Pre Christmas Meeting with Richard

I decided to book a meeting with Richard before Christmas so that I could see if my idea's were appropriate to explore within the Practice Research Project. This ensures I am on top of my work and it gives me plenty of time to start formulating idea's, looking into research and structuring a question. It was quite a brief meeting, but it did open my eyes to how complex the PRP process is and that you need such an innate understanding of any topic to be able to begin thinking of a question; let alone exploring it. 

My supervisor, Richard, and I had a long discussion on different aspects of the condition and why I would want to explore it. It appeared that he himself did not believe - and actually said 'that can't be right' - to the treatment I have received as an adult with the condition. He also asked what positive things were going on and what people were doing to the support the condition so that the view point is always neutral. I feel this is where practitioners like Bertolt Brecht are very clever. His pieces always have a message that proactively involves political or social change but presents information as 'fact' rather than it being a 'personal issue'. As I was just skimming through idea's, I had not realized the ethical implications of picking such a political and controversial topic. 

Richard suggested that he didn't understand why I would want to do a piece focusing on ME/CFS and that it might be better for me to focus on 'disability' or 'invisible illness' instead. It is possibly just due to the fact that there is a lot of controversy surrounding the illness and, if I am honest, as I have the condition I feel safe in exploring it, that I wanted to do a piece solely exploring ME/CFS.I realize now that it is important to take a plunge and do topics that do scare you a little bit, what is theatre without it really! As I have an interest in creating a theatre piece, and looking into how theatre can be used as a tool for change, I feel a piece exploring invisible illness as a whole will be the best way to move forward. 

Throughout the meeting, I was aware I was being pressed to do a dissertation. This is due to a lot of people wanting to do PRP, as this module is weighted as 3 modules put together, I feel it is really important I play to my strengths which is unfortunately not my written work. Although the quality of my writing is style is quite strong, my cognitive problems mean I find it very difficult to be specific and pin point certain words; I can find it hard to get on paper what I want to say. Exploring things practically and then formulating it into a reflective and research paper is much more my cup of tea and where my strength's lie. 

After the meeting I did feel slightly overwhelmed but it has put me in a good a stead for the amount of meticulous research and care that this project is going to need and take. As Richard is putting pressure on the PRP's, I have decided to arrange a meeting with my tutor to go over my proposal so that I have the best chance's of ensuring that I definitely get to move forward with my idea practically. It also means I am discussing my idea's in a slightly more relaxed environment. I am excited for the project but also absolutely terrified;  this is good as it means I can transfer this energy into motivation. To move forward I really need to start delving into some more academic texts and looking at the project from a more educational manner. 




Bibliography 

• Canary in a Coal Mine, 2013. Canary in a Coal Mine - Trailer [online]. Available from: https://www.youtube.com/watch?v=4J5CRGPvgl4 [Accessed November 20, 2015].
• Change4MEAustralia's channel, 2012. I remember ME (full length version) [online]. Available from: https://www.youtube.com/watch?v=401--WCB5dc [Accessed October 25, 2015].
• Cooper, P. 2012. M.E Awareness [online]. Available from: https://www.youtube.com/watch?v=A5tX_RbFjvo [Accessed October 20, 2015].
• Hickman, K. 2015. Illness: Psychosomatic and Physical. Start the Week [online]. Available from: http://www.bbc.co.uk/programmes/b05xd449 [Accessed June 8, 2015].
• PaithanNL, 2011. Trailer docu CVS ME CFS Voices from the Shadows 2011.mp4 [online]. Available from: https://www.youtube.com/watch?v=fiuqTx0u-Yw [Accessed November 20, 2015].
• WCC Learning Technologies, 2015. ME Awareness Week at West Cheshire College [online]. Available from: https://www.youtube.com/watch?v=RqFe53xuTho [Accessed November 20, 2015].
• White, P. 2015. Wolfson Institute - Pace Trial | Wolfson Institute. Wolfson.qmul.ac.uk [online]. Available from: http://www.wolfson.qmul.ac.uk/current-projects/pace-trial [Accessed November 10, 2015].
• Wojcik, W. et al. 2011. ‘84% of British neurologists don’t view CFS as a neurological illness’ – survey results discussed. ME Association [online]. Available from: http://www.meassociation.org.uk/2011/04/84-of-british-neurologists-dont-view-cfs-as-a-neurological-illness-survey-results-discussed/ [Accessed October 20, 2015].

Listen to M.E ideas.

My idea for PRP came to me after hearing a radio 4 segment on a condition I actually suffer with. Its called ME/CFS and it is classed as a neurological condition that causes chronic pain, fatigue and cognitive symptoms. It is interesting to note that it is unknown what causes the condition; mine began with a virus that I just never recovered from, I woke up one day as a healthy active 14 year old and then, by the next, had completely lost my ability to chew and walk. At the time I had settled in at secondary school, and although always busy, was content and happy in my everyday life. At 22, I am still not fully recovered although 'managing'. An idea from the piece came from the fact that, unlike other conditions, they have a minimal understanding of ME/CFS and thus it causes a lot of debates and perspectives on the condition within the medical community and patients on how it should be best treated. Some very understanding, others not so much. What is poignant to note though is that, whether psychosomatic or not, the symptoms are very much real; how in control patients are of this though is a different story. With the majority of conditions a positive outlook, getting outside and doing light exercise will obviously be of great benefit. 

As I was tidying my room 'Start of the Week' began playing on radio 4 and there was a segment that involved Suzanne O'Sullivan (Hickman, 2015). She is a consultant neurologist and ME/CFS was brought up as part of there segment on psychosomatic illness. Although it is classed as a neurological condition, we know that "84% of British Neurologists don't view CFS as a neurological illness" (Wojcik et al., 2011). The shift to also calling ME, Chronic Fatigue Syndrome was so that it better described what we know the condition to be; an umbrella term for a collection of symptoms. There is, however, a lot of debate on this. I thought that they did deal with the condition sensitively and, rightfully so, did not talk about psychosomatic illness suffering in anyway different to physical illness. However, they did refer to ME/CFS as a psychosomatic  illness even though it has been classified as a neurological condition since 1979. The problem isn't actually to do with it being psychosomatic but that patients by professionals and those in the public eye can be treated as if they are the root cause of there own suffering. In some cases, patients don't help themselves, but that is the case for many condition's; positive outlook is everything. 

After these earlier thoughts, I found that there was a video on facebook a friend had shared. At first, I genuinely thought it was a satire joke but it actually is a genuine video. It absolutely highlights the issues that sufferers of the condition face. As someone who has ME yet goes to the gym weekly, thinks positively, does yoga and meditation and likes to in the fresh air; it is my worst fear. Being driven - I genuinely believe contributed to my illness - not being lazy and needing a motivational board. It also shows how easily science papers can be manipulated for different interpretations. In fact, the pace trial never actually stated that it was a 'cure' just that they helped to 'improve symptoms' (White, 2015). 

In contrast to this, there are a lot of organisations that do put out good video's about the realities of the condition and I will put these below. Some are made by organisations and others people that suffer with the condition themselves. 

People all over the world also raised a phenomenal amount of money in a short space of time for the trailer below to be made into a documentary. 

At college, I learnt that to get a scratch for a performance - particularly one exploring aspects of illness - you have to be completely specific on whether you are exploring diagnosis, treatment or the impact it has socially for example. You have to pick a key theme as it is to big to explore everything at once. In this case, I feel that the most poignant thing is that ME patients do not feel listened to. I feel like focusing on the importance of 'listening' could benefit both those with ME and those treating those with ME whether that be doctors, carer's or family members. Obviously this will take a lot of planning but I feel that I would like to explore this concept through epic theatre. I think that personally, it is my favorite form of theatre and it lends itself the ability for ever changing characters.

As a side note you could even have the ME patient as a mop with a face on it so that the patient is actually irrelevant. A symbolic representation of how a lot of people feel with the condition.  

Bibliography 

• Canary in a Coal Mine, 2013. Canary in a Coal Mine - Trailer [online]. Available from: https://www.youtube.com/watch?v=4J5CRGPvgl4 [Accessed November 20, 2015].
• Change4MEAustralia's channel, 2012. I remember ME (full length version) [online]. Available from: https://www.youtube.com/watch?v=401--WCB5dc [Accessed October 25, 2015].
• Cooper, P. 2012. M.E Awareness [online]. Available from: https://www.youtube.com/watch?v=A5tX_RbFjvo [Accessed October 20, 2015].
• Hickman, K. 2015. Illness: Psychosomatic and Physical. Start the Week [online]. Available from: http://www.bbc.co.uk/programmes/b05xd449 [Accessed June 8, 2015].
• PaithanNL, 2011. Trailer docu CVS ME CFS Voices from the Shadows 2011.mp4 [online]. Available from: https://www.youtube.com/watch?v=fiuqTx0u-Yw [Accessed November 20, 2015].
• WCC Learning Technologies, 2015. ME Awareness Week at West Cheshire College [online]. Available from: https://www.youtube.com/watch?v=RqFe53xuTho [Accessed November 20, 2015].
• White, P. 2015. Wolfson Institute - Pace Trial | Wolfson Institute. Wolfson.qmul.ac.uk [online]. Available from: http://www.wolfson.qmul.ac.uk/current-projects/pace-trial [Accessed November 10, 2015].
• Wojcik, W. et al. 2011. ‘84% of British neurologists don’t view CFS as a neurological illness’ – survey results discussed. ME Association [online]. Available from: http://www.meassociation.org.uk/2011/04/84-of-british-neurologists-dont-view-cfs-as-a-neurological-illness-survey-results-discussed/ [Accessed October 20, 2015].