Forward-ME group: “M.E. must continue to be classified as neurological”

Post #334 Shortlink: http://wp.me/pKrrB-4gE

From the News pages of Action for M.E.

M.E. must continue to be classified as neurological

April 24, 2017

Action for M.E. has collaborated with other Forward M.E. charities to strongly support the call for M.E. to continue being classified as a neurological condition by the World Health Organisation (WHO).

In the WHO’s current (10th) edition of the International Classification of Diseases (ICD-10), postviral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome are classified as neurological.

Following uncertainty from the WHO about where these conditions might be listed in the next classification (ICD-11), which is currently being drafted, UK and US advocates Suzy Chapman and Mary Dimmock have prepared a detailed proposal recommending:

  • keeping the titles of M.E., Chronic Fatigue Syndrome (CFS) and Postviral Fatigue Syndrome in the chapter ‘Diseases of the nervous system’
  • having separate entries for M.E. and for CFS
  • referring to M.E. as ‘Myalgic encephalomyelitis,’ where previously it had been called ‘Benign myalgic encephalomyelitis.’

You can read about this in more detail on Suzy’s dx revision watch website.

Having been contacted by Suzy and Mary, we have worked with other Forward M.E. charities to prepare a statement that supports their proposal, and jointly submitted it to the WHO as Forward M.E., supported by the group’s Chair, the Countess of Mar.

As part of the statement, we say: “We are aware that some patients are being referred to services for ‘medically unexplained symptoms’, under the mistaken assumption that M.E. is a ‘functional somatic syndrome.’ Indeed, the Joint Commissioning Panel for Mental Health (England) has recently published guidance stating that ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ is a ‘functional somatic syndrome.’

“As the evidence gathered by this proposal so clearly demonstrates, this illness is a ‘serious, chronic, complex, and multisystem disease’ that causes significant impairment – including neurological, cognitive, immunological, autonomic and energy metabolism disorder. We consider that it is vital that the WHO ICD continues to provide a bulwark against medical mismanagement of M.E. patients.”

Forward M.E.’s full statement can be accessed online. If you register for an account, the proposal and statement can also be found in full on the ICD-11 forum.

What is the ICD-11?

Published by the World Health Organisation, the International Classification of Diseases is a system of diagnostic codes for classifying diseases, designed to map health conditions, and their specific variations, to larger and more general categories. Currently in its tenth revision (ICD-10, published in 1992), it is subject to minor annual updates and major triennial updates. ICD-11 was planned for 2017, but has been pushed back to 2018.

What are “medically unexplained symptoms”?

In February, the Joint Commissioning Panel for Mental Health published guidance for mental health commissioners, stating that M.E. is a functional somatic syndrome, and recommends a referral to services for patients with Medically Unexplained Symptoms (MUS).

Action for M.E. absolutely does not support this recommendation, and we are extremely concerned by the impact that we are beginning to see on people with M.E.

Some of you have got in touch to tell us that you are being challenged by your healthcare professional as to the validity of your M.E. diagnosis, and instead being told that you have MUS.

If this experience is familiar to you, or you are concerned by the definition of M.E. used by your healthcare professional, please contact us (p 2).

We would advise anyone faced with this to make it clear that:

  • M.E. is not MUS, and categorising it as such contradicts the World Health Organisation’s International Classification of Diseases, which states that M.E. is a neurological condition.
  • the NICE guideline makes it clear that specialist services for M.E. are likely to be needed by a significant number of people with the condition; it is likely that the approach offered by MUS services would be inappropriate in many cases
  • a considerable body of published, peer-reviewed evidence, as comprehensively referenced by the 2015 Institute of Medicine report, indicates growing evidence of potential neurological, immunological and endocrinological biomarkers in M.E. The report concluded (p 209) that: “It is clear from the evidence compiled by the committee that M.E./CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.”

Action for M.E. is undertaking work to highlight this to health professionals and policy-makers, and can offer information and support to anyone being referred to services they feel are inappropriate.

[Ends]


Click here for a PDF of the text of the Foward-ME response with key links.

Viewing our proposal

We’re inviting international patient and advocacy organizations and other stakeholders to review and comment on our proposal.

In order to view our proposal in the “Proposal Mechanism” you will first need to register with the Beta platform (you can register, if you wish, using an existing social media, Yahoo, Google or MS account).

Register for access here: http://bit.ly/ICD11Registrationpage

There is a short tutorial video on how to register, here: http://bit.ly/ICD11regtutorial

Once you are registered and logged in, go straight to this page to view and comment on our proposal: http://bit.ly/commentICD11

For ease of access, we’ve put a copy of our Proposal and Rationale into a PDF, which you can download here:

Suzy Chapman, Mary Dimmock Proposal for ICD-11

If you are commenting on behalf of an organization, please state the organization’s name and in what capacity.

If you agree with our proposal, the “Agree” button is located directly under the blue Reference links.

If you would like to leave a comment on our proposal, the Comment box is located right at the bottom of the web page, under the most recent comment.

Here is a Q & A addressing some of the questions raised in relation to our proposal:

Q & A version 1, April 2017

Proposal for the ICD-10 G93.3 legacy terms for ICD-11, submitted by Suzy Chapman and Mary Dimmock on March 27, 2017

PDF: http://bit.ly/Proposal111QA

For a summary of our proposal see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two
For background to Part Two see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part One
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Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform: Letter to key Revision personnel

Post #322 Shortlink: http://wp.me/pKrrB-45z

Update: June 12, 2015: This situation is now being looked into by a member of the recently assembled ICD-11 Project Management team.

As previously posted:

Although the development process for ICD-11 has been in progress for eight years, it’s still not known how ICD Revision proposes to classify the ICD-10 G93.3 legacy terms.

On June 8, I sent a letter, via email, to WHO/ICD Revision, requesting a prompt resolution to this situation:

For the attention of Bedirhan Üstün (WHO/ICD Revision Coordinator, Project Management Team)

CC:

Dr Margaret Chan (Director-General, WHO)
Robert Jakob (Medical Officer, WHO ICD classifications)
Christopher Chute (Chair, ICD-11 Revision Steering Group)
Tarun Dua (lead WHO Secretariat for Topic Advisory Group for Neurology)
Raad Shakir (Chair, Topic Advisory Group for Neurology)
Marjorie S. Greenberg (ex-officio NCHS, WHO-FIC, ICD-11 Revision Steering Group member, team member external assessors for ICD revision process)
Anneke Schmider (WHO Technical Officer, ICD Revision Project Manager)
J Ties Boerma (ICD Revision Project Management team)
Ségolène Aymé (founder Orphanet, chair of ICD-11 Topic Advisory Group for Rare Diseases)
Stefanie Weber (DIMDI German Institute of Medical Documentation and Information, WHO-FIC)


Re: Continued absence of the ICD-10 G93.3 legacy entities from the public version of the Beta drafting platform


Monday, June 8, 2015

Dear Dr Üstün,

At the end of May, a frozen release was posted for the ICD-11 Beta draft.

I remain extremely concerned that there are still no entries in the public Beta, within any linearization, for the three ICD-10 G93.3 legacy entities:

Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Chronic fatigue syndrome

As you are aware, these three entities (plus a dozen or so synonym terms) were removed without explanation from the Diseases of the nervous system chapter of the public version of the Beta draft, in early 2013.

Consequently, for over 2 years, stakeholders throughout the world have been unable to view evolving proposals for the classification of these entities within ICD-11 or to scrutinise proposed chapter location, proposed hierarchies, proposed Definitions and other Content Model parameters.

It is very difficult to monitor, make comments or suggestions where terms are not represented within the draft.

A request submitted by me, in February, via the Proposal Mechanism, to restore these entities to the public Beta has produced no response.

While these three entities remain absent from the Beta draft, stakeholders are effectively disenfranchised from participating in the revision process.

Since the start of the revision process, in 2007, no progress reports, editorials or journal papers have been published on behalf of TAG Neurology discussing the work group’s deliberations for these specific entities.

Since early 2013, when the three entities were removed from the public Beta, there has been no information available, at all.

I am aware that in March 2014, enquiries had been made by English and Scottish Health Directorates and that WHO was jointly approached by several UK registered ME/CFS patient organizations and English parliamentarians. The WHO’s response, at that point, was that proposals for the classification of these terms was unresolved and that more time and more input from the work groups was required [1].

A year later, the need for clarification for current proposals remains unmet.

Given the level of concern amongst stakeholders, globally, would you please look into this matter?

Could you please expedite the restoring of these terms to the Beta draft, with a Change History, in order that the ICD-11 development process can be inclusive of the thousands of clinicians, researchers, allied health professionals, advocacy organizations and patients with a stakeholder interest in the classification of these terms.

If it is not possible to restore terms to the Beta while a freeze is in operation, could TAG Neurology be instructed to issue an immediate statement of intention for these terms, in the interim?

Many thanks in anticipation of a swift resolution.

Sincerely,

Suzy Chapman

1 Correspondence, Scottish Health Directorate and WHO, March 2014, obtained under FOI.

Background to this letter:

In ICD-10 Version 2015:

Postviral fatigue syndrome is coded in Chapter VI: Diseases of the nervous system (the Neurology chapter), at code G93.3, under parent class G93 Other disorders of brain (view here).

Benign myalgic encephalomyelitis is the inclusion term to Postviral fatigue syndrome and assigned the G93.3 code.

Chronic fatigue syndrome is not included in ICD-10 Volume 1: The Tabular List but is indexed to G93.3 in ICD-10: Volume 3: The Alphabetical Index.

(The orange symbol denotes an Index term)

ICD102015

Proposals for ICD-11

In May 2010, a change to the hierarchical relationship between the three terms had been proposed. Whereas Postviral fatigue syndrome had been the Title category term for ICD-10, Chronic fatigue syndrome was proposed as the Title category term for ICD-11.

As part of a substantive reorganization of the Neurology chapter, the parent class, G93 Other disorders of brain (under which the ICD-10 categories G93.0 thru G93.9 were located), is proposed to be retired for ICD-11.

This has meant that the terms that sat under the G93 parent class for ICD-10 would need to be relocated under alternative parent classes for ICD-11 or have new parent classes created for them.

In July 2012, the public version of the ICD-11 Beta drafting platform had stood as in my screenshot, below.

It’s not evident in my 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.

At this point, around 14 historical or alternative terms were listed under Synonyms. These additional uncoded for terms, which had included the ICD-10-CM R53.82 terms, chronic fatigue, unspecified and chronic fatigue syndrome nos, had been scraped from other classification and EMR systems as part of the Beta drafting process :

July2512

Source: ICD-11 Beta drafting platform, July 25, 2012.

In November 2012, ICD Revision inserted a scrappy Definition for Chronic fatigue syndrome (this replaced an earlier draft ICD-11 Beta Definition). I have sourced this draft Definition to an internal ICD Revision/Stanford Protege document (line 1983):

Chronic fatigue syndrome is characterized by extreme chronic fatigue of an indeterminate cause, which is disabling andt [sic] does not improve with rest and that is exacerbated by physical or mental activity.

The “Selected Cause” sub linearization was later removed from the public Beta draft and some of the terms that had been listed under it were restored to the Neurology chapter and to other chapters. But Title term, Chronic fatigue syndrome, its Inclusion term and its list of Synonyms were not restored to any chapter.

Since February 2013, no listing can be found in any chapter of the public version of the Beta draft, under any linearization, for any of the terms, Postviral fatigue syndrome, Benign myalgic encephalomyelitis or Chronic fatigue syndrome, either as uniquely coded for ICD Title terms, or as Inclusion terms or as Synonyms to Title terms, or listed in the ICD-11 Beta Index.

So currently, there is no information within the Beta draft for proposals for these three terms.

The public version of the Beta drafting platform displays no editing “Change History” or “Category Notes” for these terms and their continued absence from the draft is hampering professional and public stakeholder scrutiny, discourse and comment.

This is not acceptable for any disease category, given that ICD Revision is promoted by WHO’s, Bedirhan Üstün, as an open and transparent process that is inclusive of all classes of stakeholder. The recent external review of the revision process has called for greater transparency [1].

Since June 2013, my repeated requests for an explanation for the absence of these three terms from the Beta draft and for ICD Revision’s intentions for these terms were ignored by ICD Revision until July 2014, when a response was forthcoming from ICD Revision’s, Dr Geoffrey Reed.

It is understood that Annette Brooke MP also received a response, in July 2014, from WHO’s, Dr Robert Jakob, in respect of the joint organizations’ letter of March 18, for which Ms Brooke had been a co-signatory [2].

What clarifications have been given?

WHO and ICD Revision’s, Dr Geoffrey Reed (Senior Project Officer, Revision of Mental and behavioural disorders), have said 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.

Dr Reed has said that the easiest way to make this absolutely clear will be through the use of exclusion terms. However, he has said that he would be unable to request 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; that at such time, he would be happy to do so.

In August 2014, I submitted two FOI requests, one to the Scottish Health Directorate, one to the English Department of Health. The latter was not deemed specific enough in terms of named health agencies for a response to be generated, but I did receive information regarding the former.

Extract from FOI Response: September 24, 2014: FOI request fulfilled by (SCOTLAND) ACT 2002 (FOISA),

Information held covering the time period indicated relates to an email exchange on 11 and 12 March 2014 as part of a request for advice in answering Ministerial correspondence.

On 11 March the World Health Organisation WHO were asked “I would be very grateful for your help in confirming the status of an element within the WHO’s ICD 11 regarding ME/CFS. On 25th February in the UK parliament, the Under-Secretary of State for Health informed the UK parliament that the WHO had publicy stated that there was no proposal  to reclassify ME/CFS in ICD-11…I would be very grateful if you can confirm that this is the case and if possible, provide a web link to the original wording so I can include this within the correspondence I am preparing”.

The WHO responded on 12 March; “The question regarding MS/CFS [sic] and ICD-11 has been asked recently by several different parties. At this point in time, the ICD-11 is still under development, and to handle this classification issue we will need more time and input from the relevant working groups. It would be premature to make any statement on the subject below.

The general information on ICD Revision can be accessed here: http://www.who.int/classifications/icd/revision/. The current state of development of ICD-11 (draft) can be viewed here (and comments can be made, after self registration): http://www.who.int/classifications/icd11 ”.

A further email on 12 March to the WHO asked; “It would be fair to say then …that work will continue on the draft with an expected publication in 2015?”.

WHO responded on 12 March; “Work on the draft will continue until presentation at the World Health Assembly in 2017**. Before, reviews and field testing will provide input to a version that is available for commenting, as much as possible and proposals can be submitted online* with the mechanisms provided already.”

*Since the three terms are currently not accounted for within the Beta draft this impedes the submission of comments.

**Rescheduled in May, this year; the proposed target for presentation for WHA approval is currently May 2018.

This is all that has been disclosed by WHO/ICD Revision in respect of current proposals for the classification of the three ICD-10 G93.3 terms, despite the fact that ICD-11 has now been under development for 8 years, and prior to the timeline extension in January 2014, the new edition had been scheduled for WHA approval and dissemination in 2015.

There remain 6 important questions to be answered by WHO/ICD Revision:

• under which chapter(s) are PVFS, BME and CFS proposed to be located?
• under which parent classes?
• what hierarchies are proposed, in terms of coded for Title terms, Inclusions, Synonyms?
• which of the terms are to be assigned definitions?
• where will definitions be sourced from?
• when will the terms be restored to the draft to enable scrutiny and comment?

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 errors and omissions.

References and related posts

1 ICD-11 Revision releases External review and Response: shifts projected WHA adoption to 2018

2 Joint Open letter to WHO/ICD Revision over classification of absent G93.3 terms for ICD-11 Beta draft

3 ICD-11 Revision releases External review and Response: shifts projected WHA adoption to 2018

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

5 Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2

6 Summary of responses from WHO re: Bodily distress disorder, Bodily stress syndrome, Bodily Distress Syndrome

Action for M.E. submission to third and final DSM-5 public review (closes June 15)

Action for M.E. submission to third and final DSM-5 public review (May 2 – June 15 2012)

Page #179: Shortlink: http://wp.me/pKrrB-2eC

A reminder there are just 4 days left in which to submit feedback.

Comment period scheduled to close June 15.

Organizations, professionals, patients and advocates submitting comments in the third DSM-5 draft proposal review process are invited to provide me with copies of their submissions for publication. Submissions to the third and final DSM-5 public review are being collated on this page: http://wp.me/PKrrB-1Ol

Today, Action for M.E., has forwarded its response to the third draft:

Action for M.E.

DSM-5 Action for M.E. response

12 June 2012

Action for M.E. has formally commented on the latest draft of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), due to be published in May 2013 by the American Psychiatric Association (APA).

We told the APA that:

“Action for M.E. notes the revised draft of DSM-5 and remains opposed to any attempt to classify CFS/M.E. as a somatic symptom disorder either explicitly or implicitly.

Comments made previously in the APA Work Group on somatoform disorders and in public by Dr Dimsdale, the SSD Work Group Chair, are far from reassuring in this respect.

Regrettably there are still General Practitioners in the UK who fail to take CFS/ME seriously and are ill informed about how to achieve a specific diagnosis. So there should be nothing in DSM-5 that will give any support to outdated views that are severely detrimental to patient care.

The presumption that ME/CFS is a somatic symptom disorder is not supported by the increasing body of research evidence pointing to the existence of underlying physical pathology. While not challenging the underlying structure of DSM-V, in our view ME/CFS would be appropriately classified in sections S03 or S04, mild or severe neurocognitive disorders secondary to underlying physical diseases, in particular neurodegenerative diseases.”

We have also responded to previous drafts.

Related content and posts:

Somatic Symptom Disorders, DSM-5 Development site

Call to action – DSM-5 comments needed by June 15, 2012:  http://wp.me/pKrrB-2bO

Somatic Symptom Disorder criteria could capture millions more under mental health diagnosis: http://wp.me/pKrrB-29B

DSM-5 Somatic Symptom Disorders: Differences between second and third draft for CSSD: http://wp.me/pKrrB-27y

DSM-5 Somatic Symptoms Work Group submissions 2012: Last chance to tell SSD Work Group why it needs to ditch unsafe and scientifically flawed proposals: http://wp.me/pKrrB-26q

Action for M.E. publish news item on DSM-5

Action for M.E. publish news item on DSM-5

Post #87 Shortlink: http://wp.me/pKrrB-1a1

Yesterday, UK patient organization, Action for M.E., published an item around the DSM-5 proposals on its News pages and confirmed that it does intend submitting comment in the second DSM-5 public review exercise. Last year’s submissions from international organizations, professionals and patient advocates are collated on this page .

To the best of my knowledge, Action for M.E. is the only organization to have confirmed, so far, that it intends to submit comment in this second stakeholder review of draft criteria for the revision of DSM-IV.

The closing date for comments is June 15.

Register to submit feedback via the DSM-5 Development website: http://tinyurl.com/Somatic-Symptom-Disorders

More information on registration and submissions: http://tinyurl.com/DSM-5-register-to-comment

From the News pages of Action for M.E.

USA: complex somatic symptom disorder

01 June 2011

US patient organisations are lobbying against proposals to include a new psychiatric category, Complex Somatic Symptom Disorder (CSSD), in the American Diagnostic and Statistical Manual of Mental Disorders (DSM).

Version four of the manual (DSM-4) is under revision and version five (DSM-5) is due to be published May 2013.

The publication, which is produced by the American Psychiatric Association (APA), contains listings, definitions, and explanations of different psychiatric and psychological disorders.

In a letter last year, the CFIDS Association of America strongly urged the DSM-5 Task Force to abandon the proposed creation of CSSD saying:

The proposed DSM-5 revision correctly does not identify chronic fatigue syndrome (CFS) as a condition within the domain of mental disorders and the DSM. However, past discussions of the Somatic Symptoms Disorder Work Group have included such physiological disorders as chronic fatigue syndrome, irritable bowel syndrome and fibromyalgia as ‘somatic presentations of mental disorders.

…As drafted, the criteria for CSSD establish a ‘Catch-22’ paradox in which six months or more of a single or multiple somatic symptoms is classified as a mental disorder if the individual becomes ‘excessively’ concerned about his or her health.

The Massachusetts CFIDS/ME & FM Association says:

The way CSSD is defined makes it possible to either mistakenly or intentionally diagnose CFIDS/ME or Fibromyalgia in this psychiatric category. Moreover, the greater concern is whether this change could potentially lead to the reclassification of these illnesses as psychiatric conditions under CSSD.

The APA DSM-5 developmentsite says the draft is open for comment until 15 June.

UK campaigner Suzy Chapman has set up a website, Dx Revision Watch, which has further information.

Action for M.E. commented in response to the first consultation and will make a further representation in response to the second.

[Ends]

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