VR for ME/CFS & Bedbound Patients : A Brief Guide
Video Games & Chronic Illness Experience
As I detailed in "Video Games for Chronic Illness" there are a myriad of benefits of gaming for those of us who are severely ill. To summarize briefly, however, the key is experience. The largest downside to being bedbound or otherwise severely ill is the massive reduction in life experiences caused by limited mobility and energy.
While there are many ways to value life, the value of experiencing the world around us is certainly high on the list. Video games and gaming technology is one way to have powerful experiences with limited mobility and VR takes this to a whole new level.
To meet other people with ME to game with join the Facebook group I admin: "People With MECFS Who Play Games. Myalgic Encephalomyelitis game community."
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Meditation
Meditation in natural environments is incredibly calming and rewarding but for those of us who are bedbound, it can be a real challenge to get out into nature. Using VR you have dozens of beautiful nature settings to choose from instantly. Additionally, if you get overwhelmed and need to go back to black you are a single button press away from quiet darkness as opposed to needing to make your way back inside.
In addition to natural setting, there are also meditation apps that offer more visual stimulation and guidance than audio apps. This can be very helpful when trying to meditate through pain as it helps you stay focused.
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Travel & Experiences
There are many experiences in VR that are simply unique to anything else you could possibly do. From immersion into completely animated worlds to pulling objects out of thin air, to experimental media and the strange cultural creation that is VR chat.
Additionally, many VR experiences and apps are designed to give you the experience of traveling to other places. Travel around the world or have a completely surreal experience sitting in the city you live in and watching people walk by despite being bedbound for years.
For people with ME, experiences are often limited and difficult to access. VR offers you the chance to do things that are truly among the most unique and memorable things any human on earth can be a part of right now. It gives you the ability to experience things that you will find beautiful and memorable. It gives you the ability to form those memories of first and special times that help us to catalog and look back on life.
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Socialization
When you have ME your ability to socialize is drastically cut back. While some of this is inevitable due to lessened ability to speak and interact, much is due to the inability to attend social events and the difficulty traveling or hosting visitors. VR offers easy solutions to both these problems.
Another amazing part of socializing in VR is the ability to not be immediately seen and judged for your disability. While I normally ended up disclosing my ME to people I actually befriended it was incredible to once again spend time in public places dressed and moving in whatever way I desired.
While I am perfectly happy to be seen in a wheelchair or in my bed, and I don't base my self-worth on clothes or makeup, being able to express ourselves publically through fashion and motion are both incredibly self-actualizing experiences that VR can make possible.
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Art
There is amazing artwork being created in VR, and you can be part of it. From experiencing innovative animated and video content, to diving into TiltBrush or MultiBrush and pulling a scene into life from the air around you.
Surprisingly, I found drawing in 3 dimensions much more accessible and intuitive than drawing in 2. While you might not be Picasso, there is something immensely rewarding about sitting in a world you have created, being able to reach out and touch a flower you pulled from thin air.
Finally, the community of artists in VR is amazing and it is incredible to see what people create each week in response to frequent challenges and prompts.
Because these tools are so new, the art styles and techniques are constantly evolving your freedom to invent completely new artistic concepts is massive. The area is still very new and very few people are fulltime VR artists so even with limited art background and energy you can easily make a big impact in moving this fusion of art and tech forward.
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Tips For Getting Started
Energy warning: Please be very cautious when you begin to use VR as it can quickly consume large amounts of energy.
Choosing a headset: As of August 2023 I highly recommend the Meta Quest 2 over other choices for best value, stand-alone use in bed, large app selection and accessibility. If you have the money you can get the Meta Quest Pro but I would only recommend this if you plan on using VR as a workstation.
Positioning options: Your legs can be raised with no issue at all. Being sat up than 30° will start to cause issues with default view and will require apps with an adjustable horizon, you can also lie on your side to see to avoid looking at the ceiling It is helpful if you can lower your arms over the side of the bed or a chair but not necessary.
Important settings to know: Use the height adjust setting to reach things without sitting up or bending over. Set brightness to minimum and use night mode to minimize blue light. Reset the floor height to make yourself taller or shorter.
Finding accessible apps: Look for apps and games with seated or reclined mode only. You can test out apps on Meta Quest headsets for up to 2 active hours anytime in the first 14 days and return the game if it is inaccessible.
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Recommended Apps & Experiences
Free Apps:
VR Chat - The closest thing to a real life metaverse. Hang out in public spaces or relax and meditate in private.
Alcove - Your own VR home. Meditation, hang out with friends, travel the world.
Bigscreen - Watch Disney+, Amazon Prime, and 3D movies in awesome theaters.*
Innerworld - VR mental health community, runs chronic illness support groups
Free Experiences (seriously do all of these):
Free Solo (Meta Quest TV)
On The Morning You Wake
Now Is The Time - Requires hand tracking
Tales From Soda Island (VR Animation Player)
Within (Youtube Channel)
Paid Apps:
Real VR Fishing - Relaxing fishing in beautiful locations across multiple countries.
Nature Treks - Gorgeous nature settings to relax and meditate in.*
TRIPP - Guided meditations in custom environments. Expensive but by far the best meditation app.*
Open Brush - Paint 3D worlds around yourself.
Paid Games:
Windlands - Super fun spiderman movement mechanics. High energy expenditure but can be played reclined in bed.
Garden of the Sea - Animal crossing but for VR. Objects may be difficult to grab in bed and can easily overuse energy.
*can be used completely lying down
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Recommendation for Accessible VR
Unfortunately, there are some limitations to current VR technology that limit its otherwise potential for use in housebound and bedbound patients. A few recommendations I would love to see Meta and others implement include:
Height slider - Height should be easily adjustable in a setting so that users can adjust to any height bed they may be in and change their height without crouching or standing.
Universal room scale motion adjustment - There should always be a way to move within a room scale scene for those who are unable to physically move. While room scale VR is a great development for immersion, it must not come at the expense of making room scale apps unusable to bedbound users.
Adjustable horizon - Patients who require horizontal positions need access to rotating the horizon. Otherwise, apps can easily become unusable or create large amounts of neck strain. This is an easy universal setting to create.
Standardized turn function - Turning via the joystick should be standardized between apps, or otherwise made always available. Not all users have the ability to turn their bodies.
Arm range adjustment - Bedbound users cannot lower their arms beyond their hips (when they hit the mattress) There must be a way to program in arm range of motion so that bedbound users' avatars are not constantly in zombie positions, and so that they can reach objects at lower levels.
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Cost of VR
Virtual reality isn't cheap. A new Meta Quest 2 headset will set you back around $500 USD. To equip it with a comfortable head strap and a nice selection of apps and games will likely cost another $100-200. Most pwME are low income and it is simply out of reach for many.
However, I would argue that if you have moderate-severe ME such that you are unable to go out more than once or twice a month, this cost should be seriously considered.
Most people would not consider it outrageous to attempt to save $600 for a vacation. I would argue the mental health and experiential benefits of VR are comparable if not superior.
The sad truth is that many people who would most benefit from VR cannot afford it, but for those who can you should look at a purchase of a VR headset not as a toy but as comparable to a new phone or laptop. Something which will considerably expand your toolset, experiences, and social capacity.
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Myalgic Encephalomyelitis aka ME/CFS limits us in so many ways but one of the bigest is the lack of accessible experiences especially for severe ME patients who are housebound or bedbound.
Video Games and Virtual Reality is one way to bridge that gap.
While VR headsets like the occulus Quest2 (now Meta Quest 2) are expensive and obviously not accessible to everyone, for those who have the ability to access it VR can be a wonderful escape for our mental health.
Disabled Joy deserves to exist. Just because you do not conform to capitalist standard of productivity does not mean you do not deserve experiences, socialization and hapiness.
I also strongly believe that companies like @meta should prioritize the accessibility of their products especially headsets. There are many simple features many of which are increasingly implemented that make using VR so much more accessible.
The metaverse and virtual spaces are not a replacement for real life experiences. Just like how social media is not a replacement for genuine relationships and friendships. But just as the chronic illness and spoonie community relies on social media because it is more accessible than irl events especially when the pandemic is not over, I believe virtual reality has the potential to provide a valuable outlet to those of us who cannot access most of the world around us.
Personally when my chronic migraine allows me I use VR for
Mental health
Meditation
Experiences
Games
Socialization (including educating healthy people I meet online about ME in a way that feels so much more personal than social media)
And even as a horizontal workstation using my bluetooth keyboard.
So what do you think? Have you tried VR as a person with ME or severe disability? Would you like to? What do you use to escape the painful reality of life with ME?
For those interested in meeting other people with ME who play video games (VR, consoles, PC, paid & free phone games etc) I started and help admin a group on facebook called "People with MECFS Who Play Games; Myalgic Encephalomyelitis Gaming Community" and you are very welcome to join us!
Disclaimer: VR can cause crashes and PENE/PEM from neurological overexertion and exhasurbate chronic migraine. Start with small doses and make sure you know how it affects you before pushing it!
Just a note: the meta quest 3 is about to release in a few days so I would recommend waiting to see its reviews before purchasing. Alternatively you can likely find used quest 2 headsets on sale as people upgrade so its a good time to buy. I am not sponsored by meta or anything, they are just the largest platform and thus have the most accessible apps.
