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Violation WHO Guidelines & Human Rights
Jan van Roijen - 22.02.2004 22:48
Two hypotheses have been presented as underlying the CBT
model of chronic fatigue syndrome (105).
The first hypothesis "assumes that the pathophysiology of CFS
is largely irreversible, but considers that a fine-tuning of the
patient's understanding and coping behavior may achieve
some improvement in his or her quality of life."
The second hypothesis is based on the premise that the
patient's impairments are learned due to wrong thinking, and
"considers the pathophysiology of CFS to be entirely reversible
and perpetuated only by the interaction of cognition, behavior,
and emotional processes.
According to this model, CBT should not only improve the
quality of the patient's life, but could be potentially curative"
(105). Some proponents suggest that "ideally general
practitioners should diagnose CFS and refer patients to a
psychotherapist for CBT without detours to medical specialists
as in other functional somatic syndromes" (106,107).
The first hypothesis seems reasonable within the multi causal
biopsychosocial model of disease and illness, however a cure
may be found.
But there is much that is objectionable in the very value-laden
second hypothesis, with its implied primary causal role of
cognitive, behavioral and emotional processes in the genesis
of ME/CFS. This hypothesis is far from being confirmed, either
on the basis of research findings or from its empirical results.
Nevertheless, the assumption of its truth by some has been
used to influence attitudes and decisions within the medical
community and the general cultural and social milieu of
ME/CFS. To ignore the demonstrated biological pathology of
this illness, to disregard the patient's autonomy and experience
and tell them to ignore their symptoms, all too often leads to
blaming patients for their illness and withholding medical
support and treatment.
It is unlikely that the CBT and GET studies that were included in
the recent review of treatments (108) dealt with comparable
homogeneous groups since different inclusion and exclusion
criteria were used in selecting the test patients and control
groups.
[This excerpt is taken from pages 46-49 of the article
"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
Clinical Working Case Definition, Diagnostic and Treatment
Protocols" which appeared in the Journal of Chronic Fatigue
Syndrome, Vol. 11(1) 2003, pp. 7-115, written by Carruthers et
al.]
Schending
Richtlijnen WHO &
Rechten van de Mens
~~~~~~~~~~~~~~~~~
Jan van Roijen
Editor “Help ME Circle”
Leliegracht 22-2
1015 DG Amsterdam
Tel: 0031 (0)20 6234089
Email:  j.van.roijen@chello.nl
ME expert Dr. Ellen Goudsmit writes below in her letter to the Lancet:
".....and the tendency to include people with mild
disability (Cf Karnofsky scores of >70) in research......."
She probably refer to the misleading study in the Lancet:
"Cognitive behaviour therapy for chronic fatigue syndrome:
a multicenter randomised controlled trial” - Judith B Prins,
Gijs Bleijenberg, Ellen Bazelmans, Lammy D Elving, Theo
M de Boo, Johan L Severens, Gert Jan van der Wilt, Philip
Spinhoven, Jos W M van der Meer; University Nijmegen;
Lancet 2001; 357: 841-47
[MEAN Karnofsky scale: > 71.5
Comment in the Lancet
~~~~~~~~~~~~~~~~~
This week's issue of the Lancet, out 21st February, includes an
article with the subtext that patient power is unhelpful. Writer
Mike Fitzpatrick, a regular columnist, refers to the chief medical
officer's 'endorsement' of ME and fibromyalgia and follows it by
suggesting there will be a wave of absenteeism. It's all very
subtle, but readers will be left with only one impression of ME
and CFS.
Dr. Fitzpatrick, who is a GP, does not appear to know that the
Chief Medical Officer wasn't the first* to "endorse" (does he
mean recognise?) ME and CFS and that the WHO
acknowledged the existence of ME as far back as 1969.
If CFS is becoming an "excuse" for the worried well, then
perhaps we might look at the ever broadening definition of CFS
(unchanged in the recent clarification paper), and the tendency
to include people with mild disability (Cf Karnofsky scores of
>70) in research. It means significant fatigue is not so significant
anymore, at least, not in terms of severity.
Science is about precision and there is a serioous lack of it in
the CFS world. The drawbacks of the term CFS remain and
unless there is change, e.g. less emphasis on 'normal' fatigue (cf
Chalder scale) and much clearer criteria, they will continue to
create misunderstanding and confusion amongst many
mainstream doctors. And editors of the BMJ and Lancet.
The Lancet is available online and some articles are free.
*Sir Donald Acheson was an expert on ME.
---------------------------------------------------------
Dr. Ellen Goudsmit C.Psychol.
For information about ME and CFS, see:
 http://freespace.virgin.net/david.axford/me/me.htm
~~~~~~~~~~~~
Wish:
````````
With reference to the message below - I wish there was ONE
Dutch parliamentarian, who would ask:
"...What are the criteria for entry to the trial-implementation
of Cognitive Behaviour Therapy and Graded Exercise for
ME/CFS patients in the Netherlands........?
Are these criteria in concordance with the guidelines of the
WHO - that ME and CFS are neurological disorders - instead
of Mental and Behavioural Disorders - as stated by the "CFS
Group" of the University Nijmegen......?
This project is classified under "Mental-Disorders" by the
"University of York NHS Centre for Reviews and
Dissemination".
This is a violation of the guidelines of the World Health
Organisation - ME and CFS are both classified in "The
International Classification of Diseases" as a neurological
disorder under ICD-10 G93.3.
``````````````````````````
http://www.publications.parliament.uk/cgi-bin/ukparl_hl?DB=ukparl&STEMMER=en&WORDS=hl1273+&COLOUR=Red&STYLE=s&URL=/pa/ld200304/minutes/040212/ldordpap.htm#muscat_highlighter_first_match
House of Lords
Session
2003 - 04
Publications on the internet
Minutes and Order Papers
Minutes and Order Paper - Order Paper and Future Business
NOTICES AND ORDERS OF THE DAY
QUESTIONS FOR WRITTEN ANSWER AWAITING ANSWER
12th FEBRUARY 2004
[Tabled on the dates shown]
[The Government Department responsible for answering each
Question is shown in brackets]
9th February
``````````````````
The Countess of Mar---To ask Her Majesty's Government
what are the criteria for entry to the PACE trials for individuals
suffering from chronic fatigue syndrome or myalgic
encephalomyelitis currently being funded by the Medical
Research Council and the Department of Health. [DoH]
(HL1273)
~~~~~~~~~~~~
 E-Mail: j.van.roijen@chello.nl
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