=20
1. The manuals/protocols which are available to treat people with CFS=2C as=
opposed to arthritis=2C diabetes etc=2C emphasize the value of changing 'u=
nhelpful' beliefs (c)=2C stress (b and c) and phobic avoidance (b and c). =
So do books=2C e.g. by Chalder. They ascribe symptoms such as dizzinesss t=
o stress=2C which you can confirm by reading the text on the King's website=
or introduction sections of the RCTs=2C where physiological changes are at=
tributed to emotional variables=2C not viruses or infection. Most descripti=
ons leave little room for therapists to adopt an individualized programme a=
s suggested by my colleague. The fact that he's clearly more patient-center=
ed and aware of the oversimplification in the journals is admirable. My aim=
is to draw attention to the complexities of CFS so there are more psycholo=
gists who offer flexible approaches.=20
=20
2. NICE was not rigorous (hence the deliberation as to the number of sessio=
ns for group pacing: the latter aims to find one's own tolerance levels and=
16 hours in a group is therefore illogical=2C as well as a waste of 15 hou=
rs and 55 minutes). Some of their decisions were also based on factual erro=
rs=2C misunderstanding of specific theories (e.g. the envelope theory) and =
a complete lack of interest in scientific data such as effect size statisti=
cs (indicatign a modest effect). I was not the only psychologist to have =
noticed that. I was part of a team which scrutinized the draft and we alert=
ed NICE to the errors and misclassification of certain trials in plenty of =
time for them to amend the text.=20
=20
Anyone wishing to read my request for a review to NICE to amend the errors =
using their own procedures=2C complete with references=2C can contact me o=
fflist.=20
=20
As for the Dutch report=2C I again noted factual errors and a very biased =
analysis of the available literature. (I can read Dutch). I managed to talk=
to the assistant of Dr. Els Borst MD who declared to have no interest in a=
ccuracy. Like other Dutchmen and women=2C I was not impressed by their repo=
rt and would not use it as a basis for decisions regarding research or mana=
gement. Other Dutch people may disagree. Yes=2C we expect scientists to be =
objective and impartial=2C but they were not.=20
=20
3. I am not a patient advocate but an experienced psychologist. I have no i=
nterest other than to see that patients are offered the most helpful therap=
eutic options based on the best evidence. If NICE shows signs of group-thin=
k=2C as they did=2C then I will take that into account. A good scientist co=
rrects errors when he/she becomes aware of them. Especially if those errors=
are of clincial significance=2C which most were. NICE refused=2C twice. R=
eputation means little if an objective view and some attention to detail re=
veals a fondness for a specific approach and a total lack of interest in al=
ternatives.=20
=20
I appreciate that there are colleagues who ignore the recommendations in th=
e literature on CBT and aim to help their patients regardless of the manual=
s and models as summarised in various journals. However=2C many colleagues =
are not so enlightened=2C as I hear from patients=2C and colleagues. Hence =
the need to debate the evidence which tends to get ignored. I've worked on =
several NICE guidelines. All but the one on CFS appeared to be consistent w=
ith literature and errors were corrected after the consultation stage. I c=
annot pretend that I don't know what I know. It doesn't get us anywhere and=
is probably inconsistent with my Codes of Ethics.=20
=20
4. The Dutch have many talents. They can dredge up anything from the bottom=
of the sea. They gave us TomTom. They produced excellent scientists over t=
he years=2C e.g. Profs. Tinbergen (two brothers). But their report on CFS w=
as hardly something most Dutch scientists would boast about. Anyone who rel=
ies on their report=2C and NICE=2C will not be able to offer their patients=
the best advice.=20
=20
5. I am unsure about the wisdom of speculating about CBT for CFS based on t=
he literature relating to other disorders. For example=2C I am aware of the=
use of CBT for diseases such as AIDS etc. One thing that they indicate is =
the variability between samples and the importance of comparing subgroups. =
However=2C it does show that different psychologists have entirely differen=
t views of CBT=2C and hence the need to study the manuals. I too=2C ignore =
the ones for CFS.=20
=20
CBT is sometimes misrepresented=2C and the lack of knowledge by those indiv=
iduals is also reflected in other comments on psychology and psychiatry. Th=
at's a side issue. I submit that we need to clarify the nature of CFS and t=
he modest outcomes relating to the various versions of CBT that psychologis=
ts may have read about in the literature. It affects more people and does m=
ore harm.=20
=20
And one should not believe everything published by NICE or the Cochrane Col=
laboration. Check for group-think.=20
=20
As this is not a dicussion list=2C perhaps we should end it here and acknow=
ledge that we hold different opinions on CBT.=20
=20
Ellen Goudsmit
=20
----------------------------------------------------------------------=20
Dr. Ellen M. Goudsmit C.Psychol. FBPsS=20
Health Psychologist (HPC Registered)
=20
This account was one of many hotmail addresses stolen in August 2009. Hotma=
il are not helping those affected. You may receive emails from 'me'. Only =
the ones noting the FBPsS are genuine.
=20
Available via Skype: ellen.goudsmit
=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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