I appreciate this version. I also appreciate all that Bateman Horne does! If I may provide some feedback - as an me/cfs patient living with a severe level of illness: 1) I appreciate this easy-to-understand comparison between a phone running apps and a body and its functions. Really helpful in aiding those unfamiliar with me/cfs to comprehend the kinds of things that drain the energy in the body. 2) I understand this video isn’t meant to be in depth, and realize that if it were too long, those unfamiliar with or not impacted by me/cfs may not watch it. I do, however, wish there were specific info about symptoms, even a brief mention of realities such as gastrointestinal issues, migraine-like headaches, joint pain, sleep issues like insomnia, to name a few. Otherwise, people unfamiliar with the illness may think patients are mostly just tired, or extremely tired. I also wish there were more emphasis on how wildly different a patient’s life is if their level of illness is mild versus moderate, severe, or very severe; I was fairly functional when my level was mild. Now that it is severe, my life is COMPLETELY different. There is a person with authority and power in my life who refuses to understand or accept the realities imposed upon me by my severe level of illness because she thinks she “gets it” due to knowing someone else who has a mild level of illness. She repeatedly has expectations of me that are unrealistic because she thinks she gets it, knowing what she knows about another me/cfs patient who is much more functional than me. Trust me, she doesn’t “get it”. Her position of authority makes her a gatekeeper to other help I need, and so her lack of understanding is damaging to me.
@nofamenofortune We are so sorry to hear of your battle with this sinister disease. Mito will eventually be joined by additional characters to explore different aspects of ME/CFS and its comorbidities. In the meantime, here are some resources with varying levels of detail that explain ME/CFS and its related conditions. The Basics: PEM th-cam.com/video/UkS6L3Klc00/w-d-xo.htmlsi=xRhVpSM_zCMpeqfG The Basics: OI th-cam.com/video/Gh4vpKsLbr8/w-d-xo.htmlsi=K3Z9KpJlior2Dryb Long COVID & Post-Viral Syndrome ECHO (more detailed medical lectures) : th-cam.com/play/PL-OZ_5Cqdc32sFSGZXx1AMMCaxS8zRch9.html PT/OT video series: th-cam.com/play/PL-OZ_5Cqdc31EoJ0gonoa4Z2nQCAuPQF9.html
@@batemanhornecenter Thanks for your response. I encourage you to recognize that many, maybe most of us, get one shot to share something with family, friends, and acquaintances about our illness. Most of them aren’t interested or willing to hear more than that. That one shot has to strike the right balance between brevity and thoroughness to help others understand what me/cfs patients like me are dealing with. There is literally no one in my life who will watch more than one video or read more than one article about my condition; I assume I’m not the only patient with that reality. An entire series of videos with Mito or others characters are likely only going to be watched by patients, the ones who already know about the illness. When I played this video I hoped it was finally going to be THAT video, the one I could share that would be short enough that people might be willing to watch it, while still providing a clear picture of my reality. I’m sorry to belabor the point. But I hope you will genuinely consider the feedback you are receiving in this comment section. Please know that no one I know will watch a series of videos. Any video that is intended to introduce or explain me/cfs to those who don’t have it and aren’t living with it needs to be brief but adequately thorough; many of us living with the illness will get one shot to educate, and we are reliant upon and counting on BHC and other me/cfs organizations to provide media that allows us to do that, as we are too ill to create content ourselves. I personally can’t see myself sharing this video - it does more harm than good if it causes those around me to believe that I’m simply very tired all the time. Thank you for allowing me to share my experience and perspective. Again, I am very grateful for all that you do.
@@nofamenofortune Thank you so much for sharing your feedback. We truly understand the importance of reaching your audience in that one crucial moment when they’re willing to listen. The challenge, as you pointed out, is striking that delicate balance between brevity and thoroughness. We also recognize that what resonates with one person may not work for another, as every audience and circumstance is different. The intention behind this video was not to provide a fully comprehensive explanation of ME/CFS but to raise awareness and give voice to the challenges that come with living with this illness. We wanted to offer an approachable starting point for people unfamiliar with ME/CFS, while also providing validation for those who live with it. We do have plans to create more content that dives deeper into different aspects of ME/CFS, and we hope that you’ll find future materials that better suit the specific need you mentioned-something that captures the complexities of severe illness in a format that can be shared with those close to you. Thank you again for your thoughtful response, and for your trust in us. Your feedback helps shape the work we do, and we appreciate all that you contribute to the community.
Thank you for making this video and trying to help us 👏 Your efforts are greatly appreciated ❤ Down the track, I'd love to see a video teaching people how ill we feel on the inside (most people think we just get "tired"). I usually feel like I've been poisoned and have a massive hangover (without the alcohol of course). Also, another idea could be to show friends that we can't actually catch up with them and have conversations. Some friends don't understand why I can't have them over to visit and they just think I'm being dramatic. Once again- Thank you 😊
@oliviajenkinson7281 @sq5 We’re planning to continue producing videos with Mito. Since building Mito requires significant resources, we’ll keep adding to the “Basics” series in the meantime to ensure we’re still providing valuable information. The Basics: PEM th-cam.com/video/UkS6L3Klc00/w-d-xo.htmlsi=xRhVpSM_zCMpeqfG The Basics: OI th-cam.com/video/Gh4vpKsLbr8/w-d-xo.htmlsi=K3Z9KpJlior2Dryb
I assume MITO is for mitochondria? It might make the video more understandable if that was explained and why mitochondria are important. Otherwise, thank you! Have shared.
@@batemanhornecenter Thank you for your work. WIth Mito(chondria) here being an animated version of Dr Bateman, I look forward to seeing what, as in who, the other characters will look like 😅
I really do admire the effort. I am thankful for all the Bateman Horne Center does for M.E, with that said, I wondered if this was made for children? It felt as if she was a bit whiny while trying to explain this devestating illness to a child. It may help parents w/ small children explain it to their young children. I prefer an adult speaking to me like an adult. Also, I disagree that M.E is as common as all of M.E videos say it is. How common does an illness need to be to meet another person w/ it? Or another person who has ever even heard of it? Also, should it have taken me 25 yrs to finally meet a Dr who heard of it, if it is so common, like you say it is? These are serious questions I wish someone could answer. Keep trying. 😊
Thank you for your feedback, @hopealways247. You're absolutely right that ME/CFS is often misunderstood, and it's a serious issue that this illness is not commonly taught in medical schools, leading to years of misdiagnosis or no diagnosis at all. Bateman Horne Center, along with many other organizations, is working hard to change that paradigm and ensure better awareness and education for both medical professionals and the public. This particular video is intended to serve as an accessible tool to help explain the day-to-day challenges of living with ME/CFS. While it may feel simplified, we hope it helps those who need a more digestible introduction to the illness. That said, we understand your desire for more in-depth, adult-focused content, and we do offer a range of resources that dive deeper into the science, pathology, and disease mechanisms. You might find our medical lectures and ECHO series more aligned with that need. th-cam.com/play/PL-OZ_5Cqdc32sFSGZXx1AMMCaxS8zRch9.html Regarding your question about the prevalence of ME/CFS, it’s true that despite affecting millions worldwide, the condition often goes unrecognized due to a lack of awareness and education. The struggle to meet others who have the illness or even doctors familiar with it is all too common, and that’s exactly what we’re working to change! Thank you again for your support and thoughtful input-we're committed to making progress in both education and awareness. We encourage you to explore our more detailed resources like the ECHO series for further insights into the complexities of this disease. Keep in touch, and take care! 😊
Great version, thank you! Although I did find the clock setting on that phone to be quite distracting as I kept wondering whether it was just a joke you slipped through or part of the message 🙃
Tnx for trying, but this doesn’t explain what is known about the cluster of symptoms that are ever shifting and have to be navigated on a minute to minute basis. The over pleading tone doesn’t help legitimize the message. The mitochondria character is just weird and I don’t think a cartoon should do the talking on this topic. Overlapping circles of symptoms that shift would be a good graphic. Please try again.
@sacredrain7757 This particular video is intended to serve as an accessible tool to help explain the day-to-day challenges of living with ME/CFS. While it may feel simplified, we hope it helps those who need a more digestible introduction to the illness. That said, we understand your desire for more in-depth, adult-focused content, and we do offer a range of resources that dive deeper into the science, pathology, and disease mechanisms. You might find our medical lectures and ECHO series more aligned with that need. th-cam.com/play/PL-OZ_5Cqdc32sFSGZXx1AMMCaxS8zRch9.html
I don't quite understand why this is a cartoon. I wouldn't be comfortable showing this to family and friends because the animation and narrative isn't at an adult level. It's too simplistic and childish. I think the efforts to give options for listening style is terrific. But my basic question is who is the audience this was designed for....what age level? Adults? Patients.
Thank you for watching and providing feedback. We understand that this style may not be for everyone. I encourage you to check out The Basics series: studio.th-cam.com/users/playlistPL-OZ_5Cqdc31bItvAX1Q7OLg3tvzn9Esy/
I appreciate this version. I also appreciate all that Bateman Horne does!
If I may provide some feedback - as an me/cfs patient living with a severe level of illness:
1) I appreciate this easy-to-understand comparison between a phone running apps and a body and its functions. Really helpful in aiding those unfamiliar with me/cfs to comprehend the kinds of things that drain the energy in the body.
2) I understand this video isn’t meant to be in depth, and realize that if it were too long, those unfamiliar with or not impacted by me/cfs may not watch it. I do, however, wish there were specific info about symptoms, even a brief mention of realities such as gastrointestinal issues, migraine-like headaches, joint pain, sleep issues like insomnia, to name a few. Otherwise, people unfamiliar with the illness may think patients are mostly just tired, or extremely tired. I also wish there were more emphasis on how wildly different a patient’s life is if their level of illness is mild versus moderate, severe, or very severe; I was fairly functional when my level was mild. Now that it is severe, my life is COMPLETELY different. There is a person with authority and power in my life who refuses to understand or accept the realities imposed upon me by my severe level of illness because she thinks she “gets it” due to knowing someone else who has a mild level of illness. She repeatedly has expectations of me that are unrealistic because she thinks she gets it, knowing what she knows about another me/cfs patient who is much more functional than me. Trust me, she doesn’t “get it”. Her position of authority makes her a gatekeeper to other help I need, and so her lack of understanding is damaging to me.
@nofamenofortune We are so sorry to hear of your battle with this sinister disease.
Mito will eventually be joined by additional characters to explore different aspects of ME/CFS and its comorbidities. In the meantime, here are some resources with varying levels of detail that explain ME/CFS and its related conditions.
The Basics: PEM th-cam.com/video/UkS6L3Klc00/w-d-xo.htmlsi=xRhVpSM_zCMpeqfG
The Basics: OI th-cam.com/video/Gh4vpKsLbr8/w-d-xo.htmlsi=K3Z9KpJlior2Dryb
Long COVID & Post-Viral Syndrome ECHO (more detailed medical lectures) : th-cam.com/play/PL-OZ_5Cqdc32sFSGZXx1AMMCaxS8zRch9.html
PT/OT video series: th-cam.com/play/PL-OZ_5Cqdc31EoJ0gonoa4Z2nQCAuPQF9.html
@@batemanhornecenter Thanks for your response. I encourage you to recognize that many, maybe most of us, get one shot to share something with family, friends, and acquaintances about our illness. Most of them aren’t interested or willing to hear more than that. That one shot has to strike the right balance between brevity and thoroughness to help others understand what me/cfs patients like me are dealing with. There is literally no one in my life who will watch more than one video or read more than one article about my condition; I assume I’m not the only patient with that reality. An entire series of videos with Mito or others characters are likely only going to be watched by patients, the ones who already know about the illness. When I played this video I hoped it was finally going to be THAT video, the one I could share that would be short enough that people might be willing to watch it, while still providing a clear picture of my reality. I’m sorry to belabor the point. But I hope you will genuinely consider the feedback you are receiving in this comment section. Please know that no one I know will watch a series of videos. Any video that is intended to introduce or explain me/cfs to those who don’t have it and aren’t living with it needs to be brief but adequately thorough; many of us living with the illness will get one shot to educate, and we are reliant upon and counting on BHC and other me/cfs organizations to provide media that allows us to do that, as we are too ill to create content ourselves. I personally can’t see myself sharing this video - it does more harm than good if it causes those around me to believe that I’m simply very tired all the time. Thank you for allowing me to share my experience and perspective. Again, I am very grateful for all that you do.
@@nofamenofortune Thank you so much for sharing your feedback. We truly understand the importance of reaching your audience in that one crucial moment when they’re willing to listen. The challenge, as you pointed out, is striking that delicate balance between brevity and thoroughness. We also recognize that what resonates with one person may not work for another, as every audience and circumstance is different.
The intention behind this video was not to provide a fully comprehensive explanation of ME/CFS but to raise awareness and give voice to the challenges that come with living with this illness. We wanted to offer an approachable starting point for people unfamiliar with ME/CFS, while also providing validation for those who live with it.
We do have plans to create more content that dives deeper into different aspects of ME/CFS, and we hope that you’ll find future materials that better suit the specific need you mentioned-something that captures the complexities of severe illness in a format that can be shared with those close to you.
Thank you again for your thoughtful response, and for your trust in us. Your feedback helps shape the work we do, and we appreciate all that you contribute to the community.
@@batemanhornecenter thanks for listening and hearing. I appreciate you.
Thank you for making this video and trying to help us 👏 Your efforts are greatly appreciated ❤
Down the track, I'd love to see a video teaching people how ill we feel on the inside (most people think we just get "tired"). I usually feel like I've been poisoned and have a massive hangover (without the alcohol of course).
Also, another idea could be to show friends that we can't actually catch up with them and have conversations. Some friends don't understand why I can't have them over to visit and they just think I'm being dramatic.
Once again- Thank you 😊
Yes, please mention PEM. This isn't just about fatigue. PEM is the worst part for many of us, even if we barely do anything.
@oliviajenkinson7281 @sq5
We’re planning to continue producing videos with Mito. Since building Mito requires significant resources, we’ll keep adding to the “Basics” series in the meantime to ensure we’re still providing valuable information.
The Basics: PEM th-cam.com/video/UkS6L3Klc00/w-d-xo.htmlsi=xRhVpSM_zCMpeqfG
The Basics: OI th-cam.com/video/Gh4vpKsLbr8/w-d-xo.htmlsi=K3Z9KpJlior2Dryb
Thank you!
I assume MITO is for mitochondria? It might make the video more understandable if that was explained and why mitochondria are important. Otherwise, thank you! Have shared.
I thought the same thing.
@Observe285 Mito hopes to have more characters join in explaining various aspects of ME/CFS and it's comorbidities in future videos-so stay tuned!
@@batemanhornecenter Thank you for your work. WIth Mito(chondria) here being an animated version of Dr Bateman, I look forward to seeing what, as in who, the other characters will look like 😅
Thanks for this version! ❤
I really do admire the effort. I am thankful for all the Bateman Horne Center does for M.E, with that said,
I wondered if this was made for children? It felt as if she was a bit whiny while trying to explain this devestating illness to a child. It may help parents w/ small children explain it to their young children. I prefer an adult speaking to me like an adult. Also, I disagree that M.E is as common as all of M.E videos say it is. How common does an illness need to be to meet another person w/ it? Or another person who has ever even heard of it? Also, should it have taken me 25 yrs to finally meet a Dr who heard of it, if it is so common, like you say it is? These are serious questions I wish someone could answer. Keep trying. 😊
Thank you for your feedback, @hopealways247. You're absolutely right that ME/CFS is often misunderstood, and it's a serious issue that this illness is not commonly taught in medical schools, leading to years of misdiagnosis or no diagnosis at all. Bateman Horne Center, along with many other organizations, is working hard to change that paradigm and ensure better awareness and education for both medical professionals and the public.
This particular video is intended to serve as an accessible tool to help explain the day-to-day challenges of living with ME/CFS. While it may feel simplified, we hope it helps those who need a more digestible introduction to the illness. That said, we understand your desire for more in-depth, adult-focused content, and we do offer a range of resources that dive deeper into the science, pathology, and disease mechanisms. You might find our medical lectures and ECHO series more aligned with that need. th-cam.com/play/PL-OZ_5Cqdc32sFSGZXx1AMMCaxS8zRch9.html
Regarding your question about the prevalence of ME/CFS, it’s true that despite affecting millions worldwide, the condition often goes unrecognized due to a lack of awareness and education. The struggle to meet others who have the illness or even doctors familiar with it is all too common, and that’s exactly what we’re working to change!
Thank you again for your support and thoughtful input-we're committed to making progress in both education and awareness. We encourage you to explore our more detailed resources like the ECHO series for further insights into the complexities of this disease. Keep in touch, and take care! 😊
Great version, thank you! Although I did find the clock setting on that phone to be quite distracting as I kept wondering whether it was just a joke you slipped through or part of the message 🙃
omg that's so good I did not even notice that 😂 gave me a little chuckle tbh
Reminder this disease isnt just called ME. There are others, like PASC or Long COVID.
ty for video
Thank you for your comment. We also include Long COVID and infection-associated chronic conditions in most of our education.
I Wish we Sufferer's cud get the Govt's of the world wud put more £££/$$$ into MEDICAL RESEARCH to get us PROPERLY CURED!!... :)
Tnx for trying, but this doesn’t explain what is known about the cluster of symptoms that are ever shifting and have to be navigated on a minute to minute basis. The over pleading tone doesn’t help legitimize the message. The mitochondria character is just weird and I don’t think a cartoon should do the talking on this topic. Overlapping circles of symptoms that shift would be a good graphic. Please try again.
@sacredrain7757
This particular video is intended to serve as an accessible tool to help explain the day-to-day challenges of living with ME/CFS. While it may feel simplified, we hope it helps those who need a more digestible introduction to the illness.
That said, we understand your desire for more in-depth, adult-focused content, and we do offer a range of resources that dive deeper into the science, pathology, and disease mechanisms. You might find our medical lectures and ECHO series more aligned with that need. th-cam.com/play/PL-OZ_5Cqdc32sFSGZXx1AMMCaxS8zRch9.html
99% of people who Havn't got the CUDN'T GIVE A DAMN ABOUT US!!... :(
I don't quite understand why this is a cartoon. I wouldn't be comfortable showing this to family and friends because the animation and narrative isn't at an adult level. It's too simplistic and childish. I think the efforts to give options for listening style is terrific. But my basic question is who is the audience this was designed for....what age level? Adults? Patients.
Thank you for watching and providing feedback. We understand that this style may not be for everyone. I encourage you to check out The Basics series: studio.th-cam.com/users/playlistPL-OZ_5Cqdc31bItvAX1Q7OLg3tvzn9Esy/