This May, OMF supporter Adelia is raising awareness for ME/CFS in a very unique way. She is hosting a virtual exhibit on a virtual 3D platform called Second Life, for visitors to come and learn about ME/CFS in honor of May ME/CFS Awareness Month Visitors also can donate towards ME/CFS research supported by Open Medicine Foundation.

Today, we had the chance to chat with Adelia about her personal journey, and the new exhibit.

Can you share with us your personal journey living with ME/CFS?

I fell ill in my early 20’s, but it took me five years to receive a proper diagnosis. I was young and I had so many plans and dreams. But like most ME/CFS patients, my life has been put on hold, and I’ve had to give up on all those plans. My condition has been progressive through the years, gradually becoming worse and worse. I am now completely homebound and mostly bedridden. I’ve received little to no help from health care, and for the most part I’ve been neglected and disbelieved by authorities and society as a whole. Although I’ve been sick for over a decade, I still don’t receive financial disability as I should, for example.

Living with ME/CFS is very difficult because you must endure a wide range of debilitating symptoms all the time, and you are grieving the life you once had. You also grieve the life you could have had. It is a very lonely, limited, and isolating life.

On a positive note, living with ME/CFS has also taught me many things. For example, it has taught me how to practice self-love and being in the moment. It has also given me an increased awareness and gratitude towards the little things, such as everything I used to take for granted when I was healthy and could enjoy with ease. ME/CFS has also taught me a lot about tolerance, respect, kindness, compassion, and empathy, and about staying humble in life. I’m not sure if I would be the person I am today if it wasn’t for ME/CFS.

You are also the founder of the nonprofit, Forget ME Not. Can you tell us more about this?

“Forget ME not” is my own little non-profit project to raise awareness about the disease. I’m very limited by my symptoms in daily life, but since I still have a little bit of mental energy it allows me to sometimes be active online from my bed with my smartphone or laptop. I would never be able to go out on the streets and raise awareness physically, so this is the only solution for me.

That is amazing. When did you start using Second Life?

I have been active on and off for the past 3 years or so on a virtual 3D platform called Second Life. It is much like social media where you can meet people from all over the world, but in Second Life you also have an avatar to move around with that represents you. It is a very free and creative virtual world where you can do and create almost anything you can imagine. A lot of people log in to Second Life daily, so it offers a great opportunity to meet people you’d most likely never have a chance to meet otherwise.

Through the years it has also become a place where people support various causes they care about. There are currently over 150 non-profits in Second Life. It was my new year’s resolution to get it started this year in time for May, the ME/CFS awareness month. The very first thing I wanted to do was to involve other patients. I feel that the best way to create more awareness is to let their voices be heard as much as possible. So, I’ve been collecting information from other people with ME/CFS, and it is now being displayed in Second Life as a patient exhibit for people to come and see and learn about the disease. I’m also posting these patient stories to my “forget ME not” Facebook page, for even more exposure and for patients outside of Second Life to be able to view and share.

My project isn’t limited to this patient exhibit. We are also having musical events where performers from across the globe are streaming their talents into Second Life from the comfort of their homes. We’ve got a lot of useful information displayed about ME/CFS in general, I’m also planning for a movie night. It is all in honor of ME/CFS awareness, and since I’m a big supporter of Open Medicine Foundation, we’re doing our best to fundraise for OMF’s continued research.

As a platform for connection and support, has Second Life helped you and others with ME/CFS cope with the isolation and limitations that often come with the condition?

During all this time I’ve been active in Second Life, I’ve actually never come across anybody else with ME/CFS. Or I most likely have, but I just wasn’t aware. After all, many people use Second Life as an “escape” or a way of forgetting about their troubles in real life for a moment. Being sick and disabled is not generally something we walk around and “advertise,” and it’s not necessarily something we seek to connect with others about. But since I launched “Forget ME not”, some of my friends in Second Life have come forward and told me they, too, have ME/CFS.

I’m also making new connections with people who are affected. I think there are quite a few with this condition on Second Life, and I know for sure a large majority of users have some disability in one way or another. Without a doubt, Second Life helps people with the isolation and limitations that often come with ME/CFS and related conditions. We saw a big rise in users during the pandemic as well.

Maybe this sounds weird to anyone who hasn’t experienced it, but you connect to your avatar in Second Life. You can do many things like skydiving, surfing, horse riding, and dancing. You name it. And even though it is just on your screen, you really do experience it in that moment. Let’s say you go skydiving – your avatar is the one doing it, but you control it. The same thing happens when we get immersed while watching a movie. It feels quite real at times.

Personally, I love to dance in Second Life. I love watching my avatar move in a way that is simply not possible for me in real life with ME/CFS. My avatar does not have the punishment of post-exertional malaise afterward. It is very freeing, and for this reason, Second Life has become a coping mechanism for me. As long as I have the mental capacity, it helps me get through another day. It’s also a great way to connect with other people and enjoy each other’s company without too much effort.

What inspired you to create this amazing virtual exhibit about ME/CFS on Second Life?

Simply the fact that we still need so much more awareness about this disease in society at large. That is the main reason. But also the creative community of Second Life. I’ve seen many people do similar things there, so I thought I could too.

Can you walk us through some of the key features of your virtual exhibit?

The space I have set up in Second Life for our exhibit and events consists of a city scene. When people visit, they find themselves in a city park, with skyscrapers all around it. Some of the windows in these skyscrapers are lit up, and some of them are dark blue. In some windows, a photo of a person with ME/CFS can be seen. The photo has their portrait and their information such as first name, age, country, occupation (or their previous one, if any) and the year of when they became ill.

Most of these people are unable to work and live a normal life because their condition is so severe. We are displaying their previous occupation and other details in the purpose of demonstrating how ME/CFS truly affects anybody, at any time, from anywhere and from all walks of life.

Next to their photo is also a speech bubble. Each patient has been given the option to finish this sentence in their own words: “Living with ME/CFS is…” and their answer is displayed in their speech bubble. If they have chosen to say something else, that is displayed instead. The point of this is to let people who know nothing or very little about ME/CFS to get an insight of what living with ME/CFS is really like, according to those affected.

The city scene symbolizes the many people who are forced to live an isolated life in their homes all around the world, and can’t participate in the active life outside anymore, due to ME/CFS

In what ways do you hope your virtual exhibit will contribute to the broader conversation surrounding ME/CFS and what would you like people to take away from the experience?

I’m hoping that this project will enlighten those who know little to nothing about the disease. I hope to increase the awareness of users in Second Life as well as anybody who sees our Facebook posts, and encourage them to raise awareness with me, instead of looking away.

Breaking stigma is very important to me because a great majority of people still have a lot of preconceived notions about the condition. It is hindering patients from getting the help they need, and it also hinders essential research. I also hope that patients will feel seen and heard, that “forget ME not” can act as a safe space for users with ME/CFS. I also hope that we’ll be able to raise some funds for the important research in support of OMF.

Check out the ME/CFS Awareness Exhibit on Second Life! 

Viewing Instructions:

1. To visit the exhibit in Second Life one would first need to register a Second Life account. It is fast and free and can be done here: https://secondlife.com/
2. After doing that and logging in to the viewer, use this link: 
3. http://maps.secondlife.com/secondlife/Super%20Island/160/49/22
4. You can paste it in your internet browser or paste it directly in the Second Life viewer in the top address bar and hit Enter, this will teleport you (as it’s called) directly to forget ME not.*Please note!

 

*If you have a brand-new Second Life account, you may need to go into you settings to be able to visit.
Go into Avatar > Preferences > General and in the dropdown, select, “I want to access content rated:” they need to choose “General, Moderate, Adult”.

Adelia notes, “Even though we have no adult activities on our land whatsoever, a lot of land available for rent still has the Adult rating, including ours. That means, if they don’t change this setting, you will not be able to teleport to our land.

If anyone has any problem finding this setting and being able to visit, I am happy to walk them through it. They can search for my username in the viewer search bar: queenadelia and send me a message and I’ll be happy to help!”