Countrygirl
Senior Member
- Messages
- 5,452
- Location
- UK
http://www.wolfson.qmul.ac.uk/images/pdfs/3.cbt-therapist-manual.pdf
http://www.wolfson.qmul.ac.uk/images/pdfs/5.get-therapist-manual.pdf
Should you attend a UK fatigue clinic this is what your therapist is told about your disease and recommended treatment.
Absolutely no one with ME is safe in the 'care' of people with such views of this illness. These clinics that perpetuate the above myths do need to be boycotted.
http://www.wolfson.qmul.ac.uk/images/pdfs/5.get-therapist-manual.pdf
Should you attend a UK fatigue clinic this is what your therapist is told about your disease and recommended treatment.
Essence of CBT for ME
The essence of CBT is helping the participant to change their interpretation of symptoms and associated fear, symptom focussing and avoidance. Participants are encouraged to see symptoms as temporary and reversible and not as signs of harm or evidence of fixed disease pathology. In this way it is anticipated that they will gain more control of their lives, as they, and not their symptoms, dictate what they do.
Aim
The aim of this treatment is to change the behavioural and cognitive factors, which are assumed to be partially responsible for perpetuating the participant’s symptoms and disability, and to help the participants to develop strategies for dealing with other factors, physical, emotional, social or financial, that may also be impacting on their illness.
What factors perpetuate CFS/ME?
Just as there are many factors involved in triggering CFS/ME, there are also many factors that are involved in sustaining it. According to this model, the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviours (avoidance). These beliefs and behaviours interact with the participant’s emotional and physiological state and interpersonal situation to form self perpetuating vicious circles of fatigue and disability. Although it is acknowledged that lack of physical fitness may play a part in exercise induced symptom production, physical fitness is not central to this conceptualisation of the syndrome.
Fear about activity making the illness worse
People with CFS/ME commonly experience increased pain or fatigue after any activity and this may naturally be read as a sign of doing harm. These thoughts can then lead to safety behaviours e.g., avoiding activities and resting for too long. Resting for long periods can impede recovery by reducing activity tolerance and reducing fitness.
Avoidance of activities
People with CFS/ME may start to avoid activities for fear of making their symptoms worse. However, stopping doing things on a regular basis can lead to a loss of confidence in being able to do them. For example, they may have stopped socializing with particular friends, managing their home, doing exercise etc; resuming these activities may provoke fear and lead to further avoidance.
Fear of symptoms and consequent avoidance of activity
© Trial Management Group: CBT Therapists Manual Page 13 of 162 MREC version 2.1 – 08 December 2004 ISRCTN54285094 associated with symptoms is central. This model also acknowledges that the participant’s beliefs and behaviours are influenced by available information and attitudes of families and friends and that these may also need to be addressed. The model assumes that physiological (fatigue), cognitive (fear of engaging in activity) and behavioural responses (avoidance of activity), are linked. Therefore by modifying one response it is anticipated that changes occur in the other responses. For example, increasing activity (behaviour) may gradually reduce the fear (cognitions) that activity leads to worsening of symptoms.
GET assumes that CFS/ME is perpetuated by deconditioning (lack of fitness), reduced physical strength and altered perception of effort consequent upon reduced physical activity. A normal process of adaptive change in the body is assumed to occur as a consequence of rest or a reduction in physical functioning, i.e. weakening of muscles, reduction in fitness, ('use it or lose it') and altered perception of effort. Activity can then produce symptoms as a result of these negative changes, as the body is attempting a physical activity beyond its current capacity. These changes are thought to be reversible, and thus improving fitness and physical functioning will alter perception of effort, enable the body to gain fitness and strength, leading to a reduction in symptoms and an increase in activity capacity ('use it and gain it').
Preliminary research suggests that reduced symptoms arise from simply doing a GET programme, rather than necessarily getting fitter, whereas improved function is related to getting fitter and stronger. Participants are encouraged to see symptoms as temporary and reversible, as a result of their current physical weakness, and not as signs of progressive pathology. A mild and transient increase in symptoms is explained as a normal response to an increase in physical activity.
The more severely disabled group of CFS/ME patients were excluded from previous studies as the studies involved an exercise test that may have been too challenging. However due to greater levels of inactivity in the more severely disabled group, the deconditioning model should apply equally if not more to these patients.
Section on how to deceive your patient. (My wording……but their intention)
It is therefore very important that you convey warmth and empathy at your first meeting. The assessment provides a wonderful opportunity for participants to tell their story. Often it is the first time that they will have been able to go into detail about their problems. Allowing participants to elaborate on their illness often gives them the feeling that their illness is being taken seriously, often for the first time. Acknowledging the difficulties they have encountered along the way in terms of their illness, whether related to its impact on their life or response from other health professionals, etc., is important. Throughout your treatment sessions, it will be important that you continue to show warmth and empathise with your participant. There is no doubt that getting people to change previous routines can be difficult in a number of ways. The participant may be very fearful of changing the way they do things, fearing worsening of the symptoms. They may find that their symptoms initially worsen when starting their GET programme. Acknowledging the challenges associated with the programme is important if you are to win their trust.
Sensitivity
Participants may not have had their illness taken seriously by previous professionals and may be concerned that you will be no different. They may think that you will be another “professional” who will tell them “to pull themselves together” etc. Participants may feel sensitive about the use of particular words, such as asking them how often they feel tired which can provoke anger in someone who differentiates strongly between the word fatigue and tiredness. Although you cannot forever be thinking about whether or not you are going to offend them, it is worthwhile listening to and trying to use language that is not going to be alienating. In general, it is best to use the language that the participant does to describe their symptoms.
Collaboration
Collaboration is an essential skill in working with people with CFS/ME. Up to the point of meeting you, many participants will not have been included in the management of their illness. They may not have been asked their opinion about what is wrong with them and may feel rather helpless and out of control. Collaborating throughout treatment will help participants to feel more involved in their treatment and will help them to regain some sense of control.
You will be demonstrating a collaborative style at your first meeting when you individualise the GET model to their illness. By this we mean drawing a model together, examining factors they think have been responsible for triggering as well as maintaining the illness. Agreeing an agenda for each treatment session, asking for their input in making suggestions for their activity programme and evaluating previous sessions will help participants to feel valued and included in the treatment process.
Positive reinforcement
It is essential that you demonstrate positive reinforcement when you work with people with CFS/ME. Often, they will be very good at pointing out what they haven’t achieved. It is therefore important that you emphasise and are very positive about what they have achieved. Every session you should positively reinforce all of their achievements, however small they may seem, whether it is managing to walk for a minute longer than the previous session, read for 5 minutes longer or get up 5 minutes earlier. Establishing confidence in you as a therapist
Establishing the participant’s confidence in you as a therapist is important. This is likely to occur if you utilise the skills in the sections listed above. One cautionary note, if you do not know the answer to a question, you are more likely to be respected for saying that you don’t know the answer, rather than trying to answer it in a muddled way.
Aim
The aim of this treatment is to change the behavioural and cognitive factors, which are assumed to be partially responsible for perpetuating the participant’s symptoms and disability, and to help the participants to develop strategies for dealing with other factors, physical, emotional, social or financial, that may also be impacting on their illness.
Absolutely no one with ME is safe in the 'care' of people with such views of this illness. These clinics that perpetuate the above myths do need to be boycotted.
