Fri, 26 Jul 2002 

ME or not ME

Dr Charles Shepherd talks about the name debate.

 I'm not sure if you realise that the quote used - 'The inclusion in the
tenth revision of the International Classification of Diseases (ICD-10) of
benign myalgic encephalomyelitis as a synonym for postviral fatigue syndrome
(G93.3) under Diseases of the Nervous System seems to be an important moral
victory for self help groups in the UK who promote the notion of myalgic
encephalomyelitis (ME) despite almost universal scepticism of the
appropriateness and accuracy of this term among neurologists' - from the
1993 letter that Simon Wessely and Anthony David sent to the Lancet was
directly referenced to a report I wrote for the British Medical Journal
(ref: Shepherd C. Description of ME revised in Disability Handbook, BMJ,
1993, 307, 869) on the negotiations with Dr Mansel Aylward at the Department
of Social Security which had resulted in some very important changes to the
entry on ME/CFS being made in the DLAAB handbook (a key source of
information for DSS adjudicators).

 Unfortunately, despite Simon's view that this was a 'moral victory' for
self-help groups, there was also a very strong and growing campaign at this
time, mainly involving psychiatrists on both sides of the Atlantic, to
completely eradicate the term myalgic encephalomyelitis from medical
language. And they had a considerable degree of success as it became almost
impossible to use the term ME in the medical journals. Politically correct
doctors also began to dump the term ME during clinical consultations in
favour of CFS. Those doctors who were hostile or unsympathetic the notion
that ME (or CFS) might be a distinct clinical entity also found it a good
excuse to tell their patients that 'there's no such thing as ME'.

 My own view, as set out in quite a lengthy review of the name change debate
that I wrote for the Winter 2001 edition of Perspectives (p 20)is that we
have now reached the point where there just isn't enough robust scientific
evidence to continue to maintain that encephalomyelitis (= inflammation
involving the brain and spinal cord) is a pathologically correct explanation
for the type of brain abnormalities (as demonstrated by hormone studies,
neuroimaging etc) that undoubtedly do occur in this disease. However,
although it's not perfect, it is possible to argue with the medical
establishment that the term encephalopathy could be applied to these
abnormalities, and in so doing the term ME can be maintained with
justification.

 I fully appreciate that some people with ME/CFS didn't like the way the CMO
report dealt with the issue of nomenclature and definition. I,
incidentally, argued very strongly as a Key Group member that the report
should have been much more critical of the name CFS (I think it's awful) but
this just wasn't possible if a consensus was going to be achieved (and at
that stage in the report process it seemed that consensus could be
achieved). Like most difficult things in life there has to be some give and
take if you want to move forward.

 Anyway, the current outcome to all this is that ME (encephalomyelitis or
encephalopathy)is alive and well in the patient community - even if many of
the doctors involved in research or clinical work still don't like it or
want to use it . The CMO report makes it very clear, unlike the 1996 Royal
Colleges report, that it should be perfectly acceptable for patients to use
the term ME - even if their doctors want to refer to CFS. And this is an
important step forward.

 Charles Shepherd