for ME/CFS. Note that some of these quotes are by individuals who are
currently presenting at the UK BACME conference that the patient
charity AYME is 'facilitating'.
link- http://www.miltonkeynes.co.uk/community/ayme-to-make-this-conference-=
1-3620001
link- http://www.bacme.info/document_uploads/BACME_Events/BACME2012Conferen=
ceProgrammeJan2012.pdf
------------------------------------------------------------
=93We strongly disagree with the statement that no rehabilitation
approach is intended to be curative. The intention of cognitive
behaviour as practised in our research group is definitely curative=85
Too often therapists agree to far less concrete and less achievable
aims, still within the scope of chronically ill patients. The art of
cognitive behaviour therapy is to broaden the patients=92 vision to a
future life as a well person. After reaching most of the personal
goals, one of the last cognitive interventions in cognitive behaviour
therapy is for patients to stop labelling themselves as CFS patients=85
Everyday bodily signs and symptoms were no longer interpreted as
indicating CFS.=94
Judith B Prins, Gijs Bleijenberg, Jos WM van der Meer- Chronic fatigue
syndrome and myalgic encephalomyelitis- The Lancet, Volume 359, Issue
9318, Page 1699, 11 May 2002
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(02)08577-X/f=
ulltext
-----------------------------------------------------------
=93The first treatment protocol developed by our own research group has
much in common and can best be compared with the programs by Sharpe
and Deale=85The initial sessions deal with impeding cognitions=85The main
goal of the treatment is full recovery, the supplementary objective
being return to the workplace.=94 (Ed. note- Michael Sharpe was Co-PI of
the PACE trial)
Bleijenberg G, Prins JB, Bazelmans E (2003). Cognitive-behavioral
therapies. In Handbook of Chronic Fatigue Syndrome (ed. L. A. Jason,
P. A. Fennell and R. R. Taylor), pp. 493=96526. Wiley: New York
----------------------------------------------------------
"Frequently, passive CFS patients have rallied the support of a
considerable number of people. It is also common for those in the
patient=92s environment to be just as concerned and anxious as the
patient. This support may contribute to the maintenance of the
patient=92s complaints. If this seems to be the case, the spouse or
another key player from the patient=92s environment should be invited to
attend a session to discuss how to cut back the support given."
"By increasingly making it the patient=92s own responsibility to detect
and anticipate difficulties and to find solutions, the patient=92s sense
of control will be enhanced and somatic attributions will be reduced.
The patient, who by this time is no longer a patient, has learned how
he can influence his symptoms."
"Getting Rid of the Patient Label
Many patients find it hard to stop seeing themselves as patients. The
term chronic fatigue syndrome already seems to imply a permanent
condition. The fact that many CFS patients have been suffering from
symptoms for quite some time before they are referred for CBT does not
contribute to their developing an optimistic outlook as far as a full
recovery is concerned. In addition, patients who are referred to a
psychotherapist for CFS generally assume that they will learn to cope
with their complaints rather than learn to perceive themselves as
healthy individuals again. This is why shedding the =93patient=94 label
should be one of the first points on the treatment agenda. In the
final phase of the treatment this point is raised again when the
patient is asked what he thinks still needs to be done before he can
replace the marker reading =93patient=94 by a label indicating =93healthy.=
=94
The response of healthy individuals who are suffering from all kinds
of flu-like symptoms will be quite different from the reactions of CFS
patients, who, when they are incidentally experiencing symptoms again,
will usually interpret signals from the body as symptoms of CFS
instead of normal and temporarily fluctuations of the body."
Ellen Bazelmans, Judith Prins, Gijs Bleijenberg Cognitive Behavior
Therapy for Relatively Active and for Passive Chronic Fatigue Syndrome
Patients Cognitive and Behavioral Practice, Volume 13, Issue 2, May
2006, Pages 157-166
http://www.sciencedirect.com/science/article/pii/S1077722906000265
-----------------------------------------------------------
"Cognitive Behavioural Model of CFS-
CBT is based on a cognitive behavioural model of CFS. According to the
model the symptoms and disability of CFS are perpetuated predominantly
by dysfunctional illness beliefs and coping behaviours. These beliefs
and behaviours interact with the patient=92s emotional and physiological
state and interpersonal situation to form self-perpetuating vicious
circles of fatigue and disability=85The patient is encouraged to think
of the illness as =91real but reversible by his or her own efforts=92
rather than (as many patients do) as a fixed unalterable disease.=94
Appendix 2 of the PACE Trial Identifier- =91Manual of cognitive
behavioural treatment for CFS=92 by Chalder, T, Deale, A, Sharpe, M,
Wessely, S, 2002
----------------------------------------------------------
"Cognitive Behavioural Therapy (Complex Incremental Pacing)-
This the most complex treatment. It involved element of simple pacing
to stabilize the patient's activity, graded increases in activity as
with simple incremental pacing and a psychological component to
directly address patient's beliefs and fears about symptoms and
functioning.
Essence
The essence of cognitive behavioural therapy is helping the patients
to change their interpretation of symptoms and associated fear,
symptom focussing and avoidance. Patients are encouraged to see
symptoms as a reflection of reversible psychological and physiological
processes rather than as evidence of fixed disease.
Aim
The aim of this treatment is to change the behavioural and cognitive
factors, which are assumed to perpetuate the person=92s symptoms and
disability. It is anticipated that by reversing these, physiological
changes will follow and the person will be able to make a gradual
improvement in both symptoms and functioning.
Theoretical model
The theoretical model assumes that symptoms and disability are
perpetuated by psychological and behavioural factors (and their
physiological consequences). These are assumed reversible. The model
emphasises the importance of the patients understanding of their
illness and interpretation of symptoms as =93warning signs=94 as
understandable but incorrect. Fear of symptoms and consequence
avoidance of activity associated with symptoms is emphasized. It also
acknowledges that the patients concerns and beliefs are related to the
wider social context and addresses the information available to the
patients and the attitudes and views of family."
Appendix 6 of the PACE Trial Identifier- Summary of treatments to be
compared in PACE Trial- Cognitive Behavioural Therapy (Complex
Incremental Pacing)
-------------------------------------------------------------
=93Wessely, Sharpe, and others have suggested a cognitive behavioral
model of CFS: it is well known within the field that dysfunctional
illness beliefs and avoidant coping perpetuate both the symptoms and
disability of CFS. One of the beliefs of CFS patients that predicts
outcome is that exercise is dangerous or damaging.=94
Peter D. White, M.D.- CNS and ANS Responses to Exercise in Patients with CF=
S
Neuroimmune Mechanisms and Chronic Fatigue Syndrome: Will
Understanding Central Mechanisms Enhance the Search for the Causes,
Consequences, and Treatment of CFS?
June 12=9613, 2003
http://orwh.od.nih.gov/cfs_june03report.pdf
---------------------------------------------------------------
"SHEPHERD: I think there's a certain degree of empire building going
on here amongst the psychiatric and psychological professions. CBT
seems to be sort of moving into all kinds of illnesses.
ATKINSON: But it is used for physical things.
SHEPHERD: It is used for physical things and this is perhaps the
argument that NICE would make - that it's used sometimes with the
management of cancer and serious physical illnesses like Multiple
Sclerosis. But I think this argument is disingenuous, it's not a
primary form of treatment there as is being recommended for people
with ME CFS and if you went along to a cancer specialist and were just
offered CBT as the primary form of treatment you'd be quite horrified,
in fact you'd probably think you were being treated with medical
negligence.
CARR: It was sold to me as something the CBT would make a big
difference, it would change my outlook and it was what they were
offering at that time as a cure for ME.
ATKINSON: That's Natalie Carr, a 31 year old teacher from Oxford,
who's had ME since getting glandular fever when she was 17. For her it
was all talk and no action.
CARR: It was sold more as a cure than as a coping strategy I'd say.
ATKINSON: And in practical terms how did you find it?
CARR: I found it useful to talk about my ME but it certainly didn't
improve things when I was coming for a relapse and so on, I tried all
the strategies that the CBT had suggested but it didn't change the
intensity of the relapse or the length of time I was ill for. And as
time went on it really reinforced with me that it was a physical
illness and certainly mind over matter was only going to have a very
limited effect."
You and Yours - Transcript
BBC Radio 4
TX: 07.11.07 - ME and CBT
PRESENTER: WINIFRED ROBINSON
http://www.bbc.co.uk/radio4/youandyours/transcripts_2007_45_wed_03.shtml
-----------------------------------------------------------
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