Wrong classification ME


I think you'll find the following very enlightening.

I wrote to Tony Wright M.P. Chairman of the APPG on ME informing him of the serious problem to be found on the nhsia website.  The general gist of the letter was as follows.

The Mental Health Minimum Data Set (MHMDS) Data Manual, found on the nhsia (National Health Service Information Authority) website erroneously claims CFS to be a mental
disorder under the WHO classification code of F48.0, which relates to mental, behavioural & Neurotic disorders.  It can be read at,


The error was reported to the nhsia on 7th April 2003 and after some time and investigation the nhsia agreed that the mental disorder classification F48.0 for CFS was indeed wrong.
However I was then informed that a decision had been taken not to alter the Data manual on the grounds that the source of information is the WHO Guide to Mental Health in Primary Care, and the MHMDS Data Manual has to maintain consistency with that guidance.

I explained this was a particularly disturbing development,especially now that, although disgracefully late with approximately 30,000 copies of the 'WHO Guide' sold and the
second edition in sight, an erratum slip has been sanctioned for the 'Guide' by Professor Rachel Jenkins, Director of the WHO Collaborating Centre, Institute of Psychiatry, and the
downloadable version of the Guide is to be amended.

The erratum slip draft reads;

Important notice regarding Chronic Fatigue Syndrome

"Please note that on page 35 Chronic Fatigue Syndrome is a research/clinical definition which was established after the production of ICD10, and therefore was not considered at the
time.  In ICD10 neurasthenia is coded as F48.0 in Ch V Mental and Behavioural Disorders, while M.E. is coded as G93.3 in Ch VI, Diseases of the Nervous System.  Subsequently, the
1994 index to ICD10 connects fatigue syndrome to F48.0 and chronic fatigue syndrome to G93.3"
I asked Tony Wright if he would make pressing enquiries as to why, some five months after complaints were registered, the Mental Health Minimum Data Set (MHMDS) Data Manual still contains this misinformation given that classification codes are easily verifiable via the World Health Organisation Headquarters, Geneva.

I received a reponse within 2-3 days from Tony Wright saying he would make enquiries.  He recently forwarded me a copy of the extremely interesting, informative letter he received in reply to the enquiry, a copy of which I will post shortly, as part 2.



Hi again Folks,

This is Part two and it's a letter from Steven Harrison to Tony Wright MP, Chairman of the APPG on ME .

I have contacted Steven Harrison several times but unfortunately have not managed to get a reply.  Thankfully he did reply to Tony Wright and we now all have an idea of what's happening which
I'm sure you'll agree is very enlightening.

Take care


NHS, Information Authority, Aqueous ll, Aston Cross, Rocky
Lane, Birmingham, B65RQ.

To Tony Wright

Chair of APPG on ME

Member of Parliament for Great Yarmouth

Dear Mr Wright

Thank you for your letter dated 8 September 2003 advising of a complaint you have received from an ME sufferer over information contained in the Mental Health Minimum Data Set
data manual, found on the NHS Information Authority web site.

The Authority did indeed receive comments from individuals relating to this medical coding in April of this year. Since then the Authority has been working closely with the Institute of
Psychiatry, specifically Professor Rachel Jenkins, to try to clarify why this condition has been coded as it has.

Within NHS secondary care, the International Statistical Classification of Diseases! and Related Health Problems tenth revision, (ICD-10) is the mandatory standard for coding
diagnostic statements. Within this classification the condition Chronic Fatigue Syndrome (CFS) or Benign myalgic encephalomyelitis is coded within the diseases of the nervous
system chapter (G93.3) The use of the code F48.0 Neurasthenia including Fatigue Syndrome would only be assigned if there was an appropriate clinical statement.

It appears, however, that the Mental Health Minimum Data Set:Data Manual, Version 2.0, July 2001, produced by the Authority and which appears on our web site has referenced the WHO Guide to Mental Health in Primary Care which, with the permission of the WHO, has been adapted by the UK and produced by the Institute of Psychiatry, London from the
Diagnostic and Management Guidelines for Mental Disorders in Primary Care : ICD-10 Chapter 15, Primary Care Version. In this UK adaptation CFS has been assigned with the code F48.0 under the Chapter for mental disorders.
This, of course, causes an anomaly with the full International Statistical Classification of Diseases and Related Health Problems (ICD-10). It is this anomaly that the Authority has been trying to clarify with Professor Jenkins at the Institute of Psychiatry, London. Originally, the Institute was going to republish its adaptation of the WHO Guide to Mental Health in
Primary Care in May of this year but delayed it because of our querying of this classification in question. I believe that,unfortunately, Professor Jenkins has been abroad for the
majority of the summer, which has delayed discussions and agreement on a consistent use of the classification. Discussions with Professor Jenkins are to resume shortly and I believe a
resolution of the matter is hoped for by the end of October.

I hope this information is helpful and provides the clarification you seek.

Steven Harrison

Head of Corporate Affairs and Governance