Posted on Co-Cure https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1203b&L=co-cure&F=&S=&P=14575 this week.
Note: Included below are some 'Quotable Quotes" on psychosocial 'CBT'
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/BACME2012ConferenceProgrammeJan2012.pdf
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Note: Included below are some 'Quotable Quotes" on psychosocial 'CBT'
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/BACME2012ConferenceProgrammeJan2012.pdf
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-----------------------------------------------------------We 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 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 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 Everyday bodily signs and symptoms were no longer interpreted as indicating CFS.
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/fulltext
----------------------------------------------------------The first treatment protocol developed by our own research group has much in common and can best be compared with the programs by Sharpe and DealeThe initial sessions deal with impeding cognitionsThe main goal of the treatment is full recovery, the supplementary objective being return to the workplace. (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. 493526. 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 patients environment to be just as concerned and anxious as the patient. This support may contribute to the maintenance of the patients complaints. If this seems to be the case, the spouse or another key player from the patients environment should be invited to attend a session to discuss how to cut back the support given."
"By increasingly making it the patients own responsibility to detect and anticipate difficulties and to find solutions, the patients 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 patient 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 patient by a label indicating healthy.
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 patients emotional and physiological state and interpersonal situation to form self-perpetuating vicious circles of fatigue and disabilityThe patient is encouraged to think of the illness as real but reversible by his or her own efforts
rather than (as many patients do) as a fixed unalterable disease.
Appendix 2 of the PACE Trial Identifier- Manual of cognitive behavioural treatment for CFS 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 persons 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 warning signs 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)
---------------------------------------------------------------Wessely, 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.
Peter D. White, M.D.- CNS and ANS Responses to Exercise in Patients with CFS Neuroimmune Mechanisms and Chronic Fatigue Syndrome: Will Understanding Central Mechanisms Enhance the Search for the Causes, Consequences, and Treatment of CFS?
June 1213, 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