Esther12
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Written by an OT, Caroline Clifton.
https://www.cot.co.uk/sites/default/files/regional-groups/public/BACME-conference-2016.docx.
British Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) Conference 2016:
I was lucky enough to be awarded a Lifelong Learning (LLE) grant to attend this Conference by the South West Region of the College of Occupational Therapy.
The 2 day Conference is organised by British Association for CFS/ME (BACME) the organisation for health professionals working with people with CFS/ME in conjunction with The Association of Young People with ME (AYME) a charity for young people with CFS/ME. The Conference was very rich with information from a wide range of presenters, poster presentations, workshops and an opportunity to network with professionals working in CFS/ME services from all over the country. I will give an overview of the 2 days however due to the vast amount of information and topics covered I will focus on the most important areas for my own practice and the main highlights.
The day began with a presentation from Professor Peter White, Professor of Psychological Medicine. He described a research trial called GETSET (Graded Exercise Therapy SELf help Treatment) which looked at the effectiveness and safety of a self-help graded exercise programme. The results showed that GETSET self-help was moderately effective at improving fatigue but less effective at improving physical functioning. It was concluded that self-help GETSET is as safe as doing nothing as long there is guidance from a therapist. Therapist support was very important as patients described GETSET as challenging, difficult to maintain motivation with and the manifestation of improvement was slow, particularly in the beginning. This presentation raised the question as to whether this could be an acceptable therapeutic approach to offer in the current climate of stretched resources and limited time, as GETSET guidelines from the pacing, graded activity, and Cognitive Behaviour Therapy (CBT): a randomised Evaluation (PACE) trial, offered 15 sessions with a therapist. The PACE trial was a large scale treatment trial which compared the effectiveness of four main treatments: adaptive pacing, CBT, graded exercise and standardised specialist medical care, following which graded exercise and CBT were found to be safe and effective treatments for CFS/ME in adults.
Another interesting presentation was delivered by Dr Hans Koop, Clinical Psychologist from the Netherlands about recent developments in CBT. The concept of recovery was raised alongside definitions such as ‘doing what you want, but not as before’, ‘no longer severely affected,’ ‘able to work and study and reach personal goals.’ The subject of recovery and what we mean when using this term came up later in our informal discussions. How confident the therapist is with using this term was noted as an important contributory factor towards patients believing they can move forward. The research from the Netherlands concluded that CBT remains safe and is better than doing nothing at all. We heard about research comparing treatment protocols for CBT between the UK and the Netherlands with the Netherlands achieving more positive results. The differences that I noted were that the Dutch approach was more prescriptive and structured in relation to physical activity whereas graded activity was negotiated with the patient in the UK. Full recovery as opposed to improvement was the treatment goal and the Dutch approach was strict in limiting the focus on fatigue and promoting diversion of attention away from fatigue. The advantages of web based CBT were put forward as being time efficient, safe and effective.
One of the most memorable presentations was by 2 people who had been severely affected by CFS/ME. Both talked about the importance of having hope and being able to hold on to this idea from the beginning of their illness. Important factors in recovery included setting an activity baseline and planning small, realistic goals, gradual increases in activity and exercise, creating distraction from illness and the use of other therapies such as counselling, hypnotherapy, meditation and yoga. Both talked about the importance of health professionals accepting the methods they chose to manage their illness and recognised that taking personal responsibility for their own health condition was a crucial factor in making positive change. The speed of change was very slow for both patients, however, both have re-prioritised their lives with some incredible results. The talks left me thinking about how to carefully engender optimism in the patients we see with severe CFS/ME. There is very little evidence for treatment for people with severe CFS/ME so the recently produced shared clinical practice document for severely affected will be very helpful.
Professor Esther Crawley, Professor of Child Health, talked about her development of a patient reported outcome measure which had input from children with CFS/ME and their parents. She also spoke about the Magenta Trial which looked into graded exercise provision as a treatment for children. Although the National Institute for Health and Care Excellence (NICE) recommends this, there has been no evidence for GETSET up until now. After 1 year she reported very positive results from the trial with excellent recruitment, good retention and follow up with evidence of no harm and that, anecdotally, children and parents liked GET. She also explained a new Fatigue In Teenagers on the interNET (FITNET) trial for 11-17 years olds which she is recruiting into which will be a web based treatment comparing FITNET modules with activity management via Skype. This could produce some very exciting and encouraging results and there has already been media coverage about this.
Day 2 was very relevant to me as I am planning to develop the vocational rehabilitation provision on a small scale within the Somerset CFS/ME service. Dr Andrew Frank, Visiting Professor – Brunel University (Vocational Rehabilitation Association), talked about the importance of work on health and wellbeing. He talked about work not as an end product of recovery but as part of the process. He underlined important principles of vocational rehabilitation for people with CFS/ME.
I also attended a workshop on vocational rehabilitation which encouraged us to look at issues we commonly come across when talking about work with patients. A very useful exercise focused on the pros and cons of disclosure of CFS/ME at work. A refresher of the relevant components of the Equality Act and reasonable adjustments was welcome. The information informed the content of a work group I plan to run in my service and gave me fresh ideas about how to provide some of the information.
The Conference was a very positive and inspiring experience and I shall be able to continue to practice with confidence so that the NICE guidelines and the results of the PACE trial remain valid references for my treatment approach.
Author - Caroline Clifton - Senior Occupational Therapist/band 6 and qualification DipCot
https://www.cot.co.uk/sites/default/files/regional-groups/public/BACME-conference-2016.docx.
British Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) Conference 2016:
I was lucky enough to be awarded a Lifelong Learning (LLE) grant to attend this Conference by the South West Region of the College of Occupational Therapy.
The 2 day Conference is organised by British Association for CFS/ME (BACME) the organisation for health professionals working with people with CFS/ME in conjunction with The Association of Young People with ME (AYME) a charity for young people with CFS/ME. The Conference was very rich with information from a wide range of presenters, poster presentations, workshops and an opportunity to network with professionals working in CFS/ME services from all over the country. I will give an overview of the 2 days however due to the vast amount of information and topics covered I will focus on the most important areas for my own practice and the main highlights.
The day began with a presentation from Professor Peter White, Professor of Psychological Medicine. He described a research trial called GETSET (Graded Exercise Therapy SELf help Treatment) which looked at the effectiveness and safety of a self-help graded exercise programme. The results showed that GETSET self-help was moderately effective at improving fatigue but less effective at improving physical functioning. It was concluded that self-help GETSET is as safe as doing nothing as long there is guidance from a therapist. Therapist support was very important as patients described GETSET as challenging, difficult to maintain motivation with and the manifestation of improvement was slow, particularly in the beginning. This presentation raised the question as to whether this could be an acceptable therapeutic approach to offer in the current climate of stretched resources and limited time, as GETSET guidelines from the pacing, graded activity, and Cognitive Behaviour Therapy (CBT): a randomised Evaluation (PACE) trial, offered 15 sessions with a therapist. The PACE trial was a large scale treatment trial which compared the effectiveness of four main treatments: adaptive pacing, CBT, graded exercise and standardised specialist medical care, following which graded exercise and CBT were found to be safe and effective treatments for CFS/ME in adults.
Another interesting presentation was delivered by Dr Hans Koop, Clinical Psychologist from the Netherlands about recent developments in CBT. The concept of recovery was raised alongside definitions such as ‘doing what you want, but not as before’, ‘no longer severely affected,’ ‘able to work and study and reach personal goals.’ The subject of recovery and what we mean when using this term came up later in our informal discussions. How confident the therapist is with using this term was noted as an important contributory factor towards patients believing they can move forward. The research from the Netherlands concluded that CBT remains safe and is better than doing nothing at all. We heard about research comparing treatment protocols for CBT between the UK and the Netherlands with the Netherlands achieving more positive results. The differences that I noted were that the Dutch approach was more prescriptive and structured in relation to physical activity whereas graded activity was negotiated with the patient in the UK. Full recovery as opposed to improvement was the treatment goal and the Dutch approach was strict in limiting the focus on fatigue and promoting diversion of attention away from fatigue. The advantages of web based CBT were put forward as being time efficient, safe and effective.
One of the most memorable presentations was by 2 people who had been severely affected by CFS/ME. Both talked about the importance of having hope and being able to hold on to this idea from the beginning of their illness. Important factors in recovery included setting an activity baseline and planning small, realistic goals, gradual increases in activity and exercise, creating distraction from illness and the use of other therapies such as counselling, hypnotherapy, meditation and yoga. Both talked about the importance of health professionals accepting the methods they chose to manage their illness and recognised that taking personal responsibility for their own health condition was a crucial factor in making positive change. The speed of change was very slow for both patients, however, both have re-prioritised their lives with some incredible results. The talks left me thinking about how to carefully engender optimism in the patients we see with severe CFS/ME. There is very little evidence for treatment for people with severe CFS/ME so the recently produced shared clinical practice document for severely affected will be very helpful.
Professor Esther Crawley, Professor of Child Health, talked about her development of a patient reported outcome measure which had input from children with CFS/ME and their parents. She also spoke about the Magenta Trial which looked into graded exercise provision as a treatment for children. Although the National Institute for Health and Care Excellence (NICE) recommends this, there has been no evidence for GETSET up until now. After 1 year she reported very positive results from the trial with excellent recruitment, good retention and follow up with evidence of no harm and that, anecdotally, children and parents liked GET. She also explained a new Fatigue In Teenagers on the interNET (FITNET) trial for 11-17 years olds which she is recruiting into which will be a web based treatment comparing FITNET modules with activity management via Skype. This could produce some very exciting and encouraging results and there has already been media coverage about this.
Day 2 was very relevant to me as I am planning to develop the vocational rehabilitation provision on a small scale within the Somerset CFS/ME service. Dr Andrew Frank, Visiting Professor – Brunel University (Vocational Rehabilitation Association), talked about the importance of work on health and wellbeing. He talked about work not as an end product of recovery but as part of the process. He underlined important principles of vocational rehabilitation for people with CFS/ME.
I also attended a workshop on vocational rehabilitation which encouraged us to look at issues we commonly come across when talking about work with patients. A very useful exercise focused on the pros and cons of disclosure of CFS/ME at work. A refresher of the relevant components of the Equality Act and reasonable adjustments was welcome. The information informed the content of a work group I plan to run in my service and gave me fresh ideas about how to provide some of the information.
The Conference was a very positive and inspiring experience and I shall be able to continue to practice with confidence so that the NICE guidelines and the results of the PACE trial remain valid references for my treatment approach.
Author - Caroline Clifton - Senior Occupational Therapist/band 6 and qualification DipCot
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