Discover Adelia's inspiring journey - a dedicated Second Life Resident from Sweden. Battling Myalgic Encephalomyelitis (M.E) since 2010, her condition has progressively confined her indoors. Yet, her spirit remains unshaken as she spearheads the "Forget ME Not" project in Second Life since May 2023.
What is the purpose of the “Forget ME Not” project here in SL?
Forget ME not wants to raise awareness about the serious, debilitating, chronic illness Myalgic Encephalomyelitis and to fundraise for the much needed M.E research in support of Open Medicine Foundation.
It is a disease that has existed for decades but is still poorly understood and neglected.
Can you describe what M.E is in a bit more detail?
M.E is a complex multi-system disease with many symptoms that may change over time and differ from patient to patient. The most common symptoms of M.E are post-exertional malaise (worsening of symptoms upon even minimal exertion – this is the hallmark symptom that you won’t find in most other diseases), cognitive impairment (such as brain fog, short-term memory loss etc) and severe body pain.
Due to a symptom set that overlaps with several other diseases, clinical assessment and symptoms and the exclusion of other diseases are necessary for accurate diagnosis. The cause of M.E is unknown, but a combination of genetic and environmental factors appear to be relevant. The majority gets sick after a viral infection and they simply never recover.
Over 20 million people around the world are affected. Nobody is immune. Unfortunately, it also affects children.
What are you doing to bring awareness to the issue with your SL based project?
So far we have had several events with live musicians and DJs throughout and raised some money for research. I also arranged a patient exhibit, bringing real-life patient stories into SL and we participated in SL20B in July with an enhanced version.
The point of the exhibit is to let people who know nothing or very little about M.E get an insight according to those affected. Most of these people are unable to work and live a normal life because their condition is so severe. 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 M.E.
We also scheduled a shopping event to mark the “Severe M.E Day”, the forget ME not Fair, that will be running from August 8 until August 29.
My future plans are to keep having these events in May and August. We hope to serve as a safe and supportive space where those affected, their loved ones, their carers - can talk about M.E, or just hang out without the judgment we so often have to face from society in general.
What does Second Life mean to you?
Second Life is in no way a miracle pill for me, but I have to say it has been a life saver many times because it helps me cope with the isolation and limitations this illness so often brings.
I am still limited in SL. I have to choose my activities wisely. I can’t be socially interactive for very long without draining all of my mental energy.
But the fact that I can visit a beach and go surfing, or go dancing, or have a conversation with a person who is half-way across the globe, or be creative – it's all of these little moments that keep me going and most of these things are impossible for me in real life.
You could say SL is like a short term painkiller that gets me through another day. It has just opened up a whole new world for me and in these moments I feel free.
I have a tiny Marketplace shop and enjoy creating tattoos. I plan on including shapes at some point since I enjoy styling avatars. I also have many pets! Let’s just say I do a little bit of everything. Why limit myself more than I already am, in a world where I can be anyone and do almost anything?
In your estimation so far as a relative newbie: Is SL for everyone?
I would like to say yes, but no, I have to say that SL is for “most” people. There are many who are too sick and disabled to go online or even look at a screen, like some of the most severely affected by M.E. But I’d say that as long as you have the ability, the time and the willingness/patience to learn (SL does have a slight learning curve) then absolutely it can be for you.
Video Production by Draxtor Despres
Forget ME Not was created to raise awareness about Myalgic Encephalomyelitis, an extremely debilitating, life-changing, and complex chronic disease. Through various events, Forget ME Not aims to raise awareness and serve as a safe space for the affected people. Learn more at forgetmenotsl.com