24 August 2009
Action for M.E. stuffs the elephant firmly back into the cupboard...
The Conceptual Issues in Somatoform and Similar Disorders (CISSD) Project=
ran
from 2003 and was wrapped up by autumn 2007.
But the Project's principal administrator, Action for M.E, has only just =
this
week published an article around the Project.
Were it not for the fact that I and a small number of others have been
agitating for information on the CISSD Project since early 2007, it is li=
kely
that Action for M.E. would have published nothing at all.
"Classification conundrum" appears on pages 16 and 17 of the August 2009 =
issue
of Action for M.E.'s magazine "InterAction" (Issue 69).
Note that although the Project had been initiated by Dr Richard Sykes, Ph=
D, Dr
Sykes would not appear to have contributed to the article, which is autho=
red by
Dr Derek Pheby. In fact, Dr Sykes' and his co-ordination of the Project
is not mentioned at all. Nor is the Project's funder - the charitable Tru=
st run
by Dr Sykes' brother, Sir Hugh Sykes, a non executive director of A4e, th=
e
largest European provider of Welfare to Work programmes.
A large percentage of this article's second page is given over to an imag=
e of a
man, most aptly holding up a large question mark.
There have been a very large number of questions about the nature and
implications of this Project - the most obvious one being why has Action =
for
M.E. sought to keep the lid on it for so long?
Action for M.E. could have used this space to expand on the nature of the
Project and list the names of those involved it.
But I guess there is no easy way of broaching that it was chaired by Prof=
essors
Michael Sharpe and Kurt Kroenke or that the workgroup comprised a couple =
of
dozen international researchers and clinicians from the field of liaison
psychiatry and psychosomatics; or that not a single researcher outside th=
is
field was a member of the workgroup; or that there was only one patient r=
ep on
board who just happens to have co-authored books on CFS with the Project'=
s UK
Chair, Michael Sharpe; or that none of the other national ME patient
organisations were consulted; or that as stakeholders, we were kept in th=
e dark
about this Project or that the workgroup included influential, internatio=
nal
researchers like Francis Creed, Kurt Kroenke, Arthur Barsky, Charles Enge=
l,
James Levenson, Javier Escobar, Per Fink, Peter Henningsen, Wolfgang Hill=
er,
Bernd L=F6we, Richard Mayou, Winfried Rief... several of whom now sit on =
the DSM-V
Somatic Symptoms Disorders Work Group and the DSM Task Force at the very =
core of
the APA's revision process.
Easier by far to pad out this apologia piece with a stock photo...
Action for M.E. could usefully have linked to the review paper that resul=
ted out
of the project, but hasn't done so; it could have linked to the CISSD Pro=
ject
"summary report" published on the ME Association's website in June; it co=
uld
have published a link to a copy of the CISSD "Final report" it received f=
rom Dr
Sykes in December 2007 which contains material omitted from the "summary =
report"
that Dr Sykes provided to the MEA but it has not published this document.
For links to these documents and an unauthorised version of the December =
2007
"Final report" see:
The Elephant in the Room Series Two: Status of the CISSD Project unscramb=
led
http://wp.me/p5foE-1GL
Appended is the article published in "InterAction", today, which represen=
ts all
that Action for M.E. does wants you to know.
Before it stuffs this Project back into the cupboard, I call on Action fo=
r M.E.
to publish a copy of the December 2007 "Final report" by Dr Richard Sykes=
on its
website, prefaced with an erratum note addressing the errors of coding wi=
thin
"Appendix B" of the document and also addressing Dr Sykes' misconception =
that
"Chronic fatigue syndrome" does not appear in the International Statistic=
al
Classification of Diseases and Related Health Problems: 10th Revision Ver=
sion
for 2006, Volume 3, the Alphabetical Index:
( http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-=
3 )
Once again, I call on the ME Association to publish a commentary and anal=
ysis of
the CISSD Project, for to date, the MEA has made no comment whatsoever on=
the
Project, itself, nor on the revision and "harmonization" processes toward=
s DSM-V
and ICD-11 that this Project was set up to inform.
In June, an Editorial: The proposed diagnosis of somatic symptom disorder=
s in
DSM-V to replace somatoform disorders in DSM-IV - a preliminary report: F=
rancis
Creed and Joel Dimsdale was published in the Journal of Psychosomatic Res=
earch,
for which Francis Creed is co-editor.
Neither Action for M.E., the ME Association, Dr Sykes or Dr Derek Pheby h=
as
published commentary on the most recent proposals of the DSM-V Somatic Sy=
mptoms
Disorders Work Group, as set out in this Editorial and on the APA's websi=
te:
( http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext )
( http://tinyurl.com/DSMSDDWGApril09 )
I also call on the ME Association to approach Dr Sykes and request that h=
e set
out the nature, aims and objectives of the "London Medically Unexplained
Physical Symptoms and Syndromes (MUPSS) Project" for which he now receive=
s a
research award of =A327,000 per year through the Institute of Psychiatry,=
once
again being funded by the Hugh and Ruby Sykes Charitable Trust.
For information on the DSM-V and ICD-11 revision processes, and on the
CISSD Project see: http://meagenda.wordpress.com/dsm-v-directory/
-----------------------
"Classification conundrum" by Dr Derek Pheby, InterAction 69, Action for =
M.E.
membership magazine, August 2009, pp 16 and 17:
We are at a moment in time when the underlying pathology of M.E. is on th=
e point
of elucidation at last, writes Dr Derek Pheby. It is becoming apparent th=
at the
syndrome we know as M.E. consists of several different phenotypes, each w=
ith its
own distinctive pathological basis...
These should in due course be recognised as individual disease entities, =
a
process that would be helped by the identification of specific biomarkers=
. This
will be a major historical change. It should bring to an end the long-run=
ning
concern about the nature of M.E. and what sort of illness it should be re=
garded
as being. In particular, it will end the argument that has been a serious
concern of many people with M.E., that many doctors and others have regar=
ded the
illness as primarily psychiatric and that this is reflected in the main
classification systems by which diseases are recorded.
Much concern has centred around so-called 'somatoform disorders,' as peop=
le with
M.E. have frequently been assigned to this category and its position in t=
he main
statistical classification in current use, which is the International
Classification of Diseases (10th. revision) (ICD-10).
'Somatoform disorders' are located in the 'Mental and behavioural disorde=
rs'
chapter of ICD-10. They are also a category within a specifically psychia=
tric
classification, widely used by psychiatrists, entitled the Diagnostic and
Statistical Manual (4th edition) (DSM-IV).
Both ICD-10 and DSM-IV are statistical classifications. They are simply t=
ools
that doctors and researchers need if they are to examine trends in the
occurrence of disease and assess the effectiveness of treatments and othe=
r
interventions designed to reduce the occurrence of disease or mitigate it=
s
impact.
There is a paradox though, in that medical research looks forward into a =
future
in which medical knowledge is increasing all the time, while medical
terminology, including classification systems, essentially looks backward=
s to a
time when medical knowledge was less advanced than it is today.
Thus ICD-10, which was introduced into the UK in 1994, was the product of
thinking that mostly took place in the 1980s. It is therefore now a quart=
er of a
century old, so it is not surprising if it is now beginning to look somew=
hat
frayed around the edges.
Indeed in two areas it was already out of date when it was introduced int=
o the
UK, having already been supplanted by new classifications developed as a =
result
of new scientific knowledge acquired since ICD-10 was first developed. Th=
ese two
areas were brain tumours and lymphomas and the new classifications were t=
he
Kleihuis histological classification of neurological tumours and the REA=
L
(Revised European American Lymphoma) classification.
CISSD
ICD-10 and DSM-IV will both soon be replaced by lCD-11 and DSM-V respecti=
vely.
One input into the development of ICD-11 has come from a project entitled
Conceptual Issues in Somatoform and Similar Disorders (CISSD). This was a=
n
international project, coordinated from Westcare.
When Action for M.E. merged with Westcare a few years ago, it found itsel=
f the
residual legatee of this project. This caused unease among some people wi=
th M.E.
who concluded, mistakenly, that the charity had committed itself to a par=
ty line
which treats M.E. as a somatoform and hence essentially as a psychiatric
condition. This is not the view of Action for M.E., which supports the Wo=
rld
Health Organisation's classification of M.E. as a neurological condition.
The CISSD project did not resolve the key question of whether the categor=
y of
somatoform disorders should be retained in the classifications of mental
disorders or not. However, it did recommend that if the category were to =
be
retained, the diagnosis should not be made solely on the basis of the pat=
ient
manifesting 'medically unexplained' symptoms but should require that the =
patient
manifest 'positive psychological criteria' as well.
The authors also recommended that the subcategory in DSM-IV of 'undiffere=
ntiated
somatoform disorder' - which is a pigeon hole into which it has not been
uncommon for people with M.E. to be pushed - should be abolished.
These two changes should be beneficial to people with M.E. That benefit i=
s
likely to be marginal though, because it is not unknown for 'positive
psychological criteria' to be wrongly attributed to people with M.E., in =
a
process of post hoc rationalisation, in order to justify an inappropriate
diagnostic label.
What is really needed to resolve this diagnostic problem is not a change =
in
classifications but an increase both in scientific knowledge so that ther=
e is no
longer any doubt as to how M.E. should be classified and in the respect i=
n which
people with M.E. are held and in the quality of health care they receive.=
There
would be a few problems if all doctors and other health professionals dep=
loyed
the same level of clinical knowledge and skill that the best do already.
Knowledge gap
Realistically, our knowledge of the various phenotypes within the M.E. um=
brella
is not yet adequate for this to be reflected in the revised classificatio=
n. It
remains to be seen also whether the CISSD recommendations are acted upon =
or not.
However, one thing that is very clear is that ICD-11, on the day it is
promulgated, will like ICD-10 already be in part out of date and will bec=
ome
increasingly so over the decade or so that it will be in use.
Much of the difficulty arises from the concept of 'medically unexplained'
symptoms. There is nothing innate about this. What may be medically unexp=
lained
to one generation of doctors may be perfectly capable of explanation to t=
he
next, given the onward march of science.
It is entirely wrong to assign a person to a category of psychiatric illn=
ess
because his or her symptoms are medically unexplained. Such a label point=
s more
to a deficiency in doctors because of their inability to explain symptoms=
, than
in the patient. Indeed to assign someone to the wrong category on the bas=
is of a
false understanding of the nature of the illness and its context is an ex=
ample
of a well-known phenomenon which psychologists term 'fundamental attribut=
ion
error.'
Freud's legacy
This tendency to regard people as having a primary psychiatric diagnosis=
when
they are physically ill is probably a consequence of the baleful influenc=
e of
Sigmund Freud on 20th century medicine.
Sarah Vaughan, a GP from Bristol, writing recently in the British Medical
Journal, refers to Freud's: "...most damaging legacy - namely, the widesp=
read
belief that all symptoms that elude diagnosis are psychosomatic in origin=
. This
assumption has caused untold frustration and distress to patients who, on=
top of
having illnesses that elude medical diagnosis, have to face being misdiag=
nosed
as having psychological illness despite their protestations to the contra=
ry.
"With the benefit of modern medical knowledge, Freud's patients can be se=
en to
have been relating histories that point clearly towards physical illnesse=
s that
weren't known or diagnosable at the time.
She concludes: "All too often, the medical profession ignores one of the =
most
important lessons to be learned from Freud's story - that, if we are unab=
le to
explain a patient's symptoms, the reason may not be that the symptoms are
psychosomatic but simply that our knowledge is imperfect." (The dark side=
of
Freud's legacy (letter). BMJ 2009; 338: b1606).
Eventually. ICD-11 will be replaced by ICD-12, which in turn will rapidly=
become
out of date.
CISSD is not a devious plot to "psychiatrise" M.E. Rather it should be se=
en as
an honest attempt to rationalise an issue which has only arisen because m=
edical
knowledge is incomplete and which, at the end of the day, is no substitut=
e for
detailed scientific research to unravel the fundamental basis of this ill=
ness.
Dr Pheby is Project Coordinator for the National CFS/M.E. Observatory. He=
was
formerly Chair of the Project Assurance Team at the NHS Centre for Coding=
and
Classification. Read his report of the IACFS conference on p 12.
InterAction 69 August 2009
http://www.afme.org.uk/
________________________
Suzy Chapman
http://meagenda.wordpress.com
http://twitter.com/MEagenda
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