April 28, 2017
Post #335 Shortlink: http://wp.me/pKrrB-4gL
The revision of the World Health Organization’s ICD-10 and development of ICD-11 was launched in 2007.
After several extensions to the timeline, WHO plans to present a version of ICD-11 at the World Health Assembly, in May 2018, with the intention of releasing the new edition at some point later that year. Endorsement will be sought later.
In order to be ready to present in May 2018, the final round of editing will need to have been completed by the end of 2017.
This November 2016 presentation by WHO’s Dr Robert Jakob sets out the targets and timelines, as they had stood last year.
There was a March 30 deadline for submission of proposals for consideration for inclusion in the 2018 version. Proposals received after that date are expected to be rolled forward for consideration for inclusion in the first annual maintenance and update revision of the new edition, in 2019.
On March 27, UK and US advocates, Suzy Chapman and Mary Dimmock, submitted a formal proposal via the ICD-11 Beta draft Proposal Mechanism for the restructure of the ICD-10 G93.3 legacy categories: Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome.
For a summary of the proposal see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two
International stakeholder support
There has been considerable support for the proposal, with over 540 “Agrees.” International patient, advocacy and research organizations and individual stakeholders have submitted more than 370 comments.
To date, these organizations have submitted responses:
Invest in ME Research
Hope 4 ME & Fibro Northern Ireland
The Devon ME Support Group
Forward-ME A group convened and chaired by the Countess of Mar. The members are:
ME Research UK
Action for M.E.
Blue Ribbon Awareness of ME (BRAME)
The 25% ME Group
Invest in ME
Open Medicine Foundation
NJ CFIDS organization
Solve ME/CFS Initiative
The Massachusetts CFIDS/ME & FM Association
The National ME/FM Action Network (Canada)
ME/FM Society of BC, Canada
Millions Missing Canada
The AQEM (Association québécoise de l’encéphalomyélite myalgique du Québec)
RME The Swedish Association for ME
Norges Myalgisk Encefalopati Forening (Norway)
The Belgian ME Association
The Danish ME Association
Groep ME Den Haag (Netherlands)
ME/cvs Vereniging, Nederland
Deutsche Gesellschaft für ME/CFS (Germany)
The European ME Alliance (EMEA) The alliance comprises:
Belgium ME/CFS Association
ME Foreningen (Denmark)
Suomen CFS-Yhdistys (Finland)
Fatigatio e.V. (Germany)
Het Alternatief (Netherlands)
Icelandic ME Association
The Irish ME Trust
Norges ME-forening (Norway)
Liga SFC (Spain)
Riksföreningen för ME-patienter (RME) (Sweden)
Verein ME/CFS Schweiz (Switzerland)
Invest in ME (UK)
ME/CFS Australia (SA)
ME/CFS and Lyme Association of WA Committee
NZMEAction, New Zealand
The Japan ME Association
Facebook groups and other groups
Race to Solve ME/CFS
Global Advocates for ME
Friends for Honesty about ME
Support for the Followers of Dr Myhill’s Protocol
Viewing our proposal
We are inviting international patient and advocacy organizations and other stakeholders to review and comment on the proposal.
In order to view the 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
When 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, here:
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 “add new comment” box is located right at the bottom of the web page, under the most recent comments.
Here is a Q & A addressing some of the questions raised in relation to our proposal:
Q & A version 1, April 2017 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