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

April 22, 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.

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.

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

  1. Dx Revision Watch

    The classification of the G93.3 legacy categories for the next edition of ICD may negatively influence both the perceptions of the disease and the clinical care that patients receive, throughout the world. It is crucial that international organizations and their clinical and research allies take some time to review our proposal, register with the Beta draft and submit a considered response. We are delighted to have the support of Forward-ME.

    We are inviting patient and advocacy organizations and other stakeholders to review and comment on our Proposal. Over 40 international organizations have commented to date. There have been 530 “Agrees” and over 350 comments.

    Comments will only be accepted via the Beta “Proposal Mechanism.” If you are commenting on behalf of an organization, please state the organization’s name and your capacity as a spokesperson.

    The “Agree” button is directly beneath the blue “References” links at the end of our Proposal and Rationale.

    The “Comment” box is located right at the bottom of the web page.

    Viewing our proposal

    In order to view our Proposal in the ICD-11 Beta “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).

    For ease of access, we’ve put a copy of the full proposal and rationale in a PDF, here:

    The ICD-11 Beta draft registration page is here:

    If you need some help negotiating the registration process there is a short ICD Revision “How to Register” Tutorial here:

    Once registered and logged in:

    To view our proposal, “Agree” or Comment go straight to this page:

    Additional materials:

    There is a summary post on our proposal setting out the key recommendations, here:

    We’ve put a copy of the full proposal and rationale in a PDF, here:

    There is a single page “Key points on current ICD-11 Beta status for the G93.3 legacy terms” here:

    There is a Q & A on our proposal and information about the ICD-11 development process in PDF format “Q & A version 1, April 2017”, here:

    Suzy Chapman and Mary Dimmock

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