An Existence Project | Paper Stop-motion Animation About ME/CFS
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- เผยแพร่เมื่อ 7 ก.พ. 2025
- An Existence Project is a short stop-motion animation about what it is like to live with mild or moderate Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).
It was created by Inga Topolnicki using handmade watercolour paper props. She decided to make this film so there would be something accessible people could show their friends and family which would help them communicate the complex aspects of living with this chronic illness.
Illness forces you to rest in place so much that you begin to notice the little details of objects around you. The intricate aesthetic of this animation emerged from this increased awareness and an appreciation of the things around Inga’s home that became her whole world.
Chronic illness isolates us physically from others but also from society by a lack of understanding. Inga wants this film to help connect people again.
To learn more about ME/CFS:
www.emerge.org...
To help fund medical research into ME/CFS:
www.omf.ngo/
To see behind the scenes follow me on Instagram or Facebook:
/ anexistenceproject
/ anexistenceproject
#mecfs #stopmotion #chronicillness - ภาพยนตร์และแอนิเมชัน
An enormous thank you to everyone who has watched and shared my animation! Reading all your lovely comments has made making it feel so worthwhile. Thank you!
This is just absolutely beautiful visually , and perfect in terms of message. Thank you 🙏
🥀Thank you so much Inga🥀 Beautifully done & Perfectly described Project. Many years diagnosed & suffer of M.E , I cried entire way through & still am.The calmness & accuracy ,yet simplicity of this to show others is amazing.Congratulations Inga just what is needed.Beautiful Artistry.🥀
🌻Beautifully done Inga.Thank you so much for all your skills & efforts🌻. 💚🍃🐨🌿💚
*OOPS This was meant to go to you Inga* 🥀Oh Inga...🥀 I'm not on any media due to the obvious.However I've just viewed your channel and read ,this PROJECT took YOU 6 Years to do !!! I was so shocked🥀ABSOLUTELY Outstanding, Dedicated & Extreme Exhaustion Ongoing😥.It is even more Beautiful & Relevant to read the detail involved to make it,& over 6 Yrs WOW.Thank You SO much Inga, Amazing💐🥀
Thank you!!!! 😊🙏✝️💗💗💗🤗🧸
I can only echo what others have said here about this beautiful and moving piece. I’m still crying ❤
37 years living with M.E. this is the best illustration of life with i've seen. terrified for everyone with "long Covid" -- so easily could become M.E.
Surely Long Covid is ME! At least that's what the symptoms sound like to me, with the added complication of the actual lung damage from covid
@@LooneyLoobyLou because the damage to the CNS/ANS et al of non-COVID M.E. patients isn't 'actual'? 🤔
Long COVID in many case is actually ME. Many illnesses can be triggers for ME including Glandular fever, Ross River Virus and others.. including COVID.
The most beautiful and true story - put those onions away! :'(
It feels strangely comforting to have someone else describe what my life is like, thank you!
I've shared it in a large, Dutch me/cfs fb group, and people are loving and resharing your beautiful work!
Thank you SO MUCH! My daughter has had ME/CFS for nearly ten years, this is the BEST information I have ever read, simply explained and also beautifully presented.
This is so beautiful...and I started weeping immediately and haven't stopped yet. I've been living with CFS since 1990, so 31 years now. Though I used to cycle in and out of flares and remission, starting about 10 years ago, the illness got markedly worse, and I'm now in bed almost all the time -- one brief period of activity a week sends me into a completely debilitating crash, unable to do anything but sleep. My CFS is complicated by other health conditions, including severe neuropathy, so any energy I might have had is now also compromised by extreme pain. Your video so accurately expresses the grief of having my whole life stripped away from me -- every dream, every goal, every hope for my future, everything I ever worked towards. I honestly don't feel like there's even anything TO me as a person. There's no "me" here anymore. I don't even know how to express how gutting that feels.
I'm going to post this lovely video on Fb and hope that my friends watch and get some inkling of understanding about what my life is like. I don't expect them to; they're all high achievers, wrapped up in their incredible accomplishments, and they've long ago left me behind, since I couldn't keep up. But maybe it'll help a little. Thank you for making it.
Understand w my heart.. started meditation, am on line w nature videos/ animal/all feel good views/force myself to sit outside/need to change bad habits, even if it's small🙏❤️🌹😺
Well done Inga. This is beautifully made. I did not know much about chronic fatigue. I hope that with time, your illness dissipates or a cure can be found. In the meantime, know that your short film will help educate people like me. Thank you, Theresa
This was truly beautiful. My daughter was diagnosed 3 years ago and is having a horrible flare at the moment, its hard to watch let alone have ME
Artfully done and articulates so well the life experience of those of us with ME/CFS. Thank you for spending your valuable energy on this beautiful project. I am 52 years old and have had ME/CFS for 32 years.
The people I know with ME/CFS are extraordinary and this beautifully crafted video is an inspiration. Brought tears to my eyes. Well done and thank you.
I think you have done the (almost ) impossible task of showing what life is like when you live with ME. As someone who was first diagnosed around 30 years ago, I feel this film is ideal to to explain to friends and family.
I also love the aesthetic and the animation- really creative. Thank you.
This is such a wonderful and beautiful film. It would have meant so much to me to have access to this when I was first diagnosed.
Thanks! I think it's what I wished I'd had when I was first diagnosed :)
Beautifully made and such a great way of describing what it's like to have this illness. I have had it for 30 years and to say I feel invisible is an understatement! To find a way to explain this illness to those who are well is almost impossible but I believe you have found a way. Thank you and you should feel very proud of yourself!
This is so amazing!! Thank you for making this, it's gorgeous. I have shared it with who I can, though I wish that was more people (I have severe ME for 5 year's now so my social circle even online is super small).
I hope this finds it's way outside of the ME community too. People need to see this! Drs and medical staff definitely need to see this. I am in the uk and I regularly feel unrecognised, belittled and disbelieved by medical staff, and none of them understand what the reality is like, because I'm sat in front of them looking ok, having saved up all my energy for weeks, so I'm coherent & upright for that 10 minutes I'm in there. So they think I'm exaggerating how sick I actually am. Frustrating illness ME.
Love this video so much 💖💖
Was diagnosed over 18 months ago and this is the first recourse I’ve come across that truly captures what it’s like having chronic fatigue thank you!!
It is not much fun living with ME/CFS - it takes the life out of you and leaves you with an existence in which you have to adjust and survive day by day. Great animation.
This is so beautifully made! I've recently been diagnosed with ME/CFS, and finding well worded and accessible content to help friends and family understand the illness isn't easy. Thank you so much for your hard work on this! ❤
Thank you Nicola, I'm so glad you came across it!
Amazing video! Beautifully made and I learned so much. Congratulations on such a great project
Thank you Ben!
Amazing video. My 17 year old son has been dealing with this since he was 9, and this is a great video explaining what we're dealing with
I read about your project in Frankie and love it. Thanks for sharing. Lots of love from the UK x
This is just beautiful 😊 You've captured what it's like living with this illness so well. I love the bookcase around the door and the very Aussie Iced Vo Vo's on the plate!
Dear Ms. Inga,
You have significantly impacted us ME/CFS/SEID persons through your insight, love, patience, amazing artistic talent, and perseverance. Saying “thank you” could not express the gratitude I feel for that which you have literally GIFTED the world. This is no exaggeration.
Your calming voice, beautifully supported with your choice of background music, couldn’t be more PERFECT. Please take a moment to try and grasp the enormity of the power and validation for which you have empowered us. There are no words. As well, you presented our reality without patronizing or making us victims. Standing ovation to you, my friend. Forever grateful. 🤲🏼🙏🏻🥲
KT 💙
ME/CFS since May 2013
Thank you for doing this. I've had it for many years, my worst was 2017, I'm a bit better than I was then but not great . I'm having a lot of symptoms today, wondering how I will pay rent again, etc. What struck me the most was when you said we are grieving the life we had, and thougt we would have. That's very true and I burst out crying when I realized I heard it. Anyway thanks again.
Beautifully done! 18 years and counting for me of being between severe and moderate. Getting tired of this jailed existence.
So beautiful, well done, fun to look at & most importantly - so well explained Inga! 👏👏👏👍👍♥️🏆👑 Thank you for donating so many hours & days of your energy to create this!
From a fellow artist w ME - this is lovely and very clearly shows what our life is like. Thank you for the inspiration!
I've suffered from CFS for nearly 10 years now, and am SO grateful for this video for summing up my experience so acutely. I always struggle to express my emotions and frustrations, and this is the first thing I've seen that does so well. Thank you!
Oh so many feelings! This was beautiful to watch. So many things I loved about it (feeling trapped in that intricate little room with you by the end-but in the best way)
Particular mention to the changing scenery in the picture frames ♥
Congratulations and thank you xoxox
You are such an inspiration, I've had m.e/cfs for 20 years now, and your story about how it took you 6 years of your precious energy to make this video has inspired me to carry on with my projects, thank you 🙏❤️
I hope this visual document is seen by thousands people. It reflects exactly the things that my favorite person told me since the initial moment. Kisses to her and also to Inga.
From my personal opinion, the things really needed are:
a) Increase the investigations (goberments & privates) and
b) the legal managements by health official authorities (gobertments).
Congratulations on such a creative and informative video. I've suffered with ME/CFS for 26 years, and it is exactly as you have shown. My former life is no more, but I still have my sense of humour. 🙂
This is so beautiful. i also have M.E i cant wait to share this video with the online groups im in. A massive congratulations to Inga this would be long and tiring work for anyone, i really hope it brought you some joy to create and we can get it out to as many people as possible. you should be so proud of yourself its inspiring to see others with M.E do amazing things like this❤
Thank you so much! It means a lot to me that someone else with ME was able to relate to what I've made.
6 MIN. OF EXCELLENCE!!!! THANK YOU!! Haved saved and will ask our Assoc. members to share on May 12the International ME day!!
Thank you Inga for creating this incredible piece of art that tells our story! None of us chose to have ME, but the strength and creativity of the people in our community never ceases to amaze me. I hope your project gets seen by many more people and that they learn about ME.
Now we just need to spread this to news media, thank you so much for making this! ❤️
wow what an emotional video. This is a perfect example of what it is like. The emotional, mental and physical struggle is real. I have read through the comments and i can't believe some of you have been living with me/cfs for over 30 years, you are all warriors for making it this far. Only those who go through this battle know how difficult this condition can be.
Medical medium anthony williams information and zone therapy has been of huge help for me to get my life back on track in the past couple years after dealing with chronic fatigue/fibromyalgia.
DON'T EVER GIVE UP ON YOURSELF!!!
Thank you so much Inga for this informative video, it's the only one I have seen in 24 years of illness that explains in a simple, but helpful way that hopefully will help more people to understand. I don't want people to feel sorry for me far from it, because I have learned a lot about a different way of life and have met friends online with this illness who show compassion for all beings.
But to have those close to us and particularly the medical community to just ask how they could support us , to show acceptance so that we don't as a community of people with M.E./ CFS to not feel alone would make a difference to our emotional well-being.
So thank you with all my heart.
Blessings and love to all who watch this video.
For all who are unwell may you know you valued, worthwhile and loved
🙏💖
Thank you so much for this! I am still crying. Thank you 🙏
Done perfectly. Thank you so much for making this video. You explained ME/Chronic Fatigue so well! Bless all of you (like myself), who deals with this condition.
Beautifully done. I'm in year 17 of severe MEcfs. 💙
This is beautifully made. I love how you said people in our lives need to "change their expectations". I've never thought of it that way.
Such a gift to our community! You have shared not only your story, but given a way for us to express our realities to our families and friends.
It’s incredible what you were able to create over 6 years of being less than able. It’s truly a difficult life to live, and I find most days I am just trying to navigate the massive waves and challenges of each day, never mind committing to something so monumental and with such a high level of production.
I really enjoyed how you captured it all… I find most videos have either a theme of despair and sob-stories, or a path to wellness, but you have captured the subtle beauty along with all the other complex emotions and realities that come with this experience. Thank you for that 🌸🙏🏼💫
You totally deserve Iced Vo-Vos!
⭐️⭐️⭐️⭐️⭐️
Inga this is beautiful, I’m sure all of us with ME are amazed by your dedication to donate your energy to make this film, and overwhelmed with gratitude for the awareness it will build. Sending you a big hug and lots of spoons from the U.K.
This is beautiful, accurate, descriptive, kind, loving. "The saddest days are when...." It's so helpful to share this with my community. Thank you so much. Deep gratitude.
What a wonderful film this is! Thank you for sharing. I will show this to my grandchildren and even my children. I have lived with CFS for 14years and then fibromyalgia for 10years.
Well done Inga for managing to do this great work when you are disabled by M.E, so much respect:)
Dear Inga, thank you so much for making this film. It's absolutely brilliant. 💜
Such a beautifully executed film both visually and in its content. Having had ME/CFS for 16 years this is one of the most accurate and helpful descriptions of it I’ve seen. Thank you for making it xx
A huge thank you for taking the time to make this film!
I left you a message y'day BUT....🌻 I have Only just read on your channel Inga,that this took you 6 years to make !!!⭐ The detail involved is Perfection & Gorgeous🌻Your story brought me to tears, as you explained & illustrated it so accurately.🌻Congratulations Inga🌻.💚🍃🐨🌿💚
Fabulous job! So well articulated. Living with ME/CFS for years myself, you expressed it brilliantly. Thank you for sharing and all the energy that went into putting the project together.
Thankyou for creating such an engaging and beautiful short film to capture what many of us living with ME/CFS want to express but often find ourselves lost for the words. To bring it to life in a non medicalised manner with your engaging artwork has brought tears to my eyes. Love and Light to you and all of us who hope towards our future self living fully as opposed to a feeling of merely" existing."
Thank you Inga. This is beautiful and so much needed to start awareness of this disease. I love this so much.
And Inga I was working in the lab as a research chemist when I diagnosed also. Working around GC and HPLC.
I’ve just cried the whole way through as I sit here in pain and exhaustion on the sofa x thank you for the hard work put into this
Thank you so much for this it is so beautiful & gorgeous. Your voice is soothing & adorable just like your animation. Big hugs to you from a fellow sufferer 💕
Fantastic production values and very well delivered message. Thank you. ❤️
This is so beautiful. This is my second time coming back to this video and once again I feel like it expresses how I feel more gently and powerfully than I ever could. Thank you for making this.
This is incredibly well done, thank you for all of the work you've put into this! And I love the Belle and Sebastian reference, I always put on Nobody's Empire when I'm feeling miserable. The last line always lifts my spirits: "And he told me to push and he made me feel well, he told me to leave that vision of hell to the dying."
So beautifully made film and everything is accurate. It describes me with ME.
Beautifully animated & a great description. Thank you
Gosh, what a powerful work of art. Thank you so much for sharing your suffering with us. Ever onward...
Thank you Inga for this incredible film. So much effort and thought has gone into this short masterpiece and I am so in awe that you achieved this with me/cfs. I have had it since 2015 and I feel like I’ve never been able to properly explain it to my friends and family. This will be an amazing tool for so many to help share their often invisible struggles. ❤️
Thank you for putting this out in the world Inga 💙🙏🏻
Inga, you have captured the personal experience of long term ME/CFS so very well. Particularly for young people affected.
So you know the value of my comment.
I have now passed 45 years with ME/CFS. Age 16 at onset. Back then there were few others, and it was fully denied. No TH-cam. No internet. No understanding from even closest friends. Denied for decades by the full medical profession, and national welfare safety nets.
Tragedy is, I had remission in my 20's, and it was this prejudice that pushed me back into major relapse to make this post viral syndrome permanent. And with that, I lost a world class science career (as viewed by some senior scientists - I was going to be an astrophysicist.. ).
Being the "science type", I started advocacy to raise the reality of this condition in about 1980. I began with talking to many others affected. Observation being the first step in the scientific method for a new and puzzling phenomena. Then various on the fly low cost research. My entire family developed ME/CFS. All still suffering to today. So I have pressed on determined.
Pretty much every evaluation I have made on this increasing incidence global disease phenomena has since been validated. Indeed, I was raising the likelihood and magnitude of human suffering and a huge larger second economic risk to national economies of the new novel corona virus, beginning Feb 2020.
That was just 6 weeks after the first mention of a novel corona virus in China. As per usual, it is now all happening as I held concern!
Through connections, early 2020 I managed to inspire a Stanford study, ongoing 2020 to 2022, to track enough well people so that when some got covid and went onto an ME/CFS state, there could be an attempt to capture some elements of that process, or the factors that lead that individual this time to go into a post viral state.
Fact is, most people, even children have had viral infections before. So why this time did they end up with a post viral ME/CFS?? What was different? I think it is a crucial question to answer.
This is a mystery like understanding the physics of supernovas to confirm theoretical models. Because there is no prediction of when a star will go supernova, there has been for decades no observational data just before a star explodes. It is always an investigation *after* the event. So to with CFS studies up to now.
What was different this time for this person??
This is the million dollar .. no make that the new billion dollar ... question. I hold hope of something useful will come out of this study.
I am sharing all this so my comment here will mean something extra to you. I can only imagine how much work this took. Would you complete your goal? Was it going to be worth the personal cost to persist to the end?
You have captured the ME/CFS existence for so many of us long termer’s. While I am old now I was a teenager when this struck. It is all still so real to me. All of it! I felt an involuntary and sudden chest heave in memories and shed tears at 4:46. So alone in an invisible gaol for so long.
Unfortunately I am not so artistic. Hail you, and Yules of spoonies fame, and so many others.
If I may, I have different contribution I hope to make.
As a long term CFS person I have my own proiect. I have kept detailed daily data, tracking almost 100 factors, from levels of cognitive and physical activity, to food, to supplements and medications trialed, to periods of daily cognitive testing, …. for 10 continuous years. The daily records are often simple self scoring, and so I understand how it is dismissed as 'valid research' from a professional research point of view. But then, I began this project in frustration after waiting for three decades for 'professional research' approaches to deliver any competent meaningful insights on ME/CFS.
For a new phenomena, sometimes the simple brings a critical insight, where the more narrow focused research, hit and miss, does not. Recording data every day, diligently, well over 3000 human hours to date. If nothing else, I hope it will provide some boundary conditions on what any useful theory of long term ME/CFS must explain. (Just as in astrophysics with competing cosmological models and new observational data in determining good theory on the universe.)
As a long term CFS person, what applies to me, will likely apply to most. No professional paid researcher is going to do such as this, or could, so it is up to one of us with long term CFS and with some research principles understanding and skills to do it. Also someone with a level of CFS severity that they can manage to keep such daily records with fair consistency, competently. I could, just! Hope you do not mind. Sharing a little hope here on other initiatives out there in the community. No promises, just a little hope.
ME/CFS being also for those with other PVS (post viral syndrome's).
FM (Fibromyalgia),
MCS (multiple chemical sensitivities) ,
Chronic Epstein Barr,
Chronic Q Fever, .....
.... and now Long Covid.
(Welcome unfortunately to the new 50 million+ or so around the planet to join this unfortunate club. About 5% of those infected .. a probable number. )
This made my boyfriend who’s caring for me and myself both cry. I’m bed bound and this really helped. We have been talking about doing an animation as well and you are so inspiring. Hope you make another 🫶
I love this gift of perspective, especially the part that makes suggestions of how to support and help. Thank you so much for your care, time, and energy.
This film is beautiful, sensitive and imaginative. We need more talent like yours to express what our strange lifes are truly like.
Thankyou
Thank you so much. I really like the part about how the illness magnifies the bad AND the good! Today is my birthday and two dear friends stopped by to give me flowers but didn't ask to come in knowing that I was too tired. Having understanding friends makes worlds of difference. I hope this video will be widely shared to help people understand more about the illness and that just a little understanding can make a very big difference.
So beautiful and perfectly explains ME/CFS. Thank you for making such an important short animation that helps explain the struggles. Definitely going to share it with friends and family, so they can understand it a little more. It made me a bit teary (sufferer here)...very hard illness to deal with.
Thank you for making this beautiful done! The grief of acceptance, of letting go of many of our old goals, dreams and settling towards new dreams was the hardest! While I was still bed ridden! 💕
Thanks so much for making this for our community and sharing some of the hardest parts for those who suffer with this disease. So grateful!
🌻Beautifully done Inga & of course so accurate.Congratulations on describing this in such a way ,that if all Doctors saw this they would learn a lot & perhaps even show understanding🌻Thankyou🌻.💚🍃🐨🌿💚
Just beautiful. Thank you! And a perfect balance struck between presenting the hard and painful reality, but remembering we sufferers are all still profoundly human and alive...and need hope and meaning and social support like everyone else. It also walked a graceful line between sad and courageous. THANK YOU AGAIN. You have a beautiful soul.
This is beautifully made. Thank you. I've had MECFS for 20 years. Your video will be perfect to share with friends and family.
Beautifully done! Congratulations and thank you for helping me help my friends understand, too
This is the best illustration of what it's like that I have seen. I became sick shortly after I had turned 15. A week ago I turned 18 and it has only gotten worse. This video was beautifully made and I will be sharing it, so thank you💙
Wow, this is just exquisite! And such an accurate portrayal of what it’s like to live with ME. Thank you so much for using your precious energy to help raise awareness for us xx
Beautifully done! Thank you for raising awareness!
Thank you, Inga, for channeling your talent, sensitivity and energy into creating this touching animation. I was looking for a video to share with my community to help them understand what it is like living with ME/CFS and yours is the perfect combination of facts, insight and understanding for how this disease affects us not just physically, but also psychologically. Blessings to you.
Thank you so much for sharing this with the world . Beautifully done and I truly hope that it helps people to understand . Waking up ( if you can sleep ) and feeling as exhausted as you were when you went to bed is no fun . ME /CFS can be so restrictive and sadly very few people understand
Thank you for such an amazing video. I have ME/CFS. I cried so much because its my life and you explained it so well with beautiful art work.
This is incredibly beautiful. Thankyou for sharing this battle.
Love from Iluka.
This is so so beautiful. Well done, Inga, such brilliant advocacy for us.
This is a beautiful, engaging, and informative video. My friend with M.E. sent me the link, and I'm grateful.
I love it. Everything it is very well explained. Thank you for doing it. It is beautiful ans important. 🙌🙏 All the best.
This is so beautiful and so touching. I'm so deeply grateful to you for creating and sharing this, and finding the words and expressing them when I couldn't. You are a marvel 💖🙏💕
It's so lovely. I thank you so much. I have been dealing with this longer then I will say. I have never been able to explain how I feel and what is making me feel this way. You did it for me and for that I will all ways be endded to you some how. I wish we could meet someday.you made my life easier and for that I thank you form the bottom of my heart.
Absolutely beautiful! Thank you so much for using your spoons to tell our story so graciously! I’ll be sharing far and wide. 💜💜💜
Thank you for so beautifully describing what this life is like. Yes...if the world would just stop. xo
What a beautiful video and a fantastic achievement. I used to help someone with ME when I was in the UK and so have some familiarity with it, but your video really put it into context and helped me understand so much more about the condition. Thank you.
Brilliant! I love everything about this. I'm going to share it now, as much as I can. THANK YOU for the effort you invested in this. So precious.
Wonderful video deeply touching heart and soul I will share it with my family so they can understand better. Thank you for making this film.
Just wanted to add to my previous comment: those who speak of your Grace in doing this are spot on.
I also believe that M.E is almost identical to more severe forms of long Covid, and shares a lot with PICS (post intensive care syndrome). I am longing for someone to join those dots and collaborate on research.
This is stunning. Thank you for creating this for us as another tool for helping those who love us (and people in general) to better understand. Adding to my resources page.
An excellent animation...really well done... informative, calm, beautifully paced.
Thanks Inga for making this video, you explained CFS perfectly. Awareness and understanding is needed so people really get what we go through ❤😔
Just beautiful. So much of what you say resonates with me, thank you for giving a voice to pwME/CFS.