6 October 2009
Some clarifications are in order with regard to my mailing published on 4
October 2009: "Protocol saMS trial (supportive adjustment for multiple
sclerosis) Moss-Morris, Chalder et al" [1] and in respect of a comment
published on 5 October, by Dr Ellen Goudsmit, which I append for reference.
Firstly, the Principal Investigators for the saMS Trial protocol are
Professor Trudie Chalder and Professor Rona Moss-Morris, not Dr Alison
Wearden, who is listed in the protocol as an independent member of the saMS
Trial Steering Committee.
Secondly, Dr Goudsmit has stated:
"At the moment, there is no evidence that the APA willl add CFS to DSM V. I
therefore suggest that anyone wishing to help PWCFS focus on more pressing
issues and for example, promote the pragmatic, acceptable alternatives to
CBT which have been described in the literature (eg as the 'best option' in
PEC, Van Houdenhove and Luytens)..."
This is a non sequitur. There had been no reference in my mailing of 4
October to the APA (American Psychiatric Association) or to DSM-V, in the
context of "CFS", or in any other context.
Thirdly, none of the reports and commentaries that I have published,
myself, since late January, have stated or implied that there is evidence
that the DSM Task Force or the DSM "Somatic Distress Disorders" Work Group
are intending to "add CFS to DSM-V".
Because of the lack of transparency around the DSM-V revision process, the
absence of Work Group reports since April 2009 and the failure of the Task
Force to issue detailed reports, it is not yet publicly known what the most
recent proposals will be for the section on "Somatic Distress Disorders",
despite the fact that field trials for some sections of DSM-V are expected
to launch this month. The implications for this lack of detail for those
working within the field have been discussed by Spitzer and Frances [2].
Unhelpfully, Dr Goudsmit does not provide references, but I assume that in
the second half of the paragraph that her call for the promotion of
"pragmatic, acceptable alternatives to CBT" refers to Dr Goudsmit's own
published papers.
Dr Goudsmit goes on to caution against what she perceives as "distractions"
and "...diverting attention using negative strategies e.g. casting
aspertions on what is really sound research on other patient populations."
I am confused by this statement.
My mailing of 4 October contained no criticism of any individuals and no
comment, negative or otherwise in relation to the saMS Trial, in relation
to its lead researchers or any other areas of study in which they and their
colleagues are involved. If Dr Goudsmit would like to supply references
for the "negative strategies" and "casting [of] aspertions on what is
really sound research" which she perceives within the text of my mailing, I
would be happy to discuss this with her.
The mailing contained only facts in relation to a study which I felt would
be of interest to our own community, affording an opportunity to compare
and contrast the protocols for a study on Cognitive Behavioral Therapy or
Supportive Listening for MS patients with that of the now completed FINE
Trial for "CFS/ME" patients. I have received a number of messages thanking
me for drawing attention to the saMS protocol.
I consider that subscribers to Co-Cure (some of whom may be new to the
field of "CFS" research and may appreciate some additional factual
background information) are able to decide for themselves what might
be worthy of their attention and note that this is not the first time
that Dr Goudsmit has sought to limit the publication of material around
certain topics, and specifically, the DSM revision process.
Since January, when the issue of the lack of information around Dr Richard
Sykes' CISSD Project came to the fore, I have focussed on bringing into the
public domain information hitherto unavailable and to also inform our
community around the DSM revision process and the WHO's revision of ICD-10
towards ICD-11 in order that these processes can be monitored.
A good deal of material is now out in the public domain which otherwise
might not have seen the light of day. This has involved a considerable
amount of research and dogged liaison with Action for M.E., the Institute
of Psychiatry, Dr Richard Sykes, the CISSD Project chairs, the APA, various
members of the DSM-V Task Force, various members of the DSM-V Work Group
for "Somatic Distress Disorders", the WHO Geneva, the ICD-11 Revision
Steering Group and other organisations.
I am dismayed and disconcerted by attempts from any quarter to limit the
publication of information, whether this is around the CISSD Project,
DSM-V, ICD-11 or any other issue of interest to the ME community or which
may have significance or implications for the ME community or to suppress
discussion of certain topics.
In addition to material resulting out of research into the CISSD Project, I
have published information around the DSM revision process, DSM-V Task
Force and Work Groups and DSM-V Work Group reports, expedited the
publication of the Summary Report of the 4th Meeting of the International
Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders
(Chapter V), obtained and published the membership of the reconstituted
Advisory Group and the ICD Topic Advisory Group for Neurology and have
flagged up the recent WHO ICD-11 iCAMP meeting to test the iCAT, the iCAMP
YouTubes and important documents being developed which set out the proposed
structure of ICD-11, the Content Model and the operation of iCAT, the
collaborative authoring platform through which ICD-11 will be drafted.
From the responses I receive I know that this material has been welcomed by
many and I shall continue to monitor both the DSM-V and the ICD-11 revision
processes and publish information as it becomes available.
[1] Protocol saMS trial (supportive adjustment for multiple sclerosis)
Moss-Morris, Chalder et al
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0910a&L=co-cure&T=0&F=&S=&P=2727
[2] Psychiatric Times
http://www.psychiatrictimes.com/dsm-v
[3] ICD-11 Revision Google Site
https://sites.google.com/site/icd11revision/home/documents
Suzy Chapman
http://meagenda.wordpress.com
http://twitter.com/MEagenda
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Subject: [CO-CURE] ACT: Distractions, Monday, October 05, 2009 9:19 AM
A recent post noted the work of Prof. Chalder and Dr. Wearden on MS and
other diseases. What they are studying is standard health psychology and
they have been doing that for many years. Other psychologists have also
assessed the value of treatments like CBT in patients with MS, RA and other
disorders. I recently saw an excellent, balanced, evidence-based review by
Prof. Chalder on the psychosocial aspects of MS. It is known that stress
can trigger relapses in MS and that CBT can reduce emotional distress of
diseases like MS, AIDS and RA. Whether it is superior to other
interventions remains unclear.
At the moment, there is no evidence that the APA willl add CFS to DSM V. I
therefore suggest that anyone wishing to help PWCFS focus on more pressing
issues and for example, promote the pragmatic, acceptable alternatives to
CBT which have been described in the literature (eg as the 'best option' in
PEC, Van Houdenhove and Luytens). These programmes increase choice and may
be more appropriate for a significant proportion of patients.
The risk is that the lack of knowledge of health psychology and the focus
on personalities may undermine the efforts of others to improve the
understanding and treatment of CFS. People involved in committees are
perfectly capable of making decisions irrespective of their own
preferences, e.g. to recommend two treatments, one of which they don't
personally offer. Indeed, commitees which include a range of opinions help
to limit the influence of personal bias. It is therefore in our favour to
request that committees dealing with CFS and ME include a range of
different opinions, without diverting attention using negative strategies
e.g. casting aspertions on what is really sound research on other patient
populations.
I submit that we need greater knowledge more than fear based on
speculation, let alone criticisms of individuals based on 'confusion' and
insinuation.
----------------------------------------------------------------------
Dr. Ellen M. Goudsmit C.Psychol. FBPsS
Health Psychologist
Visiting Research Fellow UEL
For information on ME and CFS, see:
http://freespace.virgin.net/david.axford/melist.htm
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