Joint Open letter to WHO/ICD Revision over classification of absent G93.3 terms for ICD-11 Beta draft
March 18, 2014
Post #301 Shortlink: http://wp.me/pKrrB-3Pp
Today, Sonya Chowdhury, CEO, Action for M.E., has released an Open Letter to Dr Ra’ad Shakir, Chair, ICD-11 Revision Topic Advisory Group for Neurology.
The Open Letter has been copied to Tarun Dua, Managing Editor, Neurology Topic Advisory Group, WHO; Christopher Chute, Chair, ICD Revision Steering Group, WHO; Dr Geoffrey Reed, Senior Project Officer, International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, ICD-11, WHO; Dr Margaret Chan, Director General, WHO; Dr Robert Jakob, MD, Medical Adviser, WHO.
In the interests of transparency, I have acted in an advisory capacity in the preparation of this joint letter in respect of existing ICD-10 coding, proposals for the G93.3 terms for ICD-11, as they had stood in January 2013, and around Beta drafting platform technicalities.
Open letter to WHO over classification
18 March, 2014
Action for M.E.
Chief Executive Sonya Chowdhury has written an open letter to Dr Ra’ad Shakir, Chair of the World Health Organisation neurology topic advisory group, regarding concerns over the classification of M.E./CFS in the WHO ICD-11.
There has been concern within the M.E. community that the three ICD-10 G93.3 terms, PVFS (Postviral Fatigue Syndrome), BME (Benign Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) have been missing from the public version of ICD-11 Beta draft since early 2013.
The letter which has been produced collectively, is also signed by Annette Brooke MP, Chair of the All Party Parliamentary Group on M.E., the Countess of Mar, Chair of the House of Lords-led group Forward ME, and Dr Charles Shepherd, Medical Adviser of the ME Association who, like Sonya, is a member of the APPG secretariat.
The PDF of the joint letter can be read here:
Click to access who-icd-11-letter-17-3-14-sc.pdf
Open PDF here: 
Joint Open Letter to WHO/ICD 03.18.14
Text
OPEN LETTER
Dr Ra’ad Shakir
Chair, WHO Neurology Topic Advisory Group
Chief of Neurology
Imperial College NHS Trust
Charing Cross Hospital
London17th March 2014
Dear Dr Shakir
Re: WHO ICD-11 Beta draft classification
We are writing, collectively, on behalf of the estimated 250,000 people with M.E./CFS. in the UK.
As you may be aware, there has been considerable discussion and concern expressed within the M.E./CFS community regarding the WHO ICD-11 classification.
As both individuals and organisations, we have received a number of questions and concerns from people affected by M.E./CFS and are therefore writing to seek clarification to enable us to respond accordingly.
We are keen to work collaboratively with others to help empower and support people affected by M.E. and as such, would be very happy to discuss this further with you directly or welcome you to a meeting of either the All Party Parliamentary Group on M.E. or Forward M.E. (a House of Lords-led collaboration).
A summary of our current understanding
The three ICD-10 G93.3 terms, PVFS (Postviral fatigue syndrome), BME (Benign myalgic encephalomyelitis) and CFS (Chronic fatigue syndrome) have been missing from the public version of ICD-11 Beta draft since early 2013.
Prior to early 2013, in the public version of the ICD-11 Beta drafting platform, Chronic Fatigue Syndrome had been listed in the Foundation Component as an ICD Title entity under Diseases of the nervous system, with Benign Myalgic encephalomyelitis specified as an Inclusion term and Postviral fatigue syndrome listed under Synonyms to the Chronic Fatigue Syndrome Title entity. Therefore, all three terms were accounted for within the Beta draft; the terms were then removed from the public version of the Beta draft.
Currently, no entry for any of the terms, CFS, BME or PVFS, under any hierarchy, can be found within any chapter of ICD-11 Beta in the Foundation or the Morbidity and Mortality linearization, the top level category list, the PDF print version or the PDF Alphabetical Index.
The replies that WHO Twitter admin gave to members of the public who enquired about this, stated that there was no proposal to include ME, CFS or Fybromyalgia as Mental and behavioural disorders in ICD-11. They did not say (as Parliamentary Under-Secretary of State for Health, Jane Ellison MP stated in response to a question from Annette Brooke MP) no proposal to reclassify ME/CFS in ICD-11 (¹ Hansard, House of Commons, Oral Answers to Questions, Tuesday, February 25, 2014).
A member of the public also asked on Twitter if there is a proposal to reclassify ME, CFS and Fybromyalgia as “Bodily Distress Disorders” in ICD-11, but no reply was forthcoming from WHO Twitter Admin. Also, they did not confirm a proposal to retain in Chapter 07, only not to include in Chapter 05.
Points of clarification requested
1. Under which chapters and parent categories are the following three ICD-10 G93.3 entities currently proposed to be classified within ICD-11:
Chronic Fatigue Syndrome;
Benign Myalgic encephalomyelitis;
Postviral fatigue syndrome?2. What is the current proposed hierarchy or relationship within ICD-11 between these three entities, in terms of Title term, Inclusion term, Synonym, and which of these three terms are proposed to be assigned a Definition and other “Content Model” parameters?
3. What is the reason for these three terms not currently displaying in the public version of the Beta drafting platform?
4. When does ICD-11 Revision intend to restore these three terms to the public version of the Beta drafting platform?
We very much appreciate you taking the time to respond to our request and look forward to hearing from you.
Yours sincerely
Sonya Chowdhury, CEO, Action for M.E.; Secretariat, All Party Parliamentary Group on M.E.
Annette Brook MP; Chair, All Party Parliamentary Group on M.E.
Countess of Mar; Forward M.E., House of Lords
Dr Charles Shepherd, Medical Adviser, ME Association; Secretariat, All Party Parliamentary Group on M.E.c.c.Tarun Dua, Managing Editor, Neurology Topic Advisory Group, WHO
Christopher Chute, Chair, ICD Revision Steering Group, WHO
Dr Geoffrey Rees [sic], Project Manager, Mental & Behavioural Chapter, ICD-11, WHO
Dr Margaret Chan, Director General, WHO
Dr Robert Jakob, MD, Medical Adviser, WHOAction for M.E.
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