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

Forward-ME Group backs proposal for G93.3 legacy terms for ICD-11

Post #333 Shortlink: http://wp.me/pKrrB-4gv

Forward-ME is a group of UK charities and voluntary organisations convened by the Countess of Mar, in order to promote effective joint working by M.E. and CFS organisations.

The organisations are ME Association, ME Research UK, Action for M.E., Tymes Trust, reMEmber CFS, Blue Ribbon Awareness of ME (BRAME), ME Trust, the 25% ME Group, and Invest in ME.

 

From the News pages of the ME Association

Forward-ME Group | ‘Vital that the new WHO classification continues to provide a bulwark against medical mismanagement of M.E.’ | 21 April 2017

The Forward-ME Group has responded to the latest proposals to update the classification of M.E. and CFS in the World Health Organisation’s next version of the International Classification of Diseases (ICD-11). Implicit in their comments below is recognition of the huge amount of work put into this project by ME/CFS advocates Suzy Chapman and Mary Dimmock.


THE FORWARD-ME GROUP STATEMENT BEGINS HERE

Forward-ME is a group of UK charities and voluntary organisations convened by the Countess of Mar, in order to promote effective joint working by M.E. and CFS organisations.

The organisations are ME Association, ME Research UK, Action for M.E., Tymes Trust, reMEmber CFS, Blue Ribbon Awareness of ME (BRAME), ME Trust, the 25% ME Group, and Invest in ME.

We are in agreement that, as proposed here, it is particularly important for Myalgic encephalomyelitis (M.E.) and Postviral fatigue syndrome – presently classified in the Chapter on Diseases of the nervous system [at G93.3] – to be retained in that chapter of the forthcoming ICD-11.

Along with commending the proposal’s intention to highlight and reinforce the severe and devastating impact of M.E., we would like to draw attention to the body of scientific material referred to in the rationale for the proposal [Rationale point 1: Scientific evidence that exists for neurological dysfunction; Rationale point 2: Recent federal agency reviews and scientific evidence].

This reflects growing evidence of neurological, immunological and endocrinological dysfunction and related biomarkers. However, we agree that current scientific evidence of neurological impairment and WHO/ICD Revision’s position on precedence [i.e. “legacy should trump with regard to the question of moving certain conditions to new chapters”] supports retention of chronic fatigue syndrome and myalgic encephalomyelitis in Diseases of the nervous system.

We support the proposal to move Postviral fatigue syndrome to a synonym under the Concept Title ‘Myalgic encephalomyelitis’. This recognises that not all instances of M.E. may result from a viral infection. We also agree with the proposed removal of the word ‘benign’ from the M.E. title, in keeping with the considerable medical complexity of this condition and its severe and lasting impact on patients.

The position in respect of ‘Chronic fatigue syndrome’ (CFS) is more complex:

  • CFS is listed in the WHO ICD-10 index only.
  • It is indexed to G93.3. Yet in practice the label ‘CFS’ is applied variably – both in research (with a multiplicity of definitions in use) and clinically.

Given the placement of ‘Fatigue syndrome’ in the WHO ICD-10 Mental and behavioural chapter [as a synonym under ‘Neurasthenia’ at F48.0], it was all but inevitable that the introduction of the term ‘Chronic fatigue syndrome’ to apply to a physical illness would cause confusion.

The confusion has a considerable impact on patients. For example, 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’ [Guidance for commissioners of services for people with medically unexplained symptoms 2017].

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.

In this regard securing appropriate exclusions is vital, and we endorse the proposal’s recommendations, as set out at Note 4. In particular, we note that the ICD revision intends that the F48.0 Neurasthenia category [where ‘Fatigue syndrome’ presently appears], together with almost all of the present F45 somatoform disorder categories, be subsumed in a single new category – currently suggested name ‘Bodily distress disorder’. We agree that there needs to be reciprocal exclusions for M.E. and for CFS for the ‘Bodily distress disorder’ category.

We also agree that reciprocal exclusions for M.E. and for CFS for the category ‘Fatigue’ [previously ‘Malaise and fatigue’] are essential.

[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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