In Focus: The Centre for ME/CFS and Other Invisible Illnesses and The Freedom Project

Hi all! I want to share with you my conversation with Dianne Elton.

As you know, The Freedom Project is an art event hosted by the University of Western Australia in the name of disability and debilitating illnesses.

Freedom Project Kickoff ceremony (from left to right): Gentle Heron, Freewee Ling, Dianne Elton, and Jayjay Zifanwe

The Freedom Project is co-organized not just by the UWA and Virtual Ability but also by the Centre for ME/CFS and Other Invisible Illnesses.  The Centre for ME/CFS group in SL was founded by Kirsty Bearfoot.

At The Freedom Project opening ceremony I met Dianne Elton, a representative of the Centre for ME/CFS in Second Life.

Dianne Elton at The Freedom Project opening ceremony

Hi Dianne, it's Victoria from UWA blog. I'm sending you some questions about Centre and Freedom Project.

What is the Centre for ME/CFS all about? Who founded the organization and when? Is it a RL organization as well?

DE: The Centre for ME/CFS (Myalgic Encephalomyelitis and Chronic Fatigue Syndrome), and Other Invisible Illnesses was founded by Dr. Kirsty Best, of the School of Media Communication and Culture at Murdoch University, Western Australia, as part of a research study entitled, “Illness, Isolation and the Internet”.  The study aimed to discover whether Second Life might help people with ME/CFS, and other invisible illnesses, overcome some of the isolation that illness causes.  I was a participant in this study.  It was my introduction to SL. 

The study ended some time ago and although only a very few of the participants of that study have stayed in SL, other people with ME/CFS and other invisible illnesses currently using SL, have joined the group and it remains quietly active (as befits a group of chronically ill peopleJ).

Murdoch University closed its presence in second life and the Centre for ME/CFS then transferred to Curtin University, (yet another Western Australian University with a presence in Second Life), and is now generously supported there.

http://maps.secondlife.com/secondlife/Bentley%20South/109/67/28

Whilst we do not have a real life organisation, there is a web page where members can post articles, and make comments.  The website was set up for those who cannot participate in SL, due to poor internet access, or because of their symptoms, they cannot tolerate the graphic stimulation of the virtual world.

https://groups.google.com/forum/#!forum/mecfscentre

Activities at the Centre are based around helping and supporting fellow sufferers in managing and coping with their illness.  Guided relaxation sessions are held every day to help manage pain and symptoms.  These sessions are very popular and well attended.

Once a week there is a meeting open to all members, for companionship and to discuss anything new in the research of ME/CFS.  There is also a gallery of creative work done by sufferers.  It’s an inspiring and heartening collection of art, prose and music showing the strength and creativity of people living day to day with chronic illness.

We also have a book club, where we are reading an inspirational work by a woman living with ME/CFS.  The approach is to live a good and happy life despite illness.

There is a resource centre with information contributed by members on such topics as “treatments which have helped me”, “treatments which have not helped”, places to visit in SL, tips on using sl and many other resources. 

Games are included on the sim to help members suffering cognitive dysfunction and brain fog.

Everything at the Centre for ME/CFS and Other Invisible Illness, was suggested by the members themselves.  The centre was redesigned based on the requests and needs of members after extensive worships.

Relaxation Centre photo courtesy of Dianne Elton

What is your role in the organization?

DE: It was always the desire of the researchers who set up the project, that group members would eventually take over the running of the group.    Myself and Traskin Snakeangle, try, within the limitations and ups and downs of our health to fulfil that responsibility.  As all members are chronically ill, organisation of any event depends on the current state of health of those willing to “give it a go”. 

I also set up the Guided Relaxation Centre and facilitate this with three other members of the group.  We have about 100 guided relaxations to choose from, including:  to aid sleep, to cope with pain, guided imagery and relaxation, stress management, nature sounds to name just a few.  We also have guided relaxations available in different languages.

What is your education background and work experience from real life? How does your life experience help you at Centre for ME/CFS? How has Centre for ME/CFS improved your overall quality of life in either real life or second life?

DE: I was a teacher.  I have been in local politics and even ran my own business before falling ill.  Now I am housebound and often bedbound.  I don’t know that my education and work experience particularly helps me at the Centre for ME/CFS.  I enjoy the social contact and I tend to facilitate groups which help and work for me in coping with and managing my illness.  If it helps me, there is a good chance it will help some people with similar health issues. 

Where is the SL headquarters?

The Centre is located in Curtin University in Second Life.

http://maps.secondlife.com/secondlife/Bentley%20South/109/67/28

Is there a website?

https://groups.google.com/forum/#!forum/mecfscentre

There is also a Facebook page where we post information about activities at the centre in SL.

https://www.facebook.com/ME.CFS

What do you enjoy most about working with others in the community? What do you dislike most from your time spent working with others and being in the community?

DE: I think that what I like most about working with others in the community, is the social contact and friendship with people right around the world.  I am housebound with illness and often bedbound, so if it was not for my computer I would have almost no social contact.  What do I dislike about being in the community?  Well, nothing really.  The only thing I don’t like is that my health can suddenly get much worse at any time and this can make it impossible for me to do anything on sl for months at a time.

Does the Centre host yearly events, seminars, conferences, contests, raffles, or fund drives?

DE: As previously mentioned we are all hampered by chronic ill health, so organising any event is particularly challenging.  We try to hold an “Open Day” on May 12^th, which is ME/CFS Awareness Day.  We have managed to host a visiting speaker, and one group member has, in the past, created some wonderful builds for us to enjoy at Halloween and Christmas. He also DJs on these occasions which is a treat for us.

An Australia Day party was also a highlight for members.  With most of these events we have been lucky enough to have healthy, able bodied people, such as the researchers and the builders do a lot of the organising for us.

We were supported firstly by Murdoch University and now by Curtin University and are extremely lucky not to have to try to raise funds to keep the group going.

Are there any special events in the fall and winter?

DE:Sometimes, if he is well enough, one of our members will organise a Halloween party and a Christmas party for us.

How can people contribute to the Centre?

DE: The Centre is funded by Curtin University, however contributions of time and effort by healthy volunteers would be most welcome particularly in organising events.

How did you become involved in The Freedom Project? Who approached you to help? How do you know Jayjay?

DE: I have known Jayjay since my first days in sl.  I had read in my local paper (The West Australian), that UWA had a presence in SL with a wonderful art project.  I teleported there and Jayjay came over to help me. We have been friends ever since.  I have particularly enjoyed visiting the UWA 3D art challenge over the years.  In real life, I live relatively close to the actual UWA.

What is your hope about the Project?

DE: I hope that people without illness or disability  will gain a new perspective, respect, admiration and understanding of what it’s like to live with illness and disability.

What are you hoping to see or looking for in the art and machinima?

DE: I hope to see people with illness and disability expressing themselves freely and creatively, (and giving themselves plenty of time to do so) and thoroughly enjoying the creative process.

Thank you so much, Dianne! You have been most kind. We look forward to seeing and enjoying all the art that is part of The Freedom Project. Success and happy creating to all involved with this lofty endeavor!

Have fun and enjoy the art!

Victoria Lenoirre