed for ICD-11 Neurology chapter called, Functional clinical forms of the nervous system, which Dr Jon Stone has been working on [15] [17].

Under this new Neurology parent class, it is proposed to relocate or dual locate a list of “functional disorders” (Functional paralysis or weakness; Functional sensory disorder; Functional movement disorder; Functional gait disorder; Functional cognitive disorder et al.) which in ICD-10, were classified under Chapter V Dissociative [conversion] disorders section.

The published rationales for relocating (or dual or multiple parenting) Conversion disorders under the Neurology chapter is beyond the scope of this thread, but these so called "functional neurological disorders" are often diagnosed in neurologists' outpatient clinics.

The parents for Functional clinical forms of the nervous system are

• Diseases of the nervous system
• Clinical forms of the nervous system

The first parent is in the Neurology chapter.
The second parent is in the Symptoms and signs chapter.

But the disorder constructs are also accommodated under ICD-11's Dissociative disorders > Dissociative disorders of movement or sensation section.

So that's three parents and three chapter locations through which these disorders can be pulled up within ICD-11.

This example of cross chapter location is a good demonstration of the concept of multiple parentage and of the "blurring" of boundaries between chapters in ICD-11.


15 http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1614846095

16 Shakir R, Rajakulendran, S. The 11th Revision of the International Classification of Diseases (ICD) The Neurological Perspective JAMA Neurol. 2013;70(11):1353-1354. http://archneur.jamanetwork.com/article.aspx?articleid=1733323

17 Functional neurological disorders: The neurological assessment as treatment. Stone J. Neurophysiol Clin. 2014 Oct;44(4):363-73 http://www.ncbi.nlm.nih.gov/pubmed/25306077

 

[Dx Revision Watch]

"Tymes Trust

Alert: Backlash at NICE. After Tymes Trust and the Countess of Mar took action to have ME removed from NICE 's mental health listings, NICE has removed it from their neurological listings as well. This is being followed up. The Countess has already stated that it is mandatory to follow WHO."

I've asked Jane to qualify:

"The Countess has already stated that it is mandatory to follow WHO."