=20
I accept that Suzy Chapman from ME Agenda is genuine in trying to help pat=
ients with CFS but if her posts confuse me=2C I suspect they may also have=
confused others=2C especially individuals with less experience in data an=
alysis and matters re classification etc. =20
=20
>There had been no reference in my mailing of 4 October to the APA (Americ=
an Psychiatric Association) or to DSM-V=2C in the context of "CFS"=2C or i=
n any other context.
=20
My post did not just relate to the information on the 4th October but also=
=2C for example=2C the post on the 2nd October. I do not understand the r=
eason for the details of the MS study by Chalder (yes=2C there are parallel=
s=2C it's another CBT-based programme provided by nurses=2C but MS is bett=
er defined so the population is likely to be more homogeneous=2C there are =
difference in the manual and outcome measures etc). It's unclear why this =
information is helpful to me as a patient or a researcher.=20
=20
> ... none of the reports and commentaries that I have published=2C
myself=2C since late January=2C have stated or implied that there is evide=
nce
that the DSM Task Force or the DSM "Somatic Distress Disorders" Work Group
are intending to "add CFS to DSM-V".
=20
I should therefore ask for clarification as to why this information is of r=
elevance to PWCFS.=20
=20
=20
> I am dismayed and disconcerted by attempts from any quarter to limit the
publication of information=2C whether this is around the CISSD Project=2C
DSM-V=2C ICD-11 or any other issue of interest to the ME community or whic=
h
may have significance or implications for the ME community or to suppress
discussion of certain topics.
=20
I have never suggested that people should not publish on issues relating to=
the ME Community. I'm very interested in encouraging relevant and authori=
tative information but I question the value of posts of the nature mentione=
d. If people with boundless energy have a desire to help us=2C I should lik=
e them to focus their talents on pressing issues or matters which are ver=
y likely to impact on our lives and welfare in the short term=2C such as th=
e need for better criteria=2C the education of professionals re drawbacks o=
f CBT (what the BMJ doesn't tell you) etc. This could involve writing very=
curteous letters to national groups to nominate people who can balance the=
likes of Profs Sharpe and Heim.=20
=20
=20
> In addition to material resulting out of research into the CISSD Project=
=2C I
have published information around the DSM revision process=2C DSM-V Task
Force and Work Groups and DSM-V Work Group reports=2C 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)=2C 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=2C the iCA=
MP
YouTubes and important documents being developed which set out the propose=
d
structure of ICD-11=2C the Content Model and the operation of iCAT=2C the
collaborative authoring platform through which ICD-11 will be drafted.
=20
Again=2C lots of energy has been spent but how is this useful re CFS? If on=
e doesbn't have the capacity to remember everything=2C it is not sensible =
to read essays on issues which do not directly affect CFS and ME. I recomm=
end pacing of mental activities=2C as well as physical ones. As noted=2C ev=
en if there are CBT school scientists in a committee=2C if this is balanced=
=2C there are no problems. We therefore need to consider how to balance the=
committees where groups can nominate members=2C e.g. NICE. We have no such=
influence re DSM and ICD.=20
>=20
From the responses I receive I know that this material has been welcomed b=
y
many and I shall continue to monitor both the DSM-V and the ICD-11 revisio=
n
processes and publish information as it becomes available.
=20
This claim can't be verified. Do these individuals claim to have CFS=2C ar=
e they activists?=20
=20
Re the 'missing' references=2C I provided the authors and journal for those=
wishing to read more about the two studies=2C (not just mine=2C sic)=2C an=
d this would have been clear to all subscribers to Co-Cure=2C as the paper =
mentioned was reproduced in full in the past two weeks.=20
=20
Thus I welcome clarification re the relevance of lists of individuals and p=
articipants in groups if there is no good evidence of an attempt to add CFS=
or ME to ICD-11 (chapter 5) or DSM-V and no clear link with CFS or ME. I d=
o not wish to stop Suzy from monitoring any WHO or APA related group=2C but=
she doesn't have to for me. In the past=2C neither organisations have cons=
ulted patients=2C but as before I expect to be consulted by the APA re DSM =
because I am a member of a professional organisation. They will then come =
to a consensus.=20
=20
Regards=2C=20
----------------------------------------------------------------------=20
Dr. Ellen M. Goudsmit C.Psychol. FBPsS=20
Health Psychologist
=20
Visiting Research Fellow UEL
=20
For information on ME and CFS=2C see:=20
http://freespace.virgin.net/david.axford/melist.htm=20
*** This e-mail and any attachments are confidential and solely for the inf=
ormation of the addressee. Any copying or disclosure to a third party is un=
authorised and the sender is not responsible for any matter resulting from =
changes to the text made by a third party.=20
=20
=
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