13. februar 2004 


In a groundbreaking move, the UK edition of the WHO Primary Care Treatment Guide will no longer link the coding of CFS and M.E. to different classifications - psychiatry and neurology.  Both will now be linked to only the neurology codes. The editors of the UK Edition of the WHO Guide have decided to unify CFS and M.E. in a single code, G.93.3. which is a neurological code. The new edition of the Guide, will be published in the next few weeks and includes neurological as well as mental conditions.

 



EXTRACT FROM A STATEMENT BY THE INSTITUTE OF PSYCHIATRY 11.2.2004.


"The Editors of the UK Edition of the WHO Primary Care Guide are aware of the disquiet that has been expressed about the controversial issue of the coding of chronic fatigue syndrome (CFS), which may be referred to as ME.
 

In the light of representations over a number of months from the leading UK patients' charity, Action for ME, it has been decided that CFS/ME will be coded solely as G93.3 in the new edition of the Guide.


We emphasise that the advice and information given for sufferers, practitioners and carers has not changed.


It is hoped that this coding amendment, which has not been made because of any new research findings, will enable sufferers, carers and practitioners to look beyond the vexed question of classification and return to focussing on advice and support."

 

 

Statement by Action for M.E.                                 

 
This move by the WHO Collaborating Centre to unify the codes under the Chronic Fatigue /M.E. neurology coding is a sign that they have listened to the patient voice and acted to remove a problem that has diverted attention from the real issues - which are to undertake a thorough programme of research and provide health care that reflects the severity of this disabling and distressing illness.


"Many in the field have believed that M.E. may not be a single illness but may consist of a number of different sub-groups.  But without research this belief cannot be proven or definitions and names properly attributed to sub-groups.


Yet when issuing a diagnosis doctors have used various names, calling it M.E., or CFS (Chronic Fatigue Syndrome) or PVFS (Post Viral Fatigue Syndrome).  Our organisation has always favoured M.E. whilst knowing it to be imperfect.  But the choice of names has often seemed to reflect a particular doctor or patients preference rather than a scientific difference.  From a patient perspective the name given has sometimes felt like a lottery.


The question of names itself has caused confusion. 

 
And to compound an already confused field, the first edition of the UK version of the WHO Primary Care Treatment Guide renamed "neurasthenia" as Chronic Fatigue Syndrome - because this is a diagnosis increasingly used by doctors, whereas neurasthenia was an historical anachronism, being no longer in general use in the UK.

 

Unfortunately the consequence was that CFS was thereby linked in the Guide to an "F" or psychiatric coding, whilst M.E. remained an exclusively neurological code.

 

As a consequence some patients newly diagnosed and searching for information have become concerned why a particular name was selected, and whether given the WHO classifications, a judgement has been reached by their doctor about the cause of their illness. This in turn has led to heated debate among some within the field.

 

In the light of representations over a number of months by Action for M.E. as the leading UK Charity, the Editors of the UK Edition of the WHO Guide have decided to unify CFS and M.E. in a single code, G.93.3 

 

G.93.3 is a neurological code.

 

The new edition of the Guide, will be published in the next few weeks and includes neurological as well as mental conditions. 

 

Professor Rachel Jenkins Director of the UK Collaborating Centre says:


"We have listened to the representations made by Action for M.E. and have changed the entry in the next edition of the Guide. We hope this will enable sufferers, carers and practitioners to look beyond the vexed question of classification to that of advice and support"

 

Chris Clark, Chief executive of Action for M.E. says:


"We appreciate the change made by the WHO UK Collaborating Centre and now look forward to moving toward research that will provide the answers to the mysteries of this illness."

 

Note:

 
In 2002 the Department of Health published a Report on CFS/ME recognising the illness as real and severe.  It recognized that whilst there was as yet no single identified cause, there were a number of factors that could predispose, trigger or maintain the illness.


The Medical Research Council followed up the government action by publishing a strategy for research, and recognising a need to study almost all aspects of the illness.