Rushes Log (shared with other group members)

Permission release form

filming photographs

project description (shared with other group members)

the project aims to explore how chronicle fatigue syndrome has affected Ren Gill's life as a music career pursuer. The documentary was based on an interview with Ren and 



my group work:

Me VS M.E. Project Description

            ‘Me VS M.E’ is a documentary account of a young man’s life after being diagnosed with Myalgic Encephalomyelitis in 2011. It explores and encapsulates the journey of 24 year old Ren Gill, from diagnosis to imminent recovery and his use of social media to connect with other M.E. patients. It engages with some of his most inner thoughts and feelings about the condition and about himself.

                        M.E.’s unrecognised significance in young people today demonstrates how little people understand the seriousness of the illness. Commonly connected to older adults, the effects of M.E. in teenagers and young adults is not frequently discussed on many media or social platforms. The absence of medicinal support methods and lack of funding for a more advanced, professional research program of M.E. has triggered diagnosed sufferers to share their own forms of remedies and therapies online through their personal blogs and video diaries.

            The aim of this documentary is to provide a nonfictional account of the reality of living with M.E. as a young person on a daily basis and thus to give an insight into the life of a sufferer. The documentary shows what it is like from a humanistic approach, focusing on Ren’s personal story to provide a moving and uplifting account of life with M.E, with an emphasis on the subjects state of mind and psychological outlook. This nonfiction film critically engages with the documentary genre by using psychological realism to explore the interior life of the main protagonist of ‘Me VS M.E.’           

50 word publicity blurb

50 word publicity blurb on the rear cover aimed at describing the film to an appropriate audience with all crew and contributor credits. 

directed by Hannah rose shaw, filmed by….this documentary befriend you with a 23 year old singer Ren Grill. The frustration coming with M.E. illness has not stopped him from being passionate about music and his life. 

Personal reflection in the editing stage (post-production period)

Our documentary video has roughly been finished. But i was disappointed of it. 

Though we were organised and made sure we filmed every week, we actually didn't know or were not clear what we aimed to do each time. If you go through all the raw footage you will find we sort of intended to do a simple interview based documentary and what we have finished now is actually one conventional interview-plus-cutaway documentary. 

i listed footage of these themes:

Ren singing in stammer park (acted up)

Ren doing busking in the Laines and royal pavilion park. (acted up)

Ren editing his music albums at his laptop.(doing hip-hop rap)

Ren cooking in his kitchen. (acted up)

Ren going to a shop.

Ren doing yoga. (acted up)

he acted in a lot of footage so there is not a sense of the actual illness. In the production process, what we did was to contact him and ask if he could do the above things and then he said yes and then we filmed. so from the beginning we didn't let things spontaneously happen as they would. what i thought we should have done was to ask him to call us whenever he felt he was doing something to do with his condition M.E. say for example when he would visit a practitioner. but unfortunately, he has recovered already so theoretically there was nothing special about him anymore as he is currently just a person leading a normal life, passionate about music (which remains the only element we have known that is special about him). we can no longer capture any shot showing he lives as a real patient. but i thought we could still try to dig down to find out there must be something in his current life that reflects the fact that he was once a patient.This process would have taken a long time and what was critical was that we needed to spend more time with him. But due to a lot of reasons, (plus my group members thought it was not a good idea to take up so much time of him. maybe they were right as it would be unfair and we didn't plan to have budget to pay for him to keep him with us more). we could only see him a few times (this is one of the restraints of student project). and the footage we got of him doing above things doesn't make a good story. because the relation between these footage of themes is unclear. it was quite plain and you cannot say one group of footage leads to another group. they didn't happen. there were not cause and effect relation. what we have done was fine but i thought what we could have done was to chill with him and find out what is his current life like now and in what situation he often feels again that he was once a patient. we need to find out what's in his life happening now that is to do with M.E. 

In the finished video you will see we relied heavily on interview (talking head )because the rest of the footage didn't make good story themselves alone and we didn't know what's good story about him that we can film. I know in the interview his story in the past really sounds good but it is such a shame we cannot visualise the story. documentary is after all a visual medium and now i feel in our video there is no highlight to be 'looked at' and his story could have just been edited in an audio podcast i guess it would still be a success. 

the filming didn't go the way i wanted it to go and i don't know if the communication with Ren was in a different direction things would change. 

there is something else i wanted to complain about the course. we were not taught clearly how a student, short film should be different from those feature documentary film. we were given the viewings of lengthy documentaries in industry usually up to 90 mins long. the production approaches between short and long films are obviously disparate. some approaches cannot be fully applied in short documentary. it is fine now as we produced only an 8 min documentary so without enough visual evidence of Ren's being a patient the video still looks fine but i really hope tutors can give us some guidance about what a good student project should look like. this reminds me that we were shown twice master year student's film of 6 mins that was helpful. 

maybe i am assessing my work comparing it with those masterpiece so the video seems to be weak. but i know now the efforts we should put in. and about the currently accomplished version i could only say we have tried our best and some budget approach might help and maybe it should have been a longer film. 

lighting flaws

in choosing the room to do the interview we didn't have actual plans about lighting. i didn't know if the room we chose was south facing. we sometimes filmed against windows ( for example those clips of him doing music editing)

we relied generally on natural lighting 

filming photographs

Minites and Agenda (shared with other members)

Minutes and Agendas

Meeting 1: 30/1/2014

Agenda: to discuss our initial ideas for our documentary.

Minutes:

-    We each ‘pitched’ our ideas for documentaries that we had come up with individually, based on individual research.

-    These ideas included: Kris Singh, Street Artists, Women and University Subjects, A Week Without the Internet, Me VS M.E., Pets and their Owners, Spiritual Diet and a Day on the Bus.

-    We discuss the pros, cons and limitations of each idea.

-    We narrowed down our ideas to A Week Without the Internet, Me VS M.E, and a Day on the Bus.

-    We decided to individually research each idea to gain a better understanding and feed back at the next meeting.

Meeting 2: 3/2/2014

Agenda: to discuss each of our strengths and weaknesses and assign roles within the team.

Minutes:

-    We each discussed our skills, experiences and areas of weakness.

-    Hannah suggested she has skills in organisation, creative direction, research and editing. She also said that she has limited experience in sound, lighting and camerawork.

-    Luca suggested that he has skills and experience in camerawork, editing and research. He said that he has little experience in leadership, organisation or creative direction.

-    Ivy suggested that she has good knowledge and experience in sound work and very god research, but has limited experience in communication, editing and leadership.

-    Based on this we decided Hannah would be director, Ivy would be sound technician, Luca would be cameraman and we would share the editing.

Meeting 3: 10/2/2014

Agenda: to choose which idea we would like to continue with for the project.

Minutes:

-    We chose to make Me VS M.E.

-    We think it is an interesting topic and emotive story that will allow for experimentation.

-    We decided to each do individual research on Ren and M.E. and post in on the team Facebook page.

-    We discussed our upcoming presentation ‘Sans Soleil’ and made a list of the things we wanted to include. We decided to individually research the documentary, then later meet to put our research together as a group.

Meeting 4: 13/2/2014

Agenda: to create our presentation on ‘Sans Soleil.’

Minutes:

-    We discussed our individual research and viewings.

-    We put our ideas together into a Powerpoint presentation.

-    We practiced the presentation.

-    Hannah showed the team the work she had done on the pitch and the trailer she had made for the pitch, to which the team made suggestions and improvements.

Meeting 5: 14/2/2014

Agenda: to present our Sans Soleil presentation and our pitch.

Minutes:

-    The research in our presentation was good.

-    We did not spend enough time polishing the presentation and some slides were disorganised.

-    We need to improve on not reading from paper.

-    Our pitch went well, was smooth and organised. Several class members commented that they liked the trailer and that the subject was interesting

Meeting 6: 25/2/2014

Agenda: to discuss all of our current research to date.

Minutes:

-    We discussed all of our individual research (videos, newspaper articles, readings, statistics.)

-    Arrange that Hannah, as director, would correspond with Ren Gill.

-    Hannah sent an email to Ren detailing our project, our intent and details of filming.

-    Hannah created a shooting schedule and shared this with the team.

Meeting 7: 28/2/2014

Agenda: to conduct campus interviews on the subject of M.E.

Minutes:

-    We conducted interviews on campus.

-    We found that most participants knew what M.E. was and knew people who were affected by it. They also said they had not seen many instances of M.E. in the media.

-    Hannah shared the basic structure of the video she created with he group.

Meeting 8: 1/3/2014

Agenda: to discuss our plans due to a lack of response from Ren Gill.

Minutes:

-    We discussed alternative ideas for the project incase Ren had to drop out of the project.

-    Luckily we had a reply from Ren, so decided to stick to our idea as we feel it is the most interesting and engaging.

Video shoot 1: 12/3/2014

-    Stanmer park

-    We all met Ren, discussed his availability and commitments

-    Arranged to meet Ren every Wednesday for the next 3 weeks

-    Bad weather: clouds and wind

-    Issues with booking equipment - remember to book in advance next week

-    20-30 mins of footage

Video shoot 2: 27/3/2014

-    Interview at Ren’s house

-    20-25 mins of interview with Ren

-    10 mins of interview with his housemate Luke Flegg

Meeting 9: 7/4/2014

Agenda: discuss the evolution of the project and the direction that we are heading in.

Minutes:

- We have chosen to focus on young people with M.E., however after further discussion we decided that we should focus on Ren and make the documentary more of a ‘portrait of a person.’

-    Focusing on Ren’s personal story rather than M.E as a whole will make the documentary emotive and more focused.

Video shoot 3: 9/4/2014

-    Day in the life shoot

-    Yoga, cooking, shopping, sleeping time lapse, producing

Video shoot 4: 20/4/2014

-    Busking

-    Lanes, park, time lapse

Editing session 1: 14/5/2014

-    Hannah cut up all the clips into small/important sections. Luca cut video diaries into sections.

Editing session 2: 15/5/2014

-    Hannah edited the documentary into a rough draft.

Editing session 3: 16/5/2014

-    Ivy and Hannah added cutaways to the interviews, tidied up the editing and sound.

Editing session 4: 17/5/2014

-    Team editing session. Luca viewed the video, offered opinions and helped to fix and technical issues.

Editing session 5: 18/5/2014

- Completed video. 

Treatment (shared with other group members)

Treatment

Synopsis:

‘Me VS M.E’ takes its title from the video diaries of a young man diagnosed in 2011 with Myalgic Encephalomyelitis (M.E.) It reflects on his life coping, and helping others with this debilitating, but misunderstood condition through use of his video diary's on Facebook and Youtube.

Main characters:

The documentary features Ren Gill, a 23 year old musician and performer who was prevented from achieving his dreams and ambitions as a musician at the age of 19. After many years seeking medical help both in England and in America he was eventually diagnosed and during his search for a cure, he tried many different forms of treatment, trying to shed light on his illness. This included strict diet control, medication, psychologists and many other forms of treatment offered on the National Health and at Private Clinics. Once diagnosed he discovered that there was still very little help for M.E sufferers. He decided to help other's in the same position as himself and to share his knowledge and experience of coping with M.E. with others via social media. As the condition is a topical and misunderstood issue which many people have difficulties understanding and talking about, hearing ren talk openly exploring these issues is emotive and eye opening. Ren answers questions and shares his experiences of the medical treatments he has received, and success of his video diaries. The documentary encapsulates the past 3 years of his Ren's life, from his diagnosis through to his journey of recovery.

Story structure:

The story will begin by showing Ren as a young and talented musician. Scenes of him busking will cause the audience to believe that he is busking and wonder why he is busking, playing with their expectations. The fact that he suffers with M.E will be later introduced, adding a new dynamic to the documentary. The documentary will then follow the story of his illness, his journey through recovery, his feelings, his experiences of sharing the condition, and how he has helped others. The end will focus on how he turned a negative situation into a positive one, and that there is hope for all sufferers of M.E.

paper edit

Transcription from interview with Ren Gill

            We typed up this transcript of our interview with Ren Gill so that we can later sort through this material and use it to structure our documentary. It may be easier to go through written content and pick out the sections that are focused and that are relevant than in video footage. We will highlight the important parts and use them to inform our work when editing the footage.

Themes:

• Pre-sickness

• Music career

• Becoming sick

• Diagnosis

• After diagnosis and recovery

• Representation of M.E.

• Video diaries

Interviewer:                         Please give a brief introduction about yourself (your name, who you are, where you live, your career, your condition.)

Ren:                            Hey, my name is Ren. I’m 23 years old and I’ve suffered with chronic fatigue syndrome for the past five years since I was 18 years old. I’m a musician, I love music, it’s all I want to do and when I am well I will carry on doing so. I’m from Brighton - well no, I live in Brighton, I’m from north Wales originally.

Interviewer:             Going back to five years ago what were your hobbies, your interests, your social activities?

Ren:                            Before I got sick, music was like - music was all I wanted to do. I knew it was all I wanted to do. It was just one of those things that from when I was a little kid and first picked up this little tiny tinky guitar, I just knew that that’s what I wanted to do with my life. I was quite lucky in a way because some people go through a long time going ‘oh what should I do?’ but I knew, just because of the way it made me feel to play and sing in front of people. It was made me feel like thats where I should be and thats where I belong. And my life before getting sick, I was very active, I did a lot of things. I used to go to the gym a lot, I used to play a lot of music, I used to have a really active social life, see a lot of my mates and go out all of the time to lots of parties and just had a first thirst for life I guess, and a thirst for knowledge and playing, having fun and experiencing the world.

Interviewer:             You talk about music and the great influence it has had on your life. What are your musical inspirations and your experiences of building your career?

Ren:                Pre-sickness? Before getting sick my influence were The Red Hot Chilli Peppers, The Police - my dad used to play loads of The Police and stuff like that constantly when I was growing up. My mum was a signing teacher so I’ve got lots of influence coming from all angles like I grew up around music so it’s quite a natural thing to come to. And then, before I got sick I was producing a lot of my own music, I was gigging all the time, I always used to take my guitar to parties and make up songs on the spot with all of my mates and stuff. It’s always been my passion. Then I did a course in university in Bath, music, and the first year I joined a band and that was going really well, started getting recognition. I remember I went out busking and it was the big turning point. I went busking on the streets of Bath and I sat there with my guitar and this big bloke stood there watching me for the whole song not saying a word, and I was like ‘oh, who is this guy?’ because he was just standing there alone. And he came up to me after and was like, ‘this is my email address, I want you to email me, I have an exciting proposition for you.’ And I didn't really think much of it and gave him my details and then got a big email saying ‘I’m Eric, I work for a company who are producing Plan B and Daniel Beddingfield, I want to produce an album for you.’ It was just amazing, since then it sort of snowballed, I started recording an album up in London and it just snowballed. The next thing I know I’m recording, I’m gigging, I’m meeting some of my idols, singing in front of huge crowds. It was just really exciting. Really exciting time in my life.

Interviewer:                         When were you diagnosed with M.E?

Ren:                            I first got sick with M.E. in 2008 but my first diagnoses was in 2011. When I first got sick it was really scary because over that 2 years I went to the doctors a lot of times and was like, there is something wrong with me, I need to know what is wrong with me.  The hardest thing was that I didn’t known and when you don’t know why your sick, when people go ‘why are you feeling like this Ren?’ I just didn't know. The inner turmoil and how much I used to beat myself up because of it and asked myself why I couldn’t do what normal people do - I remember waking up after a night out and I just woke up in this complete fog like I hadn’t slept in months and months. All my muscles felt so drained and my head - I just couldn’t think and I thought I had just woken up with a really bad flu or sickness, it’s going to away, I’ll be fine. And then, it didn't go away and it just got worse and worse. About a month into it I was like, something is really wrong here, because I’ve had a month where I just feel completely detached from the world. My personality had suddenly disappeared, I couldn’t think spontaneously anymore. All I wanted to do was sleep but because I was used to this really active lifestyle where I was gigging, going to the gym, all that sort of stuff - I tried to keep that stuff up. And I found myself just going home and collapsing and having these spells where I would just be crying and so confused. I just thought it was going to be the flu because normally when you get sick, for a normal healthy person you get sick and then you slowly recover and that’s that. So a month into it I start getting a bit scared, start going to the doctors, get all my bloods taken and they said maybe you’re depressed, try exercising more. And obviously that’s the wrong advice to be giving to someone with M.E. I started trying to push myself more, ignoring it, I was just getting worse and worse and worse. And getting even more sick, an two months into it I’m even more depressed and so confused. This is the first year of university as well when you’re trying to be making lots of friends and lots of social groups. I felt so isolated because I’d lost my personality, I’d lost any zest for getting involved with anything. I felt so alienated because I didn’t know what was happening and I thought, it must be depression, the doctors have said its depression, I wonder why I’m depressed. I was trying to rack my brain for some reason that I was depressed, but the only reason I was depressed was that I was so sick. Anyway, this went on in varying degrees for about 2 years, over which time it was a nightmare. That was the hardest time, before I had the diagnosis was the hardest time. The worst thing is not knowing - the worst thing is knowing that there’s something completely wrong with you, in your bones, your body and your soul, this feeling of complete nothingness. Emptiness of all energy and all free thought and all ability to laugh and all that sort of stuff. That was just gone for two years. It was like living in prison, so when people said ‘are you okay?’ I just had to say yes, I didn’t know what was up. I couldn’t say I’ve got chronic fatigue, I’ve got M.E. So, that was really, really difficult but I managed to get through uni and I missed to many lectures but luckily my tutor was quite understanding and I was doing work still from home. I was still songwriting a lot, it fed a lot of my music. At this time as well all the record label stuff started taking off and at the same time the more sick I got - it was almost a bit of a paradox - the more sick I got the more my music career was taking off, so there was these two opposing things. I started being managed, getting an agent who had done Amy Winehouse and the Red Hot Chilli Peppers and some of my idols. I was playing all these big important shows in front of all these people saying ‘Ren, you’re going to be a star! You’re going to do so well!’ And my life, everything I’ve been working towards, while that is taking off my health is plummeting and I was getting to the point where I would go on stage and pretend like everything was fine. I would play like everything was fine, complete composure and without anyone being aware of the fact that that whole day I had just been sleeping in the back of a car, sometimes crying before I got on stage. After I got off stage I was just so drained from conjuring up that half an hour of energy that I just had to collapse. Sometimes - because we went on a week long tour - and that was one of the hardest weeks of my life because I was away from my bed and my routine. I had to just sleep in the car and without knowing that I had M.E. it was just so difficult.

Interviewer:                         Before your diagnosis, did you know much about M.E.?

Ren:                            Before my diagnosis I knew nothing about M.E. I knew … because it’s not out there, it’s not a sickness thats really out there in the public. I think people find out about M.E. because they have a friend or a family member who has been diagnosed, but there’s not very much awareness about it, but there’s quite a lot of young people with it which is quite surprising.

Interviewer:             How did you feel when you were diagnosed?

Ren:                            Such relief. When I was diagnosed I just felt such relief so have a name for what I had been suffering with. I finally had something tangible, which is all I wanted. I remember even about a month just saying to my mate saying ‘I just want to know whats wrong with me.’ I had so many blood tests -  you name it. What ever I could get my hands on. I was like okay, test me for diabetes, test me for coeliac disease, I had a camera stuffed down my throat and they took a biopsy of my throat for coeliac disease. I had god knows how many other invasive surgeries. I wanted to have a serious illness. I wanted them to say, Ren you’ve got this degenerative disease, you’ve got this, you’ve got that, because I was so confused and lost. I knew something wasn't right. So its a weird situation when you are hoping for something like that but I just really wanted a name for it. And when they said ‘you’ve got chronic fatigue syndrome, there are these people who feel the same as you,’ it was a big relief to know that I had that. It helped because then I could start saying to people, I’ve got this.

Interviewer:                         Did you feel that after the diagnosis it was a big change?

Ren:                            Yes, I feel that after the diagnosis it was a big change because I could then start searching for what was making people with M.E. - that specific thing - better. I could then start pursuing that myself because I always knew I was going to get better, no matter what it took I am going to do everything in my power to get better. So when I had M.E. I could go okay, I’ve got M.E. so what do I do now.

Interviewer:                         After your diagnosis, did you find that there was a big impact on your social life, musical career, finding a job?

Ren:                            I think that after I had the diagnosis and I had a name for it, things did change. I could then say to my friends, I’ve got M.E. It wasn't like before when they were saying ‘why aren’t you coming out? Why are you being boring?’ I genuinely had something were I could say ‘look, I’ve got this’ and it was like my anchor and it was good. Before all my bandmates would go out in the evening and I felt like I had to do the same to be normal, so when I had this thing I could say I’ve got a condition, I need to take care of myself. It was a big relief in that respect. It was really good to have something tangible.

Interviewer:                         Are you performing as much as you used to?  

Ren:                            I made the conscious decision in 2012 to stop and really take the time out for myself because up until that point I was pushing myself, I was still gigging and I was still touring. I thought I can’t let this overtake my life, I can’t be M.E., it’s a part of me but I have to work around it. I remember a day in the studio where I went and threw up blood in the toilet and came back like nothing had happened and my body was so ravaged and so tired of me pushing myself. There came a time where I realised if I keep on pushing myself I’m not going to get better. I read that the people that got better were the people that really rested, listened to their bodies, and just pursued that. So I made a conscious decision in the summer of 2012 to stop pursuing music which was really tough to do because I got to the point where I was talking to all these record labels and was getting sponsorships. It was really tough to walk away from the life that I have been wanting to have ever since I can remember. But I think its an investment and I knew that once I am better I can come back to it, its not like I’m walking away from it forever. So I made a decision to move home with my mum and started resting a lot more.

Interviewer:             Apart from giving yourself time to rest, were there any other treatments that you tried?

Ren:                            Prior to diagnosis I tried so many treatments but there were mainly depression based treatments. I did about 8 months of cognitive behavioural therapy, herbal supplements for depression, sauna, exercise when I could, lots of different things to try and combat depression. When I moved home I knew what I had, I found a private doctor and done a bunch of tests that cost quite a lot of money. They should really be available on the NHS and I hope thats what raising awareness will do, will give people with M.E. access to more tests. I found out I had a stomach infection that I had been harbouring for years. I got rid of those with some powerful antibiotics. I was very sick, I was in bed to the point where I couldn't do much but I could song write. I started to start a campaign to raise money because I tried a course of antibiotics which didn't kill off this infection I had because its quite rare. I started researching and found there was the best doctor in the world for my condition but he lived in New York. I’m from quite a poor family and I was too sick to work so I started recording an album because thats what I can do best. So in my bedroom I started working in an EP because thats what I can do with my energy and thats what I can do well. I recorded a 5 track EP and poured my heart and soul into the songs and made them specifically about M.E. to try and raise money to see this doctor. Then I started selling it online and it was overwhelming. I didn’t expect the money to flood in but I made about £1500 in a months and that paid for me to get to New York and it paid for my treatment and it paid for my antibiotics and it got rid of it. After that I noticed a big shift in my health for the positive. I started noticing more energy, clearer skin, but I was still sick. That was tough because in my mind I thought that once the infection was gone I ready to go back to music. I was so convinced and committed to that being the case. But it doesn't work like that and progress isn’t always straight up. I get really depressed sometimes but my mind is like, this isn’t helping you, what else can you do. What is the next thing. I decided to move to Brighton because at that point I had been living with my mum for a year. I had taken a year out of music and felt like I was really surrendering to the illness. I need to live a bit more, so I decided to move to Brighton with some friends and here I am in this house which is lovely.

Interviewer:             When feeling your worst does your day to day routine differ to when you feel well?

Ren:                            I’ve gotten myself to a point  where I am able to do a lot more and live close to a normal life. When I was at my worst,             I spent months and months in bed. I would wake up in a complete fog, feeling so drained like I hadn’t slept in a month. I’d have food, I’d go back to bed because I couldn’t deal with doing much else. I’d watch films - I was even too tired to read. That was literally the extent of it. The height of my day was getting excited about a new episode of Heroes or something. That is quite a sad existence because that went on for months and in my mind I have such a zest for life and that’s why I used to get very depressed because I wanted to live so much. Hearing stories about friends going travelling or my ex-band mates going off and joining successful bands when I’m just here in this prison cell in my mind. Having a prison sentence and not knowing how long it is, not knowing when my release is going to be, not knowing if I’m ever going to be released or get better. It was really tough but I have always been very persistant in that I am going to get better. I was always trying to do things like yoga or specific diets, I just couldn't be static or just surrender.

Interviewer:                         Would you say that the severity of M.E. underrepresented?

Ren:                            I would say that it is underrepresented, before my diagnosis I knew nothing about M.E. but I think the thing is, people think ‘oh! M.E., that’s the sickness where you get really tired’ and that does not cover it even slightly. That is the tip of the iceberg. M.E. is not only tiredness it is a prison, it’s depression, it is all your life’s ambitions being taken away from you. Then I have various other symptoms like blurry vision, muscle weakness, sometimes I can’t sleep and sometimes I sleep loads. Loads of different things manifest. I think people don’t realise the severity. Before getting M.E. I’ve had the flu and stuff and that is a breeze compared to M.E. in terms of the level of tiredness. You just feel so so tired. What’s tough is that a lot of young people have it, but when they say they have it, because its not really in the public eye people aren’t really aware of just how much that affects somebodies life. If you have something thats more in the public eye, say MS or alzheimers there’s more known about it. M.E is less known about it so there is not that patience. I think that young peoples friends really need to give them that support and patience because its really important. For young people particularly, people need to understand that these people are there. When you are young that development stage is such an important stage to the development of a human, and when you spend all that time in bed it feels like its taking your life away.

Interviewer:                         After your diagnosis did your family start to develop an idea of the severity of the condition?

Ren:                            Yes, I think after the diagnosis my family -  well, my dad is a psychotherapist anyway so when he thought I was depressed he was giving me advice on how to deal with depression or trying to delve into my childhood which obviously wouldn’t help. But as soon as I had the diagnosis of M.E., they did some research and found out it was quite serious. When I told my friends I found that it was the same, they were like, ‘oh you’ve actually got a condition,’ and that is good but I feel like even so M.E. needs to be more in the public eye so it is more understood and there is more support for people with M.E. As it stands even now its such an unknown condition. Even in the medical world they don't know much about it yet. I guess it is like when AIDS was first discovered no one knew much about it so it was a confusing thing. I feel like thats where M.E. is because they haven't got a cure and they haven't got a treatment. People don't want to talk about it but it needs to be talked about because so many people are suffering who could be suffering less if it was in the public eye.

Interviewer:             Tell us about your video diaries?

Ren:                            It was around December and I was starting to feel a bit hopeless again. In my mind I had this time frame of my recovery, and I was sure that I was going to be better by 5 years into this illness. But when I was going downhill again after 5 years I was like, I need to do something to keep myself sane and away from depression. Then I decided to turn out everything I had learnt from 5 years of coping strategies, to teach other people. I thought if I can share something and I can turn this real negative situation into a positive then its worth. I came up with this idea just to do a video diary for Facebook and Youtube, just for people with M.E. so they don't feel so alone. I remember one of the hardest things for me was feeling so alone. I didn't know any people my age with M.E. I thought it was an illness that affected 40, 50 year old women and I didn't know people my age and that was the tough thing. I decide to set up a site where people could talk to each other, talk to me and where I share my experiences of what it is like as a young lad growing up with M.E.

Interviewer:             A lot of people hide their illness. What do you think sharing it through the video diaries has done for you?

Ren:                            I think sharing it as opposed to hiding my, cos I hated my illness for long time. Even when I met my diagnosis, I wouldn’t wanna say ‘hi my name is Ren and I got M.E. cos I wouldn’t wanna people to put me or think of me cos I don’t need to tell people if it isn’t really necessary. I just thought you know what , that is the problem with something. Even with the impression as well, if you keep it to yourself, and you keep it in your mind, it is not helping you and it is not helping other people understand you. And then you put it out there, in the public, it’s like, I am turning this real negative thing into something positive for people to see it.

Interviewer:                         What sort of feedback have you got from these video dairies?

Ren:                            Brilliant! I have had the amazing feedback from the video dairies. The biggest rewards of it is that I have had people say, the most moving message is, I get people contact me and say ‘I felt so alone but now I feel so good to have somebody that’s there who I know understands me and is going through the same thing like I do. That helps me so much and you have made feel a lot more optimistic and hopeful about recovering. Just hearing that. If I have made somebody else’s day better, even of it’s just one person, all my years of suffering, so worth it.

Interviewer:                         You seem to have connected with a lot of people on the page.  Why do you think you have had so much positive feedback?

Ren:                            I think it is just the way I am not trying to be anything, trying to, there is a lot in this world these days, people trying to look the best, trying to present themselves the best, it’s all a little bit like you are putting out your best possible version of yourself, I think what it was was the realness of I am sick, I am not trying to speak about things, I am not trying to make people laugh, I am just talking, honestly, just completely free of anything, this is it, this is my life, it’s tough. I think people craved that in this world where everything is airbrushed, everything is not so real, people want reality. It’s real. That’s what people need. That’s what people connect.

Interviewer:                         So what sort of thing, you were just about to upload your first youtube video , what was your main hopes for your video dairies ? what do you think that would improve yourself ?

Ren:                            When I firstly uploaded my videos I had two hopes. The first one is that I was gonna help people feel not so alone, like help people feel that there is hope, I would use my experiences, the things that help me find, get me to a place where I am able to get to the gym now sometimes. Running and stuff like that I have never been able to do before. I am trying to help people find that place themselves. The second thing was, I , sometimes I am a bit rubbish to stick to things. So if I got a lot of people following my moves, it gives me a lot more strength to follow things through. Because I know there are people who want to see my videos, wanting to truck into my progress, and I feel now almost like a responsibility, if I can get well, then it proves that all those people that are watching can get well, now it would be such a good feeling to be able to say I am better now so you can get better as well. It will just prove to them that they can, that’s what people need, they just need more people in their life have gotten completely well so they can go’ This isn’t something I have to deal with forever because I am getting over this. People will.’ I have met people that have got M.E. and they have got over it and these are some most inspirational people in my life. So that’s what I am trying to provide.

Interviewer:                         Do you think there needs to be more awareness than now, entirely?

Ren:                            Yes I think awareness leads to cures. awareness leads to people not feeling so alone. Awareness , sharing , and that’s just so important , that just means the way you can spread the awareness is just talking about it, sharing about it, being supportive to the people you know that have got it. Just doing everything you can do, your power as a human to spread the words.

Interviewer:                         Do you think your personal condition is improving?

Ren:                            Yeah my personal condition is improved. Even from the start of the video, cos I have been following a special god healing diet . I have been doing

Ren:                            This is not even all of them but this is what I have managed to save. This is just so people can get a bit of idea. A lot of my benefits and stuff. I have tried to make myself well.

Interviewer:                         Did you find any of them beneficial?

Ren:                             At the time I was really sick, I go on these forums and people be like ……  I was just so desperate I read that and I go I am gonna try it, I just need to narrow things. (1:45) I tried it for like a month or two, sometimes they made me worse and sometimes they made me feel marginally better. This was the point where I was relying on things externally because I was in that’ if I take something I will get better mentality’. And now I have sort of learnt.  (2:04) I have quite the knowledge of a fully qualified nutritionist with through no desire on my own. It bores me but I know so much about it. I can tell you about all of these things and exactly what they do. I have done hours and hours and hours of research on them all. I just wanted to fill my mind with most knowledge possible for chance of recovery.

Interviewer:                         Do you find you have got enough knowledge for yourself to actually help other people?

Ren:                            Ironically advice for all of this supplements don’t help much really unless  you have got a specific, well in my case , maybe some people they do help but for me, at the moment I just take XXX for my own good. I take sometimes digest XXX. And that’s it. I take two things a day. I was at a point where I was taking, swallowing, 40 or 50 pills a day. Which is an excessive amount. Sometimes they pick me up. Xxx anti depression, I tried that for three weeks, it made me feel like zombie. I was not necessarily depressed but I was depressed about the fact that I thought I was ill. But if you get something out of your depression and your still ill. It’s a bit of a strange place to be. I definitely felt completely rubbish. I spent a lot of money on this but if by chance, that happened to be one that I found and took and made me better it would be so worth it so at the time even now I don’t regret it. It was just something that had to be done to rule it all out but…

Interviewer:                         Do you feel that box out can make you feel how serious it used to be?

Ren:                            Yeah I mean, this isn’t even, I can show inside of the drawer, this isn’t even all of it, that’s the thing like, when I put them all into the same place cos that’s what I thought I would do. It just gets all in the same place, when I look to the amount, this is just the stuff that still got stuff in it, the stuff I have taken, if I had all the supplements over board I think it would fill probably six or seven of this box, if not more and it’s like , it did make me feel like just go ‘fuck’… that’s a lot of stuff.

Interviewer:                         Do you find like that something that is not recognisable, there is actually xxx out there.

Ren:                            The other thing I learnt is  there is two, there is division between conventional medicine and XXX natural medicine, but at the time I thought ‘oh natural it’s obviously good and harm and natural and that’s just as much as a business man, and they are trying to sell you these things so when you go online and you type and you got all this’ oh this herb will give you this  benefits’. What you got to realize is they just got to sell you this but at the time I was so desperate and I saw ‘oh chronicle fatigue syndrome and it helps get rid of brain fxxx or tiredness I will take that but it still just you are taken into something, you take this and you will get better. I a lot of healing comes from yourself and that’s what I have learnt . so all of this things , yeah they helped to an extent and maybe a lot of them helped me to get to where I am now which is the position where I can sit and talk to you, who knows?  I don’t regret it but it doesn’t make me feel wow.

Interviewer:                         What would you say was a major component, a mental responsibility or physical?  Overcoming it?

Ren:                            Definitely mental was the most important thing to conquer first, I had to have hope because without hope you just wont be active. There has been a lot of times in days where I have almost completely lost it all and most days I just wanted to disappear completely and I got to the point where a few times I did just wanna completely disappear and a few times I feel like acting on it and knowing that there are people getting well, sometimes people have got forty years of sickness. That mental hope hold onto that even if it’s a little flicker, that’s the most important thing for recovering. And the more you can feed it the more it can grow and the more proactive you will be. The more proactive I have started a blog and then snowballed onto starting this song and snowballed onto doing the lightening process and here I am, better, a lot better than I was.  For anybody watching who might have M.E. , the most important thing is just to know there is hope, but you do need to act on it and you cant just go, maybe you don’t have to be as dramatic as I am, I will admit that I was quite extreme the way I go about things,  I will research and research and research until my brain was full of everything, you don’t need to be this extreme but you do need to be proactive. If you wanna get better, if you really wanna get well you need to be commit to being well, you need to do everything you can to get better.

Interviewer:                         Do you thing doctors or specialists should put much more effort on researching and figuring out how to cure people?

Ren:                            I feel like GPs, when you go in there, and you say I have got this wrong with me, they should spend a little bit more time cos I didn’t know I got M.E. until I went to my GP and said, cos I have done a lot of research, this was about two and a half years and I said I have had M.E. and if they sat down with you for a little bit longer ‘ as opposed to just ‘oh so you are tired, this is probably about depression’. If they sat down with you for longer, and really really  listen to you  and say ‘ when did it start? How did it start? Do you have any idea about and really went into depth cos if I had my diagnosis in the first year I might have been better now cos I have called early and when people catch this thing early they haven’t pushed themselves so I could get better chance of recovery. And some people are lucky, some GPs are really good, I am not knocking all GPs cos I think some GPs do notice these things and are really good but I think if it was sort of like widespread that GPs really sit down and listen cos I think getting an early diagnosis is really important.

Ren:                            Busking has been really great, I haven’t been able to hold down a job because of the fact that I cant commit, I cant say’ I will be in on Saturday, and I will be able to work in this hours and hours because I just don’t know how I am gonna be from the one day to the next,  it can change drastically in a few days so busking is brilliant because I can literally if in a day I feel slightly perky I can go ‘I am gonna take my guitar, I am gonna take my porter of Bxxx I am gonna get onto street and sing some songs, which is what I love doing anyway,  so it doesn’t even feel like work, but to be honest, we sat outside, singing to people, doing what I used to love, and doing what I used to do a lot of time, and then making a little bit of income from that because, a lot of thing as well is my pride, with M.E. I don’t like being on benefits , I am not someone who likes to be on benefits and get the money. I wanna earn it and I really do,  I think there is misconception of people getting benefits, I want that went on my way and I wanna spend my money that I have made,  so busking is really great for me because its like for my craft, what I have spent years earning, I can make a bit of money.  So that’s been really nice to be able to do that.  

Ren:                            I feel it’s the way you present yourself when you busk, the way I would do it, cos I would go on the street and be quite friendly and talk to the crowds, because what you are essentially doing is entertaining people walking past, and I think street entertainment is a wicked thing I think it’s really great because you are singing to such a wide audience. Suppose people will just come to a gig, because the sort of people wanting to go a gig, are there for the gig, but when you are busking you are singing to such a wide audience . I am not sure about how strong the misconception is. 

Interviewer:                         Do you have unpleasant experience about making friends? Like you are stereotyped? Generally relationships?

Ren:                            I feel M.E. has definitely affected my relationships in a big way, I got friends who will always be there, which is I feel really lucky about, but I feel I cant be as close to those friends as those friends are with each other because they are always going out and doing fun things together, and I cant, physically I have to, even on a good day I have to say I cant go out in the evening because I am gonna suffer tomorrow. So I have completely stopped going out to clubs so it really has affected my personal relationships.  I still keep in touch with them and I still have tried my best to but it’s normally online, and that’s why internet is such a good thing.

Interviewer:                         What about relationships?

Ren:                            I haven’t  had this ‘I want to go out because I want to find a girlfriend’ feeling. My last relationship definitely suffered a bit because of my health condition but I wasn’t able to do so much. A lot of was me being myself up, cos I want to be out to do these things and being getting frustrated of myself, so when I completely removed myself from that situation, frustration is removed as well. 

Interview with Luke Flegg

Interviewer:                                     How long have you known Ren?

Luke:                                      I have know him for about a year.

Interviewer:                                     Were you aware of his condition when you met him?

Luke:                                     Not straight away. Yeah he is really open about it. He is sort of upfront honest and happy to talk about his M.E. kind of person. And quite confident of himself and stuff. I suppose no one kind of came up to me and was like ‘ oh this is Ren, hes got M.E. it wasn’t like that cos I guess you don’t need to know. But I guess, if you comes up a conversation like ‘ my first memory of ren when he was living in my mate’s house and I came there quiet a lot was he generally came from downstairs topless with a guitar and I was like ‘ is this guy trying to show off or something and then I was like wow he is an amazing musician and I kind of realize more and more over time there was no egotistic or showing off thing, he was always topless. He would quite often come into  a social space without necessarily communicate with anyone , not always, cos he is amazingly good socially, he will charm anyone, really funny, and  smart and confident and really listen to you, just great at social thing and that’s when I start to realize that he wasn’t sort of always, he didn’t have the energy, and that’s when I got a taste of him not really  always want to mingle with people but he seems to always like to being around them.

Interviewer:                                     Would you say there has been days where you have, because I find he is quite a character , would you say there was days when you notice his difference?

Friend:                                   Yes of course, it’s not immediately clear always whether he is in a peak or ??  I guess partly cos he is always in here in his room producing music on his laptop which he obsessively like and sometimes the whole day he barely lives, if you chat with him you can tell. Living with him I can generally tell when hes, something about the way his eyes move and he holds himself speedy move. You can generally tell if he is ??? and he is quite transparent about this.

Interviewer:                                     Would you say there has been progression you know about him getting better?

Friend:                                   All I know is what hes told me and is More or less like what he thinks about me is his energy level is sort of particularly being sustained, like quite constant getting better, maybe less eratic. He still sometimes has depth. When he is on a high, he is really great, I think he is pretty good about managing being a dip , I can try to imagine but I think he does an amazing job of, not I would encourage him to disengage in people at all like that makes me sad and I really like being friends with people who would like call for help. I think its an important thing to have. He doesn’t make you problems. He would be pretty messy sometimes he can be a bit like open things  fall it down in my mouth move this.

Interviewer:                                     Before Ren told you about his condition have you ever heard about M.E. ?

Friend:                                   Yeah only barely slightly, barely at  all.  I have had no idea about questions like ‘do you know the difference between M.E. and chronic fatigue syndrome ‘ or ‘do you know it’s a mental thing or physical biological thing’. Really don’t think its talked about at all.  I am realizing more and more it affects loads of people, massively as well. I think it’s particularly important because it’s something nobody really understands. Or whatever a little he understands it, small amount of understanding we do have we need to share I think. It makes them all the more valuable.