ME action blog post: Help secure the World Health Organisation’s classification of ME & CFS

Important call to action! We need all hands on deck for a simple, but important task.

The World Health Organisation (WHO) is reviewing its International Classification of Disease (ICD) for its upcoming 11th edition (ICD-11). There has been enormous concern about what was going to happen to how ME & CFS are classified in the new edition.

Suzy Chapman & Mary Dimmock have been working tirelessly on this issue, and they need our help. They need people to go into the ICD system and agree with their proposal and/or make a comment. Read their full proposal here.

Chapman and Dimmock recommend that the disease be listed as Myalgic Encephalomyelitis and Chronic Fatigue Syndrome for the “concept titles” for the disease. (The disease was previously indexed as “Benign Myalgic Encephalomyelitis” and “Postviral Fatigue Syndrome.” The recommendation is to change those titles since the disease is not benign, and not all cases are postviral. Postviral Fatigue Syndrome will be listed as a synonym of the disease.)

It’s also being recommended that ME and CFS  be retained under Chapter 08: “Diseases of the nervous system” and “Other disorders of the nervous system.”

The ICD-10 first came into use in 1994, with countries gradually adopting it over time. (The U.S. adopted the ICD-10 in 2015). It is only now being updated to the ICD-11, which means that the classifications for ME and CFS in ICD-11 will last a long time. It’s crucial that we take action now!

The deadline for comments on the ICD-11 is not yet clear but the sooner we submit our comments, the better to ensure that ME and CFS are properly classified in the new edition.

Follow these steps to show support for the classification:
1. Register at this link.

(Note: you may find that you can’t complete the registration form without naming an organisation to which you belong. You could consider registering as a #MEAction member or as member of a Facebook group.)

If you are having problems negotiating the registration page, check out short WHO tutorial.

2. Click on this link to see the proposal.

3. Scroll down through the proposal to the bottom where you’ll see: “Agree” and “Disagree” buttons.

Click “Agree.”

4. There is also an “Add comment” button, where you can add a comment. You’ll see comments from other people there. While it is not essential to add a comment, it is a good idea as some of the “Agrees” have disappeared from the system (there may be a bug in the form; no comments have disappeared). Adding a simple comment like, “I agree with this proposal,” will ensure that your support remains visible.

If you would like to make a more elaborate comment, the following are key points from the proposal, which you could use:

  • These three terms should continue to be classified in the neurological chapter, as was done in ICD-10, until such time that research provides the evidence to support a more appropriate classification.
  • The term “postviral fatigue syndrome” should be removed as the lead term because not all cases are postviral. Instead, the terms “chronic fatigue syndrome” and “myalgic encephalomyelitis” should be elevated to concept titles, each with their own separate code. This is necessary for correct disease tracking and for accurate population statistics.
  • The ICD-10 term “benign myalgic encephalomyelitis” should be modified to “myalgic encephalomyelitis” as the disease is not benign.
    Reciprocal exclusions should be added between these three terms and the word “fatigue” (as was done in ICD-10) and also between these terms and bodily distress disorder.
  • These terms should not be classified and/or dual parented in either the symptoms chapter or the mental health chapter in the ICD 11 Handbook.

5. Send this information to your local ME/CFS organisation, and ask them to support the proposal. – WAMES will be supporting.

Mary & Suzy also suggest:

  • If you are commenting on behalf of an organisation, please indicate the organisation’s name in your comment.
  • You won’t be able to edit, add additional content, or delete your comment once it has been submitted ‒ so you may want to prepare a draft, and copy and paste it into the field.
  • You can include references to papers, reports, etc. in support of your comments but you won’t be able to upload files.
  • At the moment, it is not clear by what date comments on proposals will need to be in by in order to be taken into consideration for the version of ICD-11 that is scheduled for release in 2018. The sooner, the better.

To receive updates on Suzy & Mary’s proposal, follow Suzy’s Twitter account: @dxrevisionwatch

For queries, email Mary or Suzy at:
Mary Dimmock: medimmock@gmail.com
Suzy Chapman: dxrevisionwatch@page1.myzen.co.uk

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One Response to Help secure the World Health Organisation’s classification of ME & CFS

  1. Suzy Chapman says:

    The Countess of Mar’s Forward-ME group has submitted a joint response to our proposal for ICD-11 on behalf of the members of Forward-ME (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).

    There is a PDF of Forward-ME’s response here:
    https://dxrevisionwatch.files.wordpress.com/2017/04/forward-me1.pdf

    These are the international organizations that have commented so far in support of the proposal.

    UK:
    The Devon ME Support Group
    Invest in ME Research, Chairman
    Hope 4 ME & Fibro Northern Ireland
    Forward-ME (Countess of Mar’s group on behalf of 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)

    USA:
    Open Medicine Foundation, Linda Tannenbaum
    PANDORA Org
    NJ CFIDS organization
    Solve ME/CFS Initiative, USA, Carol Head, CEO

    Canada:
    The National ME/FM Action Network (Canada), President
    ME/FM Society of BC, Canada, Board member
    Millions Missing Canada
    The AQEM (Association québécoise de l’encéphalomyélite myalgique du Québec, Canada,

    EU:
    RME The Swedish Association for ME, Chair
    Norges Myalgisk Encefalopati Forening – The Norwegian ME association, Secretary General
    The Belgian ME Association, Chair
    The European ME Alliance (EMEA), Chair on behalf of 13 members
    The Danish ME Association, Vice Chairman
    Groep ME Den Haag (Netherlands)
    The Dutch ME/cfs Association, Boardmember ME/cvs Vereniging, Nederland
    Deutsche Gesellschaft für ME/CFS, Daniel Hattesohl, Chairman of the DG-ME/CFS

    Australia:
    ME/CFS Australia (SA), President
    ME/CFS and Lyme Association of WA Committee

    New Zealand:
    NZMEAction, New Zealand, Boardmember

    Other International:
    The Japan ME Association (Tokyo, Japan)

    Facebook groups and other groups:
    Race to Solve ME/CFS
    M.E. Alliance, Wendy Boutilier
    Global Advocates for ME, Wendy Boutilier
    Friends for Honesty about ME, Wendy Boutilier
    Support for the Followers of Dr Myhill’s Protocol

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